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.
Thursday, May 03, 2007
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.
Psych Cases at Country Villa
Nursing homes are not the peaceful, quiet places you might think they are, at least this one isn't.
There are psychiatric patients here, some geriatric, some not so geriatric.
"They have crazy man here," says Elisa. "From the hospital. They use restraint. At night, things happen. Only 4 CNAs, 1 LVN."
Another staff member confirmed that some patients come directly from UCLA Neuropsychiatric Hospital.
I don't mean to imply that Mom is not a psychiatric case; Emily and I have rescued her from being sent to a geriatric psych ward two or three times.
But she's so much older and quieter than some of the men here.
One man looks about my age and is in a wheelchair, perhaps with cerebral palsy or something. He pounds on tables and yells a lot. His elderly mother visits him in the room across the hall from Mom.
Another man, not so old and African-American, stumbles about in a big PVC cage.
"He pushed his dinner tray off," reported Nicole, a resident who is an aging small person. "I told them he was about to do it, but they ignored me. It was terrible. He has punched the CNAs."
At first I figured Mom might take an interest in all this excitement, but now I'm thinking the noise level is so high that if she ever cried for help, she'd never be heard, even though her room is right next to the nurses' station.
And I'm wondering if it is safe.
There are psychiatric patients here, some geriatric, some not so geriatric.
"They have crazy man here," says Elisa. "From the hospital. They use restraint. At night, things happen. Only 4 CNAs, 1 LVN."
Another staff member confirmed that some patients come directly from UCLA Neuropsychiatric Hospital.
I don't mean to imply that Mom is not a psychiatric case; Emily and I have rescued her from being sent to a geriatric psych ward two or three times.
But she's so much older and quieter than some of the men here.
One man looks about my age and is in a wheelchair, perhaps with cerebral palsy or something. He pounds on tables and yells a lot. His elderly mother visits him in the room across the hall from Mom.
Another man, not so old and African-American, stumbles about in a big PVC cage.
"He pushed his dinner tray off," reported Nicole, a resident who is an aging small person. "I told them he was about to do it, but they ignored me. It was terrible. He has punched the CNAs."
At first I figured Mom might take an interest in all this excitement, but now I'm thinking the noise level is so high that if she ever cried for help, she'd never be heard, even though her room is right next to the nurses' station.
And I'm wondering if it is safe.
Stage 1 Bedsore
After visiting the other nursing home with Elisa and visiting Country Villa (as she said hi to all her friends still working there), I decided to check Mom's behind just in case she might be developing a bedsore.
Sure enough, when I stood her up at the bar by the toilet, I saw a large red area maybe six inches in diameter, circling the lowest point of her spine. At the center of it, there was an even redder area, almost raw.
I went to report to the nurse in charge, and suddenly realized that Dr. Katherine Ward was sitting there at the nurses station.
"Oh hi, Dr. Ward. Good to see you. I just wanted to report to someone that my mother has a stage one bedsore." I said.
"I'm sorry to hear that," she said, motioning to a nurse to go check on this problem.
Poor Mom had to stand up again, and the diagnosis was confirmed.
"It's not Country Villa's fault," I reassured them. "She got it in the hospital because I told them not to turn her at night, because she was frightened of the two men who came to turn her every two hours. She has fears of rape when strange men come to her bed at night. But I should have had her turned anyway."
"I'll write it in her chart and make sure it gets treatment," Dr. Ward said.
I was pleased with the fast action. After putting A & D zinc oxide cream on it, I set Mom back into her recliner.
Soon Dr. Ward came in and did a physical exam on Mom--vitals, listening to her lungs, etc.
Seeing a doctor so easily is definitely a plus--but now I was more worried than ever about Elisa's prediction of poor perineal care.
I asked Binda when Mom would be getting a shower, and she agreed to do one right away.
She wheeled in a white cart that seemed to be made of PVC, undressed Mom, set her on the cart, and draped a sheet over her.
Mom was very sleepy but soon she was wheeled off.
When she returned ten minutes later, she was awake and angry.
"Did you have a nice shower?" I asked her.
"NO! Not the way they do 'em" she retorted.
"Oh dear," I moaned, thinking I should have watched the shower.
Then Binda dried Mom and asked me to put on the perineal cream while she held Mom up.
