Never mind that it's Good Friday, and that I met with two hospice people yesterday, an intake specialist and an RN.
Today I'm fielding phone calls from various other hospice people.
A chaplain wants to visit (on Good Friday morning? should he be at church?).
"Fine, go ahead," I say, "But I will not be there. And she doesn't like men. I don't know if she'll let you in the room."
[Later report: she sent him running.]
While I'm at a Good Friday quiet meditation in church, and a home health aide calls on my cell to say she will visit in the afternoon if I want or Monday if I prefer.
"Visit today if you want," I say, wondering why no one gets Good Friday afternoon off, but it turns out she doesn't want to. It's a long drive across town for only one patient, and she has to pick up her kids from day care, so we agree that she will come on Monday.
Conclusion: hospice does not pause for Jesus' death or perhaps not for death at all. ("I said I could not stop for death so he kindly stopped for me?")
Actually, they are probably underpaid and overworked, the lower working class, chaplain and all.
Hospice is so sad, from every angle.
I visited Mom later in the afternoon.
Friday, March 21, 2008
Thursday, March 20, 2008
Act V: Hospice
Today, after doing the meds and squirt of purree down the cat's throat, and the subcutaneous hydration, I drove to Mom's residence to meet the intake person from Roze Room Hospice.
Signing papers and giving Mom's medical history took over an hour. By the time I got Mom set up in her recliner and left, it was noon.
I had to be back at 3: 30 pm to meet with the hospice RN. Again I gave the health history and we discussed Mom's current needs.
At one point I asked Mom what her needs were.
"Just to go home to Telluride," she said. Right on target.
The discussions took until 6 pm, partly because Jill Murphy volunteered to give Mom an enema. I had explained that Mom had not had a bowel movement for 4-5 days, and someone had suggested that being constipated could cause her not to eat.
After Jill left, I dressed Mom and took her back to the dining room, where I spent 45 minutes trying to get her to eat and drink a little. Earlier she had refused her dinner.
I cut up her chicken and put a bite in her mouth.
She chewed it, then took it out of her mouth and dipped it in her water glass.
Then she put it back in her mouth and continued chewing, with a final result for each bite of either swallowing it or spitting it out. She did the same procedure with a few mushrooms.
With her mashed potatoes, two tiny spoonfuls were all she would eat.
She did drink an entire glass of milk by straw--very slowly.
I realized I could get her to eat if I were willing to spend an hour or two on each meal, breakfast, lunch, and dinner. Or if I could get the staff at her residence to work this hard with trying to get her to eat.
Or we could just accept that she will be eating less and will be dying.
I went directly from the feeding exercise to the Maundy Thursday service at our church.
Home again, I lit a candle and sat in the dark, reflecting on Jesus death, the commandment to love others, and the end of Mom's life.
Then, of course, I ate dinner and worked on the cat.
~~~
"A new commandment I give you, that you love one another; as I have loved you, that you also love one another." John 13:34
Signing papers and giving Mom's medical history took over an hour. By the time I got Mom set up in her recliner and left, it was noon.
I had to be back at 3: 30 pm to meet with the hospice RN. Again I gave the health history and we discussed Mom's current needs.
At one point I asked Mom what her needs were.
"Just to go home to Telluride," she said. Right on target.
The discussions took until 6 pm, partly because Jill Murphy volunteered to give Mom an enema. I had explained that Mom had not had a bowel movement for 4-5 days, and someone had suggested that being constipated could cause her not to eat.
After Jill left, I dressed Mom and took her back to the dining room, where I spent 45 minutes trying to get her to eat and drink a little. Earlier she had refused her dinner.
I cut up her chicken and put a bite in her mouth.
She chewed it, then took it out of her mouth and dipped it in her water glass.
Then she put it back in her mouth and continued chewing, with a final result for each bite of either swallowing it or spitting it out. She did the same procedure with a few mushrooms.
With her mashed potatoes, two tiny spoonfuls were all she would eat.
She did drink an entire glass of milk by straw--very slowly.
I realized I could get her to eat if I were willing to spend an hour or two on each meal, breakfast, lunch, and dinner. Or if I could get the staff at her residence to work this hard with trying to get her to eat.
Or we could just accept that she will be eating less and will be dying.
I went directly from the feeding exercise to the Maundy Thursday service at our church.
Home again, I lit a candle and sat in the dark, reflecting on Jesus death, the commandment to love others, and the end of Mom's life.
Then, of course, I ate dinner and worked on the cat.
~~~
"A new commandment I give you, that you love one another; as I have loved you, that you also love one another." John 13:34
Wednesday, March 19, 2008
Grandma and the Cat
Celeste, the cat, stopped eating and drinking three weeks ago. She's 16 years old, which translates to age 80 in people years.
When I took her to the vet on Feb. 27, the day before going out of town for a week, Dr. Kenneth Jones ordered a bunch of meds and said she would need 4 oz. of water squirted down her throat at least twice a day, as well as pureed cat food served up in the same manner.
"Fine," I said. I drove away and handed the cat off to Margaret at the Holiday Hotel for Cats.
I even endured the hour of conversation generally required when depositing a cat there, because I knew I was giving them a sick cat that would require extra care. Actually, I felt I was doing Margaret a favor; she loves a crisis with a cat that requires TLC.
She heroically did it all, even taking the cat to the vet during the week and starting hydration.
When I picked up Celeste a week later, however, I had to step in as intensive care nurse.
Margaret gave me detailed instructions on feeding by squirting pureed food down the throat, and I got more instructions and meds in a trip to the vet.
A week later, when I took the cat in again, determined to have her put to sleep, Dr. Jones' partner, Dr. Dell, talked me into giving her another week to start eating. "Her liver and kidneys and heart are fine," she said. "It would be a pity to put her to sleep when we might be able to turn her around."
And then on Monday of this week, March 17, when I was again determined to end this time-consuming charade of cat care, I discovered that Celeste had eaten some of her kibble on her own and drank half a small bowl of water. Oh well. The verdict was to give her another week and to continue the regimen.
So today at 7 am, before going to pick up Mom for her trip to Settimio's Salon, before putting her either in the hospital or on hospice, I had to work on the cat for half an hour.
Here's what I had to administer:
Morning
1. Antibiotic eye drops – one each eye
2. Cyproheptadine ¼ tablet for appetite
3. Lysine nutritional supplement—5 ml in dropper
4. Liquitinic vitamins 1 ml
5. Cefadrops—5 ml in dropper, refrig
6. Interferon—by dropper—in refrig.
7. Methimazole ear gel (for hyper thyroid)
8. Wet cat food mixed with water pureed and squirted down throat
9. 50 ml nutriwater (subcutaneous hydration--by syringe under skin)
10. Injection of Ipogen every other day: Mon Wed Fri Sun Tues
After doing all this to the cat, I had real scruples about just putting Mom on hospice at the first sign of not eating and drinking. Hospice generally means no IVs, no hydration except drinking by mouth.
Why does the cat get three weeks of hydration and squirt-down-the-throat feeding, along with a weekly CBC, but old folks just get put on hospice and allowed to die?
It didn't seem fair.
On the other hand, the cat doesn't have the option of hospice. It's one injection, euthanasia.
Old folks don't get the injection. They have to slowly die by organ failure, usually the kidney and the poison of their own wastes not cleaned from the blood.
With all these reflections, I was getting completely mixed up.
But after seeing Mom's hair rolled up in tight curlers and drenched with permanent wave fluid, I called Dr. Rosen.
"Hi," I said. "We want to wait a day or two on hospice. My brother feels that she should get two liters of saline solution and a CBC and electrolyte report before putting her on hospice."
"Oh, that's fine, I completely understand," replied Dr. Rosen.
"Can she have the saline solution in your office?" I asked.
"No, we don't do IV," she said.
"Should I take her to the ER to have it done?" I asked. "My brother said it would just take a few hours."
"No, in an older person you can't give it that fast. It will take 24 hours. You'll have to hospitalize her to do that because her residence doesn't allow IVs. But I'm certainly willing to admit her," she offered.
So we agreed that she would be admitted ASAP, as soon as a bed could be found.
I didn't say that nothing could happen until we finished at the beauty salon.
Then I called Bill to report that I had arranged for hospitalization.
"Good," he said, "if she needs it. If she's dehydrated. But if she is able to drink, you can probably take care of hydration without hospitalizing her. You and Emily are the ones who are there and can tell how she really is. I'm not there, so I will go along with whatever you decide."
I also talked with Emily, who freaked out when she heard that Bill had recommended hospitalization for rehydration.
"Bill just wants to save her because that's what surgeons do! It will cause her more suffering--she will be upset and disoriented by being moved to the hospital. He did this the last time by saying we had to give her a pacemaker. You and he insisted on that. I'm the youngest and no one thinks I know what I'm talking about. Bill always takes over because he's THE DOCTOR, and you are THE CARETAKER. Neither one of you is really looking at what she wants. She keeps saying, "I want to die." You are just putting her through more suffering."
"Well, Bill said he would defer to you and me. He doesn't want to force her into the hospital if she doesn't need it. What he really wants is the CBC and electrolyte results in order to know if she needs hydration."
Then the hospital called and told me that the bed was ready. Just bring her in after getting her vitals done at her residence.
All these conversations were taking place in Settimio's Salon, where Emily had joined me at noon, among the hairdryers and other clients, while Mom sat under a hairdryer.
"Well, Emily, it's not just Bill. I started having second thoughts about jumping into hospice without first doing a hydration. It's because I spend a half hour every morning and night working on my cat..." I tried to explain the Celeste factor.
Naturally, after talking to Emily for a few minutes, I was convinced that Mom didn't need hospitalization for hydration. And Emily did need to take charge of the situation and have her recommended course of action take priority. We would just take Mom back to her residence and do the best we could to get her to drink, if not eat.
In any case, we would let nature take its course. That's what our culture does with humans, though not with cats, at least not in our socioeconomic bracket. Until the cat has proven itself definitely beyond all hope.
I called the hospital and cancelled the bed I had just accepted.
I called Dr. Rosen: "You know, we're not going to hospitalize her after all. We're going to go ahead and start hospice today and try to get her to drink but not take any drastic measures if she won't drink. I'm so sorry for all this confusion."
"Oh no, I understand completely," she said. "These decisions are always very hard for families."
The hair was dry--Bembe combed it out, teased and sprayed it.
We took Mom back to Ocean View Assisted Living. I called the hospice people and made an appointment for tomorrow at 10 am to do intake papers.
I left Mom in the hands of Emily and the caregiver Connie.
I went to Color Me Mine with my daughter Ellen, 23 years old, and we each chose a ceramic piece and painted it.
I chose a bud vase and painted it with swirls of pink (my mother's favorite color) and kiwi green (my favorite color). I carefully added a bouquet of three purple pansies with yellow hearts. Pansies are one of my mother's favorite flowers--her mother grew them in front of the house on Main Street in Telluride.
Pansies, like violets, for remembrance.
Then we went to the Century City Mall where Ellen bought a pretty white blouse and I bought a BCBG soft green sweater with long front flaps to throw over the shoulder. Actually it's kind of a swaddling sweater.
I needed to treat myself, wrap myself in warm pretty cashmere in memory of this difficult day.
Then Ellen went to her AA meeting and I went to my Al-Anon meeting, where I work on taking care of myself and not being a caretaker of everyone from the cat to Ellen to my mother.
Clearly I have some more work to do.
Back home again, it was time to work on the cat.
When I took her to the vet on Feb. 27, the day before going out of town for a week, Dr. Kenneth Jones ordered a bunch of meds and said she would need 4 oz. of water squirted down her throat at least twice a day, as well as pureed cat food served up in the same manner.
"Fine," I said. I drove away and handed the cat off to Margaret at the Holiday Hotel for Cats.
I even endured the hour of conversation generally required when depositing a cat there, because I knew I was giving them a sick cat that would require extra care. Actually, I felt I was doing Margaret a favor; she loves a crisis with a cat that requires TLC.
She heroically did it all, even taking the cat to the vet during the week and starting hydration.
When I picked up Celeste a week later, however, I had to step in as intensive care nurse.
Margaret gave me detailed instructions on feeding by squirting pureed food down the throat, and I got more instructions and meds in a trip to the vet.
A week later, when I took the cat in again, determined to have her put to sleep, Dr. Jones' partner, Dr. Dell, talked me into giving her another week to start eating. "Her liver and kidneys and heart are fine," she said. "It would be a pity to put her to sleep when we might be able to turn her around."
And then on Monday of this week, March 17, when I was again determined to end this time-consuming charade of cat care, I discovered that Celeste had eaten some of her kibble on her own and drank half a small bowl of water. Oh well. The verdict was to give her another week and to continue the regimen.
So today at 7 am, before going to pick up Mom for her trip to Settimio's Salon, before putting her either in the hospital or on hospice, I had to work on the cat for half an hour.
Here's what I had to administer:
Morning
1. Antibiotic eye drops – one each eye
2. Cyproheptadine ¼ tablet for appetite
3. Lysine nutritional supplement—5 ml in dropper
4. Liquitinic vitamins 1 ml
5. Cefadrops—5 ml in dropper, refrig
6. Interferon—by dropper—in refrig.
7. Methimazole ear gel (for hyper thyroid)
8. Wet cat food mixed with water pureed and squirted down throat
9. 50 ml nutriwater (subcutaneous hydration--by syringe under skin)
10. Injection of Ipogen every other day: Mon Wed Fri Sun Tues
After doing all this to the cat, I had real scruples about just putting Mom on hospice at the first sign of not eating and drinking. Hospice generally means no IVs, no hydration except drinking by mouth.
Why does the cat get three weeks of hydration and squirt-down-the-throat feeding, along with a weekly CBC, but old folks just get put on hospice and allowed to die?
It didn't seem fair.
On the other hand, the cat doesn't have the option of hospice. It's one injection, euthanasia.
Old folks don't get the injection. They have to slowly die by organ failure, usually the kidney and the poison of their own wastes not cleaned from the blood.
With all these reflections, I was getting completely mixed up.
But after seeing Mom's hair rolled up in tight curlers and drenched with permanent wave fluid, I called Dr. Rosen.
"Hi," I said. "We want to wait a day or two on hospice. My brother feels that she should get two liters of saline solution and a CBC and electrolyte report before putting her on hospice."
"Oh, that's fine, I completely understand," replied Dr. Rosen.
"Can she have the saline solution in your office?" I asked.
"No, we don't do IV," she said.
"Should I take her to the ER to have it done?" I asked. "My brother said it would just take a few hours."
"No, in an older person you can't give it that fast. It will take 24 hours. You'll have to hospitalize her to do that because her residence doesn't allow IVs. But I'm certainly willing to admit her," she offered.
So we agreed that she would be admitted ASAP, as soon as a bed could be found.
I didn't say that nothing could happen until we finished at the beauty salon.
Then I called Bill to report that I had arranged for hospitalization.
"Good," he said, "if she needs it. If she's dehydrated. But if she is able to drink, you can probably take care of hydration without hospitalizing her. You and Emily are the ones who are there and can tell how she really is. I'm not there, so I will go along with whatever you decide."
I also talked with Emily, who freaked out when she heard that Bill had recommended hospitalization for rehydration.
"Bill just wants to save her because that's what surgeons do! It will cause her more suffering--she will be upset and disoriented by being moved to the hospital. He did this the last time by saying we had to give her a pacemaker. You and he insisted on that. I'm the youngest and no one thinks I know what I'm talking about. Bill always takes over because he's THE DOCTOR, and you are THE CARETAKER. Neither one of you is really looking at what she wants. She keeps saying, "I want to die." You are just putting her through more suffering."
"Well, Bill said he would defer to you and me. He doesn't want to force her into the hospital if she doesn't need it. What he really wants is the CBC and electrolyte results in order to know if she needs hydration."
Then the hospital called and told me that the bed was ready. Just bring her in after getting her vitals done at her residence.
All these conversations were taking place in Settimio's Salon, where Emily had joined me at noon, among the hairdryers and other clients, while Mom sat under a hairdryer.
"Well, Emily, it's not just Bill. I started having second thoughts about jumping into hospice without first doing a hydration. It's because I spend a half hour every morning and night working on my cat..." I tried to explain the Celeste factor.
Naturally, after talking to Emily for a few minutes, I was convinced that Mom didn't need hospitalization for hydration. And Emily did need to take charge of the situation and have her recommended course of action take priority. We would just take Mom back to her residence and do the best we could to get her to drink, if not eat.
In any case, we would let nature take its course. That's what our culture does with humans, though not with cats, at least not in our socioeconomic bracket. Until the cat has proven itself definitely beyond all hope.
I called the hospital and cancelled the bed I had just accepted.
I called Dr. Rosen: "You know, we're not going to hospitalize her after all. We're going to go ahead and start hospice today and try to get her to drink but not take any drastic measures if she won't drink. I'm so sorry for all this confusion."
"Oh no, I understand completely," she said. "These decisions are always very hard for families."
The hair was dry--Bembe combed it out, teased and sprayed it.
We took Mom back to Ocean View Assisted Living. I called the hospice people and made an appointment for tomorrow at 10 am to do intake papers.
