A poem by Elizabeth Bishop,
sent to me by a friend
after my mother shared her anxiety about losing things...
The art of losing isn't hard to master;
so many things seem filled with the intent
to be lost that their loss is no disaster.
Lose something every day. Accept the fluster
of lost door keys, the hour badly spent.
The art of losing isn't hard to master.
Then practice losing farther, losing faster:
places, and names, and where it was you meant
to travel. None of these will bring disaster.
I lost my mother's watch. And look! my last, or
next-to-last, of three loved houses went.
The art of losing isn't hard to master.
I lost two cities, lovely ones. And, vaster,
some realms I owned, two rivers, a continent.
I miss them, but it wasn't a disaster.
--Even losing you (the joking voice, a gesture
I love) I shan't have lied. It's evident
the art of losing's not too hard to master
though it may look like (Write it!) like disaster.
~ ~ ~ ~ ~ ~ ~ ~ ~
Wednesday, August 30, 2006
Monday, August 28, 2006
Hints for Coping with LBD
An email arrived with this message:
"I was diagnosed a couple years ago with probable LBD. Any hints for me or my caregiver?
--Chip"
So here are the main things I would advise:
*Remember it is only a tentative diagnosis... some people told they have LBD turn out to have vascular problems (small blood clots that affect the brain) or other forms of dementia rather than LBD.
*Look at the accomplished people who have had LBD (such as Robert McAfee Brown and the publisher of the LA Times) and don't let your self-esteem fall (because you can't remember names or make other mistakes).
*For both you and your caregiver, it's important to accept the illness... to flow with the daily changes and learn about this stage of life, rather than feel resentful about the losses you are experiencing.
*Take precautions to avoid falling. Balance problems are common in LBD. Having dementia is one thing, but breaking a hip and possibly being in a wheelchair is a real inconvenience and has an effect on your overall health.
If I had it to do over, I would have arranged for my mother to have a companion 24/7 or supervision in a group setting sooner. That would have prevented the fall she had in August, 2004. With LBD you get to where you can't remember to use a walker--she left it at the door of her bathroom and fell in the bathroom. Also in the night she will attempt to get out of bed and walk, not remembering that she needs a walker and someone to be at hand.
*Make sure you are taking Exelon and Namenda or some such medicines--they really do halt the decline, as far as my mother and I can tell. And don't be reluctant to take an antidepressant such as Celexa or Remeron. You will need it--my mother struggles with depression.
*Avoid drugs like Restoril, Ativan, Respirdol and Haldol-- all antipsychotics and neuroleptics. These really put my mother into a stupor and can cause irreversible brain damage. They can also cause an anti-neuroleptic reaction (a serious allergic reaction) in LBD patients.
Providing a companion as many hours as possible per day and providing one outing or interesting activity per day are better ways of avoiding the problems for which these drugs are prescribed.
*Be aware of the two biggest signs of LBD:
1) daily fluctuations in your alertness, and
2)hallucinations.
My mother has had LBD for 5-6 years, and at this point she can have one very good, alert, active day--but the next day she will be almost impossible to rouse. She will be dressed and taken to meals but will almost sleep through them. The next day she may be alert again or may have another sleepy day. Sometimes she will have a good morning and be unrousable in the afternoon.
Then there's the occasional agitated day when a dream the night before seems very real and she is reacting to it most of the day, either with anger or fear or grief. I've learned not to report deaths in the family and not to give her bedtime anxiety with statements like "Tomorrow is Easter! I'll be here early to take you to church."
With hallucinations, your caregiver needs to remember just to listen to your reports, commenting with interest, and to avoid contradicting you except when necessary. My mother often reports having seen a child or animal or person that actually was not present, but I don't try to argue her into accepting my version of reality. When she sees people on the street or in a restaurant, she usually recognizes them as family members or friends; I either comment, "Oh, that's interesting" or remind her that her son is in Colorado and we are in California.
As Mae West (I think) said, "Old age--it ain't for sissies!"
Thanks for writing, Chip. Hang in there.
"I was diagnosed a couple years ago with probable LBD. Any hints for me or my caregiver?
--Chip"
So here are the main things I would advise:
*Remember it is only a tentative diagnosis... some people told they have LBD turn out to have vascular problems (small blood clots that affect the brain) or other forms of dementia rather than LBD.
*Look at the accomplished people who have had LBD (such as Robert McAfee Brown and the publisher of the LA Times) and don't let your self-esteem fall (because you can't remember names or make other mistakes).
*For both you and your caregiver, it's important to accept the illness... to flow with the daily changes and learn about this stage of life, rather than feel resentful about the losses you are experiencing.
*Take precautions to avoid falling. Balance problems are common in LBD. Having dementia is one thing, but breaking a hip and possibly being in a wheelchair is a real inconvenience and has an effect on your overall health.
If I had it to do over, I would have arranged for my mother to have a companion 24/7 or supervision in a group setting sooner. That would have prevented the fall she had in August, 2004. With LBD you get to where you can't remember to use a walker--she left it at the door of her bathroom and fell in the bathroom. Also in the night she will attempt to get out of bed and walk, not remembering that she needs a walker and someone to be at hand.
*Make sure you are taking Exelon and Namenda or some such medicines--they really do halt the decline, as far as my mother and I can tell. And don't be reluctant to take an antidepressant such as Celexa or Remeron. You will need it--my mother struggles with depression.
*Avoid drugs like Restoril, Ativan, Respirdol and Haldol-- all antipsychotics and neuroleptics. These really put my mother into a stupor and can cause irreversible brain damage. They can also cause an anti-neuroleptic reaction (a serious allergic reaction) in LBD patients.
Providing a companion as many hours as possible per day and providing one outing or interesting activity per day are better ways of avoiding the problems for which these drugs are prescribed.
*Be aware of the two biggest signs of LBD:
1) daily fluctuations in your alertness, and
2)hallucinations.
My mother has had LBD for 5-6 years, and at this point she can have one very good, alert, active day--but the next day she will be almost impossible to rouse. She will be dressed and taken to meals but will almost sleep through them. The next day she may be alert again or may have another sleepy day. Sometimes she will have a good morning and be unrousable in the afternoon.
Then there's the occasional agitated day when a dream the night before seems very real and she is reacting to it most of the day, either with anger or fear or grief. I've learned not to report deaths in the family and not to give her bedtime anxiety with statements like "Tomorrow is Easter! I'll be here early to take you to church."
With hallucinations, your caregiver needs to remember just to listen to your reports, commenting with interest, and to avoid contradicting you except when necessary. My mother often reports having seen a child or animal or person that actually was not present, but I don't try to argue her into accepting my version of reality. When she sees people on the street or in a restaurant, she usually recognizes them as family members or friends; I either comment, "Oh, that's interesting" or remind her that her son is in Colorado and we are in California.
As Mae West (I think) said, "Old age--it ain't for sissies!"
Thanks for writing, Chip. Hang in there.
Sunday, August 13, 2006
A Crazy Idea
My brother Bill called to talk about maintenance issues at the Trout Lake cabin, and I moved the conversation to the topic of Mom's care and her desire to get to Colorado.
"She may have dementia, but one thing she always talks about is wanting to get back to Colorado. I can't get any caregiver to go with me, and I can't do it alone, but if you could get a week off in September or some time, maybe we could both take her."
"Hmmm... dying woman's last wish," he responded. "Yeah, maybe I could get some time off. I'll look into it."
"I've thought about driving her, but it would mean sitting for so long in the car and many bathroom stops. I could get her on a plane, but I don't see how to do the change of planes in Phoenix onto one of those small planes that you have to walk up the stairway to get into. That's the only kind that flies into Durango. I could fly her to Denver and get her off the plane there; then we could drive to both Boulder and then down to Telluride..."
"Or fly her to Grand Junction. They have bigger planes in Grand Junction," Bill said. "It would only be a three-hour drive from Grand Junction."
"Oh yeah. That might work," I remembered.
We'll see if anything comes of this, but Bill and I might try to take her to Colorado for one last time.
"She may have dementia, but one thing she always talks about is wanting to get back to Colorado. I can't get any caregiver to go with me, and I can't do it alone, but if you could get a week off in September or some time, maybe we could both take her."
"Hmmm... dying woman's last wish," he responded. "Yeah, maybe I could get some time off. I'll look into it."
"I've thought about driving her, but it would mean sitting for so long in the car and many bathroom stops. I could get her on a plane, but I don't see how to do the change of planes in Phoenix onto one of those small planes that you have to walk up the stairway to get into. That's the only kind that flies into Durango. I could fly her to Denver and get her off the plane there; then we could drive to both Boulder and then down to Telluride..."
"Or fly her to Grand Junction. They have bigger planes in Grand Junction," Bill said. "It would only be a three-hour drive from Grand Junction."
"Oh yeah. That might work," I remembered.
We'll see if anything comes of this, but Bill and I might try to take her to Colorado for one last time.
Saturday, August 12, 2006
At the Lone Tree Cemetery
Under cloudy skies the five children and numerous grandchildren, great-grandchildren, and a few others gathered at Lone Tree Cemetery east of Telluride to bury the ashes of Walter Pera, my mother's cousin. They grew up together in Telluride.
One of Walter's daughters read a beautiful account of his life and personality, and then others spoke of their memories.
Davine Pera read letters received from those who hadn't been able to come, like my uncle Herschel Gustafson and my mother.
I added a few words about how Walter had been her favorite cousin, always generous with his time, teaching her to play tennis, and how much she would have liked to be here today.
Then the whole group went to the Swede-Finn Hall for a luncheon reception, after which some returned to the cemetery for the actual interment of the ashes.
By that time it was raining, so the crowd stood under umbrellas. Each of the children put something in the metal box (made by Walter) that held the urn. To take with him in the afterlife, they put in a screwdriver (something he hated to be without), a coffee-boiling can he had made from an old Hills Bros. coffee can and used on elk hunting trips, a silver dollar, a bullet, a root beer barrell (candy), a few letters, and a Finn flag. His parents were Finnish immigrants, and he always maintained an allegiance to Finland, visiting their village in 1985.
The memorials were very moving under the somber sky with the steep slopes of the U-shaped valley disappearing into the low clouds. Walter lived and worked in these mountains, living up at the Tomboy Mine for one year.
He lived his 92 years courageously and finally was buried next to his older brother, August, who was born in 1907 and died in 1943. August's twin died before his second birthday, and a sister born when he was two years old only lived a day. Finally in 1911 a sister was born who lived to age 89, and then in 1914 Walter was born.
What a hard life their mother, Mary Gustafson Pera, had. Her husband died in 1924 of rheumatoid arthritis after being an invalid for several years. Mary took in laundry and ran the town sauna for a living. Walter took picked up dirty laundry on his sled and returned them when cleaned and ironed.
When the mines closed in Telluride during the Depression, the family moved to Durango. Walter returned to Telluride and by 1943 my grandfather, August Gustafson, hired him at the Western Colorado Power Company. I heard some stories of my grandfather's kindness to Walter and his family.
In April there was a fire in Walter's garage in Durango, where he and his wife Allene were living. They had to move to an apartment, and this upset Walter greatly. He no longer had his shop area to tinker in. He had increasing dementia, possibly LBD, but refused to go into any assisted living. He and Allene often ate doughnuts and lemon meringue pie instead of healthy meals.
During a trip to Oregon to visit his daughter there, he contracted pneumonia and was dying. He knew it and wanted to end his suffering.
"Isn't there something you can give me so I can die?" he asked his daughter, two days before his death.
"No, papa," she said.
"I can't die, dammit!" he cursed.
He also asked for a gun, in true pioneer style, but wasn't given one.
Now he rests in peace, surrounded by his beloved mountains.
I walked around and looked at the other family gravesites, thinking about his long and courageous life, wishing my mother could have been here for the family gathering and shared memories.
Within a few years she too will be resting in peace in Colorado, her ashes buried not in this cemetery but at Trout Lake.
One of Walter's daughters read a beautiful account of his life and personality, and then others spoke of their memories.
Davine Pera read letters received from those who hadn't been able to come, like my uncle Herschel Gustafson and my mother.
I added a few words about how Walter had been her favorite cousin, always generous with his time, teaching her to play tennis, and how much she would have liked to be here today.
Then the whole group went to the Swede-Finn Hall for a luncheon reception, after which some returned to the cemetery for the actual interment of the ashes.
By that time it was raining, so the crowd stood under umbrellas. Each of the children put something in the metal box (made by Walter) that held the urn. To take with him in the afterlife, they put in a screwdriver (something he hated to be without), a coffee-boiling can he had made from an old Hills Bros. coffee can and used on elk hunting trips, a silver dollar, a bullet, a root beer barrell (candy), a few letters, and a Finn flag. His parents were Finnish immigrants, and he always maintained an allegiance to Finland, visiting their village in 1985.
The memorials were very moving under the somber sky with the steep slopes of the U-shaped valley disappearing into the low clouds. Walter lived and worked in these mountains, living up at the Tomboy Mine for one year.
He lived his 92 years courageously and finally was buried next to his older brother, August, who was born in 1907 and died in 1943. August's twin died before his second birthday, and a sister born when he was two years old only lived a day. Finally in 1911 a sister was born who lived to age 89, and then in 1914 Walter was born.
What a hard life their mother, Mary Gustafson Pera, had. Her husband died in 1924 of rheumatoid arthritis after being an invalid for several years. Mary took in laundry and ran the town sauna for a living. Walter took picked up dirty laundry on his sled and returned them when cleaned and ironed.
When the mines closed in Telluride during the Depression, the family moved to Durango. Walter returned to Telluride and by 1943 my grandfather, August Gustafson, hired him at the Western Colorado Power Company. I heard some stories of my grandfather's kindness to Walter and his family.
In April there was a fire in Walter's garage in Durango, where he and his wife Allene were living. They had to move to an apartment, and this upset Walter greatly. He no longer had his shop area to tinker in. He had increasing dementia, possibly LBD, but refused to go into any assisted living. He and Allene often ate doughnuts and lemon meringue pie instead of healthy meals.
During a trip to Oregon to visit his daughter there, he contracted pneumonia and was dying. He knew it and wanted to end his suffering.
"Isn't there something you can give me so I can die?" he asked his daughter, two days before his death.
"No, papa," she said.
"I can't die, dammit!" he cursed.
He also asked for a gun, in true pioneer style, but wasn't given one.
Now he rests in peace, surrounded by his beloved mountains.
I walked around and looked at the other family gravesites, thinking about his long and courageous life, wishing my mother could have been here for the family gathering and shared memories.
Within a few years she too will be resting in peace in Colorado, her ashes buried not in this cemetery but at Trout Lake.
Thursday, August 10, 2006
Driving to Colorado
Today I leave to drive to Colorado for Walter Pera's memorial service.
He died in Oregon, visiting his daughter, and his ashes were taken back to Telluride, where they will be placed in Lone Tree Cemetery with a graveside gathering of family sharing memories
about him.
The big question is whether to take Mom. She would love to go to Telluride and to be present for this event, but I don't have anyone to accompany me and I don't see how I could do it alone.
Actually, it is not a question. There's no way it could be done.
Flying, it would be hard to take her wheelchair, commode, walker and to get her on and off the small planes (there's a stairway passengers have to walk down to get off the planes--she could be strapped into a chair and carried down, but that's not easy, and to get to Durango requires a change of planes in Phoenix).
In a car, she'd be sitting in the heat (with AC) as we drove across the desert. We'd have to get her in and out of restrooms, at least one motel... And in Cortez, we'd have to pick up an oxygen tank.
I think through these things and decide, no, there's no way. Then a few hours later I am thinking through whether it would be possible, how it would be done.
The other problem is that I can't tell her I am going.
She would say, "Take me!" And she would be sad that I can't take her. And it would reawaken her sadness over someone dying--Reynold? Walter?
The result would be leaving her upset, possibly agitated and harder to care for by the staff of her residence. So I can't tell her, but I stop to say goodby to her before leaving.
"Mom, I'm leaving for a few days."
"Where are you going?"
"Uh... San Diego."
"Oh, take me with you."
"I can't. Just John and I are going. But I'll be back in a few days."
"When?"
"Wednesday."
"That long?" She is sharp enough to know that's a week.
"Yes, but Connie will be here and Racquel. You'll be fine."
"I just hope I don't have to think any more about Elbert and all the people who have died. That always makes me unhappy."
"Yes, it does, doesn't it. But don't think about that. Connie will take you today to get a manicure and pedicure. And I'll be back soon."
I left to drive across the desert alone, to represent her and our branch of the family at her cousin's memorial service.
He died in Oregon, visiting his daughter, and his ashes were taken back to Telluride, where they will be placed in Lone Tree Cemetery with a graveside gathering of family sharing memories
about him.
The big question is whether to take Mom. She would love to go to Telluride and to be present for this event, but I don't have anyone to accompany me and I don't see how I could do it alone.
Actually, it is not a question. There's no way it could be done.
Flying, it would be hard to take her wheelchair, commode, walker and to get her on and off the small planes (there's a stairway passengers have to walk down to get off the planes--she could be strapped into a chair and carried down, but that's not easy, and to get to Durango requires a change of planes in Phoenix).
In a car, she'd be sitting in the heat (with AC) as we drove across the desert. We'd have to get her in and out of restrooms, at least one motel... And in Cortez, we'd have to pick up an oxygen tank.
I think through these things and decide, no, there's no way. Then a few hours later I am thinking through whether it would be possible, how it would be done.
The other problem is that I can't tell her I am going.
She would say, "Take me!" And she would be sad that I can't take her. And it would reawaken her sadness over someone dying--Reynold? Walter?
The result would be leaving her upset, possibly agitated and harder to care for by the staff of her residence. So I can't tell her, but I stop to say goodby to her before leaving.
"Mom, I'm leaving for a few days."
"Where are you going?"
"Uh... San Diego."
"Oh, take me with you."
"I can't. Just John and I are going. But I'll be back in a few days."
"When?"
"Wednesday."
"That long?" She is sharp enough to know that's a week.
"Yes, but Connie will be here and Racquel. You'll be fine."
"I just hope I don't have to think any more about Elbert and all the people who have died. That always makes me unhappy."
"Yes, it does, doesn't it. But don't think about that. Connie will take you today to get a manicure and pedicure. And I'll be back soon."
I left to drive across the desert alone, to represent her and our branch of the family at her cousin's memorial service.
Saturday, August 05, 2006
Little Women
I took Mom to see a musical version of Little Women today at the Pantages Theater in Hollywood.
It was a big outing, and she enjoyed it. It was a gamble to get tickets because we never know when she will have a sleepy day and be unrousable for most of the day.
Thank goodness, she had a normal day today and was wide awake and attentive during most of the three-hour performance.
There was a kind of box-like platform near the 30th row of seats, on the side, where the usher rolled her in her wheelchair and brought a chair for me.
"Box seats!" I told her.
She wanted popcorn, but they only sold candy.
Now and then I updated her on the facts of the plot, whispering.
She usually whispered back something like, "He's going to rape her!"
"No," I answered. "That's not in this story."
At the end she commented something about "the story of the Marlboro man, who sits next to me in the dining room."
"Yes," I answered. "Ralph sits next to you. He was the first Marlboro man. He's such a gentleman, always polite."
"He never smoked," she says.
"Right... that's why he lived so long." (The second Marlboro man died long ago of lung cancer.)
I think she knows she is in Hollywood and has seen a fancy show with actors, so she's connecting it to her friend in the Reminiscence Neighborhood, the actor who did the Marlboro commercials in the 1950s.
But now she is off and running with another memory: "He called for me to come because he would die in 45 minutes. I came, and he died in my arms."
"That's Elbert," I say. "You went to see Elbert." I don't correct her details: he didn't die in your arms, and the time frame wasn't exactly 45 minutes.
Was it worth it to take her to this show?
I don't know... she enjoyed it, but her mind went to some unusual places with it.
It was a big outing, and she enjoyed it. It was a gamble to get tickets because we never know when she will have a sleepy day and be unrousable for most of the day.