I did it but first realized that the area wasn't even dry... it all seemed so hopeless, this violent shower followed by inadequate drying and then slapping on the cream.
I fled at 7:30 pm, heading to an Al-Anon meeting. But before going in I called Emily and Bill to report to them.
I felt desperate, despairing.
What to do next?
Sure enough, when I stood her up at the bar by the toilet, I saw a large red area maybe six inches in diameter, circling the lowest point of her spine. At the center of it, there was an even redder area, almost raw.
I went to report to the nurse in charge, and suddenly realized that Dr. Katherine Ward was sitting there at the nurses station.
"Oh hi, Dr. Ward. Good to see you. I just wanted to report to someone that my mother has a stage one bedsore." I said.
"I'm sorry to hear that," she said, motioning to a nurse to go check on this problem.
Poor Mom had to stand up again, and the diagnosis was confirmed.
"It's not Country Villa's fault," I reassured them. "She got it in the hospital because I told them not to turn her at night, because she was frightened of the two men who came to turn her every two hours. She has fears of rape when strange men come to her bed at night. But I should have had her turned anyway."
"I'll write it in her chart and make sure it gets treatment," Dr. Ward said.
I was pleased with the fast action. After putting A & D zinc oxide cream on it, I set Mom back into her recliner.
Soon Dr. Ward came in and did a physical exam on Mom--vitals, listening to her lungs, etc.
Seeing a doctor so easily is definitely a plus--but now I was more worried than ever about Elisa's prediction of poor perineal care.
I asked Binda when Mom would be getting a shower, and she agreed to do one right away.
She wheeled in a white cart that seemed to be made of PVC, undressed Mom, set her on the cart, and draped a sheet over her.
Mom was very sleepy but soon she was wheeled off.
When she returned ten minutes later, she was awake and angry.
"Did you have a nice shower?" I asked her.
"NO! Not the way they do 'em" she retorted.
"Oh dear," I moaned, thinking I should have watched the shower.
Then Binda dried Mom and asked me to put on the perineal cream while she held Mom up.
I did it but first realized that the area wasn't even dry... it all seemed so hopeless, this violent shower followed by inadequate drying and then slapping on the cream.
I fled at 7:30 pm, heading to an Al-Anon meeting. But before going in I called Emily and Bill to report to them.
I felt desperate, despairing.
What to do next?
Smoke Gets In Your Eyes
After talking with Elisa, I emptied the remaining drawers at Ocean View Assisted Living to take to Country Villa.
I continued to explain to everyone who asked, "Evelyn will not be returning. I moved her to skilled nursing. Her needs are for nursing, not for pretty surroundings and good food, which you all provide so beautifully here."
I was okay until Rene, the Filipino caregiver for the old Scotsman John, began to play "Smoke Gets in Your Eyes" on the piano in the living room area.
I burst into tears.
Then I lectured myself: "She needs the nursing care. You can't possibly be sentimental about not returning to this place. Since when did this floor for Alzheimer's and other dementias look so good?"
I continued to explain to everyone who asked, "Evelyn will not be returning. I moved her to skilled nursing. Her needs are for nursing, not for pretty surroundings and good food, which you all provide so beautifully here."
I was okay until Rene, the Filipino caregiver for the old Scotsman John, began to play "Smoke Gets in Your Eyes" on the piano in the living room area.
I burst into tears.
Then I lectured myself: "She needs the nursing care. You can't possibly be sentimental about not returning to this place. Since when did this floor for Alzheimer's and other dementias look so good?"
Inside Information
I went to Ocean View Assisted Living about noon to pick up a few last things.
I encountered Elisa Torres, the am caregiver who dressed my mother five days a week there, put on her make-up and jewelry.
"Hi, Elisa," I began. "I'm glad I found you. I wanted to tell you that I moved my mother to a nursing home."
"Oh, yes, Miss Anne," she said. "But they tell me Country Villa?"
"Yes, Country Villa Mar Vista," I said.
"Oh no! Is not good place," she explained urgently. "I work there five years! They no change the diapers at night, no. I see bedsores this big, red." She held up her hands making a circle with a six-inch diameter.
"Oh dear," I moaned. "You mean the caregivers have too many patients to care for?"
"Yes, oh yes. The CNA, she has ten people, twenty at night."