I left Mom in the hands of Emily and the caregiver Connie.
I went to Color Me Mine with my daughter Ellen, 23 years old, and we each chose a ceramic piece and painted it.
I chose a bud vase and painted it with swirls of pink (my mother's favorite color) and kiwi green (my favorite color). I carefully added a bouquet of three purple pansies with yellow hearts. Pansies are one of my mother's favorite flowers--her mother grew them in front of the house on Main Street in Telluride.
Pansies, like violets, for remembrance.
Then we went to the Century City Mall where Ellen bought a pretty white blouse and I bought a BCBG soft green sweater with long front flaps to throw over the shoulder. Actually it's kind of a swaddling sweater.
I needed to treat myself, wrap myself in warm pretty cashmere in memory of this difficult day.
Then Ellen went to her AA meeting and I went to my Al-Anon meeting, where I work on taking care of myself and not being a caretaker of everyone from the cat to Ellen to my mother.
Clearly I have some more work to do.
Back home again, it was time to work on the cat.
Before Death: Beauty
A week ago I made an appointment for Mom to have a hair cut and permanent wave done at a salon near her residence.
She's been long overdue for this perm. At her birthday events, her long hair stuck out around her head like King Lear.
I put a plastic tiara on her head to hold it down.
~~~
Yesterday when we made the decision to put Mom on hospice, a sane person might have also cancelled the appointment for the perm.
Mom is weak, barely eating or drinking, but I dragged her out for that perm!
The three-hour plus event is a big ordeal: she had her hair washed, cut, put up in fifty tiny curling pins, soaked in the permanent wave fluid for twenty minutes, rinsed, soaked in a neutralizing fluid, rinsed, set in rollers. Then she had to sit under a hair dryer for half an hour or more and finally have her hair combed, teased, and sprayed.
This is not easy for a healthy person; for someone dying, it was almost torture.
"Take me home! I just want to go home!" she kept saying.
"No, it's just a while longer. You want to be beautiful," I told her and the hairdresser, Bembe, a Mongolian American and senior citizen, told her. (She talked about her own mother, 98 years old and living with Bembe, walking around, cooking a bit for herself.)
"No, I don't want to be beautiful. I just want to die. Leave me alone," Mom kept begging.
At some points she was so weak, almost faint, that I was afraid she might die in the hairdresser's chair. I regretted starting this, especially since she might only live a few more weeks.
I was still debating hospital or hospice with my brother Bill and sister Emily by phone.
The hospice and hospital were calling me.
"I'll bring her over soon," I told the hospital.
"I'll call you back soon," I told the hospice.
To neither one did I admit, "She's at the beauty salon. I can't admit her until we finish her perm, if she survives it."
Somehow we finished it.
Emily arrived, and we took her back to her residence.
Whatever comes, she will at least look good.
Now that's important, isn't it?
She's been long overdue for this perm. At her birthday events, her long hair stuck out around her head like King Lear.
I put a plastic tiara on her head to hold it down.
~~~
Yesterday when we made the decision to put Mom on hospice, a sane person might have also cancelled the appointment for the perm.
Mom is weak, barely eating or drinking, but I dragged her out for that perm!
The three-hour plus event is a big ordeal: she had her hair washed, cut, put up in fifty tiny curling pins, soaked in the permanent wave fluid for twenty minutes, rinsed, soaked in a neutralizing fluid, rinsed, set in rollers. Then she had to sit under a hair dryer for half an hour or more and finally have her hair combed, teased, and sprayed.
This is not easy for a healthy person; for someone dying, it was almost torture.
"Take me home! I just want to go home!" she kept saying.
"No, it's just a while longer. You want to be beautiful," I told her and the hairdresser, Bembe, a Mongolian American and senior citizen, told her. (She talked about her own mother, 98 years old and living with Bembe, walking around, cooking a bit for herself.)
"No, I don't want to be beautiful. I just want to die. Leave me alone," Mom kept begging.
At some points she was so weak, almost faint, that I was afraid she might die in the hairdresser's chair. I regretted starting this, especially since she might only live a few more weeks.
I was still debating hospital or hospice with my brother Bill and sister Emily by phone.
The hospice and hospital were calling me.
"I'll bring her over soon," I told the hospital.
"I'll call you back soon," I told the hospice.
To neither one did I admit, "She's at the beauty salon. I can't admit her until we finish her perm, if she survives it."
Somehow we finished it.
Emily arrived, and we took her back to her residence.
Whatever comes, she will at least look good.
Now that's important, isn't it?
Tuesday, March 18, 2008
The Debate: Hospice or Not?
I called Emily to report that I had indeed given permission to put Mom on hospice.
She sent emails to our brothers, Bill near Tacoma, WA, and Jim near Denver.
After informing the staff at her residence, I spent the next 2-3 hours dealing with my grief.
But at 8:30 pm it occurred to me that our brothers deserved more than an email.
I called Bill to report to him and discuss the options. He hadn't read the email and was taken by surprise.
He's a general surgeon working at an Army hospital, and he wanted to know what her CBC was and her electrolyte levels.
"When were they last done?" he asked.
"I don't know... maybe last fall," I answered.
"Well, without that information we don't know if this is an acute crisis that could be turned around with hydration or whether it is a slow decline," he continued. "You should get her blood drawn to determine those things."
"The doctor did say that putting her in the hospital for hydration was the other option," I reflected. "We could still do that if you think it would be better."
"Here's why doctors order hospice," Bill said. "They're thinking, 'How do I let this patient die without making the family upset?' So they order hospice, mostly to take care of the family."
"Oh," I said.
"What kind of doctor is it? An internist?"
"She's a gerontologist," I said.
"Oh, of course she would put Mom on hospice then," Bill said. "They're just waiting for people to die. That's what they do." He was thinking of the contrast between surgeons like himself who do everything they can to save lives vs. gerontologists who accept death when it approaches, perhaps even too soon.
"If people get too dehydrated, they can't drink even if they want to," he continued. "Their throat gets flattened. But even then you can give them a Dovhoff tube down their nose into their stomach, not for food, just for water."
"She had nasal intubation to breathe when she had that allergic reaction and her throat swelled up," I said. "That's a pretty bad procedure. I don't think she'd like it."
"After it's done, people don't even notice that they have the tube in," he said. "But if they quit taking oral liquids and have no other means of hydration, people get confused and weak. First the kidneys fail--it takes 3-6 days for kidneys to fail. If they take no liquids at all for two days in a row, then they are not able to take them. Their creatinine goes up. They become comatose from the uremia."
"You mean they are poisoned by the things not cleaned out of their blood?" I asked.
"Yes--it's a terrible way to die," he said. "But if you give her two liters of saline solution by IV, you might get her eating and drinking again."
"Well, we could do that," I agreed.
"You can have it done in the doctor's office," he said.
"No, she doesn't do that in her office. But maybe I could take her to the ER and have it done there," I continued.
"Yeah, that should be just a few hours," he said. "You wouldn't even have to hospitalize her."
"Well, I'll call the doctor in the morning," I said. "But she has an appointment for a perm at 9:30 am and that will take until 12:30 0r later. We couldn't do it until after that."
"You don't have to hydrate her if you feel she can drink enough fluids on her own," Bill said. "You can go ahead and put her on hospice and just hope that she can continue to eat and drink for as long as possible."
"Yes, she did drink some milk this evening," I said. "I think she can still drink some."
So I hung up and lay awake for part of the night wondering whether to do hospice as Emily and I had agreed or to postpone it a day and first put her in the hospital for hydration.
She sent emails to our brothers, Bill near Tacoma, WA, and Jim near Denver.
After informing the staff at her residence, I spent the next 2-3 hours dealing with my grief.
But at 8:30 pm it occurred to me that our brothers deserved more than an email.
I called Bill to report to him and discuss the options. He hadn't read the email and was taken by surprise.
He's a general surgeon working at an Army hospital, and he wanted to know what her CBC was and her electrolyte levels.
"When were they last done?" he asked.
"I don't know... maybe last fall," I answered.
"Well, without that information we don't know if this is an acute crisis that could be turned around with hydration or whether it is a slow decline," he continued. "You should get her blood drawn to determine those things."
"The doctor did say that putting her in the hospital for hydration was the other option," I reflected. "We could still do that if you think it would be better."
"Here's why doctors order hospice," Bill said. "They're thinking, 'How do I let this patient die without making the family upset?' So they order hospice, mostly to take care of the family."
"Oh," I said.
"What kind of doctor is it? An internist?"
"She's a gerontologist," I said.
"Oh, of course she would put Mom on hospice then," Bill said. "They're just waiting for people to die. That's what they do." He was thinking of the contrast between surgeons like himself who do everything they can to save lives vs. gerontologists who accept death when it approaches, perhaps even too soon.
"If people get too dehydrated, they can't drink even if they want to," he continued. "Their throat gets flattened. But even then you can give them a Dovhoff tube down their nose into their stomach, not for food, just for water."
"She had nasal intubation to breathe when she had that allergic reaction and her throat swelled up," I said. "That's a pretty bad procedure. I don't think she'd like it."
"After it's done, people don't even notice that they have the tube in," he said. "But if they quit taking oral liquids and have no other means of hydration, people get confused and weak. First the kidneys fail--it takes 3-6 days for kidneys to fail. If they take no liquids at all for two days in a row, then they are not able to take them. Their creatinine goes up. They become comatose from the uremia."
"You mean they are poisoned by the things not cleaned out of their blood?" I asked.
"Yes--it's a terrible way to die," he said. "But if you give her two liters of saline solution by IV, you might get her eating and drinking again."
"Well, we could do that," I agreed.
"You can have it done in the doctor's office," he said.
"No, she doesn't do that in her office. But maybe I could take her to the ER and have it done there," I continued.
"Yeah, that should be just a few hours," he said. "You wouldn't even have to hospitalize her."
"Well, I'll call the doctor in the morning," I said. "But she has an appointment for a perm at 9:30 am and that will take until 12:30 0r later. We couldn't do it until after that."
"You don't have to hydrate her if you feel she can drink enough fluids on her own," Bill said. "You can go ahead and put her on hospice and just hope that she can continue to eat and drink for as long as possible."
"Yes, she did drink some milk this evening," I said. "I think she can still drink some."
So I hung up and lay awake for part of the night wondering whether to do hospice as Emily and I had agreed or to postpone it a day and first put her in the hospital for hydration.
Surprised by Hospice
I stopped by my mother's residence for a brief visit at about 2 pm, not planning to stay long because on Tuesdays she has a caregiver 2-10 pm. I took a few Easter cards and cards for upcoming birthdays for her to sign.
But the staff flagged me down with alarm: "She didn't eat any breakfast or lunch, and she's refusing liquids too. She won't drink V-8 or orange juice."
I tried to get her to drink and found it to be true. She was refusing meds and liquids.
"Okay, I'll make an appointment with her doctor," I said, thinking it would be within a day or two.
"Ask for an appetite stimulant," suggested Chandita, the meds dispenser.
"Okay, that's a good idea," I agreed.
At 3 pm I called for an appointment, saying she was refusing to eat or drink, and the receptionist offered me an appointment at 4 pm.
So much for the rest of my day, I figured.
I called my sister Emily to consult with her: "I know the doctor will urge hospice," I told her. "She suggested it a year ago and six months ago."
"Well, maybe it's time," Emily said. "I'll support you if you feel the time has come to start hospice."
Indeed, shortly after 4 pm Dr. Rosen was laying out our choices: either hospitalize her in order to do hydration and blood work as well as x-rays to determine why she's not eating--or accept her decline and make her comfortable by using the services of hospice while keeping her in her familiar surroundings.
The main indicator was that she weighed only 92 pounds--down from 102 on January 16. She had lost ten pounds in two months.
The best choice was clear: hospice.
Dr. Rosen wrote out a referral to Roze Room Hospice, saying: "End stage dementia with functional decline and weight loss."
I wheeled Mom back to her residence shocked by this sudden change.
Sadness filled me: we had just celebrated her 89th birthday a week earlier. I'd been wondering how to make her money stretch out another 2-3 years. And now she might have just 3-6 months... or less.
But the staff flagged me down with alarm: "She didn't eat any breakfast or lunch, and she's refusing liquids too. She won't drink V-8 or orange juice."
I tried to get her to drink and found it to be true. She was refusing meds and liquids.
"Okay, I'll make an appointment with her doctor," I said, thinking it would be within a day or two.
"Ask for an appetite stimulant," suggested Chandita, the meds dispenser.
"Okay, that's a good idea," I agreed.
At 3 pm I called for an appointment, saying she was refusing to eat or drink, and the receptionist offered me an appointment at 4 pm.
So much for the rest of my day, I figured.
I called my sister Emily to consult with her: "I know the doctor will urge hospice," I told her. "She suggested it a year ago and six months ago."
"Well, maybe it's time," Emily said. "I'll support you if you feel the time has come to start hospice."
Indeed, shortly after 4 pm Dr. Rosen was laying out our choices: either hospitalize her in order to do hydration and blood work as well as x-rays to determine why she's not eating--or accept her decline and make her comfortable by using the services of hospice while keeping her in her familiar surroundings.
The main indicator was that she weighed only 92 pounds--down from 102 on January 16. She had lost ten pounds in two months.
The best choice was clear: hospice.
Dr. Rosen wrote out a referral to Roze Room Hospice, saying: "End stage dementia with functional decline and weight loss."
I wheeled Mom back to her residence shocked by this sudden change.
Sadness filled me: we had just celebrated her 89th birthday a week earlier. I'd been wondering how to make her money stretch out another 2-3 years. And now she might have just 3-6 months... or less.
Monday, March 17, 2008
Both Mom & the Cat
Strange that both Mom and the cat stopped eating and drinking about the same time.
I wanted to put the cat to sleep, but the vet talked me into letting her live and doing every possible measure: subcutaneous hydration, pureed food down the throat.
I'm trying to help Mom to live as long as possible too.
After struggling with the cat to get pills down her throat, I go visit Mom.
She spits out her meds, won't eat or drink.
I get impatient with Mom because I've just fought with the cat.
I can't do both of these things much longer.
I spent two hours today on Mom, 1/1/2 hours at the vet's office, not counting the hour or more morning and evening to do all the cat's intensive care.
I'm crazy.
I guess I have a sign printed on my forehead: SUCKER.
I do whatever anyone asks, at whatever cost to myself.
I've got to stop this.
I wanted to put the cat to sleep, but the vet talked me into letting her live and doing every possible measure: subcutaneous hydration, pureed food down the throat.
I'm trying to help Mom to live as long as possible too.
After struggling with the cat to get pills down her throat, I go visit Mom.
She spits out her meds, won't eat or drink.
I get impatient with Mom because I've just fought with the cat.
I can't do both of these things much longer.
I spent two hours today on Mom, 1/1/2 hours at the vet's office, not counting the hour or more morning and evening to do all the cat's intensive care.
I'm crazy.
I guess I have a sign printed on my forehead: SUCKER.
I do whatever anyone asks, at whatever cost to myself.
I've got to stop this.
Sunday, March 16, 2008
Forgetting How To Eat
I pick up the crumbs of my day after spending 9:15 am to 2:15 pm taking care of my mother.
Devastating.
Debilitating.
I lay in bed for an hour after getting home from taking her back to Ocean View Assisted Living. I needed to recharge my batteries.
~~~
The day begins with squirting food and meds down the cat's throat, an increasingly difficult struggle as the cat gets healthier and more able to fight me off. There's cat food all over one leg of my pajamas, where I hold her down, wrapped in a towel, for the feeding.
Then I do the subcutaneous hydration.
After that I can take and shower and get dressed.
I arrive at 9:15 to take Mom to church for Palm Sunday, hoping she'd had her meds so we could roll out the door.
No chance.
"I waited until you came," Chhandita says. "She won't take them for me."
So we begin to work on the meds. Mom spits the first capsule out of her mouth when Chhandita puts it in.
For me, this is a replay of the scene an hour ago with the cat. My patience is already gone so early in the morning.
"If you don't take your pills, you're not going to church," I say. "You can just go back to your chair and sit in this room."
"I want to go to church," she whimpers.
"Then take your meds!" I yell at her. "We're not going anywhere unless you can swallow those pills."
She then swallows each down, followed by juice. Twenty minutes pass before we start toward the elevator.
In the car, Mom is crying and trying to defend herself against my anger.
Usually I write down the things she says, but this time I just drive on, trying to ignore her incoherent babbling.
"I just want to go to heaven," she repeats. "I'll be fine there. They know I'm a good girl."
~~~
She mumbles and hums during church, inappropriately. Time to stop taking her to church, I think to myself, if she's going to bother other people.
~~~
She eats very little afterward at my house, though I serve her one of her favorite foods, a waffle. It falls out of her mouth. She has forgotten how to eat. Somehow she gets down a few bites, half a banana, some grapes.
"Time to go back," I say finally.
"Oh, so you want to get rid of me," she says.
It's an automatic response, I tell myself.
Anytime I say "Time to go back," she will say "So you're getting rid of me."
Don't take it personally.