Thank goodness, she had a normal day today and was wide awake and attentive during most of the three-hour performance.
There was a kind of box-like platform near the 30th row of seats, on the side, where the usher rolled her in her wheelchair and brought a chair for me.
"Box seats!" I told her.
She wanted popcorn, but they only sold candy.
Now and then I updated her on the facts of the plot, whispering.
She usually whispered back something like, "He's going to rape her!"
"No," I answered. "That's not in this story."
At the end she commented something about "the story of the Marlboro man, who sits next to me in the dining room."
"Yes," I answered. "Ralph sits next to you. He was the first Marlboro man. He's such a gentleman, always polite."
"He never smoked," she says.
"Right... that's why he lived so long." (The second Marlboro man died long ago of lung cancer.)
I think she knows she is in Hollywood and has seen a fancy show with actors, so she's connecting it to her friend in the Reminiscence Neighborhood, the actor who did the Marlboro commercials in the 1950s.
But now she is off and running with another memory: "He called for me to come because he would die in 45 minutes. I came, and he died in my arms."
"That's Elbert," I say. "You went to see Elbert." I don't correct her details: he didn't die in your arms, and the time frame wasn't exactly 45 minutes.
Was it worth it to take her to this show?
I don't know... she enjoyed it, but her mind went to some unusual places with it.
Wednesday, August 02, 2006
Staph Infection?
I took Mom to the dermatologist for a check up on a small red area below her right breast, where she had a skin cancer removed about four years ago.
It was a routine appointment, and area of the old surgery was fine.
The doctor was worried, however, about the blisters on her neck and chest area, as well as. on her thigh near her crotch.
"How long has she had them?" she asked.
"About a month or more," I said.
"Then it's either a yeast infection or MRSA, methacillin-resistant staphlococcus aureas. I suspect the MRSA because she lives in a residence and these kinds of things get passed around easily from one person to another in those situations. They're very resistant to the usual antibiotics but respond well to Doxycycline."
"Okay, fine," I said, sorry that I hadn't taken much notice of these sores, except urging the caregivers to put Neosporin on them. Actually, they had gotten worse while I was gone.
"The only problem is that Doxycycline, in addition to stomach upset, doesn't work well with Coumadin," she continued. "But if you check her prothrombin time in one week, it should be okay."
"You mean Doxycycline makes her blood tend to clot more or to get thinner?" I asked.
"It makes it thinner, but don't worry about it. We'll just give her two weeks worth of it, and we will monitor her PT times."
Another hazard to watch out for--MRSA. More trips to get her PT times.
There's always a new angle to her care.
It was a routine appointment, and area of the old surgery was fine.
The doctor was worried, however, about the blisters on her neck and chest area, as well as. on her thigh near her crotch.
"How long has she had them?" she asked.
"About a month or more," I said.
"Then it's either a yeast infection or MRSA, methacillin-resistant staphlococcus aureas. I suspect the MRSA because she lives in a residence and these kinds of things get passed around easily from one person to another in those situations. They're very resistant to the usual antibiotics but respond well to Doxycycline."
"Okay, fine," I said, sorry that I hadn't taken much notice of these sores, except urging the caregivers to put Neosporin on them. Actually, they had gotten worse while I was gone.
"The only problem is that Doxycycline, in addition to stomach upset, doesn't work well with Coumadin," she continued. "But if you check her prothrombin time in one week, it should be okay."
"You mean Doxycycline makes her blood tend to clot more or to get thinner?" I asked.
"It makes it thinner, but don't worry about it. We'll just give her two weeks worth of it, and we will monitor her PT times."
Another hazard to watch out for--MRSA. More trips to get her PT times.
There's always a new angle to her care.
Tuesday, August 01, 2006
The Missing Hair-Do
Mom appears to be none the worse for the wear during my almost three-week absence, but I found out that she has not had her hair washed or set since July 12, when she had a perm.
"Don't get your hair done Monday," I said when I left. "You have to skip a week because of your fresh perm."
Mom remembered this and refused to go down to the hair stylist in the building on Monday for her usual appointment.
But the hair stylist interpreted her refusal as an indication that she didn't plan to get her weekly hairdo's any longer. She removed her name from the appointment list, and for the next two Mondays, Mom still did not get a shampoo and set.
When I found out, I spoke with Elisa, the stylist.
"She said no more," Elisa said, righteously.
"But she's on the third floor!" I said. "People on the third floor have dementia. You can't take their word for it and remove them from your list. Don't change anything without talking with me."
"I called your home, but you didn't answer," she said.
Funny that there was no message on my machine... but I again told her, "No changes unless you first speak with me."
Then Elisa said she could not give Mom a shampoo and set today. Since she only comes two days per week, that meant we had to go elsewhere to get it done.
I took Mom out in her wheelchair and we walked until we found a shop that would take walk-in business.
My 9 am visit ended up taking until 5 pm... I also had to get her a manicure because her nails were rough, and she was scratching herself on her chest. Then we had to buy Depends, etc.
"Don't get your hair done Monday," I said when I left. "You have to skip a week because of your fresh perm."
Mom remembered this and refused to go down to the hair stylist in the building on Monday for her usual appointment.
But the hair stylist interpreted her refusal as an indication that she didn't plan to get her weekly hairdo's any longer. She removed her name from the appointment list, and for the next two Mondays, Mom still did not get a shampoo and set.
When I found out, I spoke with Elisa, the stylist.
"She said no more," Elisa said, righteously.
"But she's on the third floor!" I said. "People on the third floor have dementia. You can't take their word for it and remove them from your list. Don't change anything without talking with me."
"I called your home, but you didn't answer," she said.
Funny that there was no message on my machine... but I again told her, "No changes unless you first speak with me."
Then Elisa said she could not give Mom a shampoo and set today. Since she only comes two days per week, that meant we had to go elsewhere to get it done.
I took Mom out in her wheelchair and we walked until we found a shop that would take walk-in business.
My 9 am visit ended up taking until 5 pm... I also had to get her a manicure because her nails were rough, and she was scratching herself on her chest. Then we had to buy Depends, etc.
Monday, July 31, 2006
The Real Thief
I arrived back in the Los Angeles area at 7 pm and went directly to see Mom instead of going home first.
She was glad to see me, but the big topic of conversation among the caregivers was how she had accused everyone of stealing her clothes.
Mom herself did not bring this subject up, so I didn't either in her presence.
As it happened I was wearing a long full skirt from India, comfortable for driving in the car for ten hours, and this skirt was originally Mom's. Six months ago I had removed it from her closet because it is too long and dangerous for her to walk in.
"Actually, I'm the thief," I told Bethlhem and the others. "This skirt I'm wearing is hers!"
We laughed about the whole episode of the stealing of the clothes.
She was glad to see me, but the big topic of conversation among the caregivers was how she had accused everyone of stealing her clothes.
Mom herself did not bring this subject up, so I didn't either in her presence.
As it happened I was wearing a long full skirt from India, comfortable for driving in the car for ten hours, and this skirt was originally Mom's. Six months ago I had removed it from her closet because it is too long and dangerous for her to walk in.
"Actually, I'm the thief," I told Bethlhem and the others. "This skirt I'm wearing is hers!"
We laughed about the whole episode of the stealing of the clothes.
Sunday, July 30, 2006
Giving Up
Despite my resolution not to call, I find myself calling Mom to tell her that I'm almost back to California and will see her soon.
"Hi, Mom. I'm in Flagstaff."
"I wanted to be there. I wanted to meet you in Colorado."
Oh dear. I didn't want to get into a conversation like this.
"But I have to drive across the desert, Mom," I argue. "It's really hot."
"Oh, it is? Well, I'll give it up another year. Every year I give it up." She sounds tired, resigned.
"Oh well, maybe another year," I concede. "I'll see you soon, after dinner. I should be there by 7 pm."
"Good! I want to see you."
"But I won't be there until after dinner," I warn, hoping she won't become agitated waiting for me.
It's so hard to feel her longing to be in Colorado again and know that it will probably never happen.
"Hi, Mom. I'm in Flagstaff."
"I wanted to be there. I wanted to meet you in Colorado."
Oh dear. I didn't want to get into a conversation like this.
"But I have to drive across the desert, Mom," I argue. "It's really hot."
"Oh, it is? Well, I'll give it up another year. Every year I give it up." She sounds tired, resigned.
"Oh well, maybe another year," I concede. "I'll see you soon, after dinner. I should be there by 7 pm."
"Good! I want to see you."
"But I won't be there until after dinner," I warn, hoping she won't become agitated waiting for me.
It's so hard to feel her longing to be in Colorado again and know that it will probably never happen.
Saturday, July 29, 2006
Mancos Memories
I have attended Mancos Days, a parade and celebration of pioneer days in Mancos, Colorado, where my grandmother grew up and my mother spent many summers of her life, as well as one year during the Depression when there was no work in Telluride.
I call Mom, as I have done every two days or so on this vacation. The phone call may be the only event in her day besides going to meals and having a bath.
"Hi Mom, I went to the parade in Mancos today, for Mancos Days. I saw Racene and Martha and Gene and their families. Now I'm at Summit Lake, where Uncle Byron's fox farm used to be."
I want to share with her the happy memories of the past in Mancos, but unfortunately my words trigger a memory that she often recites, a set piece from the past at the fox farm.
"That's where Byron watched us girls one time when we were swimming in the lake. He came and watched, and we told Grandma Brown, but she just said, 'That's Byron. He just does that.'"
I've heard this story so many times.
But this time she adds a few new lines, probably just now invented: "Grandma Brown didn't care. She said, 'He just wants to play with you girls and show you what sex is so you'll be ready to be married.'"
I don't know how to respond to this. Argue, "No, Grandma Brown wouldn't say anything like that" ? Or ignore it? I don't think these are uncovered memories of childhood sexual abuse, but who knows? At any rate, it was a big experience for her as a child, and she feels that her grandmother did not respond appropriately.
The conversation ends, and I put my cell phone down and stare at the lake surrounded by pines with Mesa Verde in the distance behind it.
A beautiful place, but I feel like crying.
I don't know what core experience is at the root of what she has just told me, but I know that I can't call her and have a meaningful conversation about seeing the family at Mancos Days.
She's not there as a person to talk with, especially in phone calls. I resolve not to call again.
I call Mom, as I have done every two days or so on this vacation. The phone call may be the only event in her day besides going to meals and having a bath.
"Hi Mom, I went to the parade in Mancos today, for Mancos Days. I saw Racene and Martha and Gene and their families. Now I'm at Summit Lake, where Uncle Byron's fox farm used to be."
I want to share with her the happy memories of the past in Mancos, but unfortunately my words trigger a memory that she often recites, a set piece from the past at the fox farm.
"That's where Byron watched us girls one time when we were swimming in the lake. He came and watched, and we told Grandma Brown, but she just said, 'That's Byron. He just does that.'"
I've heard this story so many times.
But this time she adds a few new lines, probably just now invented: "Grandma Brown didn't care. She said, 'He just wants to play with you girls and show you what sex is so you'll be ready to be married.'"
I don't know how to respond to this. Argue, "No, Grandma Brown wouldn't say anything like that" ? Or ignore it? I don't think these are uncovered memories of childhood sexual abuse, but who knows? At any rate, it was a big experience for her as a child, and she feels that her grandmother did not respond appropriately.
The conversation ends, and I put my cell phone down and stare at the lake surrounded by pines with Mesa Verde in the distance behind it.
A beautiful place, but I feel like crying.
I don't know what core experience is at the root of what she has just told me, but I know that I can't call her and have a meaningful conversation about seeing the family at Mancos Days.
She's not there as a person to talk with, especially in phone calls. I resolve not to call again.
Thursday, July 27, 2006
"Hopefully I'll Die"
I call my mother to check in with her again.
"Hi, Connie. How's it going?"
"Fine, Anne. Everything's fine. I gave her her bath and now we're watching Lifetime."
"Oh, good," I say, but I'm thinking, No--that channel is off limits now. It has too much sex, and everything that happens, she thinks it happened to her. Rape, murder...
"Could you let me talk to my mother?"
"Hi, Mom, how are you?"
"I'm fine. I'm watching a show on dying. It's about Elbert."
"Oh. Did Ellen come to visit you? I think she did."
"Yes, Ellen came. Or Marie. One of your two girls."
"Good! I'm glad she came. One of my three girls."
"I'm not going to take any more medicine. That's why Elbert died."
"No, Elbert had lymphoma. He didn't get sick from taking medicine."
"Elbert got lymphoma out of this. I'm not going to take it."
"You can take it, Mom. It's just your evening meds. I'll talk to Connie about it."
"Hopefully, I'll die before morning."
"What? You're not going to die before morning!" She sounds so cheerful, matter of fact. Maybe she means the person on the show will die before morning. Or maybe she and that person are one at this point. Oh well.
"I'll be back soon. Take care, Mom. Nice to know that Ellen visited. Can I talk with Connie now?"
"Hi, Connie," I begin.
"I changed the channel," she reports, reading my mind. "It's not on Lifetime now. And I'm about to give her the meds."
"Good! She gets mixed up when she sees things on that channel. I told her to take them... I hope she will."
"No problem, Anne. She'll take them."
"Thanks so much, Connie. Thank you so much for taking care of her while I am gone. I know it's not easy."
Another day of dementia care for Connie.
For me, another day of checking in long distance and not being able to help at all. But at least I've been able to get away.
"It's okay, Anne."
"Hi, Connie. How's it going?"
"Fine, Anne. Everything's fine. I gave her her bath and now we're watching Lifetime."
"Oh, good," I say, but I'm thinking, No--that channel is off limits now. It has too much sex, and everything that happens, she thinks it happened to her. Rape, murder...
"Could you let me talk to my mother?"
"Hi, Mom, how are you?"
"I'm fine. I'm watching a show on dying. It's about Elbert."
"Oh. Did Ellen come to visit you? I think she did."
"Yes, Ellen came. Or Marie. One of your two girls."
"Good! I'm glad she came. One of my three girls."
"I'm not going to take any more medicine. That's why Elbert died."
"No, Elbert had lymphoma. He didn't get sick from taking medicine."
"Elbert got lymphoma out of this. I'm not going to take it."
"You can take it, Mom. It's just your evening meds. I'll talk to Connie about it."
"Hopefully, I'll die before morning."
"What? You're not going to die before morning!" She sounds so cheerful, matter of fact. Maybe she means the person on the show will die before morning. Or maybe she and that person are one at this point. Oh well.
"I'll be back soon. Take care, Mom. Nice to know that Ellen visited. Can I talk with Connie now?"
"Hi, Connie," I begin.
"I changed the channel," she reports, reading my mind. "It's not on Lifetime now. And I'm about to give her the meds."
"Good! She gets mixed up when she sees things on that channel. I told her to take them... I hope she will."
"No problem, Anne. She'll take them."
"Thanks so much, Connie. Thank you so much for taking care of her while I am gone. I know it's not easy."
Another day of dementia care for Connie.
For me, another day of checking in long distance and not being able to help at all. But at least I've been able to get away.
"It's okay, Anne."
Sunday, July 23, 2006
"Stealing My Clothes"
My cell phone rings, and it's Mom. Someone must have helped her to call me.
She is all excited.
"Everyone here is wearing my clothes. They're helping themselves. I counted everything. They took all my clothes, ten outfits, and won't give them back. So I'm calling you. I told them you would make them give the clothes back."
"Oh dear," I answer, trying to figure out how to respond. "They're stealing your clothes?"
"Yes, Connie is and so are the others."
"I don't think Connie would steal your clothes... she must have an outfit that looks like one of yours."
"No, it's mine. She's wearing it. We went to count the outfits in my closet, and they said there were forty, but I said I'm not going one bit further than thirty."
"Let me talk to Connie.... Hi Connie, so my mother is agitated."
"Yes, she thinks we are wearing her clothes. In the dining room, she points at Bethlhem and says, 'She's wearing my outfit!' I took her to her closet and we counted her clothes to see they are all there, but she doesn't believe me."
"Thank you, Connie. That was a good thing to do. I don't know what to say...maybe you can take her out for an ice cream cone."
"Hi, Mom. Well, I'll take care of it when I get back. If anyone has stolen any of your clothes, we'll solve it."
"I told them that Anne will make them give them back."
"Okay. Maybe you'd like to go out with Connie and get an ice cream cone or buy something at the drug store."
"I don't want to but I will if I have to."
Note: Lewy Body Dementia patients have hallucinations, seeing people or things that are not there, or misinterpreting what they see. This is an instance of hallucination--difficult for Mom and for those around her.
She is all excited.
"Everyone here is wearing my clothes. They're helping themselves. I counted everything. They took all my clothes, ten outfits, and won't give them back. So I'm calling you. I told them you would make them give the clothes back."
"Oh dear," I answer, trying to figure out how to respond. "They're stealing your clothes?"
"Yes, Connie is and so are the others."
"I don't think Connie would steal your clothes... she must have an outfit that looks like one of yours."
"No, it's mine. She's wearing it. We went to count the outfits in my closet, and they said there were forty, but I said I'm not going one bit further than thirty."
"Let me talk to Connie.... Hi Connie, so my mother is agitated."
"Yes, she thinks we are wearing her clothes. In the dining room, she points at Bethlhem and says, 'She's wearing my outfit!' I took her to her closet and we counted her clothes to see they are all there, but she doesn't believe me."
"Thank you, Connie. That was a good thing to do. I don't know what to say...maybe you can take her out for an ice cream cone."
"Hi, Mom. Well, I'll take care of it when I get back. If anyone has stolen any of your clothes, we'll solve it."
"I told them that Anne will make them give them back."
"Okay. Maybe you'd like to go out with Connie and get an ice cream cone or buy something at the drug store."
"I don't want to but I will if I have to."
Note: Lewy Body Dementia patients have hallucinations, seeing people or things that are not there, or misinterpreting what they see. This is an instance of hallucination--difficult for Mom and for those around her.
Thursday, July 13, 2006
Scheming To Get To Colorado
I called Mom from Flagstaff tonight to stay in touch with her and give her the vicarious pleasure of the drive to Colorado.
"Hi, Mom. I'm in Flagstaff," I announced.
"Oh, good. I'm coming too. That woman is going to take me, the one with the little dog."
"Oh... you mean Louisa?"
"Yes, she's going to pick me up and drive me."
"Oh, I see."
I don't say, "But she lives in Boulder. It's not convenient for her to pick you up in California and then drive to Telluride."
Louisa did drive Mom to Trout Lake one summer a few years ago, from Boulder, so Mom has a few facts right.
I change the subject, and we talk a bit more.
Then I hang up, wondering if maybe I could take her to Colorado later in the summer.
"Hi, Mom. I'm in Flagstaff," I announced.
"Oh, good. I'm coming too. That woman is going to take me, the one with the little dog."
"Oh... you mean Louisa?"
"Yes, she's going to pick me up and drive me."
"Oh, I see."
I don't say, "But she lives in Boulder. It's not convenient for her to pick you up in California and then drive to Telluride."
Louisa did drive Mom to Trout Lake one summer a few years ago, from Boulder, so Mom has a few facts right.
I change the subject, and we talk a bit more.
Then I hang up, wondering if maybe I could take her to Colorado later in the summer.
Wednesday, July 12, 2006
Not Going to Colorado
Mom's entire goal in life is to get back to Colorado.
Every few days she has another plan on how to do it.
One day she says she will move back to the P.E.O. Chapter House in Colorado Springs, where her mother lived the last four years of her life. When I point out that it would be far away from me, she plans for me to move into the room next to her and live there. I stop arguing against the plans and just murmur assentively.
Another day she is going to go back to Boulder, buy back her house, and live there again.
Other days she is focused on moving back to Trout Lake, near Telluride, and living in her cabin there.
Today I had to tell her that John and I are driving to Colorado for a week. She wants to go with us, but I tell her this is just a trip for John and me. I don't tell her we are going to the annual meeting of the cabin owners at Trout Lake--she would want to attend it.