"But they told me their ratios were 1/7 in the daytime, 1/5 in evening shift, 1/4 at night."
"They told you, yes, but they lie!" she laughed. "Another place, I show you, is good place, they take good care of your mother. I show you today, I go with you. What time you can go?"
"Anytime--but you worked from 6 am today, you get off at 2 pm. You can't go look at another place today."
"Yes, I go with you. I visit Evelyn and show you this other place."
"Okay, if you don't mind. How about 4 o'clock? I'd like to see a place that you say gives good care."
I set my mind to face this inside information, but it was devastating news. Just two days ago I had moved all Mom's furniture--and now I was going to second-guess that decision?
After Elisa left, I cried.
I encountered Elisa Torres, the am caregiver who dressed my mother five days a week there, put on her make-up and jewelry.
"Hi, Elisa," I began. "I'm glad I found you. I wanted to tell you that I moved my mother to a nursing home."
"Oh, yes, Miss Anne," she said. "But they tell me Country Villa?"
"Yes, Country Villa Mar Vista," I said.
"Oh no! Is not good place," she explained urgently. "I work there five years! They no change the diapers at night, no. I see bedsores this big, red." She held up her hands making a circle with a six-inch diameter.
"Oh dear," I moaned. "You mean the caregivers have too many patients to care for?"
"Yes, oh yes. The CNA, she has ten people, twenty at night."
"But they told me their ratios were 1/7 in the daytime, 1/5 in evening shift, 1/4 at night."
"They told you, yes, but they lie!" she laughed. "Another place, I show you, is good place, they take good care of your mother. I show you today, I go with you. What time you can go?"
"Anytime--but you worked from 6 am today, you get off at 2 pm. You can't go look at another place today."
"Yes, I go with you. I visit Evelyn and show you this other place."
"Okay, if you don't mind. How about 4 o'clock? I'd like to see a place that you say gives good care."
I set my mind to face this inside information, but it was devastating news. Just two days ago I had moved all Mom's furniture--and now I was going to second-guess that decision?
After Elisa left, I cried.
Wednesday, April 25, 2007
Nice People Trying Hard
After being awake past 2 am worrying about the problems in skilled nursing, I woke at 7 am, worried some more, and updated a schedule of care for Mom that I had written two years ago. It details her care needs throughout the day: how to dress her, when to put her in her recliner to rest, how to manage her false teeth, when she likes to go to bed, etc.
I made four copies and took them with me to my 10 am intake meeting with Linda Wesley, the director of social services; Ginny, the resident council coordinator, and Rosa Avila, the activities director.
Before the meeting, I went to check on Mom and found her sitting in the dining room eating breakfast without her teeth in her mouth.
I took the teeth to the dining room, discreetly put them in, and went to the nurses station to report the problem to Linda in a less-than-friendly voice.
Then we went to the intake meeting, where I apologized to Linda for my angry tone a few minutes earlier. Linda is a really kind person, small and slender with blue eyes and blonde kinky hair (a bit of African-American blood). What a hard job she has!
The meeting was lively and friendly.
It was performance art: I explained what Lewy Body Dementia is, discussed the sleepy day Mom had on Tuesday, outlined her care needs using the schedule I passed out.
I explained that her bathroom is not currently wheelchair accessible; it has no bar in an accessible place near the toilet for her to grab while someone removes her pants and nylons.
I described the horrible toileting scene I had witnessed the night before.
I set a boundary: because of my concerns about toileting and personal care such as teeth, I will research other care facilities such as Berkeley East and if necessary move her when the Medicare benefit ends after twenty days.
Rosa described her plans for Cinco de Mayo (to be held on May 19): a mariachi band in the patio area with a fiesta. It sounded great.
In addition to the presence of a doctor from Mom's geriatric practice, this place offers beauty: a lovely large shaded patio area adjoining the dining rooms and flowers, landscaping all around. All the residents are in ground-level rooms (safe exit in case of a fire or earthquake).
The meeting ended amicably, and I left feeling optimistic.
Within a half hour Francisco the handyman had removed the short bar in the corner behind the toilet and replaced it with a nice long bar that Mom could hold onto before and after being placed on the toilet. He also removed the huge industrial chrome toilet paper dispenser in order to have space for the bar (but didn't put in a normal toilet paper holder).