It's so hard to spend hours with her and then be accused of not caring when I finally take her back. She hooks me again and again, raising the ever-present guilt and anger.
I put her in the car and we drive back.
After I help her out of the car and into the wheelchair, she suddenly vomits up everything she had eaten for lunch. All over her nice clothes. I scoop it up, clean her up, wearily push her back to her room. There I change her shirt, clean her face, give her gum to chew.
"I'm going now," I say finally.
"You're getting rid of me."
When I get home, I collapse in tears for an hour.
Devastating.
Debilitating.
I lay in bed for an hour after getting home from taking her back to Ocean View Assisted Living. I needed to recharge my batteries.
~~~
The day begins with squirting food and meds down the cat's throat, an increasingly difficult struggle as the cat gets healthier and more able to fight me off. There's cat food all over one leg of my pajamas, where I hold her down, wrapped in a towel, for the feeding.
Then I do the subcutaneous hydration.
After that I can take and shower and get dressed.
I arrive at 9:15 to take Mom to church for Palm Sunday, hoping she'd had her meds so we could roll out the door.
No chance.
"I waited until you came," Chhandita says. "She won't take them for me."
So we begin to work on the meds. Mom spits the first capsule out of her mouth when Chhandita puts it in.
For me, this is a replay of the scene an hour ago with the cat. My patience is already gone so early in the morning.
"If you don't take your pills, you're not going to church," I say. "You can just go back to your chair and sit in this room."
"I want to go to church," she whimpers.
"Then take your meds!" I yell at her. "We're not going anywhere unless you can swallow those pills."
She then swallows each down, followed by juice. Twenty minutes pass before we start toward the elevator.
In the car, Mom is crying and trying to defend herself against my anger.
Usually I write down the things she says, but this time I just drive on, trying to ignore her incoherent babbling.
"I just want to go to heaven," she repeats. "I'll be fine there. They know I'm a good girl."
~~~
She mumbles and hums during church, inappropriately. Time to stop taking her to church, I think to myself, if she's going to bother other people.
~~~
She eats very little afterward at my house, though I serve her one of her favorite foods, a waffle. It falls out of her mouth. She has forgotten how to eat. Somehow she gets down a few bites, half a banana, some grapes.
"Time to go back," I say finally.
"Oh, so you want to get rid of me," she says.
It's an automatic response, I tell myself.
Anytime I say "Time to go back," she will say "So you're getting rid of me."
Don't take it personally.
It's so hard to spend hours with her and then be accused of not caring when I finally take her back. She hooks me again and again, raising the ever-present guilt and anger.
I put her in the car and we drive back.
After I help her out of the car and into the wheelchair, she suddenly vomits up everything she had eaten for lunch. All over her nice clothes. I scoop it up, clean her up, wearily push her back to her room. There I change her shirt, clean her face, give her gum to chew.
"I'm going now," I say finally.
"You're getting rid of me."
When I get home, I collapse in tears for an hour.
Saturday, March 15, 2008
"Is That Why You're Getting Rid of Me?"
I was planning only a short visit today because I had put so many hours into Mom and the P.E.O. meeting yesterday.
I went over about 4 pm, hoping to walk her to dinner and leave.
"Hi, Mom, how are you?"
"Oh Anne, thank goodness you came. Now can we go to your house?"
"Well, if you want to. We were there yesterday for the P.E.O. meeting, remember?"
"Yes, that was very nice. Can we go now?"
So I took her to my house.
She didn't say "I want to go back" shortly after arriving, as she usually does.
Instead she sat there, eating a bite or two of what I placed in front of her.
I brought the dog in. I put the dog out.
I turned on the tv. I turned it off.
Finally I said, "It's time to go now. I need to work on the taxes. "
"Is that why you're getting rid of me?" she asked.
Yes, I thought, I need do something besides take care of you and the cat, which requires a half hour morning and evening of forced feeding, meds, and subcutaneous hydration.
I said, "I finished your taxes and sent them to the tax lady, but now I need to do mine."
But her words hit me like a hurricane: You don't love me. I am a chore. You just want to get rid of me.
Never mind that I just spent eight hours yesterday on you and the P.E.O. meeting.
Today you want to stay at my house all evening and not go back.
It's never enough.
When I got back from taking her to her residence, I cried.
I went over about 4 pm, hoping to walk her to dinner and leave.
"Hi, Mom, how are you?"
"Oh Anne, thank goodness you came. Now can we go to your house?"
"Well, if you want to. We were there yesterday for the P.E.O. meeting, remember?"
"Yes, that was very nice. Can we go now?"
So I took her to my house.
She didn't say "I want to go back" shortly after arriving, as she usually does.
Instead she sat there, eating a bite or two of what I placed in front of her.
I brought the dog in. I put the dog out.
I turned on the tv. I turned it off.
Finally I said, "It's time to go now. I need to work on the taxes. "
"Is that why you're getting rid of me?" she asked.
Yes, I thought, I need do something besides take care of you and the cat, which requires a half hour morning and evening of forced feeding, meds, and subcutaneous hydration.
I said, "I finished your taxes and sent them to the tax lady, but now I need to do mine."
But her words hit me like a hurricane: You don't love me. I am a chore. You just want to get rid of me.
Never mind that I just spent eight hours yesterday on you and the P.E.O. meeting.
Today you want to stay at my house all evening and not go back.
It's never enough.
When I got back from taking her to her residence, I cried.
Friday, March 14, 2008
Hosting the P.E.O. Meeting
I got up early, vacuumed the house, set out a table cloth and St. Patrick's Day plates, went to buy a cake for the P.E.O. meeting at my house, and then picked up Mom from her residence.
When I got back to the house, several ladies were parked out in front waiting.
I let them in, brought Mom into the house in her wheelchair, and began hosting the P.E.O. sisters.
After a few initial greetings, Mom said, "I want to go back now."
"No, we're going to have the P.E.O. meeting," I said. "I can't take you back. Here are some strawberries and other fruit."
I plied her with food; we sang Happy Birthday and she blew out one candle.
But the food fell out of her mouth onto her blouse. She was hunched over and not swallowing after chewing. It just fell out.
The meeting began. I couldn't attend to her and the ladies at once.
One of the ladies lost the keys to her car, so we spent most of the morning searching the street, the car, the lawns and sidewalks and the house for her keys.
It was a disaster.
Finally it was over and I took Mom back to Ocean View Assisted Living.
Never again, I said to myself.
She's not good enough to sit through a meeting like that. It's pointless.
I am trying to push her toward life, but she is declining.
I need to accept that reality and stop all this effort.
When I got back to the house, several ladies were parked out in front waiting.
I let them in, brought Mom into the house in her wheelchair, and began hosting the P.E.O. sisters.
After a few initial greetings, Mom said, "I want to go back now."
"No, we're going to have the P.E.O. meeting," I said. "I can't take you back. Here are some strawberries and other fruit."
I plied her with food; we sang Happy Birthday and she blew out one candle.
But the food fell out of her mouth onto her blouse. She was hunched over and not swallowing after chewing. It just fell out.
The meeting began. I couldn't attend to her and the ladies at once.
One of the ladies lost the keys to her car, so we spent most of the morning searching the street, the car, the lawns and sidewalks and the house for her keys.
It was a disaster.
Finally it was over and I took Mom back to Ocean View Assisted Living.
Never again, I said to myself.
She's not good enough to sit through a meeting like that. It's pointless.
I am trying to push her toward life, but she is declining.
I need to accept that reality and stop all this effort.
Thursday, March 13, 2008
The Day After
When I stopped by to check on Mom today, she was in complete sleep mode, the typical sleepy day that occurs after a heavy day of social interaction.
She did not open her eyes when I greeted her, barely spoke to me.
I learned that Emily and her son Duncan Andrew had visited earlier in the day.
Too bad that he had seen her in this condition instead of at her alert, communicative best as she was yesterday. He returns to the Naval Academy in Anapolis and probably won't see his grandmother again before she dies.
"She's like a skeleton," he told Emily.
Mom can look very bad when she's out of it.
She did not open her eyes when I greeted her, barely spoke to me.
I learned that Emily and her son Duncan Andrew had visited earlier in the day.
Too bad that he had seen her in this condition instead of at her alert, communicative best as she was yesterday. He returns to the Naval Academy in Anapolis and probably won't see his grandmother again before she dies.
"She's like a skeleton," he told Emily.
Mom can look very bad when she's out of it.
Wednesday, March 12, 2008
Wednesday, February 27, 2008
Not Getting Any Attention
Again I didn't get to Ocean View to visit Mom until about 6:30 pm. I've been busy preparing to leave for a week's trip to the East coast. Today I took the cat to the vet and the Holiday Hotel for cats. (The cat had suddenly stopped eating and was diagnosed with hyperthyroid disease, so I was grateful that Margaret at the hotel even took her.)
When I arrived to visit Mom, she was sitting in her recliner in her nightgown, covered with blankets, her eyes closed. I always kneel on the floor and put my face in front of hers to talk with her.
"Hi, Mom! How are you?" I asked cheerily.
"Poorly!" she said, opening her eyes a little.
"Poorly? Why? What's been happening?"
"I'm not getting any attention," she snapped back, accusing me.
"Oh, I see. But Connie was here today. She took you downstairs to listen to the music," I argued.
"Yes, but I just want to see you."
"And you got a bag of popcorn to eat while you were there," I continued, having already had brief report from Connie.
"Yes."
"Well, I don't think you are doing so poorly," I said. "You look good to me."
After a bit more chat, I broke the news to her:
"I'm going to visit Ellen and check on her," I said. "In Connecticut, where she's in college again."
"So you're going to leave me," she commented.
"Yes, I will be gone for a week. But Connie and the others here will take good care of you," I continued.
I fussed over her, gave her some grapes, put some sugarless candy from the cupboard into her candy jar.
I wrote a check for a cash advance to Connie, so she can pay her property tax and not lose the home she bought a year ago with her husband, now unemployed. I'm paying her for the next 15 weeks. We did this on about December 1 too. She offered to visit Mom more often, because she needs the money, but I said no because Mom is running out of money. Her monthly income doesn't cover the cost of living at Sunrise. She needs an extra $2-3,000 per month from the money she has from selling her home in Boulder, but that amount is running low now.
I left typed notes with phone numbers and contact information to reach my sister and brothers on the door and in the offices of the Reminiscence Neighborhood and of the medical supervisor.
Then I left.
I will try to visit her tomorrow before leaving for the airport, but realisitically, I don't expect that to happen.
When I arrived to visit Mom, she was sitting in her recliner in her nightgown, covered with blankets, her eyes closed. I always kneel on the floor and put my face in front of hers to talk with her.
"Hi, Mom! How are you?" I asked cheerily.
"Poorly!" she said, opening her eyes a little.
"Poorly? Why? What's been happening?"
"I'm not getting any attention," she snapped back, accusing me.
"Oh, I see. But Connie was here today. She took you downstairs to listen to the music," I argued.
"Yes, but I just want to see you."
"And you got a bag of popcorn to eat while you were there," I continued, having already had brief report from Connie.
"Yes."
"Well, I don't think you are doing so poorly," I said. "You look good to me."
After a bit more chat, I broke the news to her:
"I'm going to visit Ellen and check on her," I said. "In Connecticut, where she's in college again."
"So you're going to leave me," she commented.
"Yes, I will be gone for a week. But Connie and the others here will take good care of you," I continued.
I fussed over her, gave her some grapes, put some sugarless candy from the cupboard into her candy jar.
I wrote a check for a cash advance to Connie, so she can pay her property tax and not lose the home she bought a year ago with her husband, now unemployed. I'm paying her for the next 15 weeks. We did this on about December 1 too. She offered to visit Mom more often, because she needs the money, but I said no because Mom is running out of money. Her monthly income doesn't cover the cost of living at Sunrise. She needs an extra $2-3,000 per month from the money she has from selling her home in Boulder, but that amount is running low now.
I left typed notes with phone numbers and contact information to reach my sister and brothers on the door and in the offices of the Reminiscence Neighborhood and of the medical supervisor.
Then I left.
I will try to visit her tomorrow before leaving for the airport, but realisitically, I don't expect that to happen.
Tuesday, February 26, 2008
Can I Live With You?
I stopped to visit Mom today about 6 pm, after taking the dog and cat to the vet, after teaching in the morning and staying on campus until 3 pm so two students could make up the midterm they missed last week.
Connie, the private caregiver, was with Mom, as she is on Tuesdays 2-10 pm and Wednesdays 5pm - 1 am. I greeted them both. Mom was sitting in her recliner watching the musical Annie on her television.
"How are you?" I began. "Did you have your dinner tonight?"
"Yes, but I'd like to come up to your house for supper," Mom said. "Can I do that? Can I take Connie and live with you? I don't like being here. I'd rather be with you."
Wham--all these demands, when I was doing a very brief visit and preparing to leave for a week to travel to the East coast.
"Well, Connie can't live at my house. She has a husband and two kids. She doesn't want to leave them," I began.
"But I could live with you," she continued.
"Well, I don't think that would work very well. I'd have to be there all the time to take care of you and cook three nice meals a day, like the ones they give you here. I couldn't take you to the bathroom all day and do your bath every night. I have to teach my classes," I tried to explain.
"Oh! Well, I guess you can't. Then I want to go to the Chapter House where my mother lived," she said.
"That's in Colorado, a long way from me. I'd have to move to Colorado, and I can't do that."
She pretty much accepted these realities, once reminded of them.
But her initial joy over her new plan--moving in with me--was so touching. I felt bad that actually I am planning to be away for a week... she will be abandoned, from her point of view.
Connie, the private caregiver, was with Mom, as she is on Tuesdays 2-10 pm and Wednesdays 5pm - 1 am. I greeted them both. Mom was sitting in her recliner watching the musical Annie on her television.
"How are you?" I began. "Did you have your dinner tonight?"
"Yes, but I'd like to come up to your house for supper," Mom said. "Can I do that? Can I take Connie and live with you? I don't like being here. I'd rather be with you."
Wham--all these demands, when I was doing a very brief visit and preparing to leave for a week to travel to the East coast.
"Well, Connie can't live at my house. She has a husband and two kids. She doesn't want to leave them," I began.
"But I could live with you," she continued.
"Well, I don't think that would work very well. I'd have to be there all the time to take care of you and cook three nice meals a day, like the ones they give you here. I couldn't take you to the bathroom all day and do your bath every night. I have to teach my classes," I tried to explain.
"Oh! Well, I guess you can't. Then I want to go to the Chapter House where my mother lived," she said.
"That's in Colorado, a long way from me. I'd have to move to Colorado, and I can't do that."
She pretty much accepted these realities, once reminded of them.
But her initial joy over her new plan--moving in with me--was so touching. I felt bad that actually I am planning to be away for a week... she will be abandoned, from her point of view.
Wednesday, February 20, 2008
In Search of Song
I succeeded in another brief visit today.
Hearing singing on the first floor at 4 pm, I rushed her down to hear it, but the 3 pm weekly program had just ended.
We got popcorn and the local newspaper and returned to her floor.
Then I helped her to walk 100 feet with her walker from her room to the dining area. She can still walk pretty well, but I stand with my hand on her back to make sure she doesn't lose her balance and fall backward. I pull the wheelchair behind me because sometimes she walks fifty feet or less and has to sit down.
For several months I wasn't making her walk--she walked only once a week or less with Connie. But now I am trying to make sure she continues to walk, so she won't forget how and so her turned in feet will straighten out a little.
I left by 5 pm, saying as I always do, "I'll see you tomorrow at 2 pm."
I used to say the actual time I expect to arrive--maybe 4 pm or 11 am--but now I always say "2 pm" and she feels secure in this.
Hearing singing on the first floor at 4 pm, I rushed her down to hear it, but the 3 pm weekly program had just ended.
We got popcorn and the local newspaper and returned to her floor.
Then I helped her to walk 100 feet with her walker from her room to the dining area. She can still walk pretty well, but I stand with my hand on her back to make sure she doesn't lose her balance and fall backward. I pull the wheelchair behind me because sometimes she walks fifty feet or less and has to sit down.
For several months I wasn't making her walk--she walked only once a week or less with Connie. But now I am trying to make sure she continues to walk, so she won't forget how and so her turned in feet will straighten out a little.
I left by 5 pm, saying as I always do, "I'll see you tomorrow at 2 pm."
I used to say the actual time I expect to arrive--maybe 4 pm or 11 am--but now I always say "2 pm" and she feels secure in this.
Tuesday, February 19, 2008
Popcorn
One of the surviving pleasures in Mom's life is a bag of popcorn.
Her residence has a popcorn machine in the lobby, and whenever she passes it, she demands some, though she often can't remember the word.
"I want some of that candy," she will say.
For a couple of years, she wasn't allowed to eat popcorn because her swallowing has become less competent; her potential for choking is great. But because she loves the popcorn so much, I gave in and started letting her have it again.
I think she'd rather die by asphyxiation from popcorn than never have it.
I came to visit her briefly even though her private caregiver, Connie, came today for 8 hrs.
I wheeled her down to the first floor, got her some popcorn, and wheeled her right back to her own floor, where I handed her into the care of Connie.
