I arrive at Mom's residence to take her to an appointment with her orthopedist.
She's talking about bougainvillea again. I'm amazed at how this word sticks.
"That's my bougainvillea," We had it in Bakersfield," she says.
"Yes, we did," I say, saying to myself She remembers the oleander.
"Wasn't it nice to see Bill?" I ask, to remind her that he was here.
"It's time," she says.
"Time for what?" I ask.
"I think I should get the hell out of here and go to heaven," she answers. "It's more peaceful there."
"Yes, it is," I say weakly. I never know what she is going to say next.
As I wheel her to the orthopedist, she's still talking a blue streak.
"What does it mean when they say that your house is not an option? I thought it was all fixed up for me."
I remember that Bill and I were discussing in her presence where to place her when she can no longer stay in assisted living. The skilled nursing facility was a disaster, and I told him that I sometimes think of having her live at my house because it might be better and less expensive than a SNF, but that really it's not an option. John and my kids would not tolerate it, even if I could arrange for a caregiver to stay with her 24/7.
"Yes, the bathroom is all fixed up for you with bars and things, but I don't think you'd like to sleep at my house," I say, thinking frantically of how to answer this one. "Usually you want to go back to your place."
"But here the bad man comes in all night and hassles me," she says.
I know she means rape.
I don't know why this "bad man" thought keeps coming in her mind. Every time she sees a male, especially dark-skinned, it's the "bad man."
The conversation moves to management the bad men out there, and she forgets about wanting to know why she can't live with me. Whew.
The orthopedist orders physical therapy for her, range of movement exercises. He wants her to do outpatient but I tell him it has to be Home Health Services. I will not take her to PT 2-3 times per week, and Rehabnet didn't think she was worth their attention the last time I took her there. They saw no progress in four weeks and discharged her.
He's also concerned about her kyphosis (bent over back). He gives us a prescription for a back brace to hold her up straighter, but I don't know if I will fill it.
I just don't know if she can stand to have a back brace.
Tuesday, May 15, 2007
Monday, May 14, 2007
D/C Coumadin
Mom and I return to her regular doctor for her first check-up since my disastrous attempt to move her to skilled nursing.
I explain that it just didn't work out at Country Villa Mar Vista. The caregivers had too many patients and she even went through three meals without her false teeth.
Because it was a UTI that prompted the whole episode, I tell Dr. Rosen that my brother recommends just putting Mom on a prophylactic antibiotic to prevent bladder infections.
She's happy to order Macrodantin, 50 mg per day, which will kill most bacteria that cause chronic urinary tract infections.
"But the bacteria that caused this last infection was Klepsiel," she reminds me. "That one's not susceptible to Macrodantin."
"I understand," I say. "As long as it kills most of them."
"We're still not ready for hospice," I say. "But we do want to avoid medical procedures that cause her discomfort, like blood draws and catheterization. We want to take her off Coumadin so she doesn't have to have her blood drawn every week, sometimes twice a week. She refuses her meds sometimes, so that throws off the effort to stabilize her anticoagulation levels, and she doesn't eat meals on a sleepy day, so that throws it off too."
"No future straight caths," the doctor writes in her chart.
"We could reduce the Coumadin to a low dose, 1 mg, and stop checking her Pro-thrombin times, or we could d/c it altogether," Dr. Rosen offers.
"Let's stop it completely," I say. "My brother says she could have Plavix or aspirin instead."
"No, Plavix is for the heart," she says. "But I can order her 325 mg of Aspirin per day. The question is, do we treat a pulmonary embolism if it occurs? Because she had one in September, 2005, and it could happen again."
"Well, I guess not, if she's dying. But if she's just uncomfortable..."
"We have to ask, 'What are the goals of care? We want to keep her comfortable, but what are we willing to treat?' I think we treat a UTI, pneumonia, PE. But we don't want to treat, then withdraw treatment; treat, withdraw."
"No, that doesn't make sense," I agree.
Then I explain that Mom's thirty-year old bed with the lifting function for the head and feet was pronounced worn out by the repairman from Wishing Well, and that he said Medicare would pay for a new bed if the doctor ordered it.
She writes an order.
We also discuss bed sores, so she orders a gel mattress for the bed.
I wheel Mom out, grateful for having accomplished so much on this visit to the doctor.
~ ~ ~
I don't tell her that an hour earlier I got a call from my daughter's rehab place with the news that Ellen is missing. Apparently she was taken to a movie with several other patients, asked to go to the restroom, and escaped.
She has been AWOL, using cocaine and methamphetamine at a "tweaking pad" since last night. They didn't call us until this morning, just before I left for this doctor's appointment.
Ellen has called in and promised to return as soon as she can get her nerve up to do that--but meanwhile all I can do is worry.
I don't tell the doctor that really I don't care about my mother and her Coumadin, Macrodantin, etc. I just care about my daughter.
I explain that it just didn't work out at Country Villa Mar Vista. The caregivers had too many patients and she even went through three meals without her false teeth.
Because it was a UTI that prompted the whole episode, I tell Dr. Rosen that my brother recommends just putting Mom on a prophylactic antibiotic to prevent bladder infections.
She's happy to order Macrodantin, 50 mg per day, which will kill most bacteria that cause chronic urinary tract infections.
"But the bacteria that caused this last infection was Klepsiel," she reminds me. "That one's not susceptible to Macrodantin."
"I understand," I say. "As long as it kills most of them."
"We're still not ready for hospice," I say. "But we do want to avoid medical procedures that cause her discomfort, like blood draws and catheterization. We want to take her off Coumadin so she doesn't have to have her blood drawn every week, sometimes twice a week. She refuses her meds sometimes, so that throws off the effort to stabilize her anticoagulation levels, and she doesn't eat meals on a sleepy day, so that throws it off too."
"No future straight caths," the doctor writes in her chart.
"We could reduce the Coumadin to a low dose, 1 mg, and stop checking her Pro-thrombin times, or we could d/c it altogether," Dr. Rosen offers.
"Let's stop it completely," I say. "My brother says she could have Plavix or aspirin instead."
"No, Plavix is for the heart," she says. "But I can order her 325 mg of Aspirin per day. The question is, do we treat a pulmonary embolism if it occurs? Because she had one in September, 2005, and it could happen again."
"Well, I guess not, if she's dying. But if she's just uncomfortable..."
"We have to ask, 'What are the goals of care? We want to keep her comfortable, but what are we willing to treat?' I think we treat a UTI, pneumonia, PE. But we don't want to treat, then withdraw treatment; treat, withdraw."
"No, that doesn't make sense," I agree.
Then I explain that Mom's thirty-year old bed with the lifting function for the head and feet was pronounced worn out by the repairman from Wishing Well, and that he said Medicare would pay for a new bed if the doctor ordered it.
She writes an order.
We also discuss bed sores, so she orders a gel mattress for the bed.
I wheel Mom out, grateful for having accomplished so much on this visit to the doctor.
~ ~ ~
I don't tell her that an hour earlier I got a call from my daughter's rehab place with the news that Ellen is missing. Apparently she was taken to a movie with several other patients, asked to go to the restroom, and escaped.
She has been AWOL, using cocaine and methamphetamine at a "tweaking pad" since last night. They didn't call us until this morning, just before I left for this doctor's appointment.
Ellen has called in and promised to return as soon as she can get her nerve up to do that--but meanwhile all I can do is worry.
I don't tell the doctor that really I don't care about my mother and her Coumadin, Macrodantin, etc. I just care about my daughter.
Bougainvillea
"Did you have a nice time yesterday?" I ask Mom. "Remember? Bill visited you for Mother's Day and we went to church and then to the beach."
"Yes," she says. "Bill was here."
"And I had that bougainvillea," she says, stunning me into silence.
~ ~ ~
How did she remember this word? There's so much she can't remember, especially short-term memory, and I've never mentioned this flower to her before. How did the word stick?
That afternoon I called Bill where he works at Ft. Lewis in Washington state.
"Bill, that flower they gave Mom at church yesterday, that bright pink flower--do you remember its name?"
"No," he said. "It was an interesting flower, but why?"
"First just think for a minute and tell me if you can remember the name."
"Okay--well, jacaranda?"
"No."
"I give up."
"Well, I was reminding Mom today what a nice day we had yesterday, with you visiting and all, and she said something about the flower, bougainvillea. I couldn't believe it."
He burst out laughing.
"So you better watch out--in this case, her memory was better than yours. Pretty scary."
"Yup, it is," he agreed.
"Yes," she says. "Bill was here."
"And I had that bougainvillea," she says, stunning me into silence.
~ ~ ~
How did she remember this word? There's so much she can't remember, especially short-term memory, and I've never mentioned this flower to her before. How did the word stick?
That afternoon I called Bill where he works at Ft. Lewis in Washington state.
"Bill, that flower they gave Mom at church yesterday, that bright pink flower--do you remember its name?"
"No," he said. "It was an interesting flower, but why?"
"First just think for a minute and tell me if you can remember the name."
"Okay--well, jacaranda?"
"No."
"I give up."
"Well, I was reminding Mom today what a nice day we had yesterday, with you visiting and all, and she said something about the flower, bougainvillea. I couldn't believe it."
He burst out laughing.
"So you better watch out--in this case, her memory was better than yours. Pretty scary."