"That was so fast! Thank you," I told both him and Linda, who had ordered it.
I took Mom to the dining room for lunch and then pushed her around the block in the bright sunshine. The flowers in all the yards were beautiful. We picked a few marguerites and two white roses (abundant enough that it seemed okay).
I left at 4 pm, did a few errands, and returned at 6:15 to brush her teeth, toilet her, and change her to her nightgown.
After that I put chicken in the oven for John and me and rushed late to my 7:30 Al-Anon meeting, where I reported that I had moved my mother into skilled nursing.
I was feeling optimistic: this nursing home thing would work out if I watched the staff like a hawk.
Another Al-Anon member commiserated with me afterward about how hard it was to put his mother in skilled nursing for the last two months of her life.
I knew I had broken the Al-Anon rule, "Take care of yourself." I had not taken time to eat a proper breakfast, lunch, or dinner--just drinking milk and orange juice in the car while eating matzohs and oranges.
But the day ended with hope that everything would work out at Country Villa Mar Vista.
I made four copies and took them with me to my 10 am intake meeting with Linda Wesley, the director of social services; Ginny, the resident council coordinator, and Rosa Avila, the activities director.
Before the meeting, I went to check on Mom and found her sitting in the dining room eating breakfast without her teeth in her mouth.
I took the teeth to the dining room, discreetly put them in, and went to the nurses station to report the problem to Linda in a less-than-friendly voice.
Then we went to the intake meeting, where I apologized to Linda for my angry tone a few minutes earlier. Linda is a really kind person, small and slender with blue eyes and blonde kinky hair (a bit of African-American blood). What a hard job she has!
The meeting was lively and friendly.
It was performance art: I explained what Lewy Body Dementia is, discussed the sleepy day Mom had on Tuesday, outlined her care needs using the schedule I passed out.
I explained that her bathroom is not currently wheelchair accessible; it has no bar in an accessible place near the toilet for her to grab while someone removes her pants and nylons.
I described the horrible toileting scene I had witnessed the night before.
I set a boundary: because of my concerns about toileting and personal care such as teeth, I will research other care facilities such as Berkeley East and if necessary move her when the Medicare benefit ends after twenty days.
Rosa described her plans for Cinco de Mayo (to be held on May 19): a mariachi band in the patio area with a fiesta. It sounded great.
In addition to the presence of a doctor from Mom's geriatric practice, this place offers beauty: a lovely large shaded patio area adjoining the dining rooms and flowers, landscaping all around. All the residents are in ground-level rooms (safe exit in case of a fire or earthquake).
The meeting ended amicably, and I left feeling optimistic.
Within a half hour Francisco the handyman had removed the short bar in the corner behind the toilet and replaced it with a nice long bar that Mom could hold onto before and after being placed on the toilet. He also removed the huge industrial chrome toilet paper dispenser in order to have space for the bar (but didn't put in a normal toilet paper holder).
"That was so fast! Thank you," I told both him and Linda, who had ordered it.
I took Mom to the dining room for lunch and then pushed her around the block in the bright sunshine. The flowers in all the yards were beautiful. We picked a few marguerites and two white roses (abundant enough that it seemed okay).
I left at 4 pm, did a few errands, and returned at 6:15 to brush her teeth, toilet her, and change her to her nightgown.
After that I put chicken in the oven for John and me and rushed late to my 7:30 Al-Anon meeting, where I reported that I had moved my mother into skilled nursing.
I was feeling optimistic: this nursing home thing would work out if I watched the staff like a hawk.
Another Al-Anon member commiserated with me afterward about how hard it was to put his mother in skilled nursing for the last two months of her life.
I knew I had broken the Al-Anon rule, "Take care of yourself." I had not taken time to eat a proper breakfast, lunch, or dinner--just drinking milk and orange juice in the car while eating matzohs and oranges.
But the day ended with hope that everything would work out at Country Villa Mar Vista.
Mainstreaming
Country Villa is a challenging place for Mom.
After living on a floor dedicated to elderly dementia patients, she is now among a variety of people: elderly who have health problems but no loss of memory, younger persons who are disabled, psychiatric patients from age 50 to 90, and others with Alzheimer's or another form of dementia.