She was content with that, though at first as always she had demanded to be taken to my house.
I succeeded with my plan.
Her residence has a popcorn machine in the lobby, and whenever she passes it, she demands some, though she often can't remember the word.
"I want some of that candy," she will say.
For a couple of years, she wasn't allowed to eat popcorn because her swallowing has become less competent; her potential for choking is great. But because she loves the popcorn so much, I gave in and started letting her have it again.
I think she'd rather die by asphyxiation from popcorn than never have it.
I came to visit her briefly even though her private caregiver, Connie, came today for 8 hrs.
I wheeled her down to the first floor, got her some popcorn, and wheeled her right back to her own floor, where I handed her into the care of Connie.
She was content with that, though at first as always she had demanded to be taken to my house.
I succeeded with my plan.
Monday, February 18, 2008
Knocking Things Over
I arrived at Mom's residence at 4:30 pm, determined to keep my cool and spend no more than an hour of my day. I planned to take her to my house for some leftover spaghetti dinner and return her.
"How's everything?" I asked a caregiver, cheerily.
"Well, okay... she did knock over her V-8," Claudia began.
"At the dinner table? On purpose?" I asked.
"Yes, we had to change the tablecloth, and then she poured out her water on the table too."
"Oh dear!" I said, thanking Claudia for her work in cleaning up the mess.
Another big protest by Mom, a display of her feelings of anger over having to be at this residence and not getting enough attention. It was a hook she has used before; on other days it has caused me to feel upset and embarrassed.
But this time it didn't bother me. It even seemed funny--and I knew it was only because I had arrived so determined not to be pulled into her drama that I still felt calm.
Options: scold her and tell her that I would not take her to my house today because she did that? Or ignore it and take her to my house as planned?
I decided that scolding and expecting her to remember or change her behavior would be craziness on my part.
I took her to my house and gave her the spaghetti dinner (from the freezer, the spaghetti with sauce from her favorite restaurant, The Blue Parrot Cafe in Louisville, near Boulder).
She enjoyed it, and I took her back.
All within the space of an hour, as planned.
"How's everything?" I asked a caregiver, cheerily.
"Well, okay... she did knock over her V-8," Claudia began.
"At the dinner table? On purpose?" I asked.
"Yes, we had to change the tablecloth, and then she poured out her water on the table too."
"Oh dear!" I said, thanking Claudia for her work in cleaning up the mess.
Another big protest by Mom, a display of her feelings of anger over having to be at this residence and not getting enough attention. It was a hook she has used before; on other days it has caused me to feel upset and embarrassed.
But this time it didn't bother me. It even seemed funny--and I knew it was only because I had arrived so determined not to be pulled into her drama that I still felt calm.
Options: scold her and tell her that I would not take her to my house today because she did that? Or ignore it and take her to my house as planned?
I decided that scolding and expecting her to remember or change her behavior would be craziness on my part.
I took her to my house and gave her the spaghetti dinner (from the freezer, the spaghetti with sauce from her favorite restaurant, The Blue Parrot Cafe in Louisville, near Boulder).
She enjoyed it, and I took her back.
All within the space of an hour, as planned.
Who's the Crazy One?
Let's see here: Mom has Lewy Body Dementia and lives on the secure floor of an assisted living facility, along with Alzheimer's patients and others with vascular dementia or similar types of impairment.
This is not a fun place to live, not a good stage of life to be in--almost 89 years old, approaching death--but I try to make her happy.
I think that my daily visits and the excursions on which I take her should make her content with her situation, along with the medications. She takes Zoloft for depression and Seroquel, an anti-anxiety med.
She's depressed and irritable, but I keep trying to fix everything for her.
I think, "If I do x, y, and z, she will be content and enjoy her remaining days."
Duh-- it's impossible. She's not going to be happy with her limited, repetitive daily cycle.
She's the sane one, depressed about it all. She's going to be unhappy and tell me about it.
I'm in denial, losing my sanity over trying to interact with her, take her out, cheer her up.
I need to accept reality and stop trying.
For my own sanity, I need to stay away from her or at least limit my time with her to one hour per day. These 5-6 hour excursions are killers. She says things that hook me into feeling bad for her, trying harder to spend time with her and take care of her.
But no matter what I do, she is still going to be gloomy about going back to Ocean View Assisted Living and being just another of the thirty crazy old people on her floor.
What she would really like is for me to take her into my home and spend 24 hours per day taking care of her: meals, bathroom trips, bathing, conversation, excursions, medical visits.
I can't do that, and even the amount of time I'm giving her right now is debilitating to my emotional state and my energy to carry out the other work of my life.
I don't know how people do it who are caring for an LBD parent or spouse in their own home, with or without help.
I do know that all of them sooner or later give up and place their family member in a care facility.
Comments on this subject by Melody Beattie in The Language of Letting Go (The Hazelden Foundation, 1990):
We can learn not to get hooked into unhealthy, self-defeating behaviors in relationships--behaviors such as caretaking, controlling, discounting ourselves, and believing lies.
We can learn to watch for and identify hooks, and choose not to allow ourselves to be hooked.
Often, people do things consciously or without thinking that pull us into a series of our self-defeating behaviors we call codependency. More often than not, these hooks can be almost deliberate, and the results predictable.
This is not a fun place to live, not a good stage of life to be in--almost 89 years old, approaching death--but I try to make her happy.
I think that my daily visits and the excursions on which I take her should make her content with her situation, along with the medications. She takes Zoloft for depression and Seroquel, an anti-anxiety med.
She's depressed and irritable, but I keep trying to fix everything for her.
I think, "If I do x, y, and z, she will be content and enjoy her remaining days."
Duh-- it's impossible. She's not going to be happy with her limited, repetitive daily cycle.
She's the sane one, depressed about it all. She's going to be unhappy and tell me about it.
I'm in denial, losing my sanity over trying to interact with her, take her out, cheer her up.
I need to accept reality and stop trying.
For my own sanity, I need to stay away from her or at least limit my time with her to one hour per day. These 5-6 hour excursions are killers. She says things that hook me into feeling bad for her, trying harder to spend time with her and take care of her.
But no matter what I do, she is still going to be gloomy about going back to Ocean View Assisted Living and being just another of the thirty crazy old people on her floor.
What she would really like is for me to take her into my home and spend 24 hours per day taking care of her: meals, bathroom trips, bathing, conversation, excursions, medical visits.
I can't do that, and even the amount of time I'm giving her right now is debilitating to my emotional state and my energy to carry out the other work of my life.
I don't know how people do it who are caring for an LBD parent or spouse in their own home, with or without help.
I do know that all of them sooner or later give up and place their family member in a care facility.
Comments on this subject by Melody Beattie in The Language of Letting Go (The Hazelden Foundation, 1990):
We can learn not to get hooked into unhealthy, self-defeating behaviors in relationships--behaviors such as caretaking, controlling, discounting ourselves, and believing lies.
We can learn to watch for and identify hooks, and choose not to allow ourselves to be hooked.
Often, people do things consciously or without thinking that pull us into a series of our self-defeating behaviors we call codependency. More often than not, these hooks can be almost deliberate, and the results predictable.
Sunday, February 17, 2008
"You Ditched Me"
This morning I tip-toed into the Reminiscence Neighborhood, nervous about what I might find. Would it be like Friday when Mom hadn't had breakfast and was refusing her meds? Or would I be able to take her out to church with a minimum of fuss?
I found her settled into her recliner in her room. Good! She was done with breakfast, though she looked a bit agitated. Someone had applied lipstick all around her mouth in a sloppy way--I would have to fix that before we left.
"Hi, Mom, it's Anne. Are you ready for church?" I asked, pushing the recliner's control to make her sit up and to transfer her to the wheelchair.
"You ditched me yesterday!" she hissed. "I was going to watch the news with you, how John is winning, but you never came." [Note: she still thinks he's running for President.]
"What?"
"I cried all night. Oh well, it doesn't matter now."
I was stunned and felt tears come to my eyes. Not only did she not remember that I had come yesterday, but she thought I had "ditched" her.
"Don't you remember that we went and got a Nestle's Crunch?" I reminded her. "I came to see you yesterday."
"Oh yes, I remember. But you left without saying goodbye. You ditched me."
I didn't even argue it, just moved her into the wheelchair.
"My back is bare!" she cried, so I adjusted her blouse and sweater to make sure her waist was still covered after the transfer.
"Here's your purse," I said numbly.
"I wish you'd let me have your purse. You have nicer purses."
"Me? You don't like my canvas bags."
"You went away and your never came back. I cried all night--I did!"
I didn't answer. All that time I had given her yesterday, apparently to naught.
"I forgive you now," she continued. "I thought we could all watch tv together, but I just saw it myself, down in the dungeon."
Okay, I told myself, that's hallucination, thinking some place here is a dungeon.
"You said you'd come back, that we could look at it together, how John was winning, but you never did. I cried myself to sleep."
By now we had completed the trip by two elevators to the basement parking garage, and I was lifting her into the car.
We drove silently and without much traffic to San Marino Community Church where a friend of mine, Karen Berns, was preaching today. I turned the classical music up high so there'd be something to listen to. I didn't feel like talking, and I needed to distract her from this track she was on.
We arrived early for the service, and Mom was cooperative during it, nodding her head to the left and right with the rhythm of the hymns being sung.
After the service Karen and her husband invited us to go out to lunch, but I declined. Mom is not patient with sitting in a restaurant; I wouldn't be able to enjoy it.
Instead I drove her to the Huntington Library, just a few blocks away, thinking it would brighten her day as well as mine to wheel through the gardens, maybe take a peek at the Ellesmere Chaucer manuscript.
The roses weren't blooming, but I pushed her wheelchair through groves of huge camellia bushes and trees.
"I want one of them," she said, so I picked up fallen blossoms as we walked; she had a lap full of various kinds: luscious magenta, striped pink and white, single-petal red with huge stamens.
We spent maybe an hour there until she demanded to go home and we started back. I got her a butter pecan ice cream cone and myself mint chocolate chip.
On the way back, traffic stopped: I forgot that people would be driving toward the beach on this holiday weekend. Though I left the freeway to take city streets, our driving time was still doubled; as we neared her residence it was almost 4 pm.
"Now let's go to your house," she said, unaware that her six hours with me today was the limit.
I sat there with my hands on the steering wheel unsure how to explain to her that she was returning to Ocean View Assisted Living.
"No, the sun is going down," I finally said. "It's time to go back to Ocean View."
She started to argue with me, but I put my hands over my ears as I drove. It was just too painful to listen to more demands. We drove into the parking garage.
"My back is bare," she screeched as I eased her from the front carseat into her wheelchair, but actually it wasn't bare. I had carefully pulled the blouse and sweater down before the movement. "I hate you!" I thought to myself. "You say this even when your back is covered and warm. Your demands never stop."
"I love you," she said to me as if she had read my negative thoughts. "Thank you for everything you do."
I didn't answer. Somehow the correct reply just would not come out of my mouth.
I arrived home at 4:15 pm and, just like Friday, required more than an hour of rest and reflection before feeling able to start any other task.
Spending six hours with her exhausts me.
~~~
I made three decisions:
1) I will not take her out of Santa Irena again. Not to Women-Church in Claremont next week, not anywhere.
2) She will stay on a narrow track: her residence, church, my house--well, maybe 2-3 more P.E.O. meetings before I pull that plug too. That's all she really wants: to be at my house or her residence or church. No use taking her to the Huntington when what she really wanted was to sit in my kitchen.
3) I will go on a diet for time spent with her, limiting it to one hour per day. I just can't handle these longer days.
I found her settled into her recliner in her room. Good! She was done with breakfast, though she looked a bit agitated. Someone had applied lipstick all around her mouth in a sloppy way--I would have to fix that before we left.
"Hi, Mom, it's Anne. Are you ready for church?" I asked, pushing the recliner's control to make her sit up and to transfer her to the wheelchair.
"You ditched me yesterday!" she hissed. "I was going to watch the news with you, how John is winning, but you never came." [Note: she still thinks he's running for President.]
"What?"
"I cried all night. Oh well, it doesn't matter now."
I was stunned and felt tears come to my eyes. Not only did she not remember that I had come yesterday, but she thought I had "ditched" her.
"Don't you remember that we went and got a Nestle's Crunch?" I reminded her. "I came to see you yesterday."
"Oh yes, I remember. But you left without saying goodbye. You ditched me."
I didn't even argue it, just moved her into the wheelchair.
"My back is bare!" she cried, so I adjusted her blouse and sweater to make sure her waist was still covered after the transfer.
"Here's your purse," I said numbly.
"I wish you'd let me have your purse. You have nicer purses."
"Me? You don't like my canvas bags."
"You went away and your never came back. I cried all night--I did!"
I didn't answer. All that time I had given her yesterday, apparently to naught.
"I forgive you now," she continued. "I thought we could all watch tv together, but I just saw it myself, down in the dungeon."
Okay, I told myself, that's hallucination, thinking some place here is a dungeon.
"You said you'd come back, that we could look at it together, how John was winning, but you never did. I cried myself to sleep."
By now we had completed the trip by two elevators to the basement parking garage, and I was lifting her into the car.
We drove silently and without much traffic to San Marino Community Church where a friend of mine, Karen Berns, was preaching today. I turned the classical music up high so there'd be something to listen to. I didn't feel like talking, and I needed to distract her from this track she was on.
We arrived early for the service, and Mom was cooperative during it, nodding her head to the left and right with the rhythm of the hymns being sung.
After the service Karen and her husband invited us to go out to lunch, but I declined. Mom is not patient with sitting in a restaurant; I wouldn't be able to enjoy it.
Instead I drove her to the Huntington Library, just a few blocks away, thinking it would brighten her day as well as mine to wheel through the gardens, maybe take a peek at the Ellesmere Chaucer manuscript.
The roses weren't blooming, but I pushed her wheelchair through groves of huge camellia bushes and trees.
"I want one of them," she said, so I picked up fallen blossoms as we walked; she had a lap full of various kinds: luscious magenta, striped pink and white, single-petal red with huge stamens.
We spent maybe an hour there until she demanded to go home and we started back. I got her a butter pecan ice cream cone and myself mint chocolate chip.
On the way back, traffic stopped: I forgot that people would be driving toward the beach on this holiday weekend. Though I left the freeway to take city streets, our driving time was still doubled; as we neared her residence it was almost 4 pm.
"Now let's go to your house," she said, unaware that her six hours with me today was the limit.
I sat there with my hands on the steering wheel unsure how to explain to her that she was returning to Ocean View Assisted Living.
"No, the sun is going down," I finally said. "It's time to go back to Ocean View."
She started to argue with me, but I put my hands over my ears as I drove. It was just too painful to listen to more demands. We drove into the parking garage.
"My back is bare," she screeched as I eased her from the front carseat into her wheelchair, but actually it wasn't bare. I had carefully pulled the blouse and sweater down before the movement. "I hate you!" I thought to myself. "You say this even when your back is covered and warm. Your demands never stop."
"I love you," she said to me as if she had read my negative thoughts. "Thank you for everything you do."
I didn't answer. Somehow the correct reply just would not come out of my mouth.
I arrived home at 4:15 pm and, just like Friday, required more than an hour of rest and reflection before feeling able to start any other task.
Spending six hours with her exhausts me.
~~~
I made three decisions:
1) I will not take her out of Santa Irena again. Not to Women-Church in Claremont next week, not anywhere.
2) She will stay on a narrow track: her residence, church, my house--well, maybe 2-3 more P.E.O. meetings before I pull that plug too. That's all she really wants: to be at my house or her residence or church. No use taking her to the Huntington when what she really wanted was to sit in my kitchen.
3) I will go on a diet for time spent with her, limiting it to one hour per day. I just can't handle these longer days.
Saturday, February 16, 2008
Traffic Jam
Living in Los Angeles requires constant vigilance of traffic patterns. No hour of the day can be planned without taking traffic into account, unless one stays within a few blocks of home or travels on foot.
I was planning to attend a meeting of EEWC (see link: eewc.com) in Claremont starting at 4 pm, a drive that takes one hour on the 10 freeway on a Sunday morning or afternoon but two hours or more on a weekday afternoon if one leaves at 2 or 3 pm. At that time all the traffic is flowing east.
I planned on leaving at 2 pm, just in case, and visiting Mom from 1 pm to 2 pm before leaving. However, I didn't manage my morning activities well enough to get to Mom's residence by 1 pm.
At 2 pm I faced a choice: skip visiting Mom and make sure to be on time for the meeting at 4 pm, or visit Mom and trust that traffic on this Saturday afternoon would be about the same as on a Sunday: light.
Reason to skip the visit to Mom: yesterday I'd put six hours into her, so I could take today off.
Reason not to skip Mom: yesterday I'd been impatient with her about her refusal to take her meds, and she had cried. To make amends, I should visit her.
Guess which one I did.
When arrived, planning to spend just half an hour and leave at 2:45 pm, she was hysterical: "Thank goodness you came! I called you and told you I want to go to your house."
"We can go to my house, but we will go out and get some ice cream," I answered.