"Yup, it is," he agreed.
Tuesday, May 08, 2007
Life in the Rem
Today, driving to visit Mom at 4:45 pm, I got a phone call with the news that my daughter in recovery from cocaine addiction had relapsed but is okay, safely back in rehab as an inpatient.
By the time I dealt with that, I didn't show up in the Reminiscence Neighborhood until 6 pm.
When I appeared, Mom was sitting in a crowd of residents "watching" The Sound of Music, angry that I had not come sooner.
[Note: a few watch, most sit there sleeping or staring blankly.]
She beckoned to me to lean down and whispered something about how terrible and mean the staff had been to her today.
I wheeled her back to her room to do a toilet stop before pushing her in her wheelchair out in the evening air, still warm after another hot day.
But the door was locked and her suite-mate was pounding on it from the inside and yelling.
Caregivers came running, and it turned out that Frances had fallen. She was lying on the carpet striking the door with her cane, furious that no one had responded sooner to her cries for help.
During the Holocaust, Frances spent 2-3 years in a concentration camp, so she has some issues when her legitimate needs are not met.
As Esther tended to Frances, I grabbed Mom's hat and sunglasses and left the scene. We wheeled to Rite-Aid, where I bought us each a one-scoop ice cream cone.
Take care of yourself, says Al-Anon.
Then we went to Von's where I bought cooked shrimp for dinner, in case John gets home hungry.
Back in the Rem, I changed Mom to her nightgown, removed and cleaned her teeth, and set her up in the recliner.
Just another day in the Reminiscence Neighborhood.
By the time I dealt with that, I didn't show up in the Reminiscence Neighborhood until 6 pm.
When I appeared, Mom was sitting in a crowd of residents "watching" The Sound of Music, angry that I had not come sooner.
[Note: a few watch, most sit there sleeping or staring blankly.]
She beckoned to me to lean down and whispered something about how terrible and mean the staff had been to her today.
I wheeled her back to her room to do a toilet stop before pushing her in her wheelchair out in the evening air, still warm after another hot day.
But the door was locked and her suite-mate was pounding on it from the inside and yelling.
Caregivers came running, and it turned out that Frances had fallen. She was lying on the carpet striking the door with her cane, furious that no one had responded sooner to her cries for help.
During the Holocaust, Frances spent 2-3 years in a concentration camp, so she has some issues when her legitimate needs are not met.
As Esther tended to Frances, I grabbed Mom's hat and sunglasses and left the scene. We wheeled to Rite-Aid, where I bought us each a one-scoop ice cream cone.
Take care of yourself, says Al-Anon.
Then we went to Von's where I bought cooked shrimp for dinner, in case John gets home hungry.
Back in the Rem, I changed Mom to her nightgown, removed and cleaned her teeth, and set her up in the recliner.
Just another day in the Reminiscence Neighborhood.
Monday, May 07, 2007
Double Duty
A week ago I was calling moving companies to move my mother's furniture back to her assisted living residence, and then actually accomplishing the move in one day.
I'm so grateful not to be doing that today!
So this afternoon I was hoping to spend an hour or two visiting her but no more.
As it turned out, I spent four hours on her.
First I went to Wishing Well Medical Products to buy a rolling table that adjusts up and down and can swing over a bed or chair. This replaces the end table by her chair.
While there, I asked for a repairman to make a house call and repair her electric bed. After being moved twice in one week, the bed lost a couple of pins, and the head would no longer raise up.
Then I delivered the table to Mom's room, where she was sleeping deeply in her chair.
I didn't try to wake her up--just spent an hour or so sorting and organizing the pile of things by her chair, setting up her Apple laptop on the new table, trying to restore her room to the order it had before the move.
At 3 pm I left--but soon I got a call from the repairman I had requested. He promised to show up at 5 pm, so I had to go back there and bring cash to pay him.
When he and I arrived, it turned out someone from Ocean View had already repaired the bed. The head moved up and down well, but a few days earlier it wasn't working.
Thus the repair call was in vain, though the guy installed one pin that had fallen out.
He pointed out that the mattress was shot and the frame itself was 20-30 years old, a bit of a hazard. It was bought for my father, sometime between 1978 and 1990.
By this time Mom had been wheeled in from the dining room, and she was angry that I hadn't visited her today.
"You didn't come to me today!"
"Mom, I was here for two hours but you were asleep," I pointed out.
She still felt neglected, so I took her out in the car to the Santa Irena pier.
It was a balmy evening after a scorching day. I wanted to push her in the chair around the pier, but she refused.
"I'm afraid," she said. "I might fall in."
Back at the room, I decided to give her a shower. She had refused a shower in the morning, and I think she had not had one since Thursday because I have cut back her private care to only two days.
Susan had told me they were short-staffed--someone hadn't come in--so I wanted to make this contribution.
It was, however, a disastrous shower. I hadn't done one for about six months, none in the bathroom of this two-room suite she has been living in since Dec. 1, 2006.
It was hard to transfer her to the bath chair, soap and rinse her, and get her back in the wheelchair.
"The water's too hot! You're too rough! That's enough now, I'm done," she protested as soon as I started.
Cleaning and then rinsing sufficiently under her pendant breasts and in her perianaeal area was difficult.
By the end she was in tears, just as she had been at Country Villa Mar Vista. I had new respect for the efforts of the caregivers there, whereas a week ago I took her tears after the shower as evidence that she had been showered roughly and impersonally.
Oh well.
I brushed her teeth, dried and powdered her, and left her sitting in her Lanz flannel nightgown in her extended recliner.
And I rushed off to an Al-Anon meeting to confess that I'm overly involved in her care, too quick to succumb to her demands.
I'm so grateful not to be doing that today!
So this afternoon I was hoping to spend an hour or two visiting her but no more.
As it turned out, I spent four hours on her.
First I went to Wishing Well Medical Products to buy a rolling table that adjusts up and down and can swing over a bed or chair. This replaces the end table by her chair.
While there, I asked for a repairman to make a house call and repair her electric bed. After being moved twice in one week, the bed lost a couple of pins, and the head would no longer raise up.
Then I delivered the table to Mom's room, where she was sleeping deeply in her chair.
I didn't try to wake her up--just spent an hour or so sorting and organizing the pile of things by her chair, setting up her Apple laptop on the new table, trying to restore her room to the order it had before the move.
At 3 pm I left--but soon I got a call from the repairman I had requested. He promised to show up at 5 pm, so I had to go back there and bring cash to pay him.
When he and I arrived, it turned out someone from Ocean View had already repaired the bed. The head moved up and down well, but a few days earlier it wasn't working.
Thus the repair call was in vain, though the guy installed one pin that had fallen out.
He pointed out that the mattress was shot and the frame itself was 20-30 years old, a bit of a hazard. It was bought for my father, sometime between 1978 and 1990.
By this time Mom had been wheeled in from the dining room, and she was angry that I hadn't visited her today.
"You didn't come to me today!"
"Mom, I was here for two hours but you were asleep," I pointed out.
She still felt neglected, so I took her out in the car to the Santa Irena pier.
It was a balmy evening after a scorching day. I wanted to push her in the chair around the pier, but she refused.
"I'm afraid," she said. "I might fall in."
Back at the room, I decided to give her a shower. She had refused a shower in the morning, and I think she had not had one since Thursday because I have cut back her private care to only two days.
Susan had told me they were short-staffed--someone hadn't come in--so I wanted to make this contribution.
It was, however, a disastrous shower. I hadn't done one for about six months, none in the bathroom of this two-room suite she has been living in since Dec. 1, 2006.
It was hard to transfer her to the bath chair, soap and rinse her, and get her back in the wheelchair.
"The water's too hot! You're too rough! That's enough now, I'm done," she protested as soon as I started.
Cleaning and then rinsing sufficiently under her pendant breasts and in her perianaeal area was difficult.
By the end she was in tears, just as she had been at Country Villa Mar Vista. I had new respect for the efforts of the caregivers there, whereas a week ago I took her tears after the shower as evidence that she had been showered roughly and impersonally.
Oh well.
I brushed her teeth, dried and powdered her, and left her sitting in her Lanz flannel nightgown in her extended recliner.
And I rushed off to an Al-Anon meeting to confess that I'm overly involved in her care, too quick to succumb to her demands.
Sunday, May 06, 2007
Planning for Next Time
What a relief to have Mom back at Ocean View Assisted Living. She really likes it, and I have peace of mind when I am not with her.
I hope she can live peacefully there until the end, perhaps with hospice, but just in case I am researching alternatives:
1) my brother's home near Tacoma with round the clock attendants
2) various small home-style residences sprinkled throughout Santa Irena with with 5-10 patients each. These vary tremendously, some good and some not so good. I have visited some before and rejected them---not as elegant as Ocean View--but for her last month if she is in a coma and needs nursing care, IV, etc., one of these may be necessary.
3) two residences in the Sunrise chain that have a floor for skilled nursing and may have a good care ratio (1 caregiver having 5-6 residents), unlike most nursing homes (SNFs).
4) any other nursing homes that have a 1/5 care ratio
5) the PEO chapter house in Alhambra (east of LA), which has a skilled nursing wing I think.