Is this mainstreaming good for her, as it is usually good for children with special needs?
Will it stimulate her mentally and challenge her to think and communicate better than on a memory-care floor?
Or is it too challenging for her?
And what about the many people here who are in full control of their mental abilities and have to put up with Mom at their table at meals? Is that fair to them?
My favorite person here is Phyllis Berg, a former public health nurse in her early eighties. She's blonde, blue-eyed, and graciously, originally from north of Minneapolis. She never married, has no children but has a nephew in the area.
She's here only because she has medical needs, such as pureed food, perhaps sometimes an IV.
Phyllis has been very kind and solicitous toward Mom.
"Why are you here?" I asked her, wondering why she couldn't be in an assisted living residence somewhere.
"For convenience," she said, not explaining further.
Perhaps she can't afford to pay for assisted living; this place is free to those with Medicaid and no financial resources.
I didn't ask her how she copes with sitting at meals with mindless people and lunatics.
After living on a floor dedicated to elderly dementia patients, she is now among a variety of people: elderly who have health problems but no loss of memory, younger persons who are disabled, psychiatric patients from age 50 to 90, and others with Alzheimer's or another form of dementia.
Is this mainstreaming good for her, as it is usually good for children with special needs?
Will it stimulate her mentally and challenge her to think and communicate better than on a memory-care floor?
Or is it too challenging for her?
And what about the many people here who are in full control of their mental abilities and have to put up with Mom at their table at meals? Is that fair to them?
My favorite person here is Phyllis Berg, a former public health nurse in her early eighties. She's blonde, blue-eyed, and graciously, originally from north of Minneapolis. She never married, has no children but has a nephew in the area.
She's here only because she has medical needs, such as pureed food, perhaps sometimes an IV.
Phyllis has been very kind and solicitous toward Mom.
"Why are you here?" I asked her, wondering why she couldn't be in an assisted living residence somewhere.
"For convenience," she said, not explaining further.
Perhaps she can't afford to pay for assisted living; this place is free to those with Medicaid and no financial resources.
I didn't ask her how she copes with sitting at meals with mindless people and lunatics.
Applying Al-Anon
Though I had been awake since 5:30 am, I lay awake after 1 am trying to figure out what to do.
Having just been to an Al-Anon meeting, I asked myself, "What would Al-Anon say to do?" and made a list.
1) Take care of yourself. (Well, I blew that one. Not able to relax and go to sleep.)
2) Turn the situation over to God. (Exactly how do I do this? Mom is not a teenager on drugs who has to learn to make her own decisions. I am responsible to make decisions about her care, with input from my siblings.)
3) Set a boundary. (Okay, I will tell Country Villa that I will move her to some other location, maybe Berkeley East, if these problems can't be solved.)
4) Let go. (Let her suffer and accept the reality of living in a nursing home? Don't try to take away her pain or solve her problem? Wrong! Forget that. But what if I cannot make her happy? Should I take her into my home? Should I hire private caregivers for her in skilled nursing?)
5) Feel your feelings. Sit with the pain. (This one I can do. It is so painful for me when she pours a cup of water on the table because it is not juice. When she is in pain and threatens her caregiver. When she reaches toward the medicine giver's face threateningly.)
~~
At 2:10 am the half moon shines in my bedroom window, not far from Jupiter. If I just focus on the moon, the stars, and the rolling hills along the San Andreas Fault, I'll be fine.
Eventually Mom will die. Then I will be free of this worry for ten or twenty years until my own decline toward death.
With any luck, those will be happy and productive years.
Having just been to an Al-Anon meeting, I asked myself, "What would Al-Anon say to do?" and made a list.
1) Take care of yourself. (Well, I blew that one. Not able to relax and go to sleep.)
2) Turn the situation over to God. (Exactly how do I do this? Mom is not a teenager on drugs who has to learn to make her own decisions. I am responsible to make decisions about her care, with input from my siblings.)
3) Set a boundary. (Okay, I will tell Country Villa that I will move her to some other location, maybe Berkeley East, if these problems can't be solved.)
4) Let go. (Let her suffer and accept the reality of living in a nursing home? Don't try to take away her pain or solve her problem? Wrong! Forget that. But what if I cannot make her happy? Should I take her into my home? Should I hire private caregivers for her in skilled nursing?)