Then my favorite caregiver, Marnie, often in charge of the whole floor, told me she had been robbed at gunpoint two days earlier. I needed to listen to her story in all its frightening detail rather than rush out saying, "Later!"
Finally I took Mom out in the wheelchair to get a Nestle's Crunch and a banana. Then we returned and I left her in the dining area eating the treat.
"Bye--I'll see you tomorrow morning so we can go to church," I told her.
By now it was 3 pm, and I settled into the minivan for a pleasant hour-long drive with Prairie Home Companion on the radio and a Snapple iced tea to drink, travelling 70 mph. I was glad I had taken time for the visit.
But five minutes later traffic halted: there was an accident on the 10 freeway near the 5.
I decided to maneuver around it, taking the 110 to the 101 to the 10. Traffic flowed well for ten minutes but then it slowed to 30 mph and stayed there.
Frantically I switched to all the traffic reporting channels but no accident was happening ahead of me this time. I had to conclude the situation was normal--SNAFU.
For the next hour I maneuvered from the 10 to the 605 to the 210, hoping there'd be fewer cars and a speed of 60-70 mph, but it took me an hour and a half to get only as far as Azusa, still fifteen minutes away from Claremont.
I fumed and fretted: was this normal for a Saturday, as it is for weekdays? Or was the heavy traffic caused by the three-day weekend--people driving to Las Vegas or to Big Bear for skiing?
I was 45 minutes late to the meeting. An hour trip became an hour and three-quarters.
Now I really regretted having taken time to visit Mom. Once again, I had taken care of her by throwing my own commitments off.
But at least she knew I cared: I had not skipped a day.
I was planning to attend a meeting of EEWC (see link: eewc.com) in Claremont starting at 4 pm, a drive that takes one hour on the 10 freeway on a Sunday morning or afternoon but two hours or more on a weekday afternoon if one leaves at 2 or 3 pm. At that time all the traffic is flowing east.
I planned on leaving at 2 pm, just in case, and visiting Mom from 1 pm to 2 pm before leaving. However, I didn't manage my morning activities well enough to get to Mom's residence by 1 pm.
At 2 pm I faced a choice: skip visiting Mom and make sure to be on time for the meeting at 4 pm, or visit Mom and trust that traffic on this Saturday afternoon would be about the same as on a Sunday: light.
Reason to skip the visit to Mom: yesterday I'd put six hours into her, so I could take today off.
Reason not to skip Mom: yesterday I'd been impatient with her about her refusal to take her meds, and she had cried. To make amends, I should visit her.
Guess which one I did.
When arrived, planning to spend just half an hour and leave at 2:45 pm, she was hysterical: "Thank goodness you came! I called you and told you I want to go to your house."
"We can go to my house, but we will go out and get some ice cream," I answered.
Then my favorite caregiver, Marnie, often in charge of the whole floor, told me she had been robbed at gunpoint two days earlier. I needed to listen to her story in all its frightening detail rather than rush out saying, "Later!"
Finally I took Mom out in the wheelchair to get a Nestle's Crunch and a banana. Then we returned and I left her in the dining area eating the treat.
"Bye--I'll see you tomorrow morning so we can go to church," I told her.
By now it was 3 pm, and I settled into the minivan for a pleasant hour-long drive with Prairie Home Companion on the radio and a Snapple iced tea to drink, travelling 70 mph. I was glad I had taken time for the visit.
But five minutes later traffic halted: there was an accident on the 10 freeway near the 5.
I decided to maneuver around it, taking the 110 to the 101 to the 10. Traffic flowed well for ten minutes but then it slowed to 30 mph and stayed there.
Frantically I switched to all the traffic reporting channels but no accident was happening ahead of me this time. I had to conclude the situation was normal--SNAFU.
For the next hour I maneuvered from the 10 to the 605 to the 210, hoping there'd be fewer cars and a speed of 60-70 mph, but it took me an hour and a half to get only as far as Azusa, still fifteen minutes away from Claremont.
I fumed and fretted: was this normal for a Saturday, as it is for weekdays? Or was the heavy traffic caused by the three-day weekend--people driving to Las Vegas or to Big Bear for skiing?
I was 45 minutes late to the meeting. An hour trip became an hour and three-quarters.
Now I really regretted having taken time to visit Mom. Once again, I had taken care of her by throwing my own commitments off.
But at least she knew I cared: I had not skipped a day.
Friday, February 15, 2008
A Perfect Storm
I knew one thing this morning: I didn't want to give up five hours to take Mom to a P.E.O. meeting.
But that's what I do every two weeks. I started taking Mom two and a half years ago, then decided to join in order to keep taking her. It's her one outing besides going to church and going to my house, a vestige of her former life, seeing these P.E.O. sisters.
I'm a member, and she is, and I would take her to the 10 am meeting.
I delayed leaving the house, first typing up the slate of officers nominated for next year. Two meetings ago when they asked for volunteers for the nominating committee, Mom piped up, "I'll do it!" Everyone laughed, but then they said she was volunteering me. I wasn't clever enough to slip out of this trap.
~~~~~
I didn't arrive to Mom's floor until 9:40 am, hoping just to get her purse and wheel her to the car.
No such luck. She was still sitting at the breakfast table in front of a fresh plate of eggs and bacon, her two cups of orange juice and tomato juice untouched.
What I didn't know:
1) The floor was short-staffed today. The lead caregiver, Karen, was late going down to get the food cart from the kitchen because she had to wake and dress a few more residents than usual.
2) Mom had refused to get up at 8 am when Elisa, her caregiver, spoke to her. She had cried and said she didn't want to get up. Elisa didn't get her up until 9 am, then dressed her and took her to breakfast.
3) Mom had eaten her oatmeal but refused to take her meds. Ilse, the medicine person, had decided to try later. Karen had held off on giving Mom her eggs and bacon, waiting until she cooperated with her meds.
As various people were reporting these facts, I decided to take Mom and leave; at least she had had her oatmeal.
"I'm going to get your purse," I said.
But when I got back with the purse and the lighter wheelchair for car trips, Ilse said, "She's still refusing her meds." As if I were supposed to care.
I needed to leave, meds or no meds, but in the same way George Orwell found himself shooting an elephant, I found myself going along with the caregivers who expected me to enforce Mom having her morning meds.
"Mom, take your meds! Good! Now take the next ones," I urged.
"Don't spit them out," said Ilse.
"Mom! Okay, good, now let's move into this other wheelchair."
To Karen, I said, "Why isn't she ready to leave at 9:40? I asked J.R. to put in her chart for today 'No bus rides! She will be leaving at 9:30.'"
"I didn't see any note on her," Karen said.
When I picked Mom up to transfer her to the portable wheelchair, the entire black chiffon long skirt with liner she was wearing fell to her ankles.
"Is this skirt too big for her?" I asked.
"Yes," said Elisa. I'd set it out yesterday with a red sweater with inserted collar and cuffs to be worn to this meeting, but I hadn't thought about how loose the waist might be.
"Oh, I'm sorry," I said, wheeling her back to her room to get a safety pin. Why hadn't Elisa pinned it? Mom's clothes are my responsibility, though. She was 130 pounds three years ago; now she's down to 100, and she was probably 150 when she first wore this outfit. I'd bought some velcro and thread two months ago, intending to tighten the waists of all her skirts, but I'd been postponing this task.
By this time my patience was gone.
"You have to take your meds!" I yelled at her, pinning up the skirt. "You can't refuse them. We'll be late for the P.E.O. meeting."
"Don't be mean to me," she cried.
In silence I pushed her out to the elevator and to the car.
"Why are you mad at me?" she asked.
"Because you wouldn't take your meds," I answered.
"I did take them! They're lying," she cried. "They always say 'that old bag' and won't give me my meds."
~~~~~
When we arrived at the meeting, I put her into the wheelchair and opened and laid out the forty-pound ramp to get her up the entry steps.
She was still whimpering, and I thought she might not recover, but she still had her wits about her (well, some of them).
"Hi Evelyn, how are you?" asked Alva Mae.
"Fine, how are you?" she replied.
After devouring the fruit cup, the slice of coffee cake, the sausage, she fell asleep in the chair, quiet for most of the meeting until the Lord's Prayer.
I put the ramp back onto the steps, wheeled her out to the car, worked to get her into the car, then folded up the ramp and the wheelchair.
As we drove off, she said, "I'd like a Pepsi." We picked up a cheeseburger, milkshake, fries, and Pepsi from McDonalds.
I took her back to her floor, first toileting her. Off with the black skirt, on with some tan velour slacks. Off with the red Sas shoes, on with the black ankle-height ones for walking.
I took her back to the dining room and set her up with lunch.
Back in her room, I ransacked her closet for all the possibly loose-fitting skirts, tossing them in a heap, vowing to take time at home to tighten them with velcro.
I took the four pairs of dress shoes off the rack and hid them in a sack at the back of her closet.
I wrote a note to Laquetta, Queen of the Reminiscence Neighborhood, to have Mom's Individual Service Plan updated with these stipulations:
1) Get her up by 8 am--esp. on Sundays and Fridays when she is going out.
2) Make sure she is served breakfast by 8:30 am; otherwise she will have no appetite for lunch at 12 noon.
3) Use only the ankle-high black shoes.
4) Sundays she has to be ready to leave by 9:15 am. Some Fridays she has to be ready to leave by 9:30 am.
I left the note on LaQuetta's desk and fled to the car, feeling angry and upset about the whole morning.
~~~~~
At home by 2:15, I had planned to get to work at the computer immediately.
But instead I put away the forty-pound ramp in the garage, fed the dogs, and collapsed in frustration on my bed, unable to get up energy to do anything.
But that's what I do every two weeks. I started taking Mom two and a half years ago, then decided to join in order to keep taking her. It's her one outing besides going to church and going to my house, a vestige of her former life, seeing these P.E.O. sisters.
I'm a member, and she is, and I would take her to the 10 am meeting.
I delayed leaving the house, first typing up the slate of officers nominated for next year. Two meetings ago when they asked for volunteers for the nominating committee, Mom piped up, "I'll do it!" Everyone laughed, but then they said she was volunteering me. I wasn't clever enough to slip out of this trap.
~~~~~
I didn't arrive to Mom's floor until 9:40 am, hoping just to get her purse and wheel her to the car.
No such luck. She was still sitting at the breakfast table in front of a fresh plate of eggs and bacon, her two cups of orange juice and tomato juice untouched.
What I didn't know:
1) The floor was short-staffed today. The lead caregiver, Karen, was late going down to get the food cart from the kitchen because she had to wake and dress a few more residents than usual.
2) Mom had refused to get up at 8 am when Elisa, her caregiver, spoke to her. She had cried and said she didn't want to get up. Elisa didn't get her up until 9 am, then dressed her and took her to breakfast.
3) Mom had eaten her oatmeal but refused to take her meds. Ilse, the medicine person, had decided to try later. Karen had held off on giving Mom her eggs and bacon, waiting until she cooperated with her meds.
As various people were reporting these facts, I decided to take Mom and leave; at least she had had her oatmeal.
"I'm going to get your purse," I said.
But when I got back with the purse and the lighter wheelchair for car trips, Ilse said, "She's still refusing her meds." As if I were supposed to care.
I needed to leave, meds or no meds, but in the same way George Orwell found himself shooting an elephant, I found myself going along with the caregivers who expected me to enforce Mom having her morning meds.
"Mom, take your meds! Good! Now take the next ones," I urged.
"Don't spit them out," said Ilse.
"Mom! Okay, good, now let's move into this other wheelchair."
To Karen, I said, "Why isn't she ready to leave at 9:40? I asked J.R. to put in her chart for today 'No bus rides! She will be leaving at 9:30.'"
"I didn't see any note on her," Karen said.
When I picked Mom up to transfer her to the portable wheelchair, the entire black chiffon long skirt with liner she was wearing fell to her ankles.
"Is this skirt too big for her?" I asked.
"Yes," said Elisa. I'd set it out yesterday with a red sweater with inserted collar and cuffs to be worn to this meeting, but I hadn't thought about how loose the waist might be.
"Oh, I'm sorry," I said, wheeling her back to her room to get a safety pin. Why hadn't Elisa pinned it? Mom's clothes are my responsibility, though. She was 130 pounds three years ago; now she's down to 100, and she was probably 150 when she first wore this outfit. I'd bought some velcro and thread two months ago, intending to tighten the waists of all her skirts, but I'd been postponing this task.
By this time my patience was gone.
"You have to take your meds!" I yelled at her, pinning up the skirt. "You can't refuse them. We'll be late for the P.E.O. meeting."
"Don't be mean to me," she cried.
In silence I pushed her out to the elevator and to the car.
"Why are you mad at me?" she asked.
"Because you wouldn't take your meds," I answered.
"I did take them! They're lying," she cried. "They always say 'that old bag' and won't give me my meds."
~~~~~
When we arrived at the meeting, I put her into the wheelchair and opened and laid out the forty-pound ramp to get her up the entry steps.
She was still whimpering, and I thought she might not recover, but she still had her wits about her (well, some of them).
"Hi Evelyn, how are you?" asked Alva Mae.
"Fine, how are you?" she replied.
After devouring the fruit cup, the slice of coffee cake, the sausage, she fell asleep in the chair, quiet for most of the meeting until the Lord's Prayer.
I put the ramp back onto the steps, wheeled her out to the car, worked to get her into the car, then folded up the ramp and the wheelchair.
As we drove off, she said, "I'd like a Pepsi." We picked up a cheeseburger, milkshake, fries, and Pepsi from McDonalds.
I took her back to her floor, first toileting her. Off with the black skirt, on with some tan velour slacks. Off with the red Sas shoes, on with the black ankle-height ones for walking.
I took her back to the dining room and set her up with lunch.
Back in her room, I ransacked her closet for all the possibly loose-fitting skirts, tossing them in a heap, vowing to take time at home to tighten them with velcro.
I took the four pairs of dress shoes off the rack and hid them in a sack at the back of her closet.
I wrote a note to Laquetta, Queen of the Reminiscence Neighborhood, to have Mom's Individual Service Plan updated with these stipulations:
1) Get her up by 8 am--esp. on Sundays and Fridays when she is going out.
2) Make sure she is served breakfast by 8:30 am; otherwise she will have no appetite for lunch at 12 noon.
3) Use only the ankle-high black shoes.
4) Sundays she has to be ready to leave by 9:15 am. Some Fridays she has to be ready to leave by 9:30 am.
I left the note on LaQuetta's desk and fled to the car, feeling angry and upset about the whole morning.
~~~~~
At home by 2:15, I had planned to get to work at the computer immediately.
But instead I put away the forty-pound ramp in the garage, fed the dogs, and collapsed in frustration on my bed, unable to get up energy to do anything.
Sunday, February 10, 2008
Old Folks Say the Darndest Things
I had a big day planned for Mom: church as usual at 9:30 am, then a visit to my house where I planned to vacuum my floors and make waffles with strawberries and whipped cream on them. My sister-in-law Lee was planning to drive here from Malibu after church there with her five-year-old twin daughters, and I knew that Mom enjoys seeing the twins.
After church we wheeled to a market, bought the strawberries and whipped cream, and rushed home, where I vacuumed as she sat at the table eating grapes. Having been awake since 8 am or earlier, she tired of sitting in her wheel chair and fell asleep at the table, slouched in her chair. I kept cleaning and was just ready to start the waffles when she woke and said, "When are the twins coming?"
"I thought they'd be here by one o'clock, but they aren't here yet," I answered. "Are you tired of waiting?"
"Yes, I'm tired. I want to sit in my big chair," she said. "Just take me home. I want to go back."
I paused in my busy-ness and considered whether to convince her to stay so she could enjoy the fun or accept her desire just to take a nap. How soon would they come? Could I set her up to sleep in a chair in the living room and wait for them? Then I got a text message from John saying Lee wouldn't arrive until after 2 pm.
"Okay, I can take you back if you want to go," I concluded with disappointment. All my lovely plans down the drain—like a baby, she needed her nap on schedule and couldn't hang in there for another hour. Because I had given to Good Will the recliner I used to keep for her at our house, there was no convenient place for her to sleep. It would be an effort to get her onto a bed and then get her back up an hour later.
On the way home, she said, "I saw Reynold today. He's here… how about that!"
"Yes, how about that!" I answered. (He died in 2004.)
Back at her residence, I took her to the bathroom, then set her up in her recliner with a cheeseburger and fries and a milkshake because I hadn't really given her any lunch yet.
"Reynold came to see his little sister," she continued, and I reflected on the possibility that he might indeed have visited her.
After eating half the burger and fries, she started choking and coughed some of it back up.
"I'm choking to death!" she said. "I'm choking to death!"
"No, you're not dying," I countered. "You're okay. You just choked."
"I'm choking to death! It's awful to die."
"No, you're okay," I insisted. "You don't want the rest of this? Here, I'll extend your recliner. You can just take a little nap."
"Just take a nap to die," she repeated in a sing-song voice. "Just take a nap to die."
"No, you're not dying!"
"I never died before. It must be fun, don't you think?"
"Yes, maybe," I said, tucking a blanket around her and winding the back of a musical doll to sit on her lap.
"You are my sunshine, my only sunshine," the doll's bright notes began.