I've made arrangements for her private caregivers and for my daughters to visit her because I will actually be gone almost three weeks. John will return in a week, but I will attend a conference in North Carolina, then be back in Boulder and Denver visiting family, then briefly back at Trout Lake. I can't tell her that I will be in Boulder.
I don't know if she will be able to last so long without my daily visits, without getting out for church or doctor visits.
She will be on her floor in her residence except for a few trips out in the wheelchair to the local drugstore.
She wants to go but accepts my leaving.
Will she have a medical emergency or an emotional crisis?
We'll see.
Every few days she has another plan on how to do it.
One day she says she will move back to the P.E.O. Chapter House in Colorado Springs, where her mother lived the last four years of her life. When I point out that it would be far away from me, she plans for me to move into the room next to her and live there. I stop arguing against the plans and just murmur assentively.
Another day she is going to go back to Boulder, buy back her house, and live there again.
Other days she is focused on moving back to Trout Lake, near Telluride, and living in her cabin there.
Today I had to tell her that John and I are driving to Colorado for a week. She wants to go with us, but I tell her this is just a trip for John and me. I don't tell her we are going to the annual meeting of the cabin owners at Trout Lake--she would want to attend it.
I've made arrangements for her private caregivers and for my daughters to visit her because I will actually be gone almost three weeks. John will return in a week, but I will attend a conference in North Carolina, then be back in Boulder and Denver visiting family, then briefly back at Trout Lake. I can't tell her that I will be in Boulder.
I don't know if she will be able to last so long without my daily visits, without getting out for church or doctor visits.
She will be on her floor in her residence except for a few trips out in the wheelchair to the local drugstore.
She wants to go but accepts my leaving.
Will she have a medical emergency or an emotional crisis?
We'll see.
Sunday, July 09, 2006
Aftermath of Bad News
When I went to get Mom to take her to church, the staff of Ocean View Assisted Living reported that she had been agitated in the night.
I went to the log and read the following entry:
Evelyn alarm came off @ 2 am. I went to her room to discovered that she was at the edge of her bed. She claimed franicly that her brother just died in a fire. She had a night terror and tought it was real. She didn't want to go back to bed until she had her bra and stockings on. Stanley redirected her autention. Offer her something to drink. She refused. --Sarneva
"I'm sorry, this was all my fault," I told the staff. "I told her yesterday that her cousin had died, and she remembered that her brother died two years ago. Now she's all mixed up."
"Mom, did you have a bad dream last night?" I asked her.
"I was just getting my underclothes on," she answered serenely.
We went to church, and I brought her back to her residence by 2 pm.
I went home, but at 2:30 I got a call from her private caregiver, Racquel, who had arrived for her 2 pm to 10 pm shift.
"She's agitated. Okay, Anne, you will come."
"Wait a minute. What is she doing? I was just with her and she was fine. We went to church."
"She's crying... she says her brother died."
"Let me talk with her. Mom, how are you?"
"I'm just so sad because Reynold died."
"Yes, Reynold died two years ago. You miss him, don't you?"
"Yes, he was a good big brother."
"Racquel would like to take you out to the drug store. Could you go out with her and maybe get an ice cream?"
"I don't want any ice cream, but I can go out if you want me to."
"That would be good... you need to get out in the sunshine and not worry about Reynold. He's fine now."
"All right, I'll go out."
I talked with Racquel and explained that I had just been with Mom for five hours. I was not going to come back to deal with this problem, but I wanted her to take Mom out in the wheelchair for fresh air.
Crisis averted again--but from now on I will not tell Mom when anyone dies. It is too hard for her, too confusing.
I went to the log and read the following entry:
Evelyn alarm came off @ 2 am. I went to her room to discovered that she was at the edge of her bed. She claimed franicly that her brother just died in a fire. She had a night terror and tought it was real. She didn't want to go back to bed until she had her bra and stockings on. Stanley redirected her autention. Offer her something to drink. She refused. --Sarneva
"I'm sorry, this was all my fault," I told the staff. "I told her yesterday that her cousin had died, and she remembered that her brother died two years ago. Now she's all mixed up."
"Mom, did you have a bad dream last night?" I asked her.
"I was just getting my underclothes on," she answered serenely.
We went to church, and I brought her back to her residence by 2 pm.
I went home, but at 2:30 I got a call from her private caregiver, Racquel, who had arrived for her 2 pm to 10 pm shift.
"She's agitated. Okay, Anne, you will come."
"Wait a minute. What is she doing? I was just with her and she was fine. We went to church."
"She's crying... she says her brother died."
"Let me talk with her. Mom, how are you?"
"I'm just so sad because Reynold died."
"Yes, Reynold died two years ago. You miss him, don't you?"
"Yes, he was a good big brother."
"Racquel would like to take you out to the drug store. Could you go out with her and maybe get an ice cream?"
"I don't want any ice cream, but I can go out if you want me to."
"That would be good... you need to get out in the sunshine and not worry about Reynold. He's fine now."
"All right, I'll go out."
I talked with Racquel and explained that I had just been with Mom for five hours. I was not going to come back to deal with this problem, but I wanted her to take Mom out in the wheelchair for fresh air.
Crisis averted again--but from now on I will not tell Mom when anyone dies. It is too hard for her, too confusing.
Saturday, July 08, 2006
Bad News and Dementia
Is there any way to tell a person with dementia that someone has died?
I got a phone call last night that Mom's favorite cousin, Walter Pera, had died on July 4 at the age of 92.
Today I went to visit Mom and tried to gently give her this news. She responded well and appropriately: "Oh, I'm so sorry to hear that. I loved Walter. He used to ask me to dance at school dances when I had no partner. He taught me to play tennis. He and Reynold caught a red fox and tied it to the clothesline. It ran up and down."
"Yes, Walter was wonderful. He was 92 years old. Reynold only made it to 87," I commented.
"What? Reynold died? You didn't tell me that Reynold died," she cried.
"Yes, he died two years ago. I told you but you don't remember because we didn't go to a memorial service. He didn't want one," I said.
But the damage was done. She was grieving all over again, deeply, for her brother. The news of Walter's death was not difficult for her, but re-entering her grief over her brother caused her to become agitated.
I shouldn't have told her about Walter.
Memo: Don't share news of deaths again. It is confusing for her and painful.
I got a phone call last night that Mom's favorite cousin, Walter Pera, had died on July 4 at the age of 92.
Today I went to visit Mom and tried to gently give her this news. She responded well and appropriately: "Oh, I'm so sorry to hear that. I loved Walter. He used to ask me to dance at school dances when I had no partner. He taught me to play tennis. He and Reynold caught a red fox and tied it to the clothesline. It ran up and down."
"Yes, Walter was wonderful. He was 92 years old. Reynold only made it to 87," I commented.
"What? Reynold died? You didn't tell me that Reynold died," she cried.
"Yes, he died two years ago. I told you but you don't remember because we didn't go to a memorial service. He didn't want one," I said.
But the damage was done. She was grieving all over again, deeply, for her brother. The news of Walter's death was not difficult for her, but re-entering her grief over her brother caused her to become agitated.
I shouldn't have told her about Walter.
Memo: Don't share news of deaths again. It is confusing for her and painful.
Wednesday, July 05, 2006
"Take Me to Your House"
It's so hard to make choices that are both good for Mom and good for me.
Yesterday I planned to bring her to my house for three or four hours for July 4th, but after one hour she was demanding to be taken back to her assisted living residence. I concluded that she needs more peace and quiet, fewer big outings.
Today I'm not going to visit her until 3:30 pm, partly because I'm busy with other errands and partly because I think she might be having a sleepy day after being out four hours yesterday. By "sleepy" I mean impossible to rouse when I hold her hands and talk loudly into her face, barely waking for meals. The Lewy Body literature calls the daily changes in alertness "fluctuating cognition."
When I get to her room, however, she is wide awake and angry that I had not come sooner. As a matter of fact, she's also angry at the two caregivers, Marnie Reid and Bethlehem Solomon , who are helping her out of her wheelchair onto the toilet.
"These people don't come when I call them," she says angrily. "I yell and yell and they never come to help."
"But they're helping you now," I note.
"They don't care. 'Why should we bother to help her? Just let her yell' they say."
"We didn't hear you," Marnie says. "Your room is so far from where we are, and we were working with Howard."
"That's what they always say. I'm going to move out of here."
"Mom, they have other people to deal with; Marnie and Bethlehem are the nicest ones here."
"Are you going to fire us again?" Marnie teases.
"They should make sure the pull cord is in your hand, so you can call them that way."
"I told them I was signed up for the show--you always sign me up--but they wouldn't take me."
"You mean the 3 pm music on Wednesdays? I should have gotten here earlier to take you to it."
"Yes, you should have gotten here earlier. You never come when you say you will."
"A group went out to see a movie today," Bethlehem tells me out of Mom's hearing.
"I'm ready to go. I want to go to your house," Mom announces.
"You were there yesterday but you didn't want to stay long. You wanted to come back here."
"I want to go to your house today."
"You can come on Sunday. We'll go to church on Sunday and then to my house, but today is Wednesday. We aren't doing that today. We need to go to Rite-Aid and buy a birthday card for your brother, Herschel."
"Okay. But can't I go to your house?"
"Not really, we can't go every day."
Soon I am pushing her wheelchair to the elevator and outside onto the sidewalk. She is satisfied to be going somewhere, anywhere.
When we reach the greeting card section of the store, she thinks we are looking for a card for my brother Jim, her son.
"No, it's for Herschel, your brother Herschel," I say.
We get a card and then go the to grocery store to buy little cans of V-8 in eight-can packages. She seems to be pretty happy as we wheel back to her residence.
She signs the July birthday cards--one to Herschel and one to her daughter Emily. She enjoys putting the birthday money in Emily's envelope.
I tell her I'm planning to mail her brother a snow globe of Telluride, like the one I gave her.
"That's hard to mail," she comments, and I assure her that I can pack it well. Good to know she can get that far in her thinking.
Connie, her evening caregiver, arrives and I leave, revising my mental notes on her care.
She needs daily excursions of no more than an hour--except on sleepy days.
Without somewhere to go, she gets bored.
With too many hours out, she gets tired and irritable.
Today she was unusually irritable, almost agitated.
Yesterday I planned to bring her to my house for three or four hours for July 4th, but after one hour she was demanding to be taken back to her assisted living residence. I concluded that she needs more peace and quiet, fewer big outings.
Today I'm not going to visit her until 3:30 pm, partly because I'm busy with other errands and partly because I think she might be having a sleepy day after being out four hours yesterday. By "sleepy" I mean impossible to rouse when I hold her hands and talk loudly into her face, barely waking for meals. The Lewy Body literature calls the daily changes in alertness "fluctuating cognition."
When I get to her room, however, she is wide awake and angry that I had not come sooner. As a matter of fact, she's also angry at the two caregivers, Marnie Reid and Bethlehem Solomon , who are helping her out of her wheelchair onto the toilet.
"These people don't come when I call them," she says angrily. "I yell and yell and they never come to help."
"But they're helping you now," I note.
"They don't care. 'Why should we bother to help her? Just let her yell' they say."
"We didn't hear you," Marnie says. "Your room is so far from where we are, and we were working with Howard."
"That's what they always say. I'm going to move out of here."
"Mom, they have other people to deal with; Marnie and Bethlehem are the nicest ones here."
"Are you going to fire us again?" Marnie teases.
"They should make sure the pull cord is in your hand, so you can call them that way."
"I told them I was signed up for the show--you always sign me up--but they wouldn't take me."
"You mean the 3 pm music on Wednesdays? I should have gotten here earlier to take you to it."
"Yes, you should have gotten here earlier. You never come when you say you will."
"A group went out to see a movie today," Bethlehem tells me out of Mom's hearing.
"I'm ready to go. I want to go to your house," Mom announces.
"You were there yesterday but you didn't want to stay long. You wanted to come back here."
"I want to go to your house today."
"You can come on Sunday. We'll go to church on Sunday and then to my house, but today is Wednesday. We aren't doing that today. We need to go to Rite-Aid and buy a birthday card for your brother, Herschel."
"Okay. But can't I go to your house?"
"Not really, we can't go every day."
Soon I am pushing her wheelchair to the elevator and outside onto the sidewalk. She is satisfied to be going somewhere, anywhere.
When we reach the greeting card section of the store, she thinks we are looking for a card for my brother Jim, her son.
"No, it's for Herschel, your brother Herschel," I say.
We get a card and then go the to grocery store to buy little cans of V-8 in eight-can packages. She seems to be pretty happy as we wheel back to her residence.
She signs the July birthday cards--one to Herschel and one to her daughter Emily. She enjoys putting the birthday money in Emily's envelope.
I tell her I'm planning to mail her brother a snow globe of Telluride, like the one I gave her.
"That's hard to mail," she comments, and I assure her that I can pack it well. Good to know she can get that far in her thinking.
Connie, her evening caregiver, arrives and I leave, revising my mental notes on her care.
She needs daily excursions of no more than an hour--except on sleepy days.
Without somewhere to go, she gets bored.
With too many hours out, she gets tired and irritable.
Today she was unusually irritable, almost agitated.
Tuesday, July 04, 2006
Fourth of July
Two years ago Mom and I spent the Fourth of July in Telluride, as usual. We sat in chairs on Main Street to watch the parade, went to the town barbecue afterward, drove back to Trout Lake, and returned in the evening for the fireworks. We carried an oxygen tank everywhere with us, because her own breathing was not sufficient at 8,750 feet. She was 85 years old.
~~~
The year before that she rode in a car in the parade, waving to the crowd as a veteran. Another year earlier, in 2002, she drove herself from Boulder to Telluride, and at the end of the summer she got lost driving herself back to Boulder.
~~~
Last year she wanted to be in Telluride but had just recovered from a week in the hospital after an allergic reaction caused her throat to swell and stopped her breathing. (Sensitivity to drugs is often associated with Lewy Body Disease.) Instead of Telluride, I took her to Denny's, then to my house and in the evening to Marina del Rey for the big fireworks display. She liked it.
Looking back, I realize her thinking was pretty good last Fourth of July. She had lost some memory during her anoxic moments, so she was asking questions like "How's Mother? I haven't visited her lately. And how's Kermit?"
"He died ten years ago," I would tell her. "He died in your arms, remember?"
Each time she was quick to say, "Oh yes, he went to heaven. That's right."
But when I reminded her that her mother had died twenty years ago, she answered, "Why didn't you tell me?"
"You're the one who told me," I would begin, reciting some details of her mother's death and funeral, to her astonishment.
~~~
This year she's not thinking about her mother or her husband. When I arrived in her room at 2:30 pm, she was waiting anxiously for me and proud to be dressed in red, white and blue with new heart-shaped stars-and-stripes earrings. Because she was wearing navy blue pants, she began singing a song from her Navy days that has been running through her mind lately:
"Bell-bottomed trousers, coat of Navy blue--
She loved a sailor, and he loved her too."
She's been adding some off-color verses, which I and the caregivers ignore. I think she makes them up, but she's pretty good at rhyming--maybe this song had that potential sixty years ago as well. (Another aspect of Lewy Body is the loss of inhibitions, complex planning, and other frontal temporal lobe functions. )
Today she starts telling me, "Oh, we had fun last night. My friends and I had fun. And in the morning there were babies everywhere."
The caregiver and I ignore this and compliment her on the patriotic colors of her striped shirt with a red overblouse and dark pants.
"She needs a new pair of pants," Meselech tells me. Her Depends have somehow not been in the right position, so urine has soaked through. I find a pair of black slacks and tell her they are Navy blue. She insists on wearing red shoes.
Soon I am wheeling her to the elevator and to the parking garage. I give her an American flag to hold, along with her black beaded purse with a red-hat bead design and with a red, white and blue bandana we will use as a napkin and bib. I'm wearing a white shirt that says "Fourth of July 2004, Telluride" and navy jogging pants. We are a parade and catch the attention of everyone we pass.
~~~
At home John helps me get her out of the car and into the house. She is happy to arrive, and I show her that I'm baking cinnamon rolls. She notices some cookies, so I set her up at the kitchen table and give her one with milk; then I give her watermelon, then orange Jello with mandarin oranges.
She wants to go to the bathroom, but I tell her she has to wait until an hour passes since her last trip to the toilet. (After my hysterectomy, I can't easily get her out of the wheelchair, onto the port-a-potty, and back to the wheelchair.)
Meanwhile Ellen and Marie and a cousin have come in and out of the kitchen, and Roz arrives.
"Here's Roz. Roz, say hi to Grandma," I say brightly.
"Mom, cut the show-and-tell voice!" Roz says sharply. "You don't have to yell."
I apologize.
The cinnamon rolls are done, and I give Grandma one, but they did not rise well and aren't very sweet. (Because a doctor just found that Marie has sensitivities to sugar cane and wheat gluten, I tried making these rolls with Splenda and with gluten-free flour. Splenda says "measures cup for cup like sugar, great for cooking and baking," but apparently the yeast weren't impressed. The flour was from potatoes, sorghum, tapioca, garbanza, and fava beans; if I hadn't added a little wheat flour, it wouldn't have risen at all.)
At 4:15 Mom suddenly wraps her remaining half cinnamon roll in her napkin and says it is time to go back. She has been here only one hour.
I had been planning to let her stay for three or four hours and eat a dinner of barbecued chicken with us, because it's the Fourth and I've given her private caregiver the night off. I'm not taking her to see any fireworks--it's too many hours out for her and too hard for me.
Surprised that she wants to go back so soon, I coax her to stay longer and realize she'll never make it to 6 or 7 pm when we will eat. I decide to give her a light dinner now.
"Wouldn't you like a hot dog, Mom? I was going to make you a hot dog."
It's her favorite food these days, so she quickly agrees to stay but then demands the hot dog a minute later and keeps demanding it. I show her the pan where I am frying two hot dogs, but she doesn't understand why I don't give her the hot dog right now.
Meanwhile, she starts singing her song, but I interrupt her and change the subject to prevent any off-color verses.
"I better not sing anything bad
Or my mother will get mad," she sings to song's tune.
"My daughter will get mad," she corrects herself, still singing and looking at me.
"Yes, I will," I warn her.
Ellen, 21 years old, is sitting at the kitchen table too. "Oh, don't worry, Grandma. You can't sing anything that I won't like."
She doesn't know the kinds of things Grandma might sing.
~~~
We call my brother Jim, who is in Telluride and reports that the town barbecue was drenched by a thunderstorm. Mom's not interested in Telluride. She tells Jim she's at my house and recites what she's eating.
"These grapes have seeds in them," she tells him, eating another black cherry. "Nuts in them." I'm amazed when she correctly reports the orange Jello with mandarin oranges.
~~~
Finally Marie has gone to work, being hostess at a restaurant; Ellen has left to go to a barbecue with a few friends; Roz has driven the cousin back to Malibu. Mom is impatient to return to her assisted living residence.
"Take me back! I don't want to eat any more," she insists. "I just want to go back."
I don't get it. I'm still focused on my plan of giving her some kind of a nice day. I push her wheelchair around the block, but she's irritable and full of complaints when we hit any small bump. She just wants to be back in her quiet, controlled environment.
Then John and I load her back into the front seat of the van, and I drive her back.
I recall how different she is now from a year ago, and I wonder where she will be in her downhill slide next year. Or will she make it to another Fourth of July?
~~~
Note to myself: Look at local options for nursing homes. She won't need an elegant assisted living residence much longer. Just peace and quiet.
~~~
The year before that she rode in a car in the parade, waving to the crowd as a veteran. Another year earlier, in 2002, she drove herself from Boulder to Telluride, and at the end of the summer she got lost driving herself back to Boulder.
~~~
Last year she wanted to be in Telluride but had just recovered from a week in the hospital after an allergic reaction caused her throat to swell and stopped her breathing. (Sensitivity to drugs is often associated with Lewy Body Disease.) Instead of Telluride, I took her to Denny's, then to my house and in the evening to Marina del Rey for the big fireworks display. She liked it.