5) Feel your feelings. Sit with the pain. (This one I can do. It is so painful for me when she pours a cup of water on the table because it is not juice. When she is in pain and threatens her caregiver. When she reaches toward the medicine giver's face threateningly.)
~~
At 2:10 am the half moon shines in my bedroom window, not far from Jupiter. If I just focus on the moon, the stars, and the rolling hills along the San Andreas Fault, I'll be fine.
Eventually Mom will die. Then I will be free of this worry for ten or twenty years until my own decline toward death.
With any luck, those will be happy and productive years.
Tuesday, April 24, 2007
A Huge Blunder?
Last night I wrote in my journal, "So she's now in Country Villa. Not that bad."
This morning I woke at 5:30 am, worrying about Mom. At 6:30 am I wrote in my journal:
What the hell have I done?
Skilled nursing?
How to shield her from this reality?
What will happen when she realizes her loss?
When they wheel her into the hall to sit in a row of living corpses to pass her time?
When she sits in the crowded dining room and looks around?
~~~
By midnight I was writing,
Horror. I have made a huge blunder, I think.
Earlier in the day I thought I had done well, accomplished something.
After visiting Mom briefly at Country Villa, I met the movers at 9 am at Ocean View Assisted Living.
By noon they were moving her furniture and boxes of belongings into her room at Country Villa. Fortunately, she was not present to see this; she was in the dining room.
The movers took her old bed and a bedside table to my house.
During the afternoon I set up Mom's room, put her clothes in the wardrobe, located her toothbrush, etc.
She was having a Lewy Body sleepy day and hadn't eaten any breakfast or lunch. At 3 pm I got her to eat a cookie and some milk and juice.
~~~
At 5 pm I was able to wake her up a bit. I took her to dinner, and she was ravenous.
The food didn't arrive until 5:20, so I gave her a can of V-8, then a cup of greenish horrible looking fake-lemonade. She drank it immediately and was reaching for the other cup, so I pushed it to her.
She took a drink from it but quickly spat it out.
"This is water!" she said. "I don't want water."
She poured it on the table. The attendant cleaned it up.
When her tray came, she ate well but at one point knocked over her cup of orange juice, which the attendant and I cleaned up.
I noticed that there was no one in the dining room to cut up the meat or to provide prompting like "Drink your juice." The attendant was only serving trays and picking them up, not interacting with the residents.
~~~
After dinner the toileting and care given by Mom's CNA, Christina Vasquez, was a disaster.
I explained Mom's care to Christina--remove false teeth, put them in cup with Efferdent, floss, brush--but Christina did not interject reassuring comments like, "Oh, I see. That's good."
Finally I asked, "When do you plan to brush her teeth? Now or at 9 pm when she goes to bed?"
Christina had a blank look on her face.
"Quando lavar los dientes?" I asked next in broken Spanish, and Christina answered immediately.
It's a big problem if Christina and I can't communicate, and even greater if Christina and Mom can't interact well.
~~~
Instead of toileting Mom myself, I decided to watch Christina do it. A kind supervisor, Linda, had assured me that the CNAs could do this, even in such a small space as this bathroom.
But Christina is a large person. She could hardly squeeze into the room around the wheelchair, which was between the sink and the wall, directly facing the toilet.
Once in, she had difficulty maneuvering Mom onto the toilet and standing her up again to put the disposable pants on.
One problem was that the bathroom did not have a bar located where Mom could hold onto it while her pants were being pulled off or pulled back on again. There was a short bar but it was behind the toilet to the right, where no one in a wheelchair could reach it.
Mom was expected to grab onto the edge of the sink and counter, about 8 inches wide, too big for her small, weak hands.
Another problem was that the SNF didn't have Depends, as I had been assured. What they had was refastenable "Attends," a loose padded rectangle with two tabs of tiny plastic tape on each side. After fastening the weak tabs earlier in the day, I noticed that one side popped open while I was fastening the other.
Note: Depends are fitted with elastic around the waist and legs; the tabs are Velcro and hold well.
As a result of all these factors, the toileting was difficult to watch. Mom had to stand there grabbing the sink for two minutes, and her feet got tangled and bent as she was placed back in her wheelchair.
She screeched in pain and then reached up to pull Christina's curly head of hair in retaliation, but Christina pulled back in time to avoid a yank.