So I'm researching these alternatives so that next time, when she gets to the point where she has medical needs that can't be met at Ocean View, I will make a better decision.
I hope she can live peacefully there until the end, perhaps with hospice, but just in case I am researching alternatives:
1) my brother's home near Tacoma with round the clock attendants
2) various small home-style residences sprinkled throughout Santa Irena with with 5-10 patients each. These vary tremendously, some good and some not so good. I have visited some before and rejected them---not as elegant as Ocean View--but for her last month if she is in a coma and needs nursing care, IV, etc., one of these may be necessary.
3) two residences in the Sunrise chain that have a floor for skilled nursing and may have a good care ratio (1 caregiver having 5-6 residents), unlike most nursing homes (SNFs).
4) any other nursing homes that have a 1/5 care ratio
5) the PEO chapter house in Alhambra (east of LA), which has a skilled nursing wing I think.
So I'm researching these alternatives so that next time, when she gets to the point where she has medical needs that can't be met at Ocean View, I will make a better decision.
Classic Lewy Body Dementia
A highly animated or agitated day, followed by a deeply sleepy day--that's classic Lewy Body Dementia.
Mom has these about once a week now. A year or two ago they were less frequent.
The other five days of the week she is pretty normal: talkative, perhaps napping a couple of hours in the morning or afternoon (or both) but able to wake up and eat her meals, to calm down and go to sleep at night.
I feel like a researcher, observing her from day to day.
I just wish I were as detached as a scientist. Instead, I get upset by her refusal to take her meds or by her insistence that someone is a killer, that the Filipino caregiver for the Scotsman John across the hall is a "bad boy" who steals her money and comes into her room at night with evil intentions.
Occasionally I succumb to the temptation to argue with her. The only thing more crazy than arguing with someone who's drunk is arguing with a person who has dementia.
~~~
Last night I realized that her agitation was probably going to be followed by a sleepy day when it would be pointless to take her to church.
Nevertheless, I got up today and went to pick her up and take her to church anyway. When a people are in a coma-like state, you just don't know how much of their surroundings they are perceiving. A bit of movement and stimulation probably can't hurt.
Sure enough, she was sitting in her wheelchair with her head dropped to one side, barely responding to my greeting, not opening her eyes.
The staff reported that she had been too sleepy to eat breakfast, her favorite meal. At least she had drunk orange juice and V-8.
I went to get her purse and sunhat, then wheeled her off to the car. Usually she holds onto the car door frame and supports her weight a little as I put her into the car, but today I had to lift her, all 105 pounds.
I didn't try to make conversation in the car because she was so out of it, but I did turn on classical music.
"Would you like any Acapulco nuts?" I then tried asking her.
"Yes, I would" she mumbled, so I opened the can of Planter's cashews and put it in her lap. She ate them as we drove.
Pistachio nuts are what she really likes, but she can never remember their name and asks for Acapulco nuts. Cashews are easier to find and soft like pistachios, so sometimes she has to make do with them. I don't give her peanuts or almonds or anything hard to chew.
"We'll go to church and then go to the store to buy a few things and then go to my house," I said
"Got to buy toilet paper," she said.
Wow! I would have forgotten, but she remembered that her bathroom was low on toilet paper and that yesterday we had agreed to buy more today. She was reminding me. I was impressed with what her brain could do even in this sleepy state.
When I got Mom out of the car, I found partly chewed cashews in her lips and front teeth, falling out of her mouth. I wiped her mouth.
In church she sat motionless in her wheelchair, not talking.
When I tried to press the offering envelope into her hand, she couldn't hold onto it or drop it in the offering plate, usually a high point of the service for her.
Unfortunately, it was Communion Sunday. I wasn't going to take her up, but I had to move her wheelchair so others could return to their seats after Communion. When I moved her to clear the aisle, however, she kind of woke up, so I decided to take her anyway.
At the altar I took a bit of bread, dipped it in grape juice and offered it to her, but she clamped her mouth shut at the first taste of it. It dropped into her lap, and I picked it up with a tissue.
0 for 2.
After church I did errands to a bookstore, the bank and Walgreen's. She slept peacefully, slouched to one side in the front seat.
Thinking perhaps I should just take her back to her residence and let her sleep in her recliner, I asked her, "Would you like to go to my house?"
"Yes, I want to go to your house," she said without opening her eyes.
Once there, she continued to sleep in the front seat while I unloaded the car, set the wheelchair next to the front seat and open door, and went to talk to neighbors for15 minutes.
Finally I took her into my house and set a cup of orange juice and a plate of grapes in front of her. She ate them with closed eyes.
I made her cinnamon toast, and she ate it too with a small glass of milk.
"I want one of those pears!" she suddenly demanded.
"They're bananas," I said. "Would you like one?"
"Yes, half of one," she said.
I brought both canned pears and half a banana, but then a close friend called. I talked for forty minutes with her while Mom sat slumped at the table, occasionally demanding to go home. She ate the banana but none of the pears.
"So you want to go back to Sunrise?" I asked her when the conversation ended.
"Yes, take me back!" she insisted.
I drove her back, took her to the toilet, and set her up in her recliner with her feet raised. In her lap I put the church bulletin and the funny section from today's LA Times. She never opened her eyes or mouth during any of this.
Then while I was tidying the room before leaving, she mumbled something. (On a sleepy day she doesn't talk clearly.)
"What did you say?" I asked.
"I want to go to your house," she said without opening her eyes.
"You were just at my house for three hours!" I reminded her.
"I want to go again," she said.
"I have to leave now to go cook dinner for John," I lied. "See you tomorrow."
I fled to a 5 pm Al-Anon meeting before the argument got any worse, determined not to engage in debate with dementia.
Mom has these about once a week now. A year or two ago they were less frequent.
The other five days of the week she is pretty normal: talkative, perhaps napping a couple of hours in the morning or afternoon (or both) but able to wake up and eat her meals, to calm down and go to sleep at night.
I feel like a researcher, observing her from day to day.
I just wish I were as detached as a scientist. Instead, I get upset by her refusal to take her meds or by her insistence that someone is a killer, that the Filipino caregiver for the Scotsman John across the hall is a "bad boy" who steals her money and comes into her room at night with evil intentions.
Occasionally I succumb to the temptation to argue with her. The only thing more crazy than arguing with someone who's drunk is arguing with a person who has dementia.
~~~
Last night I realized that her agitation was probably going to be followed by a sleepy day when it would be pointless to take her to church.
Nevertheless, I got up today and went to pick her up and take her to church anyway. When a people are in a coma-like state, you just don't know how much of their surroundings they are perceiving. A bit of movement and stimulation probably can't hurt.
Sure enough, she was sitting in her wheelchair with her head dropped to one side, barely responding to my greeting, not opening her eyes.
The staff reported that she had been too sleepy to eat breakfast, her favorite meal. At least she had drunk orange juice and V-8.
I went to get her purse and sunhat, then wheeled her off to the car. Usually she holds onto the car door frame and supports her weight a little as I put her into the car, but today I had to lift her, all 105 pounds.
I didn't try to make conversation in the car because she was so out of it, but I did turn on classical music.
"Would you like any Acapulco nuts?" I then tried asking her.
"Yes, I would" she mumbled, so I opened the can of Planter's cashews and put it in her lap. She ate them as we drove.
Pistachio nuts are what she really likes, but she can never remember their name and asks for Acapulco nuts. Cashews are easier to find and soft like pistachios, so sometimes she has to make do with them. I don't give her peanuts or almonds or anything hard to chew.
"We'll go to church and then go to the store to buy a few things and then go to my house," I said
"Got to buy toilet paper," she said.
Wow! I would have forgotten, but she remembered that her bathroom was low on toilet paper and that yesterday we had agreed to buy more today. She was reminding me. I was impressed with what her brain could do even in this sleepy state.
When I got Mom out of the car, I found partly chewed cashews in her lips and front teeth, falling out of her mouth. I wiped her mouth.
In church she sat motionless in her wheelchair, not talking.
When I tried to press the offering envelope into her hand, she couldn't hold onto it or drop it in the offering plate, usually a high point of the service for her.
Unfortunately, it was Communion Sunday. I wasn't going to take her up, but I had to move her wheelchair so others could return to their seats after Communion. When I moved her to clear the aisle, however, she kind of woke up, so I decided to take her anyway.
At the altar I took a bit of bread, dipped it in grape juice and offered it to her, but she clamped her mouth shut at the first taste of it. It dropped into her lap, and I picked it up with a tissue.
0 for 2.
After church I did errands to a bookstore, the bank and Walgreen's. She slept peacefully, slouched to one side in the front seat.
Thinking perhaps I should just take her back to her residence and let her sleep in her recliner, I asked her, "Would you like to go to my house?"
"Yes, I want to go to your house," she said without opening her eyes.
Once there, she continued to sleep in the front seat while I unloaded the car, set the wheelchair next to the front seat and open door, and went to talk to neighbors for15 minutes.
Finally I took her into my house and set a cup of orange juice and a plate of grapes in front of her. She ate them with closed eyes.
I made her cinnamon toast, and she ate it too with a small glass of milk.
"I want one of those pears!" she suddenly demanded.
"They're bananas," I said. "Would you like one?"
"Yes, half of one," she said.