Looking back, I realize her thinking was pretty good last Fourth of July. She had lost some memory during her anoxic moments, so she was asking questions like "How's Mother? I haven't visited her lately. And how's Kermit?"
"He died ten years ago," I would tell her. "He died in your arms, remember?"
Each time she was quick to say, "Oh yes, he went to heaven. That's right."
But when I reminded her that her mother had died twenty years ago, she answered, "Why didn't you tell me?"
"You're the one who told me," I would begin, reciting some details of her mother's death and funeral, to her astonishment.
~~~
This year she's not thinking about her mother or her husband. When I arrived in her room at 2:30 pm, she was waiting anxiously for me and proud to be dressed in red, white and blue with new heart-shaped stars-and-stripes earrings. Because she was wearing navy blue pants, she began singing a song from her Navy days that has been running through her mind lately:
"Bell-bottomed trousers, coat of Navy blue--
She loved a sailor, and he loved her too."
She's been adding some off-color verses, which I and the caregivers ignore. I think she makes them up, but she's pretty good at rhyming--maybe this song had that potential sixty years ago as well. (Another aspect of Lewy Body is the loss of inhibitions, complex planning, and other frontal temporal lobe functions. )
Today she starts telling me, "Oh, we had fun last night. My friends and I had fun. And in the morning there were babies everywhere."
The caregiver and I ignore this and compliment her on the patriotic colors of her striped shirt with a red overblouse and dark pants.
"She needs a new pair of pants," Meselech tells me. Her Depends have somehow not been in the right position, so urine has soaked through. I find a pair of black slacks and tell her they are Navy blue. She insists on wearing red shoes.
Soon I am wheeling her to the elevator and to the parking garage. I give her an American flag to hold, along with her black beaded purse with a red-hat bead design and with a red, white and blue bandana we will use as a napkin and bib. I'm wearing a white shirt that says "Fourth of July 2004, Telluride" and navy jogging pants. We are a parade and catch the attention of everyone we pass.
~~~
At home John helps me get her out of the car and into the house. She is happy to arrive, and I show her that I'm baking cinnamon rolls. She notices some cookies, so I set her up at the kitchen table and give her one with milk; then I give her watermelon, then orange Jello with mandarin oranges.
She wants to go to the bathroom, but I tell her she has to wait until an hour passes since her last trip to the toilet. (After my hysterectomy, I can't easily get her out of the wheelchair, onto the port-a-potty, and back to the wheelchair.)
Meanwhile Ellen and Marie and a cousin have come in and out of the kitchen, and Roz arrives.
"Here's Roz. Roz, say hi to Grandma," I say brightly.
"Mom, cut the show-and-tell voice!" Roz says sharply. "You don't have to yell."
I apologize.
The cinnamon rolls are done, and I give Grandma one, but they did not rise well and aren't very sweet. (Because a doctor just found that Marie has sensitivities to sugar cane and wheat gluten, I tried making these rolls with Splenda and with gluten-free flour. Splenda says "measures cup for cup like sugar, great for cooking and baking," but apparently the yeast weren't impressed. The flour was from potatoes, sorghum, tapioca, garbanza, and fava beans; if I hadn't added a little wheat flour, it wouldn't have risen at all.)
At 4:15 Mom suddenly wraps her remaining half cinnamon roll in her napkin and says it is time to go back. She has been here only one hour.
I had been planning to let her stay for three or four hours and eat a dinner of barbecued chicken with us, because it's the Fourth and I've given her private caregiver the night off. I'm not taking her to see any fireworks--it's too many hours out for her and too hard for me.
Surprised that she wants to go back so soon, I coax her to stay longer and realize she'll never make it to 6 or 7 pm when we will eat. I decide to give her a light dinner now.
"Wouldn't you like a hot dog, Mom? I was going to make you a hot dog."
It's her favorite food these days, so she quickly agrees to stay but then demands the hot dog a minute later and keeps demanding it. I show her the pan where I am frying two hot dogs, but she doesn't understand why I don't give her the hot dog right now.
Meanwhile, she starts singing her song, but I interrupt her and change the subject to prevent any off-color verses.
"I better not sing anything bad
Or my mother will get mad," she sings to song's tune.
"My daughter will get mad," she corrects herself, still singing and looking at me.
"Yes, I will," I warn her.
Ellen, 21 years old, is sitting at the kitchen table too. "Oh, don't worry, Grandma. You can't sing anything that I won't like."
She doesn't know the kinds of things Grandma might sing.
~~~
We call my brother Jim, who is in Telluride and reports that the town barbecue was drenched by a thunderstorm. Mom's not interested in Telluride. She tells Jim she's at my house and recites what she's eating.
"These grapes have seeds in them," she tells him, eating another black cherry. "Nuts in them." I'm amazed when she correctly reports the orange Jello with mandarin oranges.
~~~
Finally Marie has gone to work, being hostess at a restaurant; Ellen has left to go to a barbecue with a few friends; Roz has driven the cousin back to Malibu. Mom is impatient to return to her assisted living residence.
"Take me back! I don't want to eat any more," she insists. "I just want to go back."
I don't get it. I'm still focused on my plan of giving her some kind of a nice day. I push her wheelchair around the block, but she's irritable and full of complaints when we hit any small bump. She just wants to be back in her quiet, controlled environment.
Then John and I load her back into the front seat of the van, and I drive her back.
I recall how different she is now from a year ago, and I wonder where she will be in her downhill slide next year. Or will she make it to another Fourth of July?
~~~
Note to myself: Look at local options for nursing homes. She won't need an elegant assisted living residence much longer. Just peace and quiet.
Thursday, June 08, 2006
Fashion Queen at the Doctor's
Hooray! Mom got through two months without seeing a doctor or making a trip to the emergency room--for the first time in years.
Her doctor visit today was just a check-up, optimistically scheduled two months ago in the hope that she could last that long without any intervening trips. And she made it.
All her meds seem to be adjusted just right, from Coumadin to keep her blood thin and prevent blood clots to Exelon and Remeron, to keep her mood stabilized.
However, the doctor she's been seeing for a year and a half is now on medical leave until January for a pregnancy, so we had to see another doctor from the same practice.
I figured this doctor, who is at a different location, would have Mom's chart and all her information.
Wrong. The most recent visit available by computer was last January, so the doctor had no idea what current issues she was supposed to be checking on.
After reviewing Mom's vitals taken today, she was basically leaving the agenda up to me:
"What concerns do you have?'
I was unprepared. Except for information about Mom's visit to the orthotics specialist and his concerns about the contractures of her feet (both equino and varus), I didn't have much to say. I didn't bring the notes from our last doctor visit.
"Since last November, Dr. Charette has had her meds pretty well calibrated... her health is fairly stabilized."
I mentioned Lewy Body, the broken hip two years ago, and the angioedema of the tongue and throat a year ago this month. Forgot to mention the pacemaker put in last September.
Mom tried to tell a dramatic story about a delivery in which one more baby was found amid the afterbirth.
Actually, the whole visit was kind of pointless, except that we met Dr. Rosen.
John tried to get me to cancel the appointment because I realized just yesterday that I'm not really up to pushing the wheelchair from Ocean View to the doctor's office and back. I didn't want to cancel, so he kindly ended up pushing the wheelchair over and returning in an hour for us.
Afterward seeing Dr. Rosen, she and I went to the lab to have her blood drawn and check her prothrombin time.
"Whoa, here's the fashion queen!" the phlebotomist greeted her.
And yes, her outfit today was a bit dramatic, as usual: a long-sleeved white shell with a pink seersucker sleeveless blouse over it (why, I'm not sure), pink slacks, her best pearls, a matching pearl bracelet, and her pressed-orchid see-through handbag made from real flowers, all in pink. With of course, her rabbit-fur trimmed sweater around her shoulders, rose lipstick, and a touch of pink make-up on her cheekbones.
"What a tight sweater!" the lady continued. "Is your daughter trying to get you a doctor for a husband?"
Afterward: "Bye, Miss Evelyn! See you next month."
I thought I was pushing around the star of Hello, Dolly!
Her doctor visit today was just a check-up, optimistically scheduled two months ago in the hope that she could last that long without any intervening trips. And she made it.
All her meds seem to be adjusted just right, from Coumadin to keep her blood thin and prevent blood clots to Exelon and Remeron, to keep her mood stabilized.
However, the doctor she's been seeing for a year and a half is now on medical leave until January for a pregnancy, so we had to see another doctor from the same practice.
I figured this doctor, who is at a different location, would have Mom's chart and all her information.
Wrong. The most recent visit available by computer was last January, so the doctor had no idea what current issues she was supposed to be checking on.
After reviewing Mom's vitals taken today, she was basically leaving the agenda up to me:
"What concerns do you have?'
I was unprepared. Except for information about Mom's visit to the orthotics specialist and his concerns about the contractures of her feet (both equino and varus), I didn't have much to say. I didn't bring the notes from our last doctor visit.
"Since last November, Dr. Charette has had her meds pretty well calibrated... her health is fairly stabilized."
I mentioned Lewy Body, the broken hip two years ago, and the angioedema of the tongue and throat a year ago this month. Forgot to mention the pacemaker put in last September.
Mom tried to tell a dramatic story about a delivery in which one more baby was found amid the afterbirth.
Actually, the whole visit was kind of pointless, except that we met Dr. Rosen.
John tried to get me to cancel the appointment because I realized just yesterday that I'm not really up to pushing the wheelchair from Ocean View to the doctor's office and back. I didn't want to cancel, so he kindly ended up pushing the wheelchair over and returning in an hour for us.
Afterward seeing Dr. Rosen, she and I went to the lab to have her blood drawn and check her prothrombin time.
"Whoa, here's the fashion queen!" the phlebotomist greeted her.
And yes, her outfit today was a bit dramatic, as usual: a long-sleeved white shell with a pink seersucker sleeveless blouse over it (why, I'm not sure), pink slacks, her best pearls, a matching pearl bracelet, and her pressed-orchid see-through handbag made from real flowers, all in pink. With of course, her rabbit-fur trimmed sweater around her shoulders, rose lipstick, and a touch of pink make-up on her cheekbones.
"What a tight sweater!" the lady continued. "Is your daughter trying to get you a doctor for a husband?"
Afterward: "Bye, Miss Evelyn! See you next month."
I thought I was pushing around the star of Hello, Dolly!
Sunrise, Sunset
John and I went to visit another assisted living that is building and acquiring new residences in the Los Angeles area. I like to keep aware of other housing options for Mom.
As we walked in the door to the elegant lobby, languid piano and saxophone from some jazz music of the 1940s floated in the air.
"Music playing... coffee flowing... Club Sunset!" commented John.
"Sun-rise, John! Sun-rise!" I corrected him.
As we walked in the door to the elegant lobby, languid piano and saxophone from some jazz music of the 1940s floated in the air.
"Music playing... coffee flowing... Club Sunset!" commented John.
"Sun-rise, John! Sun-rise!" I corrected him.
Wednesday, June 07, 2006
Something So Trivial
I'm trying to recruit one of my kids to help me get my mother to the P.E.O. meeting on Friday, the first one since May 5, the last one until October. I can't get Mom in and out of the car because I'm only two weeks past my hysterectomy--no heavy lifting.
One daughter has to work at 11:30 am on Friday, the other at 11 am. They are both college students home for the summer.
They usually get up at 10 am, having been up until 1 or 2 am, so one of them has to adjust her lifestyle for Grandma unless I give up and locate some taxi that can take a wheelchair.
"Why does Grandma have to go to P.E.O.?" asks Marie.
"She enjoys it," I argue. "She doesn't have that many things in her life, and she gets bored. I can pay you because otherwise I'm going to have to pay either a caregiver or a taxi driver."
"You don't have to pay me," moans Marie. "I can do it."
"Really? That would be great. But I will pay you, really."
"I don't want to fight about something so trivial!" she shouts.
Trivial?
A P.E.O. meeting trivial?
This meeting is the almost biggest event in my life for the whole month of June. I've been calculating how to get there, how to get Mom there, in spite of the ban on me doing any lifting. It's been on my calendar for two months.
And don't get me started on how much it means to Mom. She is bored. She hasn't left her building since May 18 except for one ride around the block in her wheelchair.
One way or another, we will get there.
One daughter has to work at 11:30 am on Friday, the other at 11 am. They are both college students home for the summer.
They usually get up at 10 am, having been up until 1 or 2 am, so one of them has to adjust her lifestyle for Grandma unless I give up and locate some taxi that can take a wheelchair.
"Why does Grandma have to go to P.E.O.?" asks Marie.
"She enjoys it," I argue. "She doesn't have that many things in her life, and she gets bored. I can pay you because otherwise I'm going to have to pay either a caregiver or a taxi driver."
"You don't have to pay me," moans Marie. "I can do it."
"Really? That would be great. But I will pay you, really."
"I don't want to fight about something so trivial!" she shouts.
Trivial?
A P.E.O. meeting trivial?
This meeting is the almost biggest event in my life for the whole month of June. I've been calculating how to get there, how to get Mom there, in spite of the ban on me doing any lifting. It's been on my calendar for two months.
And don't get me started on how much it means to Mom. She is bored. She hasn't left her building since May 18 except for one ride around the block in her wheelchair.
One way or another, we will get there.
Tuesday, June 06, 2006
Election Day Again
"I'm surprised they didn't recruit your mother to work at the polls," John said as we walked back to the car after voting at 8:30 am.
The poll workers were a bit confused. They weren't sure how to handle the two of us: me registered Green as well as dropping off Mom's absentee ballot and my husband registered Independent and voting in the Democratic primary.
"What is your mother's address? Not this precinct?"
"Look, it says I can drop off this absentee ballot at any precinct," I argued. "It doesn't have to be her precinct."
"Yeah? Well, okay, drop it right in here. Now, what is your name and address? Sign your name here."
"But the page is upside down... I'll sign but it will be upside down on the page."
"That's okay... that's the way it was printed."
"Shall I just go to any booth?"
"Well, are you going to vote Democratic?"
"No, I'm voting Green."
I stepped up to a random booth, slipped the ballot in the slot of the device, and voted all the nonpartisan offices before I realized I could not vote Green in this booth. There were no pages for the Green candidates. It was a Democratic booth.
So I inked the "nonpartisan voters voting democratic" slot and selected from the Democratic candidates, which in the primary was probably more useful than just voting Green.
~ ~ ~
Mom and I had completed her absentee ballot on Sunday. This time she was not getting the thrill of dropping her own ballot in the box at the polling place; because of my recent surgery, I could not push her wheelchair there.
She's a registered Republican, and I discovered that helping her vote in a primary is harder than in a general election, where she votes the straight Republican ticket.
In the primary, she (that is, I) had to choose between various Republican candidates.
For example, in the race for California state Controller, her choices were between the guy who is endorsed by the Howard Jarvis Taxpayers Association and the guy who in his candidate statement promises "I will support efforts to secure our border against terrorists, criminals, and illegal immigration. That will save billions of dollars spent on the jailing of illegal immigrants who are rapists, burlars, murderers, and other convicted criminals."
Tough choice--she's neither especially anti-immigrant nor especially concerned about protecting her financial resources from school expenditures and other social programs. And both candidates are appalling to me!
Conclusion: maybe it's time to stop trying to help her vote in elections.
I could just pretend no election is happening and leave her one more step removed from her earlier life.
The poll workers were a bit confused. They weren't sure how to handle the two of us: me registered Green as well as dropping off Mom's absentee ballot and my husband registered Independent and voting in the Democratic primary.
"What is your mother's address? Not this precinct?"
"Look, it says I can drop off this absentee ballot at any precinct," I argued. "It doesn't have to be her precinct."
"Yeah? Well, okay, drop it right in here. Now, what is your name and address? Sign your name here."
"But the page is upside down... I'll sign but it will be upside down on the page."
"That's okay... that's the way it was printed."
"Shall I just go to any booth?"
"Well, are you going to vote Democratic?"
"No, I'm voting Green."
I stepped up to a random booth, slipped the ballot in the slot of the device, and voted all the nonpartisan offices before I realized I could not vote Green in this booth. There were no pages for the Green candidates. It was a Democratic booth.
So I inked the "nonpartisan voters voting democratic" slot and selected from the Democratic candidates, which in the primary was probably more useful than just voting Green.
~ ~ ~
Mom and I had completed her absentee ballot on Sunday. This time she was not getting the thrill of dropping her own ballot in the box at the polling place; because of my recent surgery, I could not push her wheelchair there.
She's a registered Republican, and I discovered that helping her vote in a primary is harder than in a general election, where she votes the straight Republican ticket.
In the primary, she (that is, I) had to choose between various Republican candidates.
For example, in the race for California state Controller, her choices were between the guy who is endorsed by the Howard Jarvis Taxpayers Association and the guy who in his candidate statement promises "I will support efforts to secure our border against terrorists, criminals, and illegal immigration. That will save billions of dollars spent on the jailing of illegal immigrants who are rapists, burlars, murderers, and other convicted criminals."
Tough choice--she's neither especially anti-immigrant nor especially concerned about protecting her financial resources from school expenditures and other social programs. And both candidates are appalling to me!
Conclusion: maybe it's time to stop trying to help her vote in elections.
I could just pretend no election is happening and leave her one more step removed from her earlier life.
Wednesday, May 31, 2006
Who Lost the Uterus?
Because Mom had an agitated day yesterday, I decide I need to visit her today, for the first time since my surgery a week ago.
I arrange for Marie to drop me off in the mid-afternoon because I'm not yet allowed to drive. I walk up the steps and around to the elevator, arrive on her floor, and walk all the way around to her room--my exercise for the day.
When I arrive, she's in her recliner, sound asleep.
"Hi, Mom. How are you? Open your eyes!"
I can't rouse her. I take her hands in mine, pat her cheeks. No reaction.
It's as if her computer won't boot up. My big effort to come see her is all for nothing. I should have remembered that after an agitated day, she almost always has a sleepy day. These variations are a main symptom of Lewy Body Dementia.
Meselech, one of the caregivers at Ocean View, comes into the room.
"Hi--I was just going to take her to the bathroom," she says. "But I see she's still sleeping, and you're here. I'll take her later."
"She's having a sleepy day," I reflect.
"Yes, she has been sleeping all afternoon, and in the morning too, they said." Meselech is the caregiver in charge of Mom and several other residents for the 2 -10 pm shift. An immigrant from Ethiopia, she is kind and has a great sense of humor.
"Yesterday she was crying," Meselech tells me. "She was saying, 'My daughter! She's going to die.'"
"Yes, Connie told me."
"She was saying, 'She has nothing to eat! I have to take her some fruit.'
"I said, 'She has a husband and daughter. They will give her food.'
"But she said, 'No, her husband doesn't give her healthy food.'"
"Oh Meselech, that's why she was so agitated! When I was talking with her on the phone on Sunday, she asked if John was cooking for me, and I said, 'Not really. Last night he ordered a pizza, but he didn't make a salad or serve anything healthy like fruit.' So that's where she got the idea that she needed to bring me fruit!"
Turning to Mom, I try again. "Mom, it's Anne! I came to visit you! Wake up!" I shout.
"I had my uterus out," Mom mumbles, her eyes still closed.
"No, I did! I'm the one who had a uterus out," I say, laughing with Meselech.
"Yes? Oh..." she says, groggy.
"Open your eyes."
"I will when I get around to it."
"Talk to me."
"What do you want me to say?"
"Anything. Do you need to go to the bathroom?" I suggest. "Meselech, could you take her? Maybe it will wake her up."
Meselech helps her out of the recliner, into the wheelchair, and into the bathroom.
I sit down and lie back in Mom's recliner to rest.
Soon I hear Mom singing:
I love you truly, truly dear.
Life with its sorrows,
Life with its tear.
Then she is singing "Happy Birthday to you..."
Why? Did Meselech ask her to sing? I don't know, but at least she's waking up.
"Did you have fun in your surgery?" Mom asks me when they return.
"Yes," I say. Meselech is pointing out to me that Mom has a bump on the top of her head. She complains when Meselech touches it. How did she get it? Meselech and I are puzzled.