In Mom's former residence, two people were often assigned to toilet Mom, but in this tiny bathroom two people wouldn't fit around the wheelchair.
~~~
Next we put Mom's nightgown on and took her to her recliner.
At one point I accidentally stepped on her foot, and she yelled, "Dumbbell!"
The medicine nurse came in to give Mom her evening pills, but Mom was upset and refused to open her mouth.
He and I cajoled her, trying to get her to take the spoon with applesauce and meds in it.
She took one spoonful and spat it out because the bitter medications had been crushed and mixed into the applesauce.
Then quickly she reached her bony fingers toward his face in a threatening menace.
Her eyes were rolling wildly as she clamped her mouth shut, refused more contaminated applesauce, and tried to defend herself against what she viewed as the second attack in a few minutes.
~~~
It's hard for me to see Mom in pain and combative, twice in one night.
At 8 pm I went late to an Al-Anon Parents meeting, sat there, and cried. Afterward I came home and reflected: This skilled nursing facility was supposed to be easier for me, not harder. The care was supposed to be better.
This morning I woke at 5:30 am, worrying about Mom. At 6:30 am I wrote in my journal:
What the hell have I done?
Skilled nursing?
How to shield her from this reality?
What will happen when she realizes her loss?
When they wheel her into the hall to sit in a row of living corpses to pass her time?
When she sits in the crowded dining room and looks around?
~~~
By midnight I was writing,
Horror. I have made a huge blunder, I think.
Earlier in the day I thought I had done well, accomplished something.
After visiting Mom briefly at Country Villa, I met the movers at 9 am at Ocean View Assisted Living.
By noon they were moving her furniture and boxes of belongings into her room at Country Villa. Fortunately, she was not present to see this; she was in the dining room.
The movers took her old bed and a bedside table to my house.
During the afternoon I set up Mom's room, put her clothes in the wardrobe, located her toothbrush, etc.
She was having a Lewy Body sleepy day and hadn't eaten any breakfast or lunch. At 3 pm I got her to eat a cookie and some milk and juice.
~~~
At 5 pm I was able to wake her up a bit. I took her to dinner, and she was ravenous.
The food didn't arrive until 5:20, so I gave her a can of V-8, then a cup of greenish horrible looking fake-lemonade. She drank it immediately and was reaching for the other cup, so I pushed it to her.
She took a drink from it but quickly spat it out.
"This is water!" she said. "I don't want water."
She poured it on the table. The attendant cleaned it up.
When her tray came, she ate well but at one point knocked over her cup of orange juice, which the attendant and I cleaned up.
I noticed that there was no one in the dining room to cut up the meat or to provide prompting like "Drink your juice." The attendant was only serving trays and picking them up, not interacting with the residents.
~~~
After dinner the toileting and care given by Mom's CNA, Christina Vasquez, was a disaster.
I explained Mom's care to Christina--remove false teeth, put them in cup with Efferdent, floss, brush--but Christina did not interject reassuring comments like, "Oh, I see. That's good."
Finally I asked, "When do you plan to brush her teeth? Now or at 9 pm when she goes to bed?"
Christina had a blank look on her face.
"Quando lavar los dientes?" I asked next in broken Spanish, and Christina answered immediately.
It's a big problem if Christina and I can't communicate, and even greater if Christina and Mom can't interact well.
~~~
Instead of toileting Mom myself, I decided to watch Christina do it. A kind supervisor, Linda, had assured me that the CNAs could do this, even in such a small space as this bathroom.
But Christina is a large person. She could hardly squeeze into the room around the wheelchair, which was between the sink and the wall, directly facing the toilet.
Once in, she had difficulty maneuvering Mom onto the toilet and standing her up again to put the disposable pants on.
One problem was that the bathroom did not have a bar located where Mom could hold onto it while her pants were being pulled off or pulled back on again. There was a short bar but it was behind the toilet to the right, where no one in a wheelchair could reach it.
Mom was expected to grab onto the edge of the sink and counter, about 8 inches wide, too big for her small, weak hands.
Another problem was that the SNF didn't have Depends, as I had been assured. What they had was refastenable "Attends," a loose padded rectangle with two tabs of tiny plastic tape on each side. After fastening the weak tabs earlier in the day, I noticed that one side popped open while I was fastening the other.