I brought both canned pears and half a banana, but then a close friend called. I talked for forty minutes with her while Mom sat slumped at the table, occasionally demanding to go home. She ate the banana but none of the pears.
"So you want to go back to Sunrise?" I asked her when the conversation ended.
"Yes, take me back!" she insisted.
I drove her back, took her to the toilet, and set her up in her recliner with her feet raised. In her lap I put the church bulletin and the funny section from today's LA Times. She never opened her eyes or mouth during any of this.
Then while I was tidying the room before leaving, she mumbled something. (On a sleepy day she doesn't talk clearly.)
"What did you say?" I asked.
"I want to go to your house," she said without opening her eyes.
"You were just at my house for three hours!" I reminded her.
"I want to go again," she said.
"I have to leave now to go cook dinner for John," I lied. "See you tomorrow."
I fled to a 5 pm Al-Anon meeting before the argument got any worse, determined not to engage in debate with dementia.
Lewy Body Moment
I pull into the driveway
and park facing the sign that says
Warning: Bad Dog.
Usually it delights her.
"We're here at my house," I say
but she does not answer.
Her hand, resting with fingers in
the can of cashews,
does not stir.
She remains bent over to her left,
humming lightly,
her elbow on the arm rest,
her eyes closed behind sunglasses.
What an elegance she presents:
pleated white wool skirt,
yellow-checked blouse with appliques
(daffodils and butterflies)
open over a yellow turtleneck,
pearls, green earrings,
straw hat tied 'round her neck with a scarf.
She snores now and her hand stirs.
Dr. Lewy would understand:
it's a sleepy day.
and park facing the sign that says
Warning: Bad Dog.
Usually it delights her.
"We're here at my house," I say
but she does not answer.
Her hand, resting with fingers in
the can of cashews,
does not stir.
She remains bent over to her left,
humming lightly,
her elbow on the arm rest,
her eyes closed behind sunglasses.
What an elegance she presents:
pleated white wool skirt,
yellow-checked blouse with appliques
(daffodils and butterflies)
open over a yellow turtleneck,
pearls, green earrings,
straw hat tied 'round her neck with a scarf.
She snores now and her hand stirs.
Dr. Lewy would understand:
it's a sleepy day.
Saturday, May 05, 2007
Midnight Mania
Just got a call from Susan, a caregiver at Sunrise, at 9:40 pm still trying to get Mom to take her 9 pm meds, which include Coumadin.
She thought that I could get Mom to take them if I talked to her.
I told her that recently even I can't get her to take them--even in person.
After reassuring Susan that it's okay if she can't get Mom to take the meds, I talked to Mom. She was raving about a man across the hall killing people, along with other distractions from the subject of taking her meds.
"This woman's husband shot a guy," she said. "He's a dope and--"
"No, Susan's husband did not kill anyone," I argued, falling into the trap. "That's not your business. Your job is to take your medicines and get a good night's sleep so you can go to church tomorrow."
"You don't understand what's going on here!" she insisted.
"I won't take you to church tomorrow if you don't take your meds and get a good night's sleep! "
"But they are killing people!"
Soon I was yelling at her over the phone: "No one is killing anyone! If you don't take the meds, fine. You can stay home in bed and not go to church. That's your choice! I'm going to hang up now."
I guess the Time magazine that arrived today contained something about the murders at Virginia Tech. I need to make sure she doesn't get hold of anything like that.
When I visited her this afternoon at 3 pm, she was about as sharp-witted as she can be--but now that I think of it, she was on the high edge of sharp (a little manic).
I took her to the grocery store and to my home, where we waited in vain for one of my two daughters or my husband to appear. It turned out they had been at the house earlier but had all three left to get a hamburger.
After an hour of cinnamon raisin toast, grapes, strawberries, a banana,and waiting, I made a few phone calls, learned that they weren't going to be around, took Mom back to Ocean View, and spent an hour organizing her room and toileting her.
Now she is agitated, refusing meds, hard to manage.
Such a quandry, what to do about her. I should just let the staff deal with it until the director of her residence decides she's too much of a psych case and kicks her out.
~~~
After calming down from the phone call, I decided to go over to encourage the staff and to instruct them in how to deal with her. I did not let her know that I had come; I definitely don't want to reinforce bad behavior by rushing over to see her whenever she throws a fit.
This is a transition week when she no longer has the private caregivers she has had every night for 2 1/2 years. I am keeping Connie Tuesday and Thursday evening only--the other five nights the Ocean View staff has to learn to cope with her.
I went to support the Ocean View caregivers, to thank them for their patience in dealing with her, and to demonstrate that I can be there in five minutes if they have a real emergency.
I need to cut back on the private caregivers, since she has only $100,000 left, but she needs a person experienced in dealing with her. On her agitated days she is hard to manage; on her sleepy days she is hard to lift.
I told them:
--Respect her wish not to take her meds. Just give up on the meds. Often she will take them after the fun of fighting ends.
--She has hallucinations: she sees things.
"Oh yes, she says there's a man in the room and points 'Right there!'" Tracy, one of the night caregivers reported. She was interested to hear these behaviors identified as hallucinations.
--She also has delusions, often rooted in nightmares that are real events to her. The Virginia Tech murders are right here; the murderer is a man across the hall.
--She often has an extremely sleepy day after an agitated evening like this. Her computer just doesn't boot up.
--All these behaviors are her Lewy Body dementia, very different from Alzheimer's.
--I am five minutes away. You can call me at any time and I can be there in five minutes if there is a real emergency.
--Thank you for dealing with her.
What a handful she is. I expect that she will have a sleepy day tomorrow and not even realize she is being taken to church.
She thought that I could get Mom to take them if I talked to her.
I told her that recently even I can't get her to take them--even in person.
After reassuring Susan that it's okay if she can't get Mom to take the meds, I talked to Mom. She was raving about a man across the hall killing people, along with other distractions from the subject of taking her meds.
"This woman's husband shot a guy," she said. "He's a dope and--"
"No, Susan's husband did not kill anyone," I argued, falling into the trap. "That's not your business. Your job is to take your medicines and get a good night's sleep so you can go to church tomorrow."
"You don't understand what's going on here!" she insisted.
"I won't take you to church tomorrow if you don't take your meds and get a good night's sleep! "
"But they are killing people!"
Soon I was yelling at her over the phone: "No one is killing anyone! If you don't take the meds, fine. You can stay home in bed and not go to church. That's your choice! I'm going to hang up now."
I guess the Time magazine that arrived today contained something about the murders at Virginia Tech. I need to make sure she doesn't get hold of anything like that.
When I visited her this afternoon at 3 pm, she was about as sharp-witted as she can be--but now that I think of it, she was on the high edge of sharp (a little manic).
I took her to the grocery store and to my home, where we waited in vain for one of my two daughters or my husband to appear. It turned out they had been at the house earlier but had all three left to get a hamburger.
After an hour of cinnamon raisin toast, grapes, strawberries, a banana,and waiting, I made a few phone calls, learned that they weren't going to be around, took Mom back to Ocean View, and spent an hour organizing her room and toileting her.
Now she is agitated, refusing meds, hard to manage.
Such a quandry, what to do about her. I should just let the staff deal with it until the director of her residence decides she's too much of a psych case and kicks her out.
~~~
After calming down from the phone call, I decided to go over to encourage the staff and to instruct them in how to deal with her. I did not let her know that I had come; I definitely don't want to reinforce bad behavior by rushing over to see her whenever she throws a fit.
This is a transition week when she no longer has the private caregivers she has had every night for 2 1/2 years. I am keeping Connie Tuesday and Thursday evening only--the other five nights the Ocean View staff has to learn to cope with her.
I went to support the Ocean View caregivers, to thank them for their patience in dealing with her, and to demonstrate that I can be there in five minutes if they have a real emergency.
I need to cut back on the private caregivers, since she has only $100,000 left, but she needs a person experienced in dealing with her. On her agitated days she is hard to manage; on her sleepy days she is hard to lift.
I told them:
--Respect her wish not to take her meds. Just give up on the meds. Often she will take them after the fun of fighting ends.
--She has hallucinations: she sees things.
"Oh yes, she says there's a man in the room and points 'Right there!'" Tracy, one of the night caregivers reported. She was interested to hear these behaviors identified as hallucinations.
--She also has delusions, often rooted in nightmares that are real events to her. The Virginia Tech murders are right here; the murderer is a man across the hall.
--She often has an extremely sleepy day after an agitated evening like this. Her computer just doesn't boot up.
--All these behaviors are her Lewy Body dementia, very different from Alzheimer's.
--I am five minutes away. You can call me at any time and I can be there in five minutes if there is a real emergency.
--Thank you for dealing with her.
What a handful she is. I expect that she will have a sleepy day tomorrow and not even realize she is being taken to church.
Thursday, May 03, 2007
Scabies and Lost Teeth
Elisa continued to report the horrors of Country Villa when I saw her on Thursday, the first time since she had told me I had to move my mother back to Ocean View.
"They have scabies three times!" she told me. "Three times!"
"Rabies?" I puzzled.
"No, scabies. You know scabies? All the residents, their skin dry, itching. They wash the floors and walls with chemicals. I wear a gown, wash it. I don want to get it too, bring home to my daughter."
"And the false teeth! They pay $50,000 because they lose the teeth."