"You're sitting in my chair," Mom says, not pleased.
"Oh, I'm sorry," I say. "But it's almost dinner time. No need for you to move to this chair."
"She missed you so much last week," Meselech tells me. "She always say, 'I have to go to Anne's house.'"
"You like to go to my house, don't you?" I say to Mom.
"I used to. But now you've gotten so sassy, I don't care about it." She's angry with me, perhaps because I am sitting in her chair. I change the subject.
"Your hair still looks good. That was nice of Elisa to come to work as usual on Veterans Day."
"I'm a veteran. I deserve to be one too. I'm a four-year veteran."
"Yes, you are. Well, it's time to go to dinner now. I'm going to leave. You should walk to dinner, get some exercise. Meselech, can you help her walk to dinner?"
"Of course," she says, going to get the walker.
"Which one of us had a uterus out?" Mom asks, out of the blue.
"I did. I had a hysterectomy last week."
"Oh, that's right."
Meselech pulls Mom to her feet, and after a couple of steps she attains a precarious balance.
We set off down the hall for the dining room.
I arrange for Marie to drop me off in the mid-afternoon because I'm not yet allowed to drive. I walk up the steps and around to the elevator, arrive on her floor, and walk all the way around to her room--my exercise for the day.
When I arrive, she's in her recliner, sound asleep.
"Hi, Mom. How are you? Open your eyes!"
I can't rouse her. I take her hands in mine, pat her cheeks. No reaction.
It's as if her computer won't boot up. My big effort to come see her is all for nothing. I should have remembered that after an agitated day, she almost always has a sleepy day. These variations are a main symptom of Lewy Body Dementia.
Meselech, one of the caregivers at Ocean View, comes into the room.
"Hi--I was just going to take her to the bathroom," she says. "But I see she's still sleeping, and you're here. I'll take her later."
"She's having a sleepy day," I reflect.
"Yes, she has been sleeping all afternoon, and in the morning too, they said." Meselech is the caregiver in charge of Mom and several other residents for the 2 -10 pm shift. An immigrant from Ethiopia, she is kind and has a great sense of humor.
"Yesterday she was crying," Meselech tells me. "She was saying, 'My daughter! She's going to die.'"
"Yes, Connie told me."
"She was saying, 'She has nothing to eat! I have to take her some fruit.'
"I said, 'She has a husband and daughter. They will give her food.'
"But she said, 'No, her husband doesn't give her healthy food.'"
"Oh Meselech, that's why she was so agitated! When I was talking with her on the phone on Sunday, she asked if John was cooking for me, and I said, 'Not really. Last night he ordered a pizza, but he didn't make a salad or serve anything healthy like fruit.' So that's where she got the idea that she needed to bring me fruit!"
Turning to Mom, I try again. "Mom, it's Anne! I came to visit you! Wake up!" I shout.
"I had my uterus out," Mom mumbles, her eyes still closed.
"No, I did! I'm the one who had a uterus out," I say, laughing with Meselech.
"Yes? Oh..." she says, groggy.
"Open your eyes."
"I will when I get around to it."
"Talk to me."
"What do you want me to say?"
"Anything. Do you need to go to the bathroom?" I suggest. "Meselech, could you take her? Maybe it will wake her up."
Meselech helps her out of the recliner, into the wheelchair, and into the bathroom.
I sit down and lie back in Mom's recliner to rest.
Soon I hear Mom singing:
I love you truly, truly dear.
Life with its sorrows,
Life with its tear.
Then she is singing "Happy Birthday to you..."
Why? Did Meselech ask her to sing? I don't know, but at least she's waking up.
"Did you have fun in your surgery?" Mom asks me when they return.
"Yes," I say. Meselech is pointing out to me that Mom has a bump on the top of her head. She complains when Meselech touches it. How did she get it? Meselech and I are puzzled.
"You're sitting in my chair," Mom says, not pleased.
"Oh, I'm sorry," I say. "But it's almost dinner time. No need for you to move to this chair."
"She missed you so much last week," Meselech tells me. "She always say, 'I have to go to Anne's house.'"
"You like to go to my house, don't you?" I say to Mom.
"I used to. But now you've gotten so sassy, I don't care about it." She's angry with me, perhaps because I am sitting in her chair. I change the subject.
"Your hair still looks good. That was nice of Elisa to come to work as usual on Veterans Day."
"I'm a veteran. I deserve to be one too. I'm a four-year veteran."
"Yes, you are. Well, it's time to go to dinner now. I'm going to leave. You should walk to dinner, get some exercise. Meselech, can you help her walk to dinner?"
"Of course," she says, going to get the walker.
"Which one of us had a uterus out?" Mom asks, out of the blue.
"I did. I had a hysterectomy last week."
"Oh, that's right."
Meselech pulls Mom to her feet, and after a couple of steps she attains a precarious balance.
We set off down the hall for the dining room.
Tuesday, May 30, 2006
Mom to the Rescue!
Mom has decided I have cancer. She's trying to commandeer a taxi to bring me fruit. The first phone call comes about 5 pm.
"Anne, this is Connie. Could you talk to your mother? She's worried and crying."
"What's wrong?"
"She says, 'My daughter has cancer in the uterus. I have to get a cab to take food to her.' She's been doing this all afternoon, telling this to everyone.
"I tell her 'No, Anne is fine. She had surgery, but she's fine now. Why are you crying?'
"But still she is saying, 'I want to go to Anne. I want to take her some fruit.'
"She keeps crying with real tears and saying, 'Connie, let's go take a cab.'
"I tell her 'I'm still doing the laundry--we can't go now.'
" 'I'll go by myself,' she says. 'Bring me to the first floor--I'll call a cab.'
"I tell her, 'Later we will call Anne, after dinner.' So could you talk to her? Just tell her she can't take a taxi."
"Okay," I promise.
"Mom, how are you today?" I begin.
"I'm all right, but come November I'm going to move to that place."
"What place?"
"P.E.O."
"Okay... you like the P.E.O. sisters, don't you?"
"Yes, and I'm going to do it, no matter what you say."
"Okay... well, did you have a good dinner?"
"Yes, we had afro-daisics. It's when you eat the stuff off the leaves."
"Right... okay."
"Well, I'm going to get some fruit. I'll see you soon. Goodbye, dear."
She hangs up, and I wonder why she hasn't raised the subject of taking a taxi. I'm not going to bring it up if she doesn't.
~~~
The phone rings again.
"Anne, could you talk to your Mom again? She thinks she is coming over to see you right now."
"Oh, I'm sorry I didn't make that clear to her, that she can't come.... Hi, Mom."
"This is your mother. I'm going to get a cab and come see you."
"That wouldn't be a good idea, Mom."
"They don't want to take me downstairs, but I'm going to do it anyway."
"Mom, how would you get in and out of the cab?"
Silence on the other end of the phone line. She is thinking this one over.
I'm silent too, giving her time to remember that she can't walk, can't get in and out of her wheelchair without help.
"Mom, I'll send Marie over. She can pick up the fruit and bring it to me."
"Well, that would be okay. You could send Marie over?"
"Yes."
"But I can't ever find that Kuhner's. And I'm worried about Marie--she's marrying an Israelite."
"Mom, she's not marrying anybody. She's just 19. She's dating a guy who's Iranian and Jewish, but she's not getting married any time soon."
"She's not? Well, okay."
The storm subsides.
Marie takes time out of her evening social schedule to stop by Grandma's, but by that time Grandma is calmed down, almost asleep.
"Anne, this is Connie. Could you talk to your mother? She's worried and crying."
"What's wrong?"
"She says, 'My daughter has cancer in the uterus. I have to get a cab to take food to her.' She's been doing this all afternoon, telling this to everyone.
"I tell her 'No, Anne is fine. She had surgery, but she's fine now. Why are you crying?'
"But still she is saying, 'I want to go to Anne. I want to take her some fruit.'
"She keeps crying with real tears and saying, 'Connie, let's go take a cab.'
"I tell her 'I'm still doing the laundry--we can't go now.'
" 'I'll go by myself,' she says. 'Bring me to the first floor--I'll call a cab.'
"I tell her, 'Later we will call Anne, after dinner.' So could you talk to her? Just tell her she can't take a taxi."
"Okay," I promise.
"Mom, how are you today?" I begin.
"I'm all right, but come November I'm going to move to that place."
"What place?"
"P.E.O."
"Okay... you like the P.E.O. sisters, don't you?"
"Yes, and I'm going to do it, no matter what you say."
"Okay... well, did you have a good dinner?"
"Yes, we had afro-daisics. It's when you eat the stuff off the leaves."
"Right... okay."
"Well, I'm going to get some fruit. I'll see you soon. Goodbye, dear."
She hangs up, and I wonder why she hasn't raised the subject of taking a taxi. I'm not going to bring it up if she doesn't.
~~~
The phone rings again.
"Anne, could you talk to your Mom again? She thinks she is coming over to see you right now."
"Oh, I'm sorry I didn't make that clear to her, that she can't come.... Hi, Mom."
"This is your mother. I'm going to get a cab and come see you."
"That wouldn't be a good idea, Mom."
"They don't want to take me downstairs, but I'm going to do it anyway."
"Mom, how would you get in and out of the cab?"
Silence on the other end of the phone line. She is thinking this one over.
I'm silent too, giving her time to remember that she can't walk, can't get in and out of her wheelchair without help.
"Mom, I'll send Marie over. She can pick up the fruit and bring it to me."
"Well, that would be okay. You could send Marie over?"
"Yes."
"But I can't ever find that Kuhner's. And I'm worried about Marie--she's marrying an Israelite."
"Mom, she's not marrying anybody. She's just 19. She's dating a guy who's Iranian and Jewish, but she's not getting married any time soon."
"She's not? Well, okay."
The storm subsides.
Marie takes time out of her evening social schedule to stop by Grandma's, but by that time Grandma is calmed down, almost asleep.
Monday, May 29, 2006
Memorial Day
Thank goodness Mom's private caregiver came to work today, though it's a holiday. I'm still lying in bed most of the day after my surgery last Tuesday.
I tried repeatedly to call Mom earlier in the day, but no one was answering the phones at Ocean View Assisted Living. Probably they were short-staffed; the few that were there could not get to the phone.
At 5 pm Connie arrived to manage Mom until 10 pm, so I was able to call her.
"Hi, Mom. How are you doing?" I began.
"Terrible!"
"Terrible... why are things terrible?"
"Because I get so scared... Because my bones are broken and I don't think they'll ever work again."
"Mom, your bones are not broken. You can walk with your walker. Did you get your hair done today?"
"Yes, but she almost burns me. I just have to yell and tell her to stop. She always says 'Move your tush!' She uses that French word for your bottom."
"That's nice that Elisa came in today. It's Memorial Day... she could have stayed home."
"I guess I'm going to be stuck forever," Mom continued. "I'd like to go somewhere every day."
"Where would you like to go?"
"I'd like to go back to where I was, if they'd take me. I just can't go on like this forever."
She is bored and lonely. She has not left the building for eleven days, except for going around the block to Rite-Aid for an ice cream cone four days ago.
If she had Alzheimer's, this would be okay. But with Lewy Body Dementia, she recalls her recent past enough to be frustrated with not going anywhere.
I tried repeatedly to call Mom earlier in the day, but no one was answering the phones at Ocean View Assisted Living. Probably they were short-staffed; the few that were there could not get to the phone.
At 5 pm Connie arrived to manage Mom until 10 pm, so I was able to call her.
"Hi, Mom. How are you doing?" I began.
"Terrible!"
"Terrible... why are things terrible?"
"Because I get so scared... Because my bones are broken and I don't think they'll ever work again."
"Mom, your bones are not broken. You can walk with your walker. Did you get your hair done today?"
"Yes, but she almost burns me. I just have to yell and tell her to stop. She always says 'Move your tush!' She uses that French word for your bottom."
"That's nice that Elisa came in today. It's Memorial Day... she could have stayed home."
"I guess I'm going to be stuck forever," Mom continued. "I'd like to go somewhere every day."
"Where would you like to go?"
"I'd like to go back to where I was, if they'd take me. I just can't go on like this forever."
She is bored and lonely. She has not left the building for eleven days, except for going around the block to Rite-Aid for an ice cream cone four days ago.
If she had Alzheimer's, this would be okay. But with Lewy Body Dementia, she recalls her recent past enough to be frustrated with not going anywhere.
Saturday, May 27, 2006
Hallucinations Again
Mom calls me in the evening--that is, her weekend caregiver Racquel calls for her.
"Did you have a nice visit with Emily?" I ask.
"No, it was worse than ever," she says. "I love her and she's a sweet girl, but she tries to tell me what to do."
"Just like I do," I say.
"Yes," she says. "Did you know she had a little four-year-old girl?"
"What?"
"She was with her. She looked just like Emily at that age."
"Mom, Emily didn't have a baby recently."
"Well, maybe they had it illegitimately and hid it. They must have. It looked just like her."
"No, Mom."
"When we were leaving Japan, we heard that a haberdasher had been appointed president. But he reached out his hand to a bomb and couldn't be sworn in. He died a year later. Maybe they'll appoint a DAR now. He wanted Emily Lincoln."
"We're you watching a tv show about this, Mom?"
"Yes... This is a heck of a place. I'm thinking of moving out to the PEOs."
"Oh, you are? You like the PEO sisters, don't you?"
"Yes, I think I'll move into their place," she concluded. Then suddenly: "I have these scabs on my chest, and I wonder if they're going to turn into cancer."
"No, Mom. You get scabs from scratching. It's not cancer. Okay, Mom, thanks for calling."
"I wonder about that little girl with Emily. She didn't introduce me to her. I wonder what her name is."
"Mom, you must have been asleep, dreaming."
"Oh, I have good dreams!"
"Yes, you do."
"I heard that bears are running around in occupied places. Good thing Elbert died when he did or he'd have been eaten by one. It's a wonder I wasn't eaten by one."
"Yes, it's a wonder. But Mom, there are no bears in Santa Irena, so don't worry about it."
"Are you sure?"
"Santa Irena is a beach place. There's no forest. Bears are only in Colorado."
"That same man got me dressed today. He didn't call me sweetheart. He called me 'beautiful lady.'"
"Okay, Mom. Nice talking to you. I'll talk with you tomorrow."
"Did you have a nice visit with Emily?" I ask.
"No, it was worse than ever," she says. "I love her and she's a sweet girl, but she tries to tell me what to do."
"Just like I do," I say.
"Yes," she says. "Did you know she had a little four-year-old girl?"
"What?"
"She was with her. She looked just like Emily at that age."
"Mom, Emily didn't have a baby recently."
"Well, maybe they had it illegitimately and hid it. They must have. It looked just like her."
"No, Mom."
"When we were leaving Japan, we heard that a haberdasher had been appointed president. But he reached out his hand to a bomb and couldn't be sworn in. He died a year later. Maybe they'll appoint a DAR now. He wanted Emily Lincoln."
"We're you watching a tv show about this, Mom?"
"Yes... This is a heck of a place. I'm thinking of moving out to the PEOs."
"Oh, you are? You like the PEO sisters, don't you?"
"Yes, I think I'll move into their place," she concluded. Then suddenly: "I have these scabs on my chest, and I wonder if they're going to turn into cancer."
"No, Mom. You get scabs from scratching. It's not cancer. Okay, Mom, thanks for calling."
"I wonder about that little girl with Emily. She didn't introduce me to her. I wonder what her name is."
"Mom, you must have been asleep, dreaming."
"Oh, I have good dreams!"
"Yes, you do."
"I heard that bears are running around in occupied places. Good thing Elbert died when he did or he'd have been eaten by one. It's a wonder I wasn't eaten by one."
"Yes, it's a wonder. But Mom, there are no bears in Santa Irena, so don't worry about it."
"Are you sure?"
"Santa Irena is a beach place. There's no forest. Bears are only in Colorado."
"That same man got me dressed today. He didn't call me sweetheart. He called me 'beautiful lady.'"
"Okay, Mom. Nice talking to you. I'll talk with you tomorrow."
Emily's Visit
Emily calls today with a report on Mom and questions about her accommodative AFOs (ankle-foot orthotics).
"Are the orthotics fitted for the right and left foot? Because they don't seem to be identified as left or right, but her ankle contracture is greater on her right foot than her left."
"The orthotics guy said either one could go on either foot," I answer.
"Well, her feet are different so they should be marked left and right," Emily explains. She is a registered physical therapist. "Also I brought some extensions for the leg rests on her wheelchair, but they don't fit. They're from someone who no longer needs them."
"You don't want to go down to Wishing Well Medical Equipment and order ones that fit?" I ask.
"I'm just trying to recycle--to save the expense by getting them used," Emily explains.
"Okay, fine," I agree.
"She's pretty out of it today. The caregiver had trouble getting her out of bed."
"You mean she's having a sleepy day?"
"No, she's not sleepy, just weak. She has pain in her leg from her hip. Didn't eat much lunch--said she couldn't eat because of the pain."
"So she's not going to walk today?" I ask.
"There's no way they could walk her today. She can't even transfer properly. Her right foot is not flat, so when she stands she puts all the weight on her left foot. Of course it hurts."
"Oh dear," I murmur.
"To transfer her properly, she should do some of the work, take some of her own weight. But to make her do it right is harder on the back of the person doing the transferring. I gave up because it was hurting my back, and I'm sure the caregivers aren't going to hurt their backs either. They'll just pick her up and lift her. To do it right takes two or three people today."
"Well, Racquel will be coming today, and I'm sure she won't do anything that might hurt her back," I reflect.
"I'm going to go out now and get some more Depends," Emily continues. "Shall I use her ATM card as a credit or debit purchase?"
"Either way, it ends up as debit. Connie made a list--she probably needs more plastic gloves too."
"Yeah, Mom's saying something about she wants to hire me," Emily adds.
"Oh, right! She came up with that yesterday. I guess she figures that while I'm out of commission, she'll hire you to come more often."
"It wouldn't be right... she needs all her funds."
"She doesn't realize you drive an hour and a half minimum to get here, in the best of traffic," I note. "But it's just five minutes for me."
"I'll try to come next week, maybe bring Scott or Andrew to talk with Marie while I visit Mom," Emily plans.
"Sounds good," I say. "Thanks for coming today."
"Are the orthotics fitted for the right and left foot? Because they don't seem to be identified as left or right, but her ankle contracture is greater on her right foot than her left."
"The orthotics guy said either one could go on either foot," I answer.
"Well, her feet are different so they should be marked left and right," Emily explains. She is a registered physical therapist. "Also I brought some extensions for the leg rests on her wheelchair, but they don't fit. They're from someone who no longer needs them."
"You don't want to go down to Wishing Well Medical Equipment and order ones that fit?" I ask.
"I'm just trying to recycle--to save the expense by getting them used," Emily explains.
"Okay, fine," I agree.
"She's pretty out of it today. The caregiver had trouble getting her out of bed."
"You mean she's having a sleepy day?"
"No, she's not sleepy, just weak. She has pain in her leg from her hip. Didn't eat much lunch--said she couldn't eat because of the pain."
"So she's not going to walk today?" I ask.
"There's no way they could walk her today. She can't even transfer properly. Her right foot is not flat, so when she stands she puts all the weight on her left foot. Of course it hurts."
"Oh dear," I murmur.
"To transfer her properly, she should do some of the work, take some of her own weight. But to make her do it right is harder on the back of the person doing the transferring. I gave up because it was hurting my back, and I'm sure the caregivers aren't going to hurt their backs either. They'll just pick her up and lift her. To do it right takes two or three people today."
"Well, Racquel will be coming today, and I'm sure she won't do anything that might hurt her back," I reflect.
"I'm going to go out now and get some more Depends," Emily continues. "Shall I use her ATM card as a credit or debit purchase?"
"Either way, it ends up as debit. Connie made a list--she probably needs more plastic gloves too."
"Yeah, Mom's saying something about she wants to hire me," Emily adds.