Mom started singing the song with it: "You are my sunshine, my only sunshine. You make me happy when skies are blue…."
Friday, February 08, 2008
Off the Hook
Mom received the following letter from the US District Court in Denver today:
Evelyn Frances Eggebroten
Dear Prospective Juror:
Please be advised that a Judge of the US District Court has given the following direction with regard to your service as a juror:
After careful review and consideration it has been determined that you are EXCUSED, EXEMPT, or DISQUALIFIED from jury service. You need not report for jury duty.
If you have any questions, you can contact...
Very truly yours,
Gregory C. Langham, Clerk
by Joann Garcia, Jury Clerk
Evelyn Frances Eggebroten
Dear Prospective Juror:
Please be advised that a Judge of the US District Court has given the following direction with regard to your service as a juror:
After careful review and consideration it has been determined that you are EXCUSED, EXEMPT, or DISQUALIFIED from jury service. You need not report for jury duty.
If you have any questions, you can contact...
Very truly yours,
Gregory C. Langham, Clerk
by Joann Garcia, Jury Clerk
Friday, February 01, 2008
JURY DUTY!
The US District Court, Denver Jury Division, mailed Mom a summons to jury duty on Dec. 27.
Then on Jan. 15 they sent a threatening note (fine or imprisonment) because they did not get an answer back within ten days.
So now I have filled out the response form, and I will try to find some kind of proof of her mental disability to enclose with it.
Never mind that she is almost 89 and lives in California, which they might have figured out by mailing it to her address here.
Penalty: Failure to respond and/or non-appearance may lead the court to issue an order to the US Marshal to have you brought before a judge for an explanation as to your non-response and/or non-appearance. Any person who FAILS TO SHOW GOOD CAUSE for non-compliance with a summons may be fined and/or imprisoned.
Imagine the scene: Mom hauled into a Denver court to explain to the judge why she didn't report for jury duty.
I bet she'd tell the judge a pretty good story.
She'd love the attention--and especially the trip to Colorado for the first time since she was brought here in November 2003.
Then on Jan. 15 they sent a threatening note (fine or imprisonment) because they did not get an answer back within ten days.
So now I have filled out the response form, and I will try to find some kind of proof of her mental disability to enclose with it.
Never mind that she is almost 89 and lives in California, which they might have figured out by mailing it to her address here.
Penalty: Failure to respond and/or non-appearance may lead the court to issue an order to the US Marshal to have you brought before a judge for an explanation as to your non-response and/or non-appearance. Any person who FAILS TO SHOW GOOD CAUSE for non-compliance with a summons may be fined and/or imprisoned.
Imagine the scene: Mom hauled into a Denver court to explain to the judge why she didn't report for jury duty.
I bet she'd tell the judge a pretty good story.
She'd love the attention--and especially the trip to Colorado for the first time since she was brought here in November 2003.
Tuesday, January 29, 2008
Poison Pimples
"I have these bumps on my chin," Mom says as we drive to her psychiatrist appointment at 1 pm.
"Bumps on your chin?" I ask, feeling her chin. "I don't feel any bumps.
"Yes, they have poison in them," she says. "They're on my cheek too."
"The only bumps on your cheek are your cheek bones," I answer, feeling her cheek.
She's always rubbing her chin because the stubble of hair there irritates her. We just shaved it a couple of days ago, so I'm thinking this started with the scratchy hairs there.
"Yes, I think Emily gave me these bumps on my chin," she continues.
"We're going to the doctor, so you can tell him about them," I conclude.
"What are we going to do with the Russian baby?" she asks next.
"What Russian baby?" I ask.
"Roz came home with a Russian baby," she says.
"No, she didn't," I correct her. "Roz got a little dog, not a baby."
Roz does have young cousins in New York who were adopted four years ago from Russia. I wonder if this fact migrated from some storage place in Mom's brain and attached itself to the recent dog information.
After we enter Dr. Chen's office, Mom starts to tell him about her bumps, but now they are pimples and they are on her hands.
He gently examines her hands and says, "You don't need to worry about them. I don't think they will bother you tomorrow."
He doesn't say, "There are no bumps here!"
"They're on my legs too," Mom asserts, but again he reassures her.
"Your fingers are purple on this hand," he says, but I tell him we've already discussed that circulation problem with her geriatrician.
"There was a patient across the street from my mother who died of these bumps," Mom continues. "Her name was Cinderella... Paradise."
"What a lovely name," he ventures.
"Yes. You probably think I'm crazy," she says.
"How are things at Ocean View Assisted Living?" he asks.
"Very aggravating," she answers. "Everybody is teasing me because the door to my room wouldn't open."
I don't explain to him that when she wheels away from the table half-way through a meal and arrives back at her room, she finds the door locked because the staff does not want her to enter and try to get out of the wheelchair into her recliner or onto the toilet.
Somehow she next mentions her husband, Kermit, who died in 1993.
"He went to the Colorado School of Mines," she says. I don't say, "No, that was your brother Reynold."
"--and he got a bunch of gold and silver slates and carried them home--" I don't say, "No, that was your grandfather who was accused of highgrading."
"--to his parents, Mr. and Mrs. A.R. Gustafson. They died. They fell from that silver and gold, carrying it upstairs from that place--"
"Oh, they did," Dr. Chen murmurs.
"They thought he was down at the chocolate shop, and I thought, 'Oh, that's sweet.'"
"Yes, that's sweet," he repeats, smiling.
"And I went down there. He had these bumps and I thought I was going to die from these bumps," she continued.
I wondered how long this tale by free association could last, but then she did a quick self-assessment.
"You must think that sounds pretty silly," she said. "You must wonder how a well-bred woman could have a dream like that, but I did. Of course, they were--"
"Do you have a list of her meds?" he asked me.
"No, they haven't changed since you saw her a month ago," I reply.
"How is she doing?" he asks.
"She hasn't been violent with the staff in the last month," I begin. "At least no one has reported to me any scratching or hitting. But when I come in the late afternoon, she is often very upset and crying about something that is a complete hallucination, something from the past that isn't even anything that happened to her. Like one day she was crying, 'My mother lost her baby... Byron and Serena had to walk to get the doctor.' But this happened to her grandmother, and the child Serena who went to get help is her mother. She thinks these things happened to her, but it was before she was born, in 1899 or something. I just try to take her out to do something, distract her, and she forgets about it."
"You're right to redirect her with real activity in the present," he says. "I don't think it's a good idea to try to medicate her for this. Let's just keep her Seroquel at 25 mg once a day. And maybe this time you can come back in three months."
"Oh, good!" I say. These visits are so pointless--I'm delighted to come less often.
"But these pimples," Mom says, trying to regain the spotlight. "You think there's no reason to have them under a microscope and be seen...?
"No, I don't think so," he answers. "I don't see them."
"You don't see 'em? Well, they're there!" she retorts emphatically. "Why do they come? After a night alone, there they are again."
"Well, it's possible," he ventures. "But you don't need to worry about them."
"Positive? They're not positive? Okay, I won't worry.... I was a Navy nurse in World War II," she counters.
"Yes?" he answers.
"I worked very hard to get everybody in the catalog of US News & World Report. And they had these pimples."
"Oh, I see, " he says as I thank him and push her in her wheelchair out of the office.
We go to the lobby to get ice cream, as usual, for a treat. She has a Nestle's Crunch bar and I have an ice cream sandwich.
On the way home, she is reflective: "I guess I don't need to worry so much about these pimples because everybody dies of something."
"Bumps on your chin?" I ask, feeling her chin. "I don't feel any bumps.
"Yes, they have poison in them," she says. "They're on my cheek too."
"The only bumps on your cheek are your cheek bones," I answer, feeling her cheek.
She's always rubbing her chin because the stubble of hair there irritates her. We just shaved it a couple of days ago, so I'm thinking this started with the scratchy hairs there.
"Yes, I think Emily gave me these bumps on my chin," she continues.
"We're going to the doctor, so you can tell him about them," I conclude.
"What are we going to do with the Russian baby?" she asks next.
"What Russian baby?" I ask.
"Roz came home with a Russian baby," she says.
"No, she didn't," I correct her. "Roz got a little dog, not a baby."
Roz does have young cousins in New York who were adopted four years ago from Russia. I wonder if this fact migrated from some storage place in Mom's brain and attached itself to the recent dog information.
After we enter Dr. Chen's office, Mom starts to tell him about her bumps, but now they are pimples and they are on her hands.
He gently examines her hands and says, "You don't need to worry about them. I don't think they will bother you tomorrow."
He doesn't say, "There are no bumps here!"
"They're on my legs too," Mom asserts, but again he reassures her.
"Your fingers are purple on this hand," he says, but I tell him we've already discussed that circulation problem with her geriatrician.
"There was a patient across the street from my mother who died of these bumps," Mom continues. "Her name was Cinderella... Paradise."
"What a lovely name," he ventures.
"Yes. You probably think I'm crazy," she says.
"How are things at Ocean View Assisted Living?" he asks.
"Very aggravating," she answers. "Everybody is teasing me because the door to my room wouldn't open."
I don't explain to him that when she wheels away from the table half-way through a meal and arrives back at her room, she finds the door locked because the staff does not want her to enter and try to get out of the wheelchair into her recliner or onto the toilet.
Somehow she next mentions her husband, Kermit, who died in 1993.
"He went to the Colorado School of Mines," she says. I don't say, "No, that was your brother Reynold."
"--and he got a bunch of gold and silver slates and carried them home--" I don't say, "No, that was your grandfather who was accused of highgrading."
"--to his parents, Mr. and Mrs. A.R. Gustafson. They died. They fell from that silver and gold, carrying it upstairs from that place--"
"Oh, they did," Dr. Chen murmurs.
"They thought he was down at the chocolate shop, and I thought, 'Oh, that's sweet.'"
"Yes, that's sweet," he repeats, smiling.
"And I went down there. He had these bumps and I thought I was going to die from these bumps," she continued.
I wondered how long this tale by free association could last, but then she did a quick self-assessment.
"You must think that sounds pretty silly," she said. "You must wonder how a well-bred woman could have a dream like that, but I did. Of course, they were--"
"Do you have a list of her meds?" he asked me.
"No, they haven't changed since you saw her a month ago," I reply.
"How is she doing?" he asks.
"She hasn't been violent with the staff in the last month," I begin. "At least no one has reported to me any scratching or hitting. But when I come in the late afternoon, she is often very upset and crying about something that is a complete hallucination, something from the past that isn't even anything that happened to her. Like one day she was crying, 'My mother lost her baby... Byron and Serena had to walk to get the doctor.' But this happened to her grandmother, and the child Serena who went to get help is her mother. She thinks these things happened to her, but it was before she was born, in 1899 or something. I just try to take her out to do something, distract her, and she forgets about it."
"You're right to redirect her with real activity in the present," he says. "I don't think it's a good idea to try to medicate her for this. Let's just keep her Seroquel at 25 mg once a day. And maybe this time you can come back in three months."
"Oh, good!" I say. These visits are so pointless--I'm delighted to come less often.
"But these pimples," Mom says, trying to regain the spotlight. "You think there's no reason to have them under a microscope and be seen...?
"No, I don't think so," he answers. "I don't see them."
"You don't see 'em? Well, they're there!" she retorts emphatically. "Why do they come? After a night alone, there they are again."
"Well, it's possible," he ventures. "But you don't need to worry about them."
"Positive? They're not positive? Okay, I won't worry.... I was a Navy nurse in World War II," she counters.
"Yes?" he answers.
"I worked very hard to get everybody in the catalog of US News & World Report. And they had these pimples."
"Oh, I see, " he says as I thank him and push her in her wheelchair out of the office.
We go to the lobby to get ice cream, as usual, for a treat. She has a Nestle's Crunch bar and I have an ice cream sandwich.
On the way home, she is reflective: "I guess I don't need to worry so much about these pimples because everybody dies of something."
Monday, January 28, 2008
Running Errands
I left the house to do errands and took the new little rescue chihuahua with me. My oldest daughter, Roz, found it online and will take it back to New York City with her when she next comes home.
In its pink and white wool sweater and yellow harness, it was a big hit at Mom's residence.
As we sailed out of Ocean View Assisted Living to continue our errands, the dog sat alertly on Mom's knees like a carved ornament at the prow of a ship.
I'd just intended to do local errands, but I'd gotten a call from the church that a member soon to have open heart surgery needed O- blood. Although I'd been rejected as a donor on Sunday because my hemoglobin was a bit too low, I decided to try again.
So we went to UCLA, parked at Whole Foods, left the dog in the car, wheeled a block to the clinic, waited.
In the car and while waiting I supplied Mom with cashews, grapes, sticks of gum. Food is one of her greatest pleasures at this point in her life.
However, my count was only 12.4 (12.5 was the cutoff), so the effort was in vain. With a brisk wind blowing, we went back to the car.
"It's so cold," Mom complained.
"You're okay," I told her, adjusting the blanket on her lap.
I was thinking, "It's this or sitting in your chair all afternoon. Cold or not, this excursion is probably more stimulating for you."
Once in the car, I put the dog in her lap for the drive back to her residence.
Sunday, January 27, 2008
Queen of Hooks
I arrive at 9:15 am to take Mom to church--our weekly outing, the only place she goes every week besides my house.
But first I had read my Al-Anon day-by-day books for my daily guidance, along with five psalms and a chapter of the Bible.
Melody Beattie's advice for Jan. 26, in The Language of Letting Go, is as follows (in part):
We can learn not to get hooked into unhealthy, self-defeating behaviors in relationships--behaviors such as caretaking, controlling, discounting ourselves, and believing lies.
We can learn to watch for and identify hooks, and choose not to allow ourselves to be hooked.
Often people do things consciously or without thinking that pull us into a series of our self-defeating behaviors we call codependency....
Someone may stand before us and hint or sigh about a problem, knowing or hoping that hint or sigh will hook us into taking care of him or her. That is manipulation.
What are the words, the signs, the looks, the hints, the cues that hook us into a predictable and often self-defeating behavior?
What makes you feel sympathy? Guilt? Responsible for another?
Our strong point is that we care so much. Our weak point is that we often underestimate the people with whom we are dealing. They know what they're doing....
Today I will be aware of the hooks that snag me into the caretaking acts that leave me feeling victimized....
As a result of this reading, I set out hoping to notice any hooks that Mom set out for me and to avoid being hooked.
When I arrive, Elisa, Mom's morning caregiver five days per week, reports that although she got Mom up and dressed in time, the kitchen had not served her breakfast promptly; she had eaten only oatmeal and fruit, without the scrambled eggs and sausage she usually has as well. I speak to the lead caregiver and to Ilona in the kitchen about that, reminding them that Mom has fallen from 118 to 102 lbs. in the past year and that her best meal of the day is breakfast. She often refuses to eat lunch or dinner but always enjoys a full breakfast.
Then I scoot Mom off in the wheelchair, past the medicine giver on the second floor, who protests that we shouldn't leave without her meds. Ilse had arrived on time, 8:30 am, instead of early, and as a result had not yet gotten to Mom and her meds. Usually I stop (if caught) and wait while we go through the med rituals: a squirt of something in each nostril, drops in the eyes, and 5-6 pills taken slowly, reluctantly, with juice or applesauce. But this time I say, "No, we will be late for church if we stop."
It's sunny as we drive to church, and I hand Mom her sunglasses, but she's putting them on upside down; I manage to steer them correctly onto her nose while driving.
"Look at that cute cloud!" she comments. And sure enough, the Los Angeles sky holds dramatic puffs of cumulus for a change.
There's still a handicapped parking spot near the church, so we save time there and sail into our customary spot on the aisle in the left rear of the congregation. Other than some humming and whispering at inappropriate times, things go well.
Her favorite times are when she drops her envelope in the offering plate and when we recite the Lord's Prayer. For some reason she always recites one line wrong:
"Forgive us our debts, as we forgive those who debt against us"--and being out of sync with the congregation on that throws her off for a few lines, until she catches up with "the kingdom, and the power, and the glory forever, Amen." (A few years ago when I took her to the Episcopal Church, they always said, "Forgive us our sins, as we forgive those who sin against us" and I think she's trying to follow this pattern with debts.)
After church, we head for the handicapped restroom as usual, and after placing her on the toilet, I don't hear any liquid trickling, so I replace the Depend and start to pull it up quickly. There's a smell but I ignore it, hoping for the best.
Suddenly, however, I notice a fat length of BM on the toilet seat. Whoa! I check things out, clean up more just emerging, decide not to throw out the newly soiled new Depend, wish I had brought plastic gloves and wipes, hope there's not any on her skirt or my clothing.
Then we head to the church hall with a blood donation station set up, where I am scheduled to give blood this morning. First I give Mom tea with milk and sugar, as well as cookies, while I fill out the form. But they reject me: the iron level in my blood is only 12.2, instead of 12.5 or better, so I can't give blood today.
We leave church, but by now the cute cloud has multiplied and it's raining heavily. We get soaked while getting her into the car. She has been talking all morning about going to my house, but I realize that project is going to be difficult in this rain. Better cancel it, just do errands and take her back to her residence.