"What do you mean they lose the teeth?" I asked sharply.
"Somebody sue them--people's teeth, they fall on the floor, get stepped on, get lost, thrown out. They have to pay!"
"Lose the teeth? Oh dear!" I moaned.
I didn't need any more testimonials to convince me that Mom's exit from there had been urgent, a narrow escape.
"They have scabies three times!" she told me. "Three times!"
"Rabies?" I puzzled.
"No, scabies. You know scabies? All the residents, their skin dry, itching. They wash the floors and walls with chemicals. I wear a gown, wash it. I don want to get it too, bring home to my daughter."
"And the false teeth! They pay $50,000 because they lose the teeth."
"What do you mean they lose the teeth?" I asked sharply.
"Somebody sue them--people's teeth, they fall on the floor, get stepped on, get lost, thrown out. They have to pay!"
"Lose the teeth? Oh dear!" I moaned.
I didn't need any more testimonials to convince me that Mom's exit from there had been urgent, a narrow escape.
Wednesday, May 02, 2007
Fine and Feisty
Mom's fine and feisty again, full of demands.
I arrived at 2 pm, took her out in the wheelchair to See's Candy and to a drug store to buy Calmoseptine for her stage one bedsore.
Then while she was at dinner I hung the large framed old family photos on her wall again and sorted the laundry baskets full of her toiletries, towels, clothes, etc.
After her dinner I continued working and chatting with her.
I explained to her caregiver, Jane from Nairobi, Kenya, that I had cut back on her private caregiver hours and that I hope the residence can provide all the care Mom needs. That means showers, mouth and denture care in the evening, evening meds (which she often resists), and putting her to bed.
After itemizing her care, I offered to do it tonight since I was already there.
At 6:30 pm I said to Mom, "Okay, let's go to the bathroom and put your nightgown on and take your teeth out. Then I'll let you watch tv or listen to music if you want to."
"That's big of you," Mom retorted sarcastically.
We both laughed at this state of affairs: me feeling generous about tossing Mom a few crumbs of her former life.
At 7:30 I said, "Okay, I'm going home now to eat dinner and go to bed."
"Come back tonight," Mom demanded.
"It is night!" I tried to explain. "I'm going home to bed."
"You come back!" she insisted. "If you don't, you'll be sorry."
"I'll see you tomorrow," I countered, finally leaving as she continued to use threats to try to make me return sooner.
~~~
A study of longevity and mental health released recently found that people 60 yrs. and younger live longer if they keep a positive outlook and are happy.
But for the elderly, those who complain and fight a lot live longer.
Last week at Country Villa, Mom had lost her ability to complain and demand her rights. She was listless. She never even asked for her wristwatch, which had been removed when she entered the hospital on April 19.
But back at Sunrise on April 30, she demanded, "Where's my watch? I need my watch!"
Within 24 hours she was back at her usual level of crotchetiness. After a day of looking for her watch, I ended up putting mine on her wrist just to quiet her.
She's doing fine!
~~~
Financial note:
Instead of having a private caregiver every day, 2-10 pm, I'm now having Connie Reysag come only two days a week, Tuesday and Thursday.
Racquel Estrada, who worked for Mom on weekends for 2 1/2 years, started two 12-hour shifts on Saturday and Sunday caring for someone else because I moved Mom to Country Villa and said I didn't need her.
These were cost cutting measures. I used to pay $14 per hour for 56 hours per week, $784, in addition to Mom's room at Ocean View Assisted Living, $150 per day, and her care $56 per day, about $7,000 per month.
I hope to give up private care altogether within a few months and just depend on Ocean View for all Mom's care.
I arrived at 2 pm, took her out in the wheelchair to See's Candy and to a drug store to buy Calmoseptine for her stage one bedsore.
Then while she was at dinner I hung the large framed old family photos on her wall again and sorted the laundry baskets full of her toiletries, towels, clothes, etc.
After her dinner I continued working and chatting with her.
I explained to her caregiver, Jane from Nairobi, Kenya, that I had cut back on her private caregiver hours and that I hope the residence can provide all the care Mom needs. That means showers, mouth and denture care in the evening, evening meds (which she often resists), and putting her to bed.
After itemizing her care, I offered to do it tonight since I was already there.
At 6:30 pm I said to Mom, "Okay, let's go to the bathroom and put your nightgown on and take your teeth out. Then I'll let you watch tv or listen to music if you want to."
"That's big of you," Mom retorted sarcastically.
We both laughed at this state of affairs: me feeling generous about tossing Mom a few crumbs of her former life.
At 7:30 I said, "Okay, I'm going home now to eat dinner and go to bed."
"Come back tonight," Mom demanded.
"It is night!" I tried to explain. "I'm going home to bed."
"You come back!" she insisted. "If you don't, you'll be sorry."
"I'll see you tomorrow," I countered, finally leaving as she continued to use threats to try to make me return sooner.
~~~
A study of longevity and mental health released recently found that people 60 yrs. and younger live longer if they keep a positive outlook and are happy.
But for the elderly, those who complain and fight a lot live longer.
Last week at Country Villa, Mom had lost her ability to complain and demand her rights. She was listless. She never even asked for her wristwatch, which had been removed when she entered the hospital on April 19.
But back at Sunrise on April 30, she demanded, "Where's my watch? I need my watch!"
Within 24 hours she was back at her usual level of crotchetiness. After a day of looking for her watch, I ended up putting mine on her wrist just to quiet her.
She's doing fine!
~~~
Financial note:
Instead of having a private caregiver every day, 2-10 pm, I'm now having Connie Reysag come only two days a week, Tuesday and Thursday.
Racquel Estrada, who worked for Mom on weekends for 2 1/2 years, started two 12-hour shifts on Saturday and Sunday caring for someone else because I moved Mom to Country Villa and said I didn't need her.
These were cost cutting measures. I used to pay $14 per hour for 56 hours per week, $784, in addition to Mom's room at Ocean View Assisted Living, $150 per day, and her care $56 per day, about $7,000 per month.
I hope to give up private care altogether within a few months and just depend on Ocean View for all Mom's care.
Passive Smoke & Dementia
"Passive Smoke Boosts Dementia Risk" says an article on WebMD today. See below.
But my brother Bill, a doctor, says that the risk probably lies not just in the smoke per se but in the various risk factors that commonly occur along with smoking--unhealthy diet, lack of exercise, etc.
(WebMD) If your spouse still smokes, here's a new reason to urge him or her to quit.
A new study suggests that people who live with a smoker for more than 30 years are about 30 percent more likely to develop dementia than those who have never lived with a smoker.
The situation is even worse for people who are already at increased risk for dementia due to clogged arteries leading to the brain, says researcher Tad Haight, MA, senior statistician at the University of California at Berkeley.
For such people, living with a smoker for more than 30 years appears to raise dementia risk more than twofold compared with people who never lived with a smoker and don't have blocked brain arteries, he tells WebMD.
The study, presented at the American Academy of Neurology's annual meeting, included 985 people aged 65 and older who had never smoked. None had dementia or had suffered a heart attack or stroke or had blocked leg arteries at the start of the study.
Of the total, 495 lived with a smoker for an average of 28 years. Over the next seven years, 10 percent of the 985 people suffered a heart attack or stroke or developed blockages or clots in their leg arteries.
Fifteen percent were diagnosed with dementia.
No Extra Dementia Screening Warranted
Ronald C. Petersen, MD, director of the Alzheimer's Disease Center at the Mayo Clinic in Rochester, Minn., says that while the study showed a link between passive smoke and dementia, it doesn't prove that it actually caused the memory disorder.
Petersen tells WebMD that people who have lived with a smoker shouldn't rush to their doctor to get tested for dementia.
"From a practical point of view, the thing to do is remove yourself from the situation and follow a healthy lifestyle - things we recommend in any case," Petersen says.
But there's no reason, still, not to use it as ammunition to convince your spouse to kick the habit.
But my brother Bill, a doctor, says that the risk probably lies not just in the smoke per se but in the various risk factors that commonly occur along with smoking--unhealthy diet, lack of exercise, etc.
(WebMD) If your spouse still smokes, here's a new reason to urge him or her to quit.
A new study suggests that people who live with a smoker for more than 30 years are about 30 percent more likely to develop dementia than those who have never lived with a smoker.
The situation is even worse for people who are already at increased risk for dementia due to clogged arteries leading to the brain, says researcher Tad Haight, MA, senior statistician at the University of California at Berkeley.
For such people, living with a smoker for more than 30 years appears to raise dementia risk more than twofold compared with people who never lived with a smoker and don't have blocked brain arteries, he tells WebMD.
The study, presented at the American Academy of Neurology's annual meeting, included 985 people aged 65 and older who had never smoked. None had dementia or had suffered a heart attack or stroke or had blocked leg arteries at the start of the study.
Of the total, 495 lived with a smoker for an average of 28 years. Over the next seven years, 10 percent of the 985 people suffered a heart attack or stroke or developed blockages or clots in their leg arteries.
Fifteen percent were diagnosed with dementia.
No Extra Dementia Screening Warranted
Ronald C. Petersen, MD, director of the Alzheimer's Disease Center at the Mayo Clinic in Rochester, Minn., says that while the study showed a link between passive smoke and dementia, it doesn't prove that it actually caused the memory disorder.