"Oh, right! She came up with that yesterday. I guess she figures that while I'm out of commission, she'll hire you to come more often."
"It wouldn't be right... she needs all her funds."
"She doesn't realize you drive an hour and a half minimum to get here, in the best of traffic," I note. "But it's just five minutes for me."
"I'll try to come next week, maybe bring Scott or Andrew to talk with Marie while I visit Mom," Emily plans.
"Sounds good," I say. "Thanks for coming today."
Friday, May 26, 2006
Lonely and Depressed
Resting at home after surgery, I don't remember to call Mom, but at 5:45 pm the phone rings.
"This is your mother," she announces. "How are you?"
She must have asked Connie to make the phone call when Connie arrived for her evening shift.
"I'm lying in bed, resting from my hysterectomy," I answer. "How are you doing?"
"Not very well," she begins. "I've got to get this thing over with. I'm sick and tired of it. I've got to take some lessons so I can get this thing over with."
"What thing?" I ask. "I'm sorry I can't visit you for a few more days."
"I just get so lonely," she continues. "I've got to get out of this depression. I see these people running around here, and I don't know why I can't be like them."
"But you had a broken hip, and they didn't. If they had a broken hip, they wouldn't be running around so much either."
"No, they wouldn't! They'd find out."
"You mean you want to start physical therapy again, so you can walk?"
"Yes! I'm sick and tired of this."
"Well, I hope you can get to walking more again soon."
"I did a terrible thing last night," she says, changing the subject.
"Really?"
"I took off a wet Depends. I tore it off one leg but not the other. I had to tell the girl when she came to bring a new one."
"Oh." What a scene this must have been. The people who work night shift on memory-impaired floors must be saints to keep coming back night after night.
"I just can't go on this way," she adds.
"No... but at least you have some movies to watch while I am gone. What movie are you going to watch tonight?"
"Oh, I don't know."
"Put Connie on the phone for a moment," I ask.
"Hi, Anne. How are you, Anne," Connie says. "We miss you. Your mom misses you so much. When I got here she said, 'I want to call Anne.'"
"Thank you so much for coming and taking care of her," I sigh. "So you took her to Blockbuster to return the other CDs and get new ones? What are you going to watch tonight?"
"Last Holiday with Queen Latifah... and tomorrow Big Mama with Steve Martin."
"Oh, good," I say, wondering how these films will impact Mom's thinking. I had rented safe ones--My Fair Lady, Showboat, etc. But at least it's a change from I Love Lucy night after night.
"Anyway, now she's happy," Connie concludes. "I'll put her back on the phone."
Mom returns with an apology for not calling sooner: "If I didn't get to you earlier, it's not because I didn't try."
"Okay, good," I say. "Anyway, Emily's going to come see you tomorrow."
"If Emily comes--" Mom reflects. "She only works part-time, so I'll try to hire her double time. She knows what's wrong with me."
"Okay, fine," I say.
I don't ask why she suddenly wants to hire Emily.
I don't explain that you don't need to hire your own family.
I let it go.
"This is your mother," she announces. "How are you?"
She must have asked Connie to make the phone call when Connie arrived for her evening shift.
"I'm lying in bed, resting from my hysterectomy," I answer. "How are you doing?"
"Not very well," she begins. "I've got to get this thing over with. I'm sick and tired of it. I've got to take some lessons so I can get this thing over with."
"What thing?" I ask. "I'm sorry I can't visit you for a few more days."
"I just get so lonely," she continues. "I've got to get out of this depression. I see these people running around here, and I don't know why I can't be like them."
"But you had a broken hip, and they didn't. If they had a broken hip, they wouldn't be running around so much either."
"No, they wouldn't! They'd find out."
"You mean you want to start physical therapy again, so you can walk?"
"Yes! I'm sick and tired of this."
"Well, I hope you can get to walking more again soon."
"I did a terrible thing last night," she says, changing the subject.
"Really?"
"I took off a wet Depends. I tore it off one leg but not the other. I had to tell the girl when she came to bring a new one."
"Oh." What a scene this must have been. The people who work night shift on memory-impaired floors must be saints to keep coming back night after night.
"I just can't go on this way," she adds.
"No... but at least you have some movies to watch while I am gone. What movie are you going to watch tonight?"
"Oh, I don't know."
"Put Connie on the phone for a moment," I ask.
"Hi, Anne. How are you, Anne," Connie says. "We miss you. Your mom misses you so much. When I got here she said, 'I want to call Anne.'"
"Thank you so much for coming and taking care of her," I sigh. "So you took her to Blockbuster to return the other CDs and get new ones? What are you going to watch tonight?"
"Last Holiday with Queen Latifah... and tomorrow Big Mama with Steve Martin."
"Oh, good," I say, wondering how these films will impact Mom's thinking. I had rented safe ones--My Fair Lady, Showboat, etc. But at least it's a change from I Love Lucy night after night.
"Anyway, now she's happy," Connie concludes. "I'll put her back on the phone."
Mom returns with an apology for not calling sooner: "If I didn't get to you earlier, it's not because I didn't try."
"Okay, good," I say. "Anyway, Emily's going to come see you tomorrow."
"If Emily comes--" Mom reflects. "She only works part-time, so I'll try to hire her double time. She knows what's wrong with me."
"Okay, fine," I say.
I don't ask why she suddenly wants to hire Emily.
I don't explain that you don't need to hire your own family.
I let it go.
Wednesday, May 24, 2006
All Is Well
Emerging from the fog of morphine, I remember in the afternoon, a day after my surgery, that Mom exists and I should call her.
"Hi, Mom. How are you?" I begin.
"Well, I'm fine but how are you? How was your surgery?"
Bravo! She knows what's happening.
"I'm in the hospital. Everything went fine, and I'm going home today."
"That's good, dear. I love you."
Wow! Appropriate responses. She's having a good day.
"I have to lie in bed for a week or more... I won't be coming to see you for a while."
"I miss you," she says, unable to keep the focus on me. "Things are so boring here."
"But Emily is coming to visit you, maybe tomorrow. I'll call you again tomorrow."
I hang up and drift off, thinking only of rest and sleep. I have no idea when I will get to Ocean View Assisted Living again--not until I am good and ready.
"Hi, Mom. How are you?" I begin.
"Well, I'm fine but how are you? How was your surgery?"
Bravo! She knows what's happening.
"I'm in the hospital. Everything went fine, and I'm going home today."
"That's good, dear. I love you."
Wow! Appropriate responses. She's having a good day.
"I have to lie in bed for a week or more... I won't be coming to see you for a while."
"I miss you," she says, unable to keep the focus on me. "Things are so boring here."
"But Emily is coming to visit you, maybe tomorrow. I'll call you again tomorrow."
I hang up and drift off, thinking only of rest and sleep. I have no idea when I will get to Ocean View Assisted Living again--not until I am good and ready.
Tuesday, May 23, 2006
My Turn
I meant to visit Mom at 8 am before reporting to the hospital at 9:30 for my surgery.
I needed to spend some time with her and say both "Hi, I'm back from Chicago" and "Today I'm having my hysterectomy. I won't see you for about a week."
But I had a lot of last-minute errands to tend to before being out of commission for two weeks, so I didn't arrive at Ocean View Assisted Living until 9:20 am.
First I put a small thank-you note with a cash tip for Connie in the drawer of the black desk, as usual after I've been out of town.
Then I found Mom sitting in her wheelchair in the dining room after breakfast.
"Hi, Mom," I began. "I got back from my trip to Chicago. The wedding was very nice."
"Oh good," she said. "I'm so glad you're here. I've been so bored--"
"And today is my surgery," I continued in a rush. "I'm on my way to the hospital to have my hysterectomy. I can't stay long--I have to leave."
"Take me with you!" she cried, sensing the urgency in my voice.
"No, I can't take you with me," I said, laughing a little as the caregivers cleaning up breakfast looked on with amusement. "This time it's my turn."
"Bring me in your car! I need to go with you," she demanded, trying to adopt the old mother-taking-care-of-daughter tone.
"But I'm the one who takes you if you go anywhere," I explained. "And this time I can't drive you. I'll be the one in the hospital."
"Oh!" she paused, trying to understand.
"I have to leave now. I'll be back in a week or so. Connie will take good care of you, and Emily will visit."
"I'll visit you," she insisted.
"Here's a late Mother's Day present for you, that Roz sent," I countered, thrusting a beautifully wrapped gift into her hands. "You can open it."
And off I rushed, leaving her confused and agitated.
It was not the visit I had intended, but at least she would remember that I was back in town and in the hospital.
I arrived at St. Mark's Hospital fifteen minutes late for my appointment, but the admitting clerk didn't seem to care.
Within an hour I was lying on a gurney, whizzing through the hospital halls and observing the various landmarks on the ceiling.
I wasn't worried about the surgery--a vaginal removal of the uterus, ovaries, and Fallopian tubes, followed by insertion of a Monarch sling near the bladder to hold my ureter in a straighter position.
After all, Mom at 85 and 86 years had sailed through two surgeries just fine: the repair of a broken hip and the insertion of a pacemaker. I should do fine with this little tune-up.
If my choices are surgery or the threat of having to use Depends in thirty years, I'll take the surgery.
I needed to spend some time with her and say both "Hi, I'm back from Chicago" and "Today I'm having my hysterectomy. I won't see you for about a week."
But I had a lot of last-minute errands to tend to before being out of commission for two weeks, so I didn't arrive at Ocean View Assisted Living until 9:20 am.
First I put a small thank-you note with a cash tip for Connie in the drawer of the black desk, as usual after I've been out of town.
Then I found Mom sitting in her wheelchair in the dining room after breakfast.
"Hi, Mom," I began. "I got back from my trip to Chicago. The wedding was very nice."
"Oh good," she said. "I'm so glad you're here. I've been so bored--"
"And today is my surgery," I continued in a rush. "I'm on my way to the hospital to have my hysterectomy. I can't stay long--I have to leave."
"Take me with you!" she cried, sensing the urgency in my voice.
"No, I can't take you with me," I said, laughing a little as the caregivers cleaning up breakfast looked on with amusement. "This time it's my turn."
"Bring me in your car! I need to go with you," she demanded, trying to adopt the old mother-taking-care-of-daughter tone.
"But I'm the one who takes you if you go anywhere," I explained. "And this time I can't drive you. I'll be the one in the hospital."
"Oh!" she paused, trying to understand.
"I have to leave now. I'll be back in a week or so. Connie will take good care of you, and Emily will visit."
"I'll visit you," she insisted.
"Here's a late Mother's Day present for you, that Roz sent," I countered, thrusting a beautifully wrapped gift into her hands. "You can open it."
And off I rushed, leaving her confused and agitated.
It was not the visit I had intended, but at least she would remember that I was back in town and in the hospital.
I arrived at St. Mark's Hospital fifteen minutes late for my appointment, but the admitting clerk didn't seem to care.
Within an hour I was lying on a gurney, whizzing through the hospital halls and observing the various landmarks on the ceiling.
I wasn't worried about the surgery--a vaginal removal of the uterus, ovaries, and Fallopian tubes, followed by insertion of a Monarch sling near the bladder to hold my ureter in a straighter position.
After all, Mom at 85 and 86 years had sailed through two surgeries just fine: the repair of a broken hip and the insertion of a pacemaker. I should do fine with this little tune-up.
If my choices are surgery or the threat of having to use Depends in thirty years, I'll take the surgery.
Thursday, May 18, 2006
Last Blast
Today I'm taking Mom out in the minivan for her last big outing before my surgery next Tuesday. She probably won't leave her residence for 4-5 weeks after this, until her doctor's appointment on June 12, but I don't tell her this.
Though we are supposed to arrive at Beverly Hills Prosthetics and Orthotics at 11 am, I have tried to cram too many errands into my morning before arriving to pick Mom up. It's my last day to do everything because John and I leave tomorrow with Marie for his cousin's daughter's wedding in Chicago, returning Monday night just before my Tuesday morning surgery.
I'm feeling pressured because I need to return Mom to her residence in time for me to attend a meeting of the local violence prevention coalition, arriving with snacks and copies of last month's minutes.
At any rate, I am not feeling calm or patient when I arrive at 10:30 am. If only Jona were still working the day shift with Mom, so she could have Mom ready at the door when I arrive.
Instead I have to go to Mom's floor, assist her to the toilet, and wheel her down to my parked car.
"I have to have my purse! My fur coat!" Mom cries as I try to wheel her out the door of her room.
The purse is a charade; I keep her Blue Cross card and checkbook in my wallet, but she fumbles with her purse whenever we pay for something. The fur coat is actually a sweater trimmed with rabbit fur.
"Here you go, but it's not cold out. You don't need to put the sweater on," I argue.
"My blood is colder than your blood," she retorts, trying to pull it on over the pink sweater and blouse she is already wearing.
"Okay!" I say crossly. She has one sleeve on and I roughly pull on the other.
She looks rumpled and odd with two sweaters on. Because the second sweater is angora wool, she will be slippery in my hands when I lift her out of the wheelchair and into the car. I've argued this point with her before, but I don't try today.
Soon we are flying down the freeway, taking the La Cienega exit at 11 am. I am trying to remember whether I turn right or left on Wilshire Boulevard to find Beverly Hills P- O Inc.
After locating a handicapped parking place, getting Mom into the wheelchair (slippery sweater and all), and getting up the elevator, we enter the elegant office.
David Cooley, PT, CPO, is wonderfully kind even though it is 11:15 am and we have thrown his next appointments off schedule.
We saw him for the first time last January, when he recommended that Mom wear a wool-lined boot at night to keep the inversion of her feet from getting worse. At that time he suggested not buying the malleable retrocalcineal passive resistive ankle-foot orthotics (PRAFOs) at a cost of $325 for each foot because we could get a similar boot at any medical equipment store, so we passed on the fancy PRAFOs and just ordered a lesser boot from Wishing Well.
It soon became apparent, however, that making Mom sleep with the cheaper model on was pointless. During the night the boot's velcro ripped away from the cross piece meant to keep the boot in a vertical position. Eventually my sister Emily recommended that we go back to the orthotics guy, where we are today.
"Evelyn has contractures of the hip, knee, ankle, and Achilles tendon," David reports after rotating Mom's feet. "Her foot cannot rest flat on the floor. She has a 40-45 degree equinus contracture with a varus component. We can't improve the contracture of her ankle and foot, but we can arrest it."
He explains that the equino contracture means she can't extend her foot down, while varus means her foot turns in. He says the varus actually can be reduced but not the equinus.
Then David explains the purchase options, again suggesting that we not buy the boots that cost $325 each. Another option is bilateral AFOs, splints inserted into her shoes to keep her feet straighter, only useful when she is actually walking.
With the level of medical terminology and decision-making clearly beyond my reach, I call Emily, who has a Master's in physical therapy, and miraculously reach her on her cell.
"Okay, Emily, could you talk with this gentleman about orthotics and let me know what you think we should do?"
After a short but technical consultation with David, Emily concludes that the PRAFOs are definitely the way to go, but that we should get them through brother Bill, a doctor working at Fort Lewis Army Base near Tacoma. He can probably get them for next to nothing.
"Okay," I say. "But I don't know... I'm leaving for Chicago tomorrow and then having surgery. I can't be in charge of getting these boots through Bill."
"Do whatever you want," she says.
"I like the red ones and the white ones--the tan ones are all right too," Mom says. She is talking about her SAS shoes of various colors.
I tell David, "We'll take the PRAFOs now. We'll write a check and see whether we can get reimbursement from Blue Cross."
By this time it's almost noon, and he needs to go to his next appointment, but he shuffles around in his closet, finds two of the things, and spends ten minutes fitting them for Mom's feet.
They are to be worn at night and when she is resting in her recliner, to keep her toes pointed up to the ceiling and her ankle flexed as close to a right angle as possible.
We make a trip to the bathroom and head back to Santa Irena.
As we wheel back to the car, Mom is happy because she is holding a big shiny bag with her new shoes and the words Beverly Hills Prosthetics Orthotics embossed on the side.
She asks for an ice cream cone, but the best I can do is a frozen ice cream drumstick from the pharmacy in the building.
Then we go to the dry cleaners and another ice cream shop on the way home.
She is back to Ocean View by 2 pm, but it's 3 pm by the time I leave the building and head for my next appointment.
To her this excursion meant lots of fun and attention. Good--but it's her last until mid-June.
Though we are supposed to arrive at Beverly Hills Prosthetics and Orthotics at 11 am, I have tried to cram too many errands into my morning before arriving to pick Mom up. It's my last day to do everything because John and I leave tomorrow with Marie for his cousin's daughter's wedding in Chicago, returning Monday night just before my Tuesday morning surgery.
I'm feeling pressured because I need to return Mom to her residence in time for me to attend a meeting of the local violence prevention coalition, arriving with snacks and copies of last month's minutes.
At any rate, I am not feeling calm or patient when I arrive at 10:30 am. If only Jona were still working the day shift with Mom, so she could have Mom ready at the door when I arrive.
Instead I have to go to Mom's floor, assist her to the toilet, and wheel her down to my parked car.
"I have to have my purse! My fur coat!" Mom cries as I try to wheel her out the door of her room.
The purse is a charade; I keep her Blue Cross card and checkbook in my wallet, but she fumbles with her purse whenever we pay for something. The fur coat is actually a sweater trimmed with rabbit fur.
"Here you go, but it's not cold out. You don't need to put the sweater on," I argue.
"My blood is colder than your blood," she retorts, trying to pull it on over the pink sweater and blouse she is already wearing.
"Okay!" I say crossly. She has one sleeve on and I roughly pull on the other.
She looks rumpled and odd with two sweaters on. Because the second sweater is angora wool, she will be slippery in my hands when I lift her out of the wheelchair and into the car. I've argued this point with her before, but I don't try today.
Soon we are flying down the freeway, taking the La Cienega exit at 11 am. I am trying to remember whether I turn right or left on Wilshire Boulevard to find Beverly Hills P- O Inc.
After locating a handicapped parking place, getting Mom into the wheelchair (slippery sweater and all), and getting up the elevator, we enter the elegant office.
David Cooley, PT, CPO, is wonderfully kind even though it is 11:15 am and we have thrown his next appointments off schedule.
We saw him for the first time last January, when he recommended that Mom wear a wool-lined boot at night to keep the inversion of her feet from getting worse. At that time he suggested not buying the malleable retrocalcineal passive resistive ankle-foot orthotics (PRAFOs) at a cost of $325 for each foot because we could get a similar boot at any medical equipment store, so we passed on the fancy PRAFOs and just ordered a lesser boot from Wishing Well.
It soon became apparent, however, that making Mom sleep with the cheaper model on was pointless. During the night the boot's velcro ripped away from the cross piece meant to keep the boot in a vertical position. Eventually my sister Emily recommended that we go back to the orthotics guy, where we are today.
"Evelyn has contractures of the hip, knee, ankle, and Achilles tendon," David reports after rotating Mom's feet. "Her foot cannot rest flat on the floor. She has a 40-45 degree equinus contracture with a varus component. We can't improve the contracture of her ankle and foot, but we can arrest it."
He explains that the equino contracture means she can't extend her foot down, while varus means her foot turns in. He says the varus actually can be reduced but not the equinus.
Then David explains the purchase options, again suggesting that we not buy the boots that cost $325 each. Another option is bilateral AFOs, splints inserted into her shoes to keep her feet straighter, only useful when she is actually walking.
With the level of medical terminology and decision-making clearly beyond my reach, I call Emily, who has a Master's in physical therapy, and miraculously reach her on her cell.
"Okay, Emily, could you talk with this gentleman about orthotics and let me know what you think we should do?"
After a short but technical consultation with David, Emily concludes that the PRAFOs are definitely the way to go, but that we should get them through brother Bill, a doctor working at Fort Lewis Army Base near Tacoma. He can probably get them for next to nothing.
"Okay," I say. "But I don't know... I'm leaving for Chicago tomorrow and then having surgery. I can't be in charge of getting these boots through Bill."
"Do whatever you want," she says.
