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!
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