Petersen tells WebMD that people who have lived with a smoker shouldn't rush to their doctor to get tested for dementia.
"From a practical point of view, the thing to do is remove yourself from the situation and follow a healthy lifestyle - things we recommend in any case," Petersen says.
But there's no reason, still, not to use it as ammunition to convince your spouse to kick the habit.
After the Storm
Like a wilted plant that springs back up when given water, Mom recovered all her spunk and personality within 24 hours after returning to Ocean View Assisted Living.
I'm the one who's still in shock, grieving over the whole experience.
What a mistake to put her into skilled nursing!
Why did I do it?
I look back to my list of pros and cons on April 20.
I read my reflections: The SNF should be less work for me after she gets settled... doctor will visit her there, tests will be done there. But moving is a bit of work, and if she's not happy there, she could become more time-consuming there.
More time-consuming--no kidding. It was a terrible ordeal. She was declining fast, and I could focus on nothing else except what to do about her.
I thought that I could recreate her room in the SNF by moving her doll chest, her recliner, her television and CD player, her bureau with its photos and jewelry, her black desk and chair, and her closet full of clothes.
I've done this so many times before:
~~in December 2001 when we moved her out of her own home to the Meridian, an independent/assisted living residence in her hometown, Boulder, Colorado;
--in December 2003 when we moved her to Sunrise Assisted Living in Mission Viejo, California, near my sister, Emily;
--in May 2004 when I moved her to the "Reminiscence Neighborhood" of that Sunrise residence;
--in October 2004 when I moved her to Ocean View Assisted Living in Santa Irena, near me;
--in December 2006 when I moved her to a smaller room in the same residence.
But it didn't work when I moved her to the skilled nursing facility.
The presence of LVNs around the clock, an RN in the daytime, a doctor who visited her in her room; a physical therapist, speech therapist, and occupational therapist was excellent. Lots of medical services and attention. Blood tests, x-rays, catheterizations, IVs could all be done right there.
Yulia, the careful speech therapist, wrote the following note and posted it on the wall above her recliner:
Swallow Precautions--Evelyn E.
1. Place partials in for meals.
2. Sit up at 90 degrees.
3. Stay up 30 min. after meal.
4. Mechanical soft diet with thin liquids.
5. Small bites alternate with small sips.
6. Remind to take small, single sips.
Thank you! ~~ Yulia, S.T.
A lovely note--but the certifed nurse assistants (CNAs) have too heavy a work load to read notes and follow up on these great instructions.
No one put her false teeth in for her meals on Sunday. The previous Wednesday I noticed at breakfast that she had no teeth in, but I accepted their assurances that it would not happen again. Notes were put up on her bathroom mirror.
All the notes might as well have been invisible.
The only factor that really mattered was the ratio of CNAs to patients.
That was my big mistake: sloppy research in finding out this ratio. I took the word of Mariel, someone at the nurses station on Friday, April 20. The numbers she gave me didn't seem right, but I didn't quiz her further and didn't go to the director for confirmation. I discussed it with my sister and thought the ratios were 1/7, morning shift; 1/5, afternoon/evening shift; 1/4 night shift.
The numbers were 7, 5, and 4 as reported, but it wasn't a ratio. It was just the number of CNAs at work on those three shifts caring for 59 residents on the day I toured, 63 a few days later (68 beds maximum).
The person I talked to hadn't understood my question or perhaps didn't know what a ratio was.
I didn't investigate further.
Instead, I moved all Mom's furniture.
Twice.
The real ratios on Sunday, when I asked again at the nurses station, were 1/9, 1/12 or 13, and 1/15 or 16 (for 63 residents).
Had I understood those ratios, I would not have moved Mom, despite all the wonderful medical attention offered.
She does need a fair amount of nursing care, not just assisted living, but care begins with teeth and toileting. If she's not going to get that, all the MDs, RNs, PTs, OTs, and STs in the world are not going to make a difference.
Even more than nursing care, she needs facial contact and verbal interaction with her caregivers. That's what keeps her alive.
That's not going to happen with CNAs who are underpaid, overloaded, and don't speak English.
So the whole week is now just Anne's Big Mistake. Mom is no worse for the wear, I think. As soon as I recover my sanity and equilibrium, it will become history.
May this story be a warning to others looking for care for elderly or disabled family members: above all, check the ratio of caregivers to residents. Other factors are unimportant compared to this.
I'm the one who's still in shock, grieving over the whole experience.
What a mistake to put her into skilled nursing!
Why did I do it?
I look back to my list of pros and cons on April 20.
I read my reflections: The SNF should be less work for me after she gets settled... doctor will visit her there, tests will be done there. But moving is a bit of work, and if she's not happy there, she could become more time-consuming there.
More time-consuming--no kidding. It was a terrible ordeal. She was declining fast, and I could focus on nothing else except what to do about her.
I thought that I could recreate her room in the SNF by moving her doll chest, her recliner, her television and CD player, her bureau with its photos and jewelry, her black desk and chair, and her closet full of clothes.
I've done this so many times before:
~~in December 2001 when we moved her out of her own home to the Meridian, an independent/assisted living residence in her hometown, Boulder, Colorado;
--in December 2003 when we moved her to Sunrise Assisted Living in Mission Viejo, California, near my sister, Emily;
--in May 2004 when I moved her to the "Reminiscence Neighborhood" of that Sunrise residence;
--in October 2004 when I moved her to Ocean View Assisted Living in Santa Irena, near me;
--in December 2006 when I moved her to a smaller room in the same residence.
But it didn't work when I moved her to the skilled nursing facility.
The presence of LVNs around the clock, an RN in the daytime, a doctor who visited her in her room; a physical therapist, speech therapist, and occupational therapist was excellent. Lots of medical services and attention. Blood tests, x-rays, catheterizations, IVs could all be done right there.
Yulia, the careful speech therapist, wrote the following note and posted it on the wall above her recliner:
Swallow Precautions--Evelyn E.
1. Place partials in for meals.
2. Sit up at 90 degrees.
3. Stay up 30 min. after meal.
4. Mechanical soft diet with thin liquids.
5. Small bites alternate with small sips.
6. Remind to take small, single sips.
Thank you! ~~ Yulia, S.T.
A lovely note--but the certifed nurse assistants (CNAs) have too heavy a work load to read notes and follow up on these great instructions.
No one put her false teeth in for her meals on Sunday. The previous Wednesday I noticed at breakfast that she had no teeth in, but I accepted their assurances that it would not happen again. Notes were put up on her bathroom mirror.
All the notes might as well have been invisible.
The only factor that really mattered was the ratio of CNAs to patients.
That was my big mistake: sloppy research in finding out this ratio. I took the word of Mariel, someone at the nurses station on Friday, April 20. The numbers she gave me didn't seem right, but I didn't quiz her further and didn't go to the director for confirmation. I discussed it with my sister and thought the ratios were 1/7, morning shift; 1/5, afternoon/evening shift; 1/4 night shift.
The numbers were 7, 5, and 4 as reported, but it wasn't a ratio. It was just the number of CNAs at work on those three shifts caring for 59 residents on the day I toured, 63 a few days later (68 beds maximum).
The person I talked to hadn't understood my question or perhaps didn't know what a ratio was.
I didn't investigate further.
Instead, I moved all Mom's furniture.
Twice.
The real ratios on Sunday, when I asked again at the nurses station, were 1/9, 1/12 or 13, and 1/15 or 16 (for 63 residents).
Had I understood those ratios, I would not have moved Mom, despite all the wonderful medical attention offered.
She does need a fair amount of nursing care, not just assisted living, but care begins with teeth and toileting. If she's not going to get that, all the MDs, RNs, PTs, OTs, and STs in the world are not going to make a difference.
Even more than nursing care, she needs facial contact and verbal interaction with her caregivers. That's what keeps her alive.
That's not going to happen with CNAs who are underpaid, overloaded, and don't speak English.
So the whole week is now just Anne's Big Mistake. Mom is no worse for the wear, I think. As soon as I recover my sanity and equilibrium, it will become history.
May this story be a warning to others looking for care for elderly or disabled family members: above all, check the ratio of caregivers to residents. Other factors are unimportant compared to this.
Monday, April 30, 2007
My Room! My Room!
After dealing with movers and SNF administrators, I drove Mom back to Ocean View and unceremoniously dumped her in the dining room with a bag of French fries and a strawberry milkshake.
I told the movers where to place furniture, signed a lot of papers, and paid them.
Then I realized I was late to a 2 pm doctor's appointment for myself. It was Christina, a caregiver on the pm shift, who pushed her in her wheelchair back to her room about 3 pm.
Her furniture had just arrived and was in place, but the walls and tabletops were bare.
Nevertheless, as Mom rounded the corner and saw her tree (a fake ficus), her door, and her room with its furniture, Christina reported that she began crying out, "My room! My room! My room!"
No doubt she was a bit confused and amazed.
She'd been sleeping in her recliner at the other place two hours earlier.
Now she was back at her long-term residence, and there was her recliner, her bed, her bureau, desk, doll cabinet and television.
It was a miracle.
I told the movers where to place furniture, signed a lot of papers, and paid them.