"Mom, this isn't a good day for you to go to my house," I begin. "We would get all wet again getting out of the car and going up the ramp to the front door."
"I don't care! I just want to go to your house," she argues. "It's been such a long time since I was at your house." Hook #1
"Mom, you were there Friday. Two days ago. Remember? You met Roz's new chihuahua."
"Yes, I remember, but I don't go there very often," she maintains. "And I just want to see Reynold."
"Reynold is not at my house," I say carefully. I do not say, "He died four years ago."
"Oh, he isn't? Oh."
"If you want to get soaked in this rain, we can try to get out of the car and go up into my house," I concede. "But it would not be a good idea."
"Sunny California!" she says.
"We have to have rain some time," I counter.
After a few moments, she says, "Okay, I guess I should go back to my place." And she begins singing, "California, here I come! Right back where I started from."
I sing along with her until she, suddenly perceptive, she accuses me, "You sound like you're happy that you don't have to take me to your house!" Hook #2
It's true. I had told myself that it rains so rarely in California that I should take advantage of this unusual reason not to have to load her in and out of the car, supply her with various snacks and foods for a hour.
But I do not succumb to her effort to hook me into sympathy, guilt, and the usual Sunday trip to my house.
"Would you like some French fries?" I ask. "Let's go to McDonald's, and we won't even have to get out of the car and get wet."
"Okay," she says. "But I have to go to your house to get the news. John always has the news." Hook #3
"We can stop and buy you a newspaper," I answer. "And we will do a couple of other errands too. I need to buy some dog food."
At Centinela Pet Feed, I tell her, "Here's your milk shake. I'll just be a minute to buy the dog food."
"Get me some celery!" she demands.
"There's no celery here," I answer. "This is just a pet store, not a grocery store."
"If you won't get me celery, then I'll eat dog food!" she whimpers. Hook #4 --poor me.
"You don't have to eat dog food," I answer. "You have French fries, a cheeseburger, a milkshake, and a doughnut."
The rain is letting up by the time we drive back to her residence, and I hope she doesn't notice. I'm really counting on saving an hour by taking her back now, at 12:30, instead of 1:30 or 2 pm.
Inside, it takes a while to clean her up in the bathroom, but at least I have plastic gloves and wipes. I set her up in her recliner with her milkshake and doughnut on her tray in front of her, but she says she's too tired, not interesting in eating any more. I start a DVD that happens to be in her television, about the birth of Jesus. Oh well.
I open her newspaper, throw away the ads, elevate her feet, read her a post-Christmas letter from her best friend, Janelle Krueger, formerly dean of nursing at the University of Arizona in Tucson. Well, it's a typed Christmas letter from Janelle's daughter Bunky, with a note in Bunky's hand, and a signature from Janelle as well as Bunky and her husband. Such is communication at age 89 if one has dementia.
There are a few more hooks as she attempts to delay me and keep me with her longer, but at 1:30 pm I finally escape out the locked door into the elevator lobby.
A caregiver, Stan, sees me leaving and says, "You look tired."
"I just did four hours with her," I say. "That's not much, compared to your hours, but it's enough to wipe me out. And I didn't have any gloves or wipes when she had a BM in the church bathroom."
Stan is instantly sympathetic and solicitous: "You should have them with you."
I stop to use the second floor bathroom, as I often do when leaving. My need to close a door and be alone and quiet for a few moments is overwhelming.
But first I had read my Al-Anon day-by-day books for my daily guidance, along with five psalms and a chapter of the Bible.
Melody Beattie's advice for Jan. 26, in The Language of Letting Go, is as follows (in part):
We can learn not to get hooked into unhealthy, self-defeating behaviors in relationships--behaviors such as caretaking, controlling, discounting ourselves, and believing lies.
We can learn to watch for and identify hooks, and choose not to allow ourselves to be hooked.
Often people do things consciously or without thinking that pull us into a series of our self-defeating behaviors we call codependency....
Someone may stand before us and hint or sigh about a problem, knowing or hoping that hint or sigh will hook us into taking care of him or her. That is manipulation.
What are the words, the signs, the looks, the hints, the cues that hook us into a predictable and often self-defeating behavior?
What makes you feel sympathy? Guilt? Responsible for another?
Our strong point is that we care so much. Our weak point is that we often underestimate the people with whom we are dealing. They know what they're doing....
Today I will be aware of the hooks that snag me into the caretaking acts that leave me feeling victimized....
As a result of this reading, I set out hoping to notice any hooks that Mom set out for me and to avoid being hooked.
When I arrive, Elisa, Mom's morning caregiver five days per week, reports that although she got Mom up and dressed in time, the kitchen had not served her breakfast promptly; she had eaten only oatmeal and fruit, without the scrambled eggs and sausage she usually has as well. I speak to the lead caregiver and to Ilona in the kitchen about that, reminding them that Mom has fallen from 118 to 102 lbs. in the past year and that her best meal of the day is breakfast. She often refuses to eat lunch or dinner but always enjoys a full breakfast.
Then I scoot Mom off in the wheelchair, past the medicine giver on the second floor, who protests that we shouldn't leave without her meds. Ilse had arrived on time, 8:30 am, instead of early, and as a result had not yet gotten to Mom and her meds. Usually I stop (if caught) and wait while we go through the med rituals: a squirt of something in each nostril, drops in the eyes, and 5-6 pills taken slowly, reluctantly, with juice or applesauce. But this time I say, "No, we will be late for church if we stop."
It's sunny as we drive to church, and I hand Mom her sunglasses, but she's putting them on upside down; I manage to steer them correctly onto her nose while driving.
"Look at that cute cloud!" she comments. And sure enough, the Los Angeles sky holds dramatic puffs of cumulus for a change.
There's still a handicapped parking spot near the church, so we save time there and sail into our customary spot on the aisle in the left rear of the congregation. Other than some humming and whispering at inappropriate times, things go well.
Her favorite times are when she drops her envelope in the offering plate and when we recite the Lord's Prayer. For some reason she always recites one line wrong:
"Forgive us our debts, as we forgive those who debt against us"--and being out of sync with the congregation on that throws her off for a few lines, until she catches up with "the kingdom, and the power, and the glory forever, Amen." (A few years ago when I took her to the Episcopal Church, they always said, "Forgive us our sins, as we forgive those who sin against us" and I think she's trying to follow this pattern with debts.)
After church, we head for the handicapped restroom as usual, and after placing her on the toilet, I don't hear any liquid trickling, so I replace the Depend and start to pull it up quickly. There's a smell but I ignore it, hoping for the best.
Suddenly, however, I notice a fat length of BM on the toilet seat. Whoa! I check things out, clean up more just emerging, decide not to throw out the newly soiled new Depend, wish I had brought plastic gloves and wipes, hope there's not any on her skirt or my clothing.
Then we head to the church hall with a blood donation station set up, where I am scheduled to give blood this morning. First I give Mom tea with milk and sugar, as well as cookies, while I fill out the form. But they reject me: the iron level in my blood is only 12.2, instead of 12.5 or better, so I can't give blood today.
We leave church, but by now the cute cloud has multiplied and it's raining heavily. We get soaked while getting her into the car. She has been talking all morning about going to my house, but I realize that project is going to be difficult in this rain. Better cancel it, just do errands and take her back to her residence.
"Mom, this isn't a good day for you to go to my house," I begin. "We would get all wet again getting out of the car and going up the ramp to the front door."
"I don't care! I just want to go to your house," she argues. "It's been such a long time since I was at your house." Hook #1
"Mom, you were there Friday. Two days ago. Remember? You met Roz's new chihuahua."
"Yes, I remember, but I don't go there very often," she maintains. "And I just want to see Reynold."
"Reynold is not at my house," I say carefully. I do not say, "He died four years ago."
"Oh, he isn't? Oh."
"If you want to get soaked in this rain, we can try to get out of the car and go up into my house," I concede. "But it would not be a good idea."
"Sunny California!" she says.
"We have to have rain some time," I counter.
After a few moments, she says, "Okay, I guess I should go back to my place." And she begins singing, "California, here I come! Right back where I started from."
I sing along with her until she, suddenly perceptive, she accuses me, "You sound like you're happy that you don't have to take me to your house!" Hook #2
It's true. I had told myself that it rains so rarely in California that I should take advantage of this unusual reason not to have to load her in and out of the car, supply her with various snacks and foods for a hour.
But I do not succumb to her effort to hook me into sympathy, guilt, and the usual Sunday trip to my house.
"Would you like some French fries?" I ask. "Let's go to McDonald's, and we won't even have to get out of the car and get wet."
"Okay," she says. "But I have to go to your house to get the news. John always has the news." Hook #3
"We can stop and buy you a newspaper," I answer. "And we will do a couple of other errands too. I need to buy some dog food."
At Centinela Pet Feed, I tell her, "Here's your milk shake. I'll just be a minute to buy the dog food."
"Get me some celery!" she demands.
"There's no celery here," I answer. "This is just a pet store, not a grocery store."
"If you won't get me celery, then I'll eat dog food!" she whimpers. Hook #4 --poor me.
"You don't have to eat dog food," I answer. "You have French fries, a cheeseburger, a milkshake, and a doughnut."
The rain is letting up by the time we drive back to her residence, and I hope she doesn't notice. I'm really counting on saving an hour by taking her back now, at 12:30, instead of 1:30 or 2 pm.
Inside, it takes a while to clean her up in the bathroom, but at least I have plastic gloves and wipes. I set her up in her recliner with her milkshake and doughnut on her tray in front of her, but she says she's too tired, not interesting in eating any more. I start a DVD that happens to be in her television, about the birth of Jesus. Oh well.
I open her newspaper, throw away the ads, elevate her feet, read her a post-Christmas letter from her best friend, Janelle Krueger, formerly dean of nursing at the University of Arizona in Tucson. Well, it's a typed Christmas letter from Janelle's daughter Bunky, with a note in Bunky's hand, and a signature from Janelle as well as Bunky and her husband. Such is communication at age 89 if one has dementia.
There are a few more hooks as she attempts to delay me and keep me with her longer, but at 1:30 pm I finally escape out the locked door into the elevator lobby.
A caregiver, Stan, sees me leaving and says, "You look tired."
"I just did four hours with her," I say. "That's not much, compared to your hours, but it's enough to wipe me out. And I didn't have any gloves or wipes when she had a BM in the church bathroom."
Stan is instantly sympathetic and solicitous: "You should have them with you."
I stop to use the second floor bathroom, as I often do when leaving. My need to close a door and be alone and quiet for a few moments is overwhelming.
Sunday, January 20, 2008
Bougainvillea
Some words Mom just can't find. She will use any word handy when she means her watch or her purse.
But at church today, when I parked her in front of the flowers while I went to sign a list to donate blood next week, she said, "Oh, bougainvilleas!"
She learned this word last May, on Mothers Day, when Bill was visiting and we picked a couple branches of this flower for her at a church in Malibu.
For some reason, she still remembers it today.
But at church today, when I parked her in front of the flowers while I went to sign a list to donate blood next week, she said, "Oh, bougainvilleas!"
She learned this word last May, on Mothers Day, when Bill was visiting and we picked a couple branches of this flower for her at a church in Malibu.
For some reason, she still remembers it today.
Sunday, January 06, 2008
The Last Day of Christmas
It's January 6--Epiphany--and our Christmas tree is still up. I bring Mom to our house after church to enjoy the tree one last day.
"Tomorrow we're going to take it down and clean up this room," I say.
"No, don't take it down," she begs.
When I take her back to Ocean View Assisted Living, she notices that the pretty lights and decorations in the third-floor elevator lobby are gone.
"The Christmas lights are gone!" she says with disappointment. "They threw them away."
"No, they just packed them away in boxes until next year," I explain.
"Do you think I'll be around to see it then?" she asks.
I pause: this is a serious question.
"Well, we don't know, do we? But I think so--you're not sick. You don't have any illness like cancer or anything."
The conversation moves on.
Note on Jan. 27: She occasionally comments, weeks later when we enter that elevator lobby, "Oh, the lights are gone!"
Monday, December 31, 2007
New Year's Eve
It's New Year's Eve, so at 2 pm I drive to Mom's residence and bring her to my house to enjoy the sunny and warm California afternoon.
Roz is sitting in the back yard talking on her cell phone, so I wheel Mom into the patio area by the flowers and put the chihuahua Irie into her lap... then I give Mom a plate of fruit to eat.
Bill brought some holly from his yard in Steilacoom, Washington, when he was here, so I show her the holly and put a branch of it in her hands.
"We used to call it kinnikinick. We'd go to the south hillside to get it," she says.
"This is holly," I say.
"Do you think it's the same thing as kinnikinick?" she asks. I don't know the answer to that one.
Then I wheel her inside the house and give her some chocolate cake to eat.
"Here's your Christmas apron," I say. "Do you remember when we sewed this? It was about ten years ago."
"Yes," she says, looking at the newspaper. I put Irie on her lap for a photo in front of the Christmas wreath she gave us twenty years ago. It has a custom-designed scene in the center with a miniature tree, fireplace, rocking chair, and toys. Over the fireplace is a painting of Pike's Peak, and nearby stands a miniature newspaper titled Los Angeles Times.
After the cake and photos, Roz comes in to talk.
"Tell her your dream," I prompt Grandma, but she is reluctant to do that.
When I had first arrived at her residence, she had told me that in the night Roz and her friends had been noisily swimming in the pool there (what pool?) and she had had to report them. At that point I didn't try to argue with her that it had just been a dream, but now I hope to clarify it.
Instead, Grandma is confused and embarrassed. Not much gets clarified.
"We need to go out now and buy a few things at the store," I say. "And then we'll go back." I break this news gently. I don't say, "Back to Ocean View Assisted Living."
I'm pretty sure she doesn't want to return, but I need to cook dinner and be available for my kids. I can't make pizza dough, fix quacamole, make a spinach salad, bake the pizza and then bake brownies while also toileting Grandma and supplying her with things to eat and do--but I feel bad for her spending New Year's Eve alone at her residence, dozing in her recliner.
On December 31 of 2005 and 2006 I kept her with us for part of the evening, or I slept at her house to give the private caregiver the night off. In 2003 and 2004 I let her sleep at our house on New Year's Eve and Christmas Eve, and I slept on the floor in the same room to jump up if she tried to get out of bed or called for help in the night. But now I am trying to limit the hours I put into her care.
Mom cooperates with leaving my house at 4:30 pm, and we drive to a market to get a cake, a platter of cookies, and a platter of hors d'oeuvres for the staff at Ocean View. I feel so grateful to them for working on New Year's Eve, a gratitude mixed with guilt that they are caring for Mom on this evening instead of me.
The lines in the grocery store are long, however, and Mom has to wait in the car for twenty minutes or more.
We park and I load her lap with the trays of goodies.
"This is for the people who work for you," I say.
"Oh good," she answers. "I like to be generous." We take the two elevators to her floor; then we do our bathroom routine and I wheel her into the dining area.
"But I don't want to go to dinner," she argues. "I'm not hungry."
Though she has snacked for two hours, I don't want to leave her isolated in her room. I need her to be in the dining area for an hour at 5 pm before she returns to her room and sits in her recliner until bedtime.
"You need your protein," I tell her. "There's some healthy food here, even though you had cake at my house."
A caregiver puts a delicious-looking bowl of soup in front of her: pieces of potato and broccoli in a thick cream. She stabs it viciously with her spoon.
"It's the same soup every day!" she says angrily. "The same soup every day!"
She does have soup every evening, different kinds that probably all blend into one in her mind.
Her anger, however, is at having to be back at Ocean View, in this dining room, instead of at my house with her family.
"Goodbye, I'll see you tomorrow," I say, slipping off as quietly as possible.
Saturday, October 20, 2007
Pity Party
The hardest thing about visiting my mother every day is responding to her self-pity.
The wheel chair, the lack of memory, the incontinence I can deal with, cheerfully.
Today I brought her to my house; we ate pumpkin pie and played with the dog.
As I started to put the dishes away and prepared to take her back to the car, this was her comment:
"At least you came to see me. Maybe you'll come again some day."
"I come every day, Mom!" I said. "You don't believe that, do you?"
"I guess you do," she answered. "But it seems like such a long time before you come."
It's never enough.
Most days when I leave her, whether it has been an hour visit or a six-hour outing, she says, "You'll come back tonight and put me to bed, won't you?"
"No, I can't come back," I say. "I need to cook dinner for John." Or "I need to grade papers for my class."
"Oh, of course, you need to take care of John," she says, reluctantly recognizing that I have a few people in my life besides her.
I leave feeling miserable, unable to shake the feeling that no matter how much I do, it is not enough. She is voracious.
The wheel chair, the lack of memory, the incontinence I can deal with, cheerfully.
Today I brought her to my house; we ate pumpkin pie and played with the dog.
As I started to put the dishes away and prepared to take her back to the car, this was her comment:
"At least you came to see me. Maybe you'll come again some day."
"I come every day, Mom!" I said. "You don't believe that, do you?"
"I guess you do," she answered. "But it seems like such a long time before you come."
It's never enough.