"I like the red ones and the white ones--the tan ones are all right too," Mom says. She is talking about her SAS shoes of various colors.
I tell David, "We'll take the PRAFOs now. We'll write a check and see whether we can get reimbursement from Blue Cross."
By this time it's almost noon, and he needs to go to his next appointment, but he shuffles around in his closet, finds two of the things, and spends ten minutes fitting them for Mom's feet.
They are to be worn at night and when she is resting in her recliner, to keep her toes pointed up to the ceiling and her ankle flexed as close to a right angle as possible.
We make a trip to the bathroom and head back to Santa Irena.
As we wheel back to the car, Mom is happy because she is holding a big shiny bag with her new shoes and the words Beverly Hills Prosthetics Orthotics embossed on the side.
She asks for an ice cream cone, but the best I can do is a frozen ice cream drumstick from the pharmacy in the building.
Then we go to the dry cleaners and another ice cream shop on the way home.
She is back to Ocean View by 2 pm, but it's 3 pm by the time I leave the building and head for my next appointment.
To her this excursion meant lots of fun and attention. Good--but it's her last until mid-June.
Wednesday, May 17, 2006
How Much Your Visits Mean
I didn't visit Mom until 6 pm for the third day in a row (I'm preparing to go away for a four-day weekend, and when I get back I'm having a hysterectomy, so I'm trying to get all loose ends tied up this week.)
When I arrived, Mom was angry.
My usual big cheery "Hi, Mom! How are you?" met a sullen response.
"Not very well because you haven't been here."
"I was here yesterday, but you were sleepy, watching Lucy. Don't you remember?" I kneel on the floor, face to face with Mom in her wheelchair so she can see me.
"You don't know how much your visits mean to me."
"Oh... but I did come!"
"These people don't do things right. They don't care. I have to keep telling them."
"But Connie was here," I say, "She's pretty good." I grin up at Connie, her private caregiver, who spends a lot of time listening to Mom's complaints about how neglected she is. Connie works 5-10 pm MWF and 2-10 pm TTh.
"And tomorrow she'll take you out to get your nails done," I add, taking Mom's hand. "Look, you need to get your nails done."
The nails are too long and the pink polish is getting a bit ragged.
"Yes, it's been three weeks," Connie says.
"Oh dear," I sigh. "Has it really? Let's write it on the calendar for every other Thursday, otherwise we'll forget."
A few months ago parts of her nails turned white, and a manicurist told me it was because the polish had been left on too long. I never wear polish, so I don't know these things, but I had resolved to make sure she had manicures every three weeks.
"Good. I'll take her tomorrow," Connie agreed.
"What do I need to buy for her?" I asked. "I want to get enough Depends and plastic gloves and things to last for ten days or more."
"I made you a list," Connie says, handing it to me.
"Oh thank you," I say. "That's great."
"I have to go to Sav-On now, Mom. I'll be back in an hour or so. Connie will give you your shower."
"Okay," Mom says grudgingly.
I'm off to buy 4 packages of Depends and lots of other things, but echoing in my mind are Mom's words:
You don't know how much your visits mean to me.
When I arrived, Mom was angry.
My usual big cheery "Hi, Mom! How are you?" met a sullen response.
"Not very well because you haven't been here."
"I was here yesterday, but you were sleepy, watching Lucy. Don't you remember?" I kneel on the floor, face to face with Mom in her wheelchair so she can see me.
"You don't know how much your visits mean to me."
"Oh... but I did come!"
"These people don't do things right. They don't care. I have to keep telling them."
"But Connie was here," I say, "She's pretty good." I grin up at Connie, her private caregiver, who spends a lot of time listening to Mom's complaints about how neglected she is. Connie works 5-10 pm MWF and 2-10 pm TTh.
"And tomorrow she'll take you out to get your nails done," I add, taking Mom's hand. "Look, you need to get your nails done."
The nails are too long and the pink polish is getting a bit ragged.
"Yes, it's been three weeks," Connie says.
"Oh dear," I sigh. "Has it really? Let's write it on the calendar for every other Thursday, otherwise we'll forget."
A few months ago parts of her nails turned white, and a manicurist told me it was because the polish had been left on too long. I never wear polish, so I don't know these things, but I had resolved to make sure she had manicures every three weeks.
"Good. I'll take her tomorrow," Connie agreed.
"What do I need to buy for her?" I asked. "I want to get enough Depends and plastic gloves and things to last for ten days or more."
"I made you a list," Connie says, handing it to me.
"Oh thank you," I say. "That's great."
"I have to go to Sav-On now, Mom. I'll be back in an hour or so. Connie will give you your shower."
"Okay," Mom says grudgingly.
I'm off to buy 4 packages of Depends and lots of other things, but echoing in my mind are Mom's words:
You don't know how much your visits mean to me.
Tuesday, May 16, 2006
I Love Lucy
Visiting Mom is not my priority this week, so I don't show up at her residence until 7 pm or so.
Earlier in the day I made a pre-op visit to the doctor for my upcoming surgery and went to a P.E.O. committee meeting, helping plan programs for meetings in the coming year. (I count P.E.O. time as time spent on Mom.)
When I arrive at her room, she is already showered, dressed in her nightgown, and resting in her recliner with her pink flannel blanket tucked up to her chin, watching an episode of I Love Lucy on the laptop computer propped up on a chair in front of her.
Her room is dark except for the glow of the computer screen in black and white. Connie stands by, cleaning up towels and things from the bath.
"Hi, Mom. How are you?" I begin. "I see you're watching Lucy."
"Yes--she's always so funny," Mom answers, her small face peeping out from the blanket that covers the rest of her. Her eyes are slits, barely open. She hardly turns her head to greet me, so completely is her attention absorbed by Lucy's antics.
A year ago I bought her a boxed set of 6 CDs of I Love Lucy, and watching them has become an evening ritual.
Tonight Lucy is trying to play the saxophone in order to get into Ricky's band and travel with him. She learned the saxophone in high school but can only play one song, squawkingly.
"That's like you with the oboe," I say. "That time the Telluride High School band went to the competition in Grand Junction, and the director told you not to play--just to pretend."
"Yes," says Mom, laughing. "'Don't you dare make a sound!' he told me."
I watch the show for a few minutes but leave shortly after.
She doesn't need me. She and Connie are perfectly happy.
Earlier in the day I made a pre-op visit to the doctor for my upcoming surgery and went to a P.E.O. committee meeting, helping plan programs for meetings in the coming year. (I count P.E.O. time as time spent on Mom.)
When I arrive at her room, she is already showered, dressed in her nightgown, and resting in her recliner with her pink flannel blanket tucked up to her chin, watching an episode of I Love Lucy on the laptop computer propped up on a chair in front of her.
Her room is dark except for the glow of the computer screen in black and white. Connie stands by, cleaning up towels and things from the bath.
"Hi, Mom. How are you?" I begin. "I see you're watching Lucy."
"Yes--she's always so funny," Mom answers, her small face peeping out from the blanket that covers the rest of her. Her eyes are slits, barely open. She hardly turns her head to greet me, so completely is her attention absorbed by Lucy's antics.
A year ago I bought her a boxed set of 6 CDs of I Love Lucy, and watching them has become an evening ritual.
Tonight Lucy is trying to play the saxophone in order to get into Ricky's band and travel with him. She learned the saxophone in high school but can only play one song, squawkingly.
"That's like you with the oboe," I say. "That time the Telluride High School band went to the competition in Grand Junction, and the director told you not to play--just to pretend."
"Yes," says Mom, laughing. "'Don't you dare make a sound!' he told me."
I watch the show for a few minutes but leave shortly after.
She doesn't need me. She and Connie are perfectly happy.
Monday, May 15, 2006
Fluctuating Cognition
One of the main symptoms of Lewy Body Disease is the affected person's abilities fluctuating from day to day, even hour to hour.
Today Mom had a sleepy day. After sleeping all night, she slept most of the day.
I didn't visit her until 6 pm, and the caregivers immediately reported that she had been sleeping in her recliner all day. It was difficult to get her awake to go to lunch and dinner.
When I greeted her, she immediately spoke to me and opened her eyes, looking normal to me for a few moments.
"I brought you from flowers from Marie."
"Oh, good. They're beautiful," she said, looking at them.
"Marie should have brought them herself, but today is her first day at her job, being a hostess for a restaurant."
"Oh, I see. She'll enjoy that."
"I see you had your hair done," I said.
"Yes, but that woman is always a problem," Mom said. True. The hairdresser sends customers back to their rooms if she isn't ready for them, sometimes makes a few curls with a curling iron instead of putting the hair on rollers to dry.
But while I spoke to Connie, her private caregiver, for a few minutes, Mom went back to sleep.
"Okay, Mom. I'll put the flowers in water. Look at this one--isn't it pretty?"
No response. She sat in her wheelchair with her eyes closed.
"You look sleepy, Mom."
No response.
"I guess we had such a big day yesterday, going to Denny's and everything, that you're tired today."
No response.
"Okay, I'm going to go to Sav-On and buy some Depends. I'll be back soon."
No response. Not even opening her eyes.
It's as if her brain were a computer that hadn't booted up properly. Just no screen there at all.
What a contrast to yesterday, when she did so much walking and talking, laughing and telling me one crazy story after another.
It's as if she were manic yesterday or in high gear but locked in neutral today.
Now I feel grateful for the interaction we had yesterday, strange as some of it was. At least she was somewhat like her old self, talking and laughing.
Today is scary. It reminds me that each day is a gift, not guaranteed for tomorrow.
Today Mom had a sleepy day. After sleeping all night, she slept most of the day.
I didn't visit her until 6 pm, and the caregivers immediately reported that she had been sleeping in her recliner all day. It was difficult to get her awake to go to lunch and dinner.
When I greeted her, she immediately spoke to me and opened her eyes, looking normal to me for a few moments.
"I brought you from flowers from Marie."
"Oh, good. They're beautiful," she said, looking at them.
"Marie should have brought them herself, but today is her first day at her job, being a hostess for a restaurant."
"Oh, I see. She'll enjoy that."
"I see you had your hair done," I said.
"Yes, but that woman is always a problem," Mom said. True. The hairdresser sends customers back to their rooms if she isn't ready for them, sometimes makes a few curls with a curling iron instead of putting the hair on rollers to dry.
But while I spoke to Connie, her private caregiver, for a few minutes, Mom went back to sleep.
"Okay, Mom. I'll put the flowers in water. Look at this one--isn't it pretty?"
No response. She sat in her wheelchair with her eyes closed.
"You look sleepy, Mom."
No response.
"I guess we had such a big day yesterday, going to Denny's and everything, that you're tired today."
No response.
"Okay, I'm going to go to Sav-On and buy some Depends. I'll be back soon."
No response. Not even opening her eyes.
It's as if her brain were a computer that hadn't booted up properly. Just no screen there at all.
What a contrast to yesterday, when she did so much walking and talking, laughing and telling me one crazy story after another.
It's as if she were manic yesterday or in high gear but locked in neutral today.
Now I feel grateful for the interaction we had yesterday, strange as some of it was. At least she was somewhat like her old self, talking and laughing.
Today is scary. It reminds me that each day is a gift, not guaranteed for tomorrow.
Sunday, May 14, 2006
Are You Having a Good Mother's Day?
I wake at 3:15 am and can't go back to sleep. I hear my daughter Marie in the kitchen finding something to eat. She had a mini-crisis yesterday, and I'm a little worried about her.
By 4:15 am she's back in bed and I get up. I was planning to get up early anyway to get to my mother's assisted living at 6 am and dress her for church. Just three hours of sleep, oh well.
By 4:15 am she's back in bed and I get up. I was planning to get up early anyway to get to my mother's assisted living at 6 am and dress her for church. Just three hours of sleep, oh well.
I bake a birthday cake for Marie, who turns 19 today. I turn the timer off a minute before it will buzz so the noise won't wake anyone, but then I forget the oven for ten more minutes and burn the cake.
At 6:15 I am driving to Ocean View. The first stop light I encounter is not working, as usual. It stays red for me while cycling through green lights for the other directions three times. Finally I run the light, as I have on other days, including once when Mom nearly died of asphyxiation before I got there and cleared her throat. Today, calling the police department to report the light, I am told to call back on Monday. By this time I am pretty upset, maybe because I've had so little sleep.
~ ~ ~
As I arrive in the Reminiscence Neighborhood, April greets me.
"I just peeked in at Evelyn. She's still sleeping."
Good! I could use a few minutes of peace and quiet before dealing with her. I enter Mom's room and look around the corner toward her bed. Her eyes are wide open. She lies there looking toward the window and doesn't see me.
I decide to sit down and take five before announcing that I am here, but she hears me.
"Mother?" she asks.
"Yes," I say wearily. "I'm here."
"Oh good," she says.
I help her out of bed, into the wheelchair, and onto the toilet.
She begins telling me about the time when her brother Elbert was dying and she was in Ridgway and he called her and said, "Can you come to me? I don't want to die alone" and she came; then she's talking about his funeral. I have heard this story many times in the past couple of months, but it's mostly out of her imagination. She spoke to him on the phone before he died in June, 1998, and she drove from Boulder to Mancos, Colorado, for his funeral, but she was not at his death bed. I don't try to correct her.
I dress her in a colorful pink and green calf-length skirt with a muted green pullover sweater. She asks to wear her pink floppy hat and her rabbit-fur trimmed sweater. As I put lipstick and rouge on her, she starts singing gaily: "In her Easter bonnet, with all the flowers on it, she'll be the grandest lady in the Easter parade."
I decide to change the sheets on her bed and put one folded sheet in her lap while I pull a fitted sheet onto the mattress, but the sheet worries her. She starts to unfold it.
"Oh God, I don't think I know how to use this. What is it? Oh, it's just a pillow case. No, a purse." Her attention has been distracted by her purse lying in an open drawer nearby. I take the sheet. As she tries to pull the purse out of the drawer, the things inside slip out. "What is all that? Everything in it, everything's coming out. I have to have a proper one. I think it's the one that's meant for today."
Once the chores are done, I help her to stand at her walker and she walks to the dining room, about one hundred feet. "Don't hold onto me!" she says, proving that she can walk alone.
I leave her there to eat breakfast while I rest in her room and take care of a few things, like a phone call to my daughter in Spain.
~ ~ ~
After breakfast, Mom walks back to her room with my help.
"Good," I say. "You've had your exercise for the day." I try to make sure she does at least this much walking daily to slow down the curling in of her feet. My sister is concerned about this inversion that happens when she just sits in her recliner not walking.
"I'm going to walk into church," Mom announces. "I don't like to be in that chair all the time."
"Okay," I say, taking on the challenge. "We're getting an early start today, so you can walk in with your walker if you want to."
And she actually does it. I park right in front and pull her up to stand at the walker; she walks up the wheelchair ramp past the ushers (who delay us trying to give us each a flower for Mother's Day) and collapses in the nearest pew on the center aisle.
I feel like shouting, "Hallelujah! Look, everyone! The lame are walking today. Evelyn walked in without her wheelchair."
After church a couple of people do notice and congratulate her as she walks back to the car.
At the car a complete stranger asks, "Are you her daughter?" and starts a riff on mother care and her own mother who died a few years ago.
"Would you mind opening the car door?" I ask. Mom is about to collapse again; I am holding her up, and I don't have a free hand to open the door.
"I have to sit! Just let me sit down!" Mom is saying as she pants like someone who has run a mile.
"No, don't sit here-grab onto car door," I say. "Here's the bar you hold onto."
The chatty stranger helps me pull the walker out of the way so I can I can get Mom into the car. I load her walker, her purse, and my bag into the back seat, taking out my cell phone to keep in the front seat with me.
Then I put her seat belt on, laying the cell phone down on the roof of the van for a moment.
At 6:15 I am driving to Ocean View. The first stop light I encounter is not working, as usual. It stays red for me while cycling through green lights for the other directions three times. Finally I run the light, as I have on other days, including once when Mom nearly died of asphyxiation before I got there and cleared her throat. Today, calling the police department to report the light, I am told to call back on Monday. By this time I am pretty upset, maybe because I've had so little sleep.
~ ~ ~
As I arrive in the Reminiscence Neighborhood, April greets me.
"I just peeked in at Evelyn. She's still sleeping."
Good! I could use a few minutes of peace and quiet before dealing with her. I enter Mom's room and look around the corner toward her bed. Her eyes are wide open. She lies there looking toward the window and doesn't see me.
I decide to sit down and take five before announcing that I am here, but she hears me.
"Mother?" she asks.
"Yes," I say wearily. "I'm here."
"Oh good," she says.
I help her out of bed, into the wheelchair, and onto the toilet.
She begins telling me about the time when her brother Elbert was dying and she was in Ridgway and he called her and said, "Can you come to me? I don't want to die alone" and she came; then she's talking about his funeral. I have heard this story many times in the past couple of months, but it's mostly out of her imagination. She spoke to him on the phone before he died in June, 1998, and she drove from Boulder to Mancos, Colorado, for his funeral, but she was not at his death bed. I don't try to correct her.
I dress her in a colorful pink and green calf-length skirt with a muted green pullover sweater. She asks to wear her pink floppy hat and her rabbit-fur trimmed sweater. As I put lipstick and rouge on her, she starts singing gaily: "In her Easter bonnet, with all the flowers on it, she'll be the grandest lady in the Easter parade."
I decide to change the sheets on her bed and put one folded sheet in her lap while I pull a fitted sheet onto the mattress, but the sheet worries her. She starts to unfold it.
"Oh God, I don't think I know how to use this. What is it? Oh, it's just a pillow case. No, a purse." Her attention has been distracted by her purse lying in an open drawer nearby. I take the sheet. As she tries to pull the purse out of the drawer, the things inside slip out. "What is all that? Everything in it, everything's coming out. I have to have a proper one. I think it's the one that's meant for today."
Once the chores are done, I help her to stand at her walker and she walks to the dining room, about one hundred feet. "Don't hold onto me!" she says, proving that she can walk alone.
I leave her there to eat breakfast while I rest in her room and take care of a few things, like a phone call to my daughter in Spain.
~ ~ ~
After breakfast, Mom walks back to her room with my help.
"Good," I say. "You've had your exercise for the day." I try to make sure she does at least this much walking daily to slow down the curling in of her feet. My sister is concerned about this inversion that happens when she just sits in her recliner not walking.
"I'm going to walk into church," Mom announces. "I don't like to be in that chair all the time."
"Okay," I say, taking on the challenge. "We're getting an early start today, so you can walk in with your walker if you want to."
And she actually does it. I park right in front and pull her up to stand at the walker; she walks up the wheelchair ramp past the ushers (who delay us trying to give us each a flower for Mother's Day) and collapses in the nearest pew on the center aisle.
I feel like shouting, "Hallelujah! Look, everyone! The lame are walking today. Evelyn walked in without her wheelchair."
After church a couple of people do notice and congratulate her as she walks back to the car.
At the car a complete stranger asks, "Are you her daughter?" and starts a riff on mother care and her own mother who died a few years ago.
"Would you mind opening the car door?" I ask. Mom is about to collapse again; I am holding her up, and I don't have a free hand to open the door.
"I have to sit! Just let me sit down!" Mom is saying as she pants like someone who has run a mile.
"No, don't sit here-grab onto car door," I say. "Here's the bar you hold onto."
The chatty stranger helps me pull the walker out of the way so I can I can get Mom into the car. I load her walker, her purse, and my bag into the back seat, taking out my cell phone to keep in the front seat with me.
Then I put her seat belt on, laying the cell phone down on the roof of the van for a moment.
~ ~ ~
Why didn't I put it in my pocket?
A few moments later I am driving past the house where Nichole Brown Simpson was murdered, making my usual mental nod to her memory, and I suddenly think about my teenager and her birthday. I should call her. Where's my cell?
Nowhere. With a sinking feeling I remember putting it on the roof of the van.
I drive back to the church, search the street, make inquiries for lost & found, and start retracing my driving path.
Mom is worried: "It's all my fault. You were trying so hard to help me."