Then I realized I was late to a 2 pm doctor's appointment for myself. It was Christina, a caregiver on the pm shift, who pushed her in her wheelchair back to her room about 3 pm.
Her furniture had just arrived and was in place, but the walls and tabletops were bare.
Nevertheless, as Mom rounded the corner and saw her tree (a fake ficus), her door, and her room with its furniture, Christina reported that she began crying out, "My room! My room! My room!"
No doubt she was a bit confused and amazed.
She'd been sleeping in her recliner at the other place two hours earlier.
Now she was back at her long-term residence, and there was her recliner, her bed, her bureau, desk, doll cabinet and television.
It was a miracle.
Sunday, April 29, 2007
Look Ma: No Teeth
I slept peacefully after deciding to move Mom out of skilled nursing.
Getting up at 7:15 after only three hours of sleep, I was looking forward to a second great day of the LA Times/UCLA Bookfair.
It took determination to steer the car toward UCLA and take a full day for myself, not going to check on Mom first.
Her circumstances were so miserable at Country Villa Mar Vista that for six days morning, evening, in fact all day long, I had been agonizing over how she was doing, what to do, whether to drive over there.
Today was different, knowing that tomorrow I will move her. I had a great day listening to authors such as Walter Mosely and Jane Smiley.
Mom’s day, however, was not as good.
Arriving at Country Villa at 5:40 pm, I found her eating dinner at a table with Henry, a kind elderly Asian man; Phyllis Berg, a beautiful blue-eyed, clear-minded public health nurse from Minnesota, 81 yrs. old and on a pureed diet; and Nicole, a sharp-tongued, sharp-witted aging little person.
“Hi, Mom, how are you?” I began but realized immediately that her false teeth weren’t in. “Where are your teeth?”
She mumbled an answer as I searched her lap and her crumpled napkin. Yesterday I had watched her take her upper plate out at lunch and wrap it in a napkin, so I was worried that she might have lost them.
Then I walked back to her room to see whether the teeth had been left in the soaking cup since last night.
Sure enough, there they were, sitting in the cup of pale blue Efferdent water, underneath the large sign in purple marker pen posted by a nurse: “Put teeth in resident’s mouth before meals.”
Breakfast, lunch, dinner without her upper plate or lower partial plate, just the eight front teeth still rooted in her lower jaw.
A message from God: you made the right decision in taking her out of here. Thank you.
And a convenient way to explain to Country Villa why I am moving Mom out just a week after moving her in.
I took the charge nurse into her bathroom and showed him the teeth in the cup.
“I’m going to move my mother back to her assisted living residence,” I told him, taking the teeth out to return to the dining room.
I put the teeth into Mom’s mouth, despite her objections, and soon a tiny African woman named Tutu came trembling up to me to apologize. Mom was one of the 12-13 residents she was in charge of for the 3-11 pm shift.
“It’s not your fault,” I said. “You have too many residents to take care of, and of course the CNA taking her to breakfast and lunch should have put her teeth in. Yes, there was a sign on the bathroom mirror, but I don’t blame you.”
“I usually work the night shift,” she explained.
“Oh, and she is a new resident. You aren’t familiar with her care.”
I took Mom back to her room, toileted her, put her nightgown on, and left her in her chair to watch a DVD of The Sound of Music on her laptop computer. Never mind that I had put the same one on the night before.
I went home to have a peaceful dinner with John and his friend Ed Miller, visiting from McLean, Virginia.
In the morning, somehow, I would find a way to move Mom and all her furniture and belongings back to Sunrise.
Getting up at 7:15 after only three hours of sleep, I was looking forward to a second great day of the LA Times/UCLA Bookfair.
It took determination to steer the car toward UCLA and take a full day for myself, not going to check on Mom first.
Her circumstances were so miserable at Country Villa Mar Vista that for six days morning, evening, in fact all day long, I had been agonizing over how she was doing, what to do, whether to drive over there.
Today was different, knowing that tomorrow I will move her. I had a great day listening to authors such as Walter Mosely and Jane Smiley.
Mom’s day, however, was not as good.
Arriving at Country Villa at 5:40 pm, I found her eating dinner at a table with Henry, a kind elderly Asian man; Phyllis Berg, a beautiful blue-eyed, clear-minded public health nurse from Minnesota, 81 yrs. old and on a pureed diet; and Nicole, a sharp-tongued, sharp-witted aging little person.
“Hi, Mom, how are you?” I began but realized immediately that her false teeth weren’t in. “Where are your teeth?”
She mumbled an answer as I searched her lap and her crumpled napkin. Yesterday I had watched her take her upper plate out at lunch and wrap it in a napkin, so I was worried that she might have lost them.
Then I walked back to her room to see whether the teeth had been left in the soaking cup since last night.
Sure enough, there they were, sitting in the cup of pale blue Efferdent water, underneath the large sign in purple marker pen posted by a nurse: “Put teeth in resident’s mouth before meals.”
Breakfast, lunch, dinner without her upper plate or lower partial plate, just the eight front teeth still rooted in her lower jaw.
A message from God: you made the right decision in taking her out of here. Thank you.
And a convenient way to explain to Country Villa why I am moving Mom out just a week after moving her in.
I took the charge nurse into her bathroom and showed him the teeth in the cup.
“I’m going to move my mother back to her assisted living residence,” I told him, taking the teeth out to return to the dining room.
I put the teeth into Mom’s mouth, despite her objections, and soon a tiny African woman named Tutu came trembling up to me to apologize. Mom was one of the 12-13 residents she was in charge of for the 3-11 pm shift.
“It’s not your fault,” I said. “You have too many residents to take care of, and of course the CNA taking her to breakfast and lunch should have put her teeth in. Yes, there was a sign on the bathroom mirror, but I don’t blame you.”
“I usually work the night shift,” she explained.
“Oh, and she is a new resident. You aren’t familiar with her care.”
I took Mom back to her room, toileted her, put her nightgown on, and left her in her chair to watch a DVD of The Sound of Music on her laptop computer. Never mind that I had put the same one on the night before.
I went home to have a peaceful dinner with John and his friend Ed Miller, visiting from McLean, Virginia.
In the morning, somehow, I would find a way to move Mom and all her furniture and belongings back to Sunrise.
She Needs Her White Geranium
Resolved to move Mom back to Ocean View Assisted Living, I went to the bookfair without visiting Mom first. I didn't worry about her. She could last one more day.
I remembered how at Ocean View she depended on a few key markers that told her she was okay and in a safe, pleasant place. These included the (fake) ficus tree by her door and the (fake) white geranium plant sitting in a pot at the turn of the hallway between her room and the dining room.
"There's my white geranium," she would say with satisfaction almost every time she passed the plant, either with her walker or in a wheelchair.
At first I thought I would just bring a new white geranium to County Villa Mar Vista.
But now I realize there are larger problems here than just one missing plant.
I will move her back to her white geranium.
I remembered how at Ocean View she depended on a few key markers that told her she was okay and in a safe, pleasant place. These included the (fake) ficus tree by her door and the (fake) white geranium plant sitting in a pot at the turn of the hallway between her room and the dining room.
"There's my white geranium," she would say with satisfaction almost every time she passed the plant, either with her walker or in a wheelchair.
At first I thought I would just bring a new white geranium to County Villa Mar Vista.
But now I realize there are larger problems here than just one missing plant.
I will move her back to her white geranium.
Hell is a Nursing Home
My 88-year-old mother has been in skilled nursing for a week as of tomorrow afternoon.
I've gotten over my "Bite the bullet" "It's not so bad" thinking.
I'm now seriously considering moving Mom back to Ocean View Assisted Living tomorrow.
This has been one hell of a week, second only to Dec. 31 - Jan 6, the week I learned that one of my daughters has a cocaine addiction.
I thought I would have an easier time with her in a SNF--not so. Much more time-consuming.
She's pretty lost. Her spirit is broken now. She's not fighting with anyone there.
Yesterday she said to me, "This is a pretty good place you picked out." She seemed resigned, trying to please me and accept her reality.
But today she said, "I don't like it here." Each time I arrive she grasps my hands, desperately trying to connect and find reassurance.
At her assisted living, she would often be angry when I arrived, sometimes wanting to hold onto me, but she wasn't listless like she is now. I'm observing something like "failure to thrive."
Food and other residents are not the problem.
Being warehoused is the problem. She's a piece of meat being moved around. They don't talk to her personally, don't interact the way the staff at Sunrise did. There are 59 residents and a lot of staff on various shifts. She's lost.
Of course, she's getting PT, OT, ST, and her doctor visited her in her room. Nurses are in a station right next to her room. They're happy to monitor her UTI status, anticoagulation status, lungs, etc.
I don't have evidence yet of Elisa's charges, but Mom's drop in status to just another item on a workload is evident, especially during her shower, which left her in tears on Thursday night.
I wish I hadn't moved her furniture last Tuesday. At that point I was very committed to making this move work.
But now I think I'm going to pay $500 plus tip again to move all her furniture back to Sunrise.
Her words, "Don't sell my room!" still echo in my mind.
The "woman without a country" will get a home again.
Note to self: Try to figure out how to change the tag line on the blog to read "my 88-year-old mother." I started this blog two years ago.
I've gotten over my "Bite the bullet" "It's not so bad" thinking.