Most days when I leave her, whether it has been an hour visit or a six-hour outing, she says, "You'll come back tonight and put me to bed, won't you?"
"No, I can't come back," I say. "I need to cook dinner for John." Or "I need to grade papers for my class."
"Oh, of course, you need to take care of John," she says, reluctantly recognizing that I have a few people in my life besides her.
I leave feeling miserable, unable to shake the feeling that no matter how much I do, it is not enough. She is voracious.
Saturday, September 15, 2007
My Most Embarrassing Day
Of course it happened at a P.E.O. meeting in a lovely lady's home.
Mom had been on stool softeners for several weeks, and I thought the problem of her constipation had been solved. Keeping the right balance of Sorbitol, prune juice, and various foods in her diet was tricky, though--too much vs. too little of one thing or another.
It might have worked out if she hadn't been given Colase.
There we were at the P.E.O. special event for B.I.L.s ("Boy I Love," my grandmother once explained to me, but in 2007 it is known as "Brothers in Love," partly because so few spouses are still alive). We had two B.I.L.s at this dinner.
We had just started to eat the catered Italian cuisine when Mom said, "We have to go now. I feel sick. I don't want to stay."
Fool that I am, I insisted on staying another 45 minutes until we had been there about an hour.
But I began noticing a bad odor. She needs to go to the bathroom, I realized. She may even have had a BM in her Depend.
Taking her to the bathroom in this home was not an option--it was too small to get the wheelchair inside, and there was no bar for her to hold onto while I removed her nylons and Depends.
The odor got worse. I got worried. Mom insisted on leaving.
The ladies were very polite.
Finally we made our excuses and left, wheeling to where I had parked the car.
As I helped her into the car, I realized the BM was outside the Depend--all over her skirt, the wheelchair, the seat of my car.
I drove back to Ocean View Assisted Living as fast as I could.
In the parking lot, I put a blanket in the wheelchair before moving her into it.
Up in her room, I peeled down the Depend and found a mess--all over her nylons, shoes, skirt, the floor. On my clothes too.
Marnie, a kind caregiver, had figured out that something was afoot as I wheeled Mom back to her room and insisted on helping me. She was a lifesaver.
Together we cleaned up Mom and the bathroom. Then I gave Mom a shower, put her in her nightgown, and left her in Marnie's care.
Hindsight: had I known the extent of her problem, I would have left the party immediately when she first asked to leave. Instead we stayed as the odor got worse and worse...
My brother Bill listened to this story and said, "Colase--I use it to have a colonoscopy. It cleans you out fast."
"I didn't know," I moaned.
From now on: no more Colase.
Mom had been on stool softeners for several weeks, and I thought the problem of her constipation had been solved. Keeping the right balance of Sorbitol, prune juice, and various foods in her diet was tricky, though--too much vs. too little of one thing or another.
It might have worked out if she hadn't been given Colase.
There we were at the P.E.O. special event for B.I.L.s ("Boy I Love," my grandmother once explained to me, but in 2007 it is known as "Brothers in Love," partly because so few spouses are still alive). We had two B.I.L.s at this dinner.
We had just started to eat the catered Italian cuisine when Mom said, "We have to go now. I feel sick. I don't want to stay."
Fool that I am, I insisted on staying another 45 minutes until we had been there about an hour.
But I began noticing a bad odor. She needs to go to the bathroom, I realized. She may even have had a BM in her Depend.
Taking her to the bathroom in this home was not an option--it was too small to get the wheelchair inside, and there was no bar for her to hold onto while I removed her nylons and Depends.
The odor got worse. I got worried. Mom insisted on leaving.
The ladies were very polite.
Finally we made our excuses and left, wheeling to where I had parked the car.
As I helped her into the car, I realized the BM was outside the Depend--all over her skirt, the wheelchair, the seat of my car.
I drove back to Ocean View Assisted Living as fast as I could.
In the parking lot, I put a blanket in the wheelchair before moving her into it.
Up in her room, I peeled down the Depend and found a mess--all over her nylons, shoes, skirt, the floor. On my clothes too.
Marnie, a kind caregiver, had figured out that something was afoot as I wheeled Mom back to her room and insisted on helping me. She was a lifesaver.
Together we cleaned up Mom and the bathroom. Then I gave Mom a shower, put her in her nightgown, and left her in Marnie's care.
Hindsight: had I known the extent of her problem, I would have left the party immediately when she first asked to leave. Instead we stayed as the odor got worse and worse...
My brother Bill listened to this story and said, "Colase--I use it to have a colonoscopy. It cleans you out fast."
"I didn't know," I moaned.
From now on: no more Colase.
Tuesday, September 11, 2007
Calcium--The Culprit
After weeks of trying to balance Mom's diet and relieve her constipation, we now have the solution: Just reduce her calcium pills to one a day.
In July her calcium was changed to three times per day, and soon afterward, her constipation began.
Today after reviewing all Mom's recent medical history, Dr. Rosen suddenly realized that the calcium increase was probably the cause of her constipation.
I take 2000 mg. of calcium per day with no ill effects, so it never occurred to me that calcium was the problem. But Dr. Rosen said sometimes it can cause this problem.
So we have changed the calcium back to 500 mg. per day, and added Sorbitol and Colase temporarily until her stools become normal again.
In July her calcium was changed to three times per day, and soon afterward, her constipation began.
Today after reviewing all Mom's recent medical history, Dr. Rosen suddenly realized that the calcium increase was probably the cause of her constipation.
I take 2000 mg. of calcium per day with no ill effects, so it never occurred to me that calcium was the problem. But Dr. Rosen said sometimes it can cause this problem.
So we have changed the calcium back to 500 mg. per day, and added Sorbitol and Colase temporarily until her stools become normal again.
Tuesday, August 21, 2007
And the Answer Is...
Constipation.
It turned out that "My bottom hurts" meant that she urgently needed to move her bowels, but was restricting because the movement would be painful.
When I first discovered the problem, I had to wear gloves and apply pressure around the opening of the rectum to force out the dry hard marbles... she screamed but it was necessary.
Thus began a week or two of medications to soften her stools... until diarrhea occurred.
It turned out that "My bottom hurts" meant that she urgently needed to move her bowels, but was restricting because the movement would be painful.
When I first discovered the problem, I had to wear gloves and apply pressure around the opening of the rectum to force out the dry hard marbles... she screamed but it was necessary.
Thus began a week or two of medications to soften her stools... until diarrhea occurred.
Monday, August 20, 2007
Puzzling Over Her Symptoms
I returned from being gone for almost two weeks to find my mother with a new set of symptoms but otherwise okay, just a little weaker and more confused.
She knew that Marie had visited her, but she confused her with Emily, my sister.
"How are you feeling?" I asked.
"My bottom hurts. I have a bladder infection," she answered.
I had made 6-8 phone calls earlier in the day to set up an appointment with a nurse for a catheterization, just on Marie's report of two days earlier, so I could answer Mom with, "Would you like to go to the doctor to check on it?"
"No," was her answer, but we went anyway. We have a regularly scheduled appointment with the doctor for next week, so whether positive or negative, this urine culture will provide information.
We accomplished it, with much pain and stress for Mom. I had taken her to the toilet just before the catheterization, but she hadn't urinated, as usual. Furthermore, her Depend was completely dry. The procedure, however, released 600 cc's of urine, so her bladder was full.
The puzzle is: why can't she urinate easily?
Her caregivers at Sunrise reported that she may be constipated.
Or is the problem an obstruction in the ureter?
I don't know... I will ask her caregivers to chart all bowel movements and major soaking of her Depend. Perhaps with a week of careful observation we can figure it out at the coming visit to the doctor.
She knew that Marie had visited her, but she confused her with Emily, my sister.
"How are you feeling?" I asked.
"My bottom hurts. I have a bladder infection," she answered.
I had made 6-8 phone calls earlier in the day to set up an appointment with a nurse for a catheterization, just on Marie's report of two days earlier, so I could answer Mom with, "Would you like to go to the doctor to check on it?"
"No," was her answer, but we went anyway. We have a regularly scheduled appointment with the doctor for next week, so whether positive or negative, this urine culture will provide information.
We accomplished it, with much pain and stress for Mom. I had taken her to the toilet just before the catheterization, but she hadn't urinated, as usual. Furthermore, her Depend was completely dry. The procedure, however, released 600 cc's of urine, so her bladder was full.
The puzzle is: why can't she urinate easily?
Her caregivers at Sunrise reported that she may be constipated.
Or is the problem an obstruction in the ureter?
I don't know... I will ask her caregivers to chart all bowel movements and major soaking of her Depend. Perhaps with a week of careful observation we can figure it out at the coming visit to the doctor.
Saturday, August 18, 2007
Another UTI?
My daughter Marie visited Grandma today and reported that she may have a bladder infection. She's saying, "My bottom hurts."
I can't do anything because I'm out of town.
I can't do anything because I'm out of town.
Thursday, August 16, 2007
"Loved Ones in Limbo" WSJ
"Waiting for the End: When Loved Ones Are Lost in Limbo" by Jeff Zaslow appears in today's Wall Street Journal, August 16, 2007, section D, page 1.
"Hundreds of thousands of people are surviving longer with advanced dementia or traumatic brain injuries, or in coma states," Zaslow explains. "For their loved one, 'coping with the ambiguity creates a unique type of stress,''" according to a researcher. (See full article below.)
This exactly captures the situation I find myself in with my mother.
Wall Street Journal, Aug. 16, p. D1
MOVING ON By JEFF ZASLOW
Waiting for the End:When Loved OnesAre Lost in LimboAugust 16, 2007; Page D1
In the days after the Aug. 1 Minneapolis bridge collapse, families of the missing stood by the Mississippi River, waiting for word. Some 1,300 miles away, in Virginia Beach, Va., a widower named Matt Buckley found himself empathizing with their sadness and sense of uncertainty.
"I know that feeling of limbo," he says. "I can picture myself staring into that murky water, wondering and hoping. That's how I felt when I'd sit with my wife, wondering what was in her head: Are you there? Are you with us?"
Don Erickson, trapped in a Utah mine, in a photo held by his wife.
In 2004, Mr. Buckley's 44-year-old wife, Mary, had routine foot surgery and, because of an anesthesia mishap, suffered massive brain damage. She spent 30 months in a coma before dying last year.
The loved ones of those still missing in the Mississippi -- and in last week's Utah coal-mine collapse -- know they will likely have to deal with death. But first, like Mr. Buckley, they must deal with limbo, an increasingly common way station in the grief process today. It's a stage of mourning that researchers say deserves more attention.
"We're prolonging life, but we're also prolonging dying," says Mercedes Bern-Klug, an end-of-life researcher at the University of Iowa, who studies what she terms "ambiguous dying syndrome." Hundreds of thousands of people are surviving longer with advanced dementia or traumatic brain injuries, or in coma states. For their loved ones, "coping with the ambiguity creates a unique type of stress," says Dr. Bern-Klug. "It's a form of angst we don't even have a name for in our culture."
Like families, corporations and nations are often unprepared for the repercussions of limbo. When ABC News anchor Bob Woodruff suffered a near-fatal head wound in Iraq, ABC had no firm contingency plan. Israel's former prime minister Ariel Sharon has been in a coma since January 2006, and Israel's government has moved on fitfully.
On the home front, the emotional toll of limbo can be excruciating. After Mary Buckley was left in a vegetative state with her eyes open, Mr. Buckley and his four sons endured false hopes offered by doctors, and their own feelings of helplessness and guilt. "I visited almost every day, but it was more out of a sense of duty than love," says Mr. Buckley. "The woman I married was gone."
During his wife's second year in a coma, Mr. Buckley developed romantic feelings for a widow who worked at a disability group. They proceeded slowly. She told him: "I feel like your mistress. You're still married." He replied: "I am and I'm not." By the time his wife died last October, Mr. Buckley had worked through his grief. "What I felt then was relief."
FORUM
Join Jeff Zaslow and other readers in a discussion on limbo and grief.
At the bridge in Minneapolis, there was also relief last week when the bodies of Sadiya Sahal and her young daughter were finally found. Ms. Sahal came from Somalia, where in Muslim culture it is crucial for someone to be considered either alive or dead. Not having their bodies was "mental torment" for Ms. Sahal's loved ones, and they were grateful to have closure, says Omar Jamal, a family friend and spokesman.
In Saugus, Calif., John Colvin will be in limbo indefinitely. His wife remains severely cognitively impaired nine years after suffering a ruptured aneurysm in her brain. Now 61 years old and otherwise healthy, she may live for decades. Mr. Colvin, a religious man, vows not to seek sexual intimacy elsewhere. "I could have become a hard-core alcoholic," he says, but instead he found solace in a caregivers' support group.
The group's members remind each other not to be martyrs and to care for themselves first. They also give each other permission to joke about their ordeal, and to fantasize about an end to it. One of their mottos: "You can think terrible thoughts as long as you don't say them."
As medical advances continue to "deform the dying process," Dr. Bern-Klug predicts, families will have to deal with variations of limbo that are now unimaginable. It's territory that must be charted carefully, she says, as more of us share that experience of standing on a riverbank, waiting.
. Email: Jeffrey.Zaslow@wsj.com.
"Hundreds of thousands of people are surviving longer with advanced dementia or traumatic brain injuries, or in coma states," Zaslow explains. "For their loved one, 'coping with the ambiguity creates a unique type of stress,''" according to a researcher. (See full article below.)
This exactly captures the situation I find myself in with my mother.
Wall Street Journal, Aug. 16, p. D1
MOVING ON By JEFF ZASLOW
Waiting for the End:When Loved OnesAre Lost in LimboAugust 16, 2007; Page D1
In the days after the Aug. 1 Minneapolis bridge collapse, families of the missing stood by the Mississippi River, waiting for word. Some 1,300 miles away, in Virginia Beach, Va., a widower named Matt Buckley found himself empathizing with their sadness and sense of uncertainty.
"I know that feeling of limbo," he says. "I can picture myself staring into that murky water, wondering and hoping. That's how I felt when I'd sit with my wife, wondering what was in her head: Are you there? Are you with us?"
Don Erickson, trapped in a Utah mine, in a photo held by his wife.
In 2004, Mr. Buckley's 44-year-old wife, Mary, had routine foot surgery and, because of an anesthesia mishap, suffered massive brain damage. She spent 30 months in a coma before dying last year.
The loved ones of those still missing in the Mississippi -- and in last week's Utah coal-mine collapse -- know they will likely have to deal with death. But first, like Mr. Buckley, they must deal with limbo, an increasingly common way station in the grief process today. It's a stage of mourning that researchers say deserves more attention.
"We're prolonging life, but we're also prolonging dying," says Mercedes Bern-Klug, an end-of-life researcher at the University of Iowa, who studies what she terms "ambiguous dying syndrome." Hundreds of thousands of people are surviving longer with advanced dementia or traumatic brain injuries, or in coma states. For their loved ones, "coping with the ambiguity creates a unique type of stress," says Dr. Bern-Klug. "It's a form of angst we don't even have a name for in our culture."
Like families, corporations and nations are often unprepared for the repercussions of limbo. When ABC News anchor Bob Woodruff suffered a near-fatal head wound in Iraq, ABC had no firm contingency plan. Israel's former prime minister Ariel Sharon has been in a coma since January 2006, and Israel's government has moved on fitfully.
On the home front, the emotional toll of limbo can be excruciating. After Mary Buckley was left in a vegetative state with her eyes open, Mr. Buckley and his four sons endured false hopes offered by doctors, and their own feelings of helplessness and guilt. "I visited almost every day, but it was more out of a sense of duty than love," says Mr. Buckley. "The woman I married was gone."
During his wife's second year in a coma, Mr. Buckley developed romantic feelings for a widow who worked at a disability group. They proceeded slowly. She told him: "I feel like your mistress. You're still married." He replied: "I am and I'm not." By the time his wife died last October, Mr. Buckley had worked through his grief. "What I felt then was relief."
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At the bridge in Minneapolis, there was also relief last week when the bodies of Sadiya Sahal and her young daughter were finally found. Ms. Sahal came from Somalia, where in Muslim culture it is crucial for someone to be considered either alive or dead. Not having their bodies was "mental torment" for Ms. Sahal's loved ones, and they were grateful to have closure, says Omar Jamal, a family friend and spokesman.
In Saugus, Calif., John Colvin will be in limbo indefinitely. His wife remains severely cognitively impaired nine years after suffering a ruptured aneurysm in her brain. Now 61 years old and otherwise healthy, she may live for decades. Mr. Colvin, a religious man, vows not to seek sexual intimacy elsewhere. "I could have become a hard-core alcoholic," he says, but instead he found solace in a caregivers' support group.
The group's members remind each other not to be martyrs and to care for themselves first. They also give each other permission to joke about their ordeal, and to fantasize about an end to it. One of their mottos: "You can think terrible thoughts as long as you don't say them."
As medical advances continue to "deform the dying process," Dr. Bern-Klug predicts, families will have to deal with variations of limbo that are now unimaginable. It's territory that must be charted carefully, she says, as more of us share that experience of standing on a riverbank, waiting.
. Email: Jeffrey.Zaslow@wsj.com.
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