"No," I tell her. "It's okay."
Then I find it, smashed into five or six pieces where I made a left turn, already two blocks and one right turn away from where I had parked. Oh well, at least the mystery is solved.
~ ~ ~
We head home to greet the birthday girl and put the sheets in the washing machine, but no one is home, so we're off to Denny's for our big Mother's Day lunch out.
I'm going the extra mile, instead of serving Mom lunch at my house, partly because I will be out of town next weekend and recovering from a surgery the following weekend. This excursion will have to last her for a while.
This is the place to be on Mother's Day! says a sign near the Denny's entrance.
Apparently a lot of people agree; the place is packed with an ethnic mix that matches the state of California--51% Latino, 20% African-American and Asian, 30% Euro-American.
After a short wait we are escorted to a booth and I manage to get Mom into it. She has senior chicken-fried steak with French fries and coleslaw. I pass up the senior menu to have an "ultimate" omelette. We watch the lively scene around us, including many extended families that take up two or three booths.
"I like your shirt," she says. "I want a shirt like that, that says Caring."
I am wearing a black t-shirt that says, "Invest in caring not killing--Annual military spending is 10 times the money needed globally to provide basic food, water, health care and housing." It shows a Muslim mother with a baby on her back.
A few moments later I am driving past the house where Nichole Brown Simpson was murdered, making my usual mental nod to her memory, and I suddenly think about my teenager and her birthday. I should call her. Where's my cell?
Nowhere. With a sinking feeling I remember putting it on the roof of the van.
I drive back to the church, search the street, make inquiries for lost & found, and start retracing my driving path.
Mom is worried: "It's all my fault. You were trying so hard to help me."
"No," I tell her. "It's okay."
Then I find it, smashed into five or six pieces where I made a left turn, already two blocks and one right turn away from where I had parked. Oh well, at least the mystery is solved.
~ ~ ~
We head home to greet the birthday girl and put the sheets in the washing machine, but no one is home, so we're off to Denny's for our big Mother's Day lunch out.
I'm going the extra mile, instead of serving Mom lunch at my house, partly because I will be out of town next weekend and recovering from a surgery the following weekend. This excursion will have to last her for a while.
This is the place to be on Mother's Day! says a sign near the Denny's entrance.
Apparently a lot of people agree; the place is packed with an ethnic mix that matches the state of California--51% Latino, 20% African-American and Asian, 30% Euro-American.
After a short wait we are escorted to a booth and I manage to get Mom into it. She has senior chicken-fried steak with French fries and coleslaw. I pass up the senior menu to have an "ultimate" omelette. We watch the lively scene around us, including many extended families that take up two or three booths.
"I like your shirt," she says. "I want a shirt like that, that says Caring."
I am wearing a black t-shirt that says, "Invest in caring not killing--Annual military spending is 10 times the money needed globally to provide basic food, water, health care and housing." It shows a Muslim mother with a baby on her back.
This is my failed attempt to deflect unwanted Mother's Day sentimentality. So far dozens of people, many of them strangers, have wished me a Happy Mother's Day, and ushers at church have pressed flowers into my hands.
In her right mind, Mom would never have asked to have a shirt like this, but now she understands that it is political and concerned.
"If I get a shirt like that, it'll show that I should have been more caring," she says.
"No, you are caring," I say, but she is now saying something about "when China starts fighting Japan... change the world."
Conversation shifts back to her brother.
"Everybody loved Elbert," she says. "I thought he shouldn't be on a roof, nailing a shingle... his first wife, I loaned her my fur coat... Elbert was a pretty good-looking young bachelor in that low-income town. His second wife was really lovely... I guess I've been spoiled all my life, between working for Daddy and working for Elskamps...."
"If I get a shirt like that, it'll show that I should have been more caring," she says.
"No, you are caring," I say, but she is now saying something about "when China starts fighting Japan... change the world."
Conversation shifts back to her brother.
"Everybody loved Elbert," she says. "I thought he shouldn't be on a roof, nailing a shingle... his first wife, I loaned her my fur coat... Elbert was a pretty good-looking young bachelor in that low-income town. His second wife was really lovely... I guess I've been spoiled all my life, between working for Daddy and working for Elskamps...."
I nod and murmur yes. Our two hours in Denny's drags on.
"I yearn to do my own cooking sometimes," Mom says. "I dream I'm making macaroni and cheese. I was just ready to take it out of the oven--but nothing."
"You wake up," I say.
Afterward we get in line for the bathroom, but there are only two stalls, one not working, so we drive home.
~ ~ ~
Still no one home. If my cell phone were working, I would know that Marie and her dad have gone to the Angels game in Anaheim. They all know better than to give me gifts today. I've told them how this day was founded by Julia Ward Howe as Mother's Peace Day but has degenerated into commercial fluff to compensate for exploitation of women the rest of the year.
"You wake up," I say.
Afterward we get in line for the bathroom, but there are only two stalls, one not working, so we drive home.
~ ~ ~
Still no one home. If my cell phone were working, I would know that Marie and her dad have gone to the Angels game in Anaheim. They all know better than to give me gifts today. I've told them how this day was founded by Julia Ward Howe as Mother's Peace Day but has degenerated into commercial fluff to compensate for exploitation of women the rest of the year.
I don't expect Mom to understand this, however. I've bought gifts for her and the two of us sit here alone opening them, as we did two months ago on her birthday.
She likes the bedroom slippers and Estee Lauder powder. The little stained glass church with a light bulb inside delights her.
"It looks like the one in Telluride before it burned down," I tell her.
"Yes," she says. "Everyone thought that Communists had burned it down."
I don't comment, smiling at the ambition of communists who might go all the way to the end of that box canyon to burn down a church.
"It can sit on the doll cabinet next to the dolls," she says. "The dolls are all virgin dolls."
And worthy of going to church, apparently, I think. Oh well.
She is talking about how she would like to move her doll cabinet into our house, right where John's easy chair sits.
"What would he think of that?" she laughs. "Not much, I guess. Mother-in-laws. You should tell him about my idea, for a joke, some time when he's depressed."
I laugh with her, thinking "No way!"
Then she's talking about my grandmother.
"I always feel so bad about my mother. I didn't know she died."
"Yes, she died," I say. I don't tell her again that she herself was the first to arrive at the P.E.O. chapter house when Grandma died in 1974. I don't repeat, "You were the one who called to tell me."
"She was a lovely woman," Mom continues. "She started you out right and everything."
"Yes," I say.
"Daddy said to me, 'Why don't you leave that poor baby alone?' and I told him I had to go be a Navy nurse and I left you with him and Mother to raise. They did a good job, sent you to school and everything."
I don't point out that she was a Navy nurse during World War II, long before she had me and my younger brothers and sister, that she and my father raised all of us kids.
"It can sit on the doll cabinet next to the dolls," she says. "The dolls are all virgin dolls."
And worthy of going to church, apparently, I think. Oh well.
She is talking about how she would like to move her doll cabinet into our house, right where John's easy chair sits.
"What would he think of that?" she laughs. "Not much, I guess. Mother-in-laws. You should tell him about my idea, for a joke, some time when he's depressed."
I laugh with her, thinking "No way!"
Then she's talking about my grandmother.
"I always feel so bad about my mother. I didn't know she died."
"Yes, she died," I say. I don't tell her again that she herself was the first to arrive at the P.E.O. chapter house when Grandma died in 1974. I don't repeat, "You were the one who called to tell me."
"She was a lovely woman," Mom continues. "She started you out right and everything."
"Yes," I say.
"Daddy said to me, 'Why don't you leave that poor baby alone?' and I told him I had to go be a Navy nurse and I left you with him and Mother to raise. They did a good job, sent you to school and everything."
I don't point out that she was a Navy nurse during World War II, long before she had me and my younger brothers and sister, that she and my father raised all of us kids.
Then her thoughts turn to my oldest daughter.
"Roz wrote me that card that said she'd love me no matter what. Does she know that with old age comes senility?" Mom asks, laughing as she contemplates eventually becoming senile.
"Oh, I'm sure she knows," I say.
Then I add, "It's time to go back to Ocean View. Let's pack up these gifts, and I'll get the laundry out of the dryer."
"You just want to get rid of me," Mom says.
I don't answer because it's true. I've been watching the clock for hours.
Soon she is back in the car, and my neighbor Shari walks over to say hi.
"Are you having a good Mother's Day?" she asks.
I equivocate, unable to say anything with Mom present, but Shari gets the point, telling me that she has to go in and clean up the mess in her kitchen after her young sons have planted seeds in pots as a Mother's Day gift.
~ ~ ~
Back at Ocean View, I greet Racquel, who has just returned from a month in the Philippines.
"I'm so glad you're back and that you came today, instead of going out with your family," I say. "That means I don't have to give my mother a shower tonight."
"Oh, it's my job, Anne," she says with a big smile. "I'm the one."
It's 3:15 pm as I escape from the Reminiscence Neighborhood, dodging Mother's Day greetings like a quarterback running with a football.
Soon I will be back home to frost Marie's cake and maybe even take a nap.
"Roz wrote me that card that said she'd love me no matter what. Does she know that with old age comes senility?" Mom asks, laughing as she contemplates eventually becoming senile.
"Oh, I'm sure she knows," I say.
Then I add, "It's time to go back to Ocean View. Let's pack up these gifts, and I'll get the laundry out of the dryer."
"You just want to get rid of me," Mom says.
I don't answer because it's true. I've been watching the clock for hours.
Soon she is back in the car, and my neighbor Shari walks over to say hi.
"Are you having a good Mother's Day?" she asks.
I equivocate, unable to say anything with Mom present, but Shari gets the point, telling me that she has to go in and clean up the mess in her kitchen after her young sons have planted seeds in pots as a Mother's Day gift.
~ ~ ~
Back at Ocean View, I greet Racquel, who has just returned from a month in the Philippines.
"I'm so glad you're back and that you came today, instead of going out with your family," I say. "That means I don't have to give my mother a shower tonight."
"Oh, it's my job, Anne," she says with a big smile. "I'm the one."
It's 3:15 pm as I escape from the Reminiscence Neighborhood, dodging Mother's Day greetings like a quarterback running with a football.
Soon I will be back home to frost Marie's cake and maybe even take a nap.
Sunday, May 07, 2006
How Grandma Lost Her Tomorrows
When I arrived at Mom's residence this morning at 7:45 am, I didn't know whether she would be dressed and at breakfast or still in bed.
Usually on Sundays I arrive at 6:30 or 7 am, help her get up, and dress her for church. Then I shower while she is at breakfast and take her to church.
Today I stayed home until my husband left for a short business trip, so I was late to arrive at Ocean View Assisted Living.
I found her at breakfast, wearing the flowered pink jacket and matching slacks I had laid out for her to wear today. She looked great, so I concluded all was well. A kind and competent young caregiver, Heidi, had gotten her up and dressed her.
We were still late for church, however, because breakfast didn't arrive until 8:30 and at 9 am she insisted on walking back to her room instead of riding in the wheelchair. After a few steps she whimpered and said it was painful, she couldn't make it, but with encouragement she did do it.
We got through the usual routine with no unusual problems: church (which she partially slept through), an ice cream cone from Baskin Robbins, a shopping trip to Sav-On (me shopping, her in the car with her ice cream), and a visit to my house.
She had hardly been at my house half an hour before she said it was time to go back to her residence--unusual for her. She hadn't even visited the bathroom yet. Usually she demands to use the bathroom about three times before I can get her back in the car to return to Ocean View.
After I got her settled in her chair for a nap back at her residence and was leaving at 2 pm, Bethlhem arrived for her 2-10 pm shift and pulled me aside to explain what had happened at 5 am.
"We checked her at 4:45 am and she was snoring, but when I happened to come by again at 5 am, she was sitting up on the edge of her bed pulling her nightgown off," began Bethlehem.
"So I said, 'Evelyn, what are you doing? It's too early to get up.'"
"'I'm getting dressed for church so I will be ready when Anne comes,' she told me.
"'Oh no, Anne won't like that,' I told her. 'You might fall down and get a broken bone, and Anne would not like that.' She seemed to think about that and to understand."
"So you were able to get her to go back to bed?" I asked.
"Yes, she went back to bed and to sleep," Bethlhem confirmed.
"Oh thank goodness," I said. "She has done that before--tried to get up at 3 am or 5 am. That's why she had a private caregiver at night for so long. But I thought she wasn't doing that any more. I haven't been much in touch with the night shift. And why are you working from 10 pm to 6 am and then starting another shift eight hours later?"
Bethlhem didn't totally explain why for two days in a row she worked graveyard shift and then started again at 2 pm--there must have been staffing problems. She is a lead caregiver in charge of 4-5 others, an immigrant from Ethiopia, kind, competent, caring, and beautiful in her early thirties.
Another unanswered question was why the Posey alarm hadn't gone off. It is supposed to make a loud noise when she sits up in bed or tries to leave the bed.
I concluded with Bethlhem that I shouldn't have told Mom, "Tomorrow we're going to church. Let's pick out an outfit and hang it out here."
Many times before these little announcements I have made to add a little excitement to her life have backfired and caused her to lose sleep or become agitated.
The worst case was Easter 2005, when the bedtime comment "Tomorrow is Easter!" caused her to have hallucinations and to believe the world was coming to an end. She was so agitated that we never made it to church.
Just two days ago we had made an appointment with another resident (not in the "Reminiscence Neighborhood" but on the floors for people with their wits about them), to take her to the P.E.O. meeting on Friday, her first visit to P.E.O. in over a year. But the poor lady called me in the morning and said she couldn't go to the meeting because she had not slept at all that night. Perhaps getting there and the social dynamics of the gathering worried her, or perhaps she has agoraphobia.
Anyway, Bethlhem and I concluded that Mom (a.k.a "Grandma") should no longer be informed about what events will take place in the morning.
From now on, it's just "Good night, sleep well. I love you."
No information about what will happen tomorrow.
Usually on Sundays I arrive at 6:30 or 7 am, help her get up, and dress her for church. Then I shower while she is at breakfast and take her to church.
Today I stayed home until my husband left for a short business trip, so I was late to arrive at Ocean View Assisted Living.
I found her at breakfast, wearing the flowered pink jacket and matching slacks I had laid out for her to wear today. She looked great, so I concluded all was well. A kind and competent young caregiver, Heidi, had gotten her up and dressed her.
We were still late for church, however, because breakfast didn't arrive until 8:30 and at 9 am she insisted on walking back to her room instead of riding in the wheelchair. After a few steps she whimpered and said it was painful, she couldn't make it, but with encouragement she did do it.
We got through the usual routine with no unusual problems: church (which she partially slept through), an ice cream cone from Baskin Robbins, a shopping trip to Sav-On (me shopping, her in the car with her ice cream), and a visit to my house.
She had hardly been at my house half an hour before she said it was time to go back to her residence--unusual for her. She hadn't even visited the bathroom yet. Usually she demands to use the bathroom about three times before I can get her back in the car to return to Ocean View.
After I got her settled in her chair for a nap back at her residence and was leaving at 2 pm, Bethlhem arrived for her 2-10 pm shift and pulled me aside to explain what had happened at 5 am.
"We checked her at 4:45 am and she was snoring, but when I happened to come by again at 5 am, she was sitting up on the edge of her bed pulling her nightgown off," began Bethlehem.
"So I said, 'Evelyn, what are you doing? It's too early to get up.'"
"'I'm getting dressed for church so I will be ready when Anne comes,' she told me.
"'Oh no, Anne won't like that,' I told her. 'You might fall down and get a broken bone, and Anne would not like that.' She seemed to think about that and to understand."
"So you were able to get her to go back to bed?" I asked.
"Yes, she went back to bed and to sleep," Bethlhem confirmed.
"Oh thank goodness," I said. "She has done that before--tried to get up at 3 am or 5 am. That's why she had a private caregiver at night for so long. But I thought she wasn't doing that any more. I haven't been much in touch with the night shift. And why are you working from 10 pm to 6 am and then starting another shift eight hours later?"
Bethlhem didn't totally explain why for two days in a row she worked graveyard shift and then started again at 2 pm--there must have been staffing problems. She is a lead caregiver in charge of 4-5 others, an immigrant from Ethiopia, kind, competent, caring, and beautiful in her early thirties.
Another unanswered question was why the Posey alarm hadn't gone off. It is supposed to make a loud noise when she sits up in bed or tries to leave the bed.
I concluded with Bethlhem that I shouldn't have told Mom, "Tomorrow we're going to church. Let's pick out an outfit and hang it out here."
Many times before these little announcements I have made to add a little excitement to her life have backfired and caused her to lose sleep or become agitated.
The worst case was Easter 2005, when the bedtime comment "Tomorrow is Easter!" caused her to have hallucinations and to believe the world was coming to an end. She was so agitated that we never made it to church.
Just two days ago we had made an appointment with another resident (not in the "Reminiscence Neighborhood" but on the floors for people with their wits about them), to take her to the P.E.O. meeting on Friday, her first visit to P.E.O. in over a year. But the poor lady called me in the morning and said she couldn't go to the meeting because she had not slept at all that night. Perhaps getting there and the social dynamics of the gathering worried her, or perhaps she has agoraphobia.
Anyway, Bethlhem and I concluded that Mom (a.k.a "Grandma") should no longer be informed about what events will take place in the morning.
From now on, it's just "Good night, sleep well. I love you."
No information about what will happen tomorrow.
Saturday, May 06, 2006
The Headless Nurse
A few months ago I glued together a couple of broken pieces on a ceramic doll that turns in a circle on a music box and returned it to Mom.
The little figure looks like a Madame Alexander doll, a childish version of a nurse in a full-skirted blue dress with a white apron.
The music box plays, "Just a spoonful of sugar helps the medicine go down, the medicine go down, the medicine go down; just a spoonful of sugar helps the medicine go down in the most delightful way."
Because Mom was a registered nurse and taught nursing at the college level, she loves listening to this little doll.
Yesterday I was singing along with the music, but I was singing "...makes the medicine go down, the medicine go down."
"I think it's helps the medicine go down,'" Mom corrected me.
"Oh! Okay," I said, and I placed the doll on the foot of her bed where she could pick it up and rewind it while sitting in her recliner during the afternoon.
Today when I came to check on Mom and help her walk back from the dining room to sit in her chair, I forgot about the doll. I eased Mom into the electric recliner and pushed the button to make it recline and lift the footrest.
But the chair jerked and there was a small noise of something breaking.
I remembered the doll, and sure enough, she had fallen to the floor and had been broken by the moving recliner. It was a clean break, though--the figure was intact except for the head having been decapitated.
She still turns in a circle and plays the music as cheerfully as ever, even without her head.
"Just a spoonful of glue helps the head to go back on, the head to go back on," she seems to be singing.
If only Mom could reclaim her lost head so easily.
The little figure looks like a Madame Alexander doll, a childish version of a nurse in a full-skirted blue dress with a white apron.
The music box plays, "Just a spoonful of sugar helps the medicine go down, the medicine go down, the medicine go down; just a spoonful of sugar helps the medicine go down in the most delightful way."
Because Mom was a registered nurse and taught nursing at the college level, she loves listening to this little doll.
Yesterday I was singing along with the music, but I was singing "...makes the medicine go down, the medicine go down."
"I think it's helps the medicine go down,'" Mom corrected me.
"Oh! Okay," I said, and I placed the doll on the foot of her bed where she could pick it up and rewind it while sitting in her recliner during the afternoon.
Today when I came to check on Mom and help her walk back from the dining room to sit in her chair, I forgot about the doll. I eased Mom into the electric recliner and pushed the button to make it recline and lift the footrest.
But the chair jerked and there was a small noise of something breaking.
I remembered the doll, and sure enough, she had fallen to the floor and had been broken by the moving recliner. It was a clean break, though--the figure was intact except for the head having been decapitated.
She still turns in a circle and plays the music as cheerfully as ever, even without her head.
"Just a spoonful of glue helps the head to go back on, the head to go back on," she seems to be singing.
If only Mom could reclaim her lost head so easily.
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