I'm now seriously considering moving Mom back to Ocean View Assisted Living tomorrow.
This has been one hell of a week, second only to Dec. 31 - Jan 6, the week I learned that one of my daughters has a cocaine addiction.
I thought I would have an easier time with her in a SNF--not so. Much more time-consuming.
She's pretty lost. Her spirit is broken now. She's not fighting with anyone there.
Yesterday she said to me, "This is a pretty good place you picked out." She seemed resigned, trying to please me and accept her reality.
But today she said, "I don't like it here." Each time I arrive she grasps my hands, desperately trying to connect and find reassurance.
At her assisted living, she would often be angry when I arrived, sometimes wanting to hold onto me, but she wasn't listless like she is now. I'm observing something like "failure to thrive."
Food and other residents are not the problem.
Being warehoused is the problem. She's a piece of meat being moved around. They don't talk to her personally, don't interact the way the staff at Sunrise did. There are 59 residents and a lot of staff on various shifts. She's lost.
Of course, she's getting PT, OT, ST, and her doctor visited her in her room. Nurses are in a station right next to her room. They're happy to monitor her UTI status, anticoagulation status, lungs, etc.
I don't have evidence yet of Elisa's charges, but Mom's drop in status to just another item on a workload is evident, especially during her shower, which left her in tears on Thursday night.
I wish I hadn't moved her furniture last Tuesday. At that point I was very committed to making this move work.
But now I think I'm going to pay $500 plus tip again to move all her furniture back to Sunrise.
Her words, "Don't sell my room!" still echo in my mind.
The "woman without a country" will get a home again.
Note to self: Try to figure out how to change the tag line on the blog to read "my 88-year-old mother." I started this blog two years ago.
Saturday, April 28, 2007
Day Six in Skilled Nursing
I woke resolved to do two things:
1) Make this move to skilled nursing work out.
2) Take care of myself. Not go crazy worrying about Mom.
To take care of myself, I planned to spend all day today and tomorrow at the LA Times/UCLA Bookfair, listening to various authors and panelists speak about their books.
To make things work out, I drove to Country Villa to check on Mom before going to the book fair. (This meant missing a couple hours of speakers.)
"Hi, Mom, how are you?" I always begin.
"I don't like it here," Mom said.
Oh dear.
"You don't like it here?" I asked. "You liked Sunrise better?"
"Yes," she said. She seemed listless, not opening her eyes, perhaps preferring not to see her surroundings.
Okay, so much for my plan of carrying on and trying to make this skilled nursing thing work out.
1) Make this move to skilled nursing work out.
2) Take care of myself. Not go crazy worrying about Mom.
To take care of myself, I planned to spend all day today and tomorrow at the LA Times/UCLA Bookfair, listening to various authors and panelists speak about their books.
To make things work out, I drove to Country Villa to check on Mom before going to the book fair. (This meant missing a couple hours of speakers.)
"Hi, Mom, how are you?" I always begin.
"I don't like it here," Mom said.
Oh dear.
"You don't like it here?" I asked. "You liked Sunrise better?"
"Yes," she said. She seemed listless, not opening her eyes, perhaps preferring not to see her surroundings.
Okay, so much for my plan of carrying on and trying to make this skilled nursing thing work out.
Friday, April 27, 2007
Smelling the Lilacs
Today I'm in despair.
After hearing from Elisa what a terrible place this nursing home is, compared to others, I don't know what to do. I just finished having all Mom's furniture moved here and getting her settled here.
Should I hang the photos on the walls?
I woke early, anxious about having Mom in Country Villa.
Take care of yourself, Al-Anon says. So I went to an Al-Anon meeting at 7:35 am and then went for a jog on the beach.
I thoroughly enjoyed running on the sand in the fresh air, seeing the waves and mountains in the distance, but it was a warm morning. I took off my nylon jacket and tied it around my waist.
A few minutes later, perhaps while I was reaching to touch an anemone on the rocks of the breakwater, my cell phone fell out of the pocket of the jacket.
I noticed it as missing ten minutes later and retraced my steps, looking for it.
At first there was no trace of it, but on a second tracing of my route, it appeared gleaming on the sand, washed up by a wave.
I opened it up and dried to let it dry in the air, but the poor thing had died.
That meant a trip to the Cingular store before going to see Mom.
The clerk was very kind and soon had me on the phone to the insurance company to have it replaced.
"I apologize for your loss, ma'am," the insurance representative said.
Wow! He was apologizing to me! I liked it, even if he was reading from a script.
I left the store grateful that in 3-4 business days, a replacement would appear in the mail (not new but used/repaired).
I decided to stop at a 7/11 store to buy flowers for Mom.
And suddenly there they were: bunches of sweet-smelling lavender lilacs for sale, just like those on the big bush in my grandmother's home in Telluride when I was a child.
I knew Mom would love them, and so did I, even though the bunch cost $16.
Maybe everything would be all right, now that we had lilacs.
~ ~ ~
When I took the lilacs to Mom, she commented, "This is a pretty good place you picked out for me."
"Oh, you like it?" I asked, hopefully.
"Yeah, it's okay," she said. She sounded resigned.
I could tell she was thinking, If Anne picked out this place, it must be the best she could do.
I had never actually told her, "We are moving you to a new residence, skilled nursing." I had just hoped that having her same furniture, bedside lights, and other things would convince her that she was safe and in more or less the same place.
I was counting on Emily's insight, "The recliner is her home." I was hoping Mom wouldn't perceive much of a change in her environment.
But Emily had visited yesterday and had explained the move to her, so she now understood that we had made a choice and that she had been moved.
All I could do was go on with the rest of my day and hope for the best.
Maybe it would work out. Emily was a physical therapist before becoming a pastor, and she had approved Country Villa during her visit to Mom. It seemed to be about the best we could do.
After hearing from Elisa what a terrible place this nursing home is, compared to others, I don't know what to do. I just finished having all Mom's furniture moved here and getting her settled here.
Should I hang the photos on the walls?
I woke early, anxious about having Mom in Country Villa.
Take care of yourself, Al-Anon says. So I went to an Al-Anon meeting at 7:35 am and then went for a jog on the beach.
I thoroughly enjoyed running on the sand in the fresh air, seeing the waves and mountains in the distance, but it was a warm morning. I took off my nylon jacket and tied it around my waist.
A few minutes later, perhaps while I was reaching to touch an anemone on the rocks of the breakwater, my cell phone fell out of the pocket of the jacket.
I noticed it as missing ten minutes later and retraced my steps, looking for it.
At first there was no trace of it, but on a second tracing of my route, it appeared gleaming on the sand, washed up by a wave.
I opened it up and dried to let it dry in the air, but the poor thing had died.
That meant a trip to the Cingular store before going to see Mom.
The clerk was very kind and soon had me on the phone to the insurance company to have it replaced.
"I apologize for your loss, ma'am," the insurance representative said.
Wow! He was apologizing to me! I liked it, even if he was reading from a script.
I left the store grateful that in 3-4 business days, a replacement would appear in the mail (not new but used/repaired).
I decided to stop at a 7/11 store to buy flowers for Mom.
And suddenly there they were: bunches of sweet-smelling lavender lilacs for sale, just like those on the big bush in my grandmother's home in Telluride when I was a child.
I knew Mom would love them, and so did I, even though the bunch cost $16.
Maybe everything would be all right, now that we had lilacs.
~ ~ ~
When I took the lilacs to Mom, she commented, "This is a pretty good place you picked out for me."
"Oh, you like it?" I asked, hopefully.
"Yeah, it's okay," she said. She sounded resigned.
I could tell she was thinking, If Anne picked out this place, it must be the best she could do.
I had never actually told her, "We are moving you to a new residence, skilled nursing." I had just hoped that having her same furniture, bedside lights, and other things would convince her that she was safe and in more or less the same place.
I was counting on Emily's insight, "The recliner is her home." I was hoping Mom wouldn't perceive much of a change in her environment.
But Emily had visited yesterday and had explained the move to her, so she now understood that we had made a choice and that she had been moved.
All I could do was go on with the rest of my day and hope for the best.
Maybe it would work out. Emily was a physical therapist before becoming a pastor, and she had approved Country Villa during her visit to Mom. It seemed to be about the best we could do.
Thursday, April 26, 2007
Institutional Care
When I reached my brother Bill, a doctor at Ft. Lewis south of Seattle, he happened to be in Alaska, sent by the Army to give someone up there a vacation.
He told me he had spent several days doing colonoscopies in a fishing village on the Bering Strait. He was surprised at the amount of colon cancer he had seen in people just in their forties.
I poured out my stories about Mom to him.
"It's instutional care," he said. "Next--next--next. Assembly line."
He volunteered to take over care of Mom by hiring caregivers in his home near Tacoma--if his wife agrees to the plan. And after his last child leaves for college this coming September.
We'll see.
He told me he had spent several days doing colonoscopies in a fishing village on the Bering Strait. He was surprised at the amount of colon cancer he had seen in people just in their forties.
I poured out my stories about Mom to him.
"It's instutional care," he said. "Next--next--next. Assembly line."
He volunteered to take over care of Mom by hiring caregivers in his home near Tacoma--if his wife agrees to the plan. And after his last child leaves for college this coming September.
We'll see.
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