Note: Depends are fitted with elastic around the waist and legs; the tabs are Velcro and hold well.
As a result of all these factors, the toileting was difficult to watch. Mom had to stand there grabbing the sink for two minutes, and her feet got tangled and bent as she was placed back in her wheelchair.
She screeched in pain and then reached up to pull Christina's curly head of hair in retaliation, but Christina pulled back in time to avoid a yank.
In Mom's former residence, two people were often assigned to toilet Mom, but in this tiny bathroom two people wouldn't fit around the wheelchair.
~~~
Next we put Mom's nightgown on and took her to her recliner.
At one point I accidentally stepped on her foot, and she yelled, "Dumbbell!"
The medicine nurse came in to give Mom her evening pills, but Mom was upset and refused to open her mouth.
He and I cajoled her, trying to get her to take the spoon with applesauce and meds in it.
She took one spoonful and spat it out because the bitter medications had been crushed and mixed into the applesauce.
Then quickly she reached her bony fingers toward his face in a threatening menace.
Her eyes were rolling wildly as she clamped her mouth shut, refused more contaminated applesauce, and tried to defend herself against what she viewed as the second attack in a few minutes.
~~~
It's hard for me to see Mom in pain and combative, twice in one night.
At 8 pm I went late to an Al-Anon Parents meeting, sat there, and cried. Afterward I came home and reflected: This skilled nursing facility was supposed to be easier for me, not harder. The care was supposed to be better.
Farewell, Ocean View
I went to Ocean View Assisted Living at 9 am to pack up Mom's belongings and furniture and meet the movers who had agreed to deliver them all to Country Villa Mar Vista.
While directing the movers, I had to explain to each of some twenty Ocean View staff members that Evelyn would not be returning.
"She needs nursing care now," I explained. "She can get IVs there, blood tests, x-rays, catheterizations. It won't be as nice as Ocean View--the beautiful surroundings, the good food, the nice people. But she'll get the care she needs."
Everyone was polite but sad to see her go.
"We'll miss her," they said and meant it.
"If you change your mind, the room is still yours for thirty days," said Donna, the director.
I didn't know that at least one person predicted, "She'll be back in less than a month. You'll see."
While directing the movers, I had to explain to each of some twenty Ocean View staff members that Evelyn would not be returning.
"She needs nursing care now," I explained. "She can get IVs there, blood tests, x-rays, catheterizations. It won't be as nice as Ocean View--the beautiful surroundings, the good food, the nice people. But she'll get the care she needs."
Everyone was polite but sad to see her go.
"We'll miss her," they said and meant it.
"If you change your mind, the room is still yours for thirty days," said Donna, the director.
I didn't know that at least one person predicted, "She'll be back in less than a month. You'll see."
Monday, April 23, 2007
Hello, Country Villa
A kind woman named Elena introduced herself as Mom's CNA for the evening shift.
As she was putting Mom's nightgown over her shoulders, we talked.
"You're beautiful," Mom said to her. "You have beautiful eyes."
I was happy that Mom seemed to be bonding with her caregiver.
I trusted that everything was going to work out.
As she was putting Mom's nightgown over her shoulders, we talked.
"You're beautiful," Mom said to her. "You have beautiful eyes."
I was happy that Mom seemed to be bonding with her caregiver.
I trusted that everything was going to work out.
The End of the World
"Going to a nursing home is not the end of the world, "I kept saying to myself.
"It's okay to move Mom to a skilled nursing facility. She needs more care than she can get in assisted living. The time has come."
But actually, for most people, a SNF is the end of the world.
It's the place where they leave this world and pass to another.
I went to visit Mom in the hospital at 3 pm today and found a nurse at Mom's bedside telling her, "You're being discharged today. We've ordered an ambulance to take you."
"Shhhh!" I warned the nurse. "Don't let her hear this."
I tried to calm Mom down, but she was extremely agitated, her wide-open eyes rolling from left to right, up and down in terror.
"There's been a murder!" she said, looking around the room expecting to see the perpetrator. "They murdered someone!"
I realized her roommate had her television on to news of the Virginia Tech shootings a week earlier.
"It's not here," I tried to explain. "It's far far away."
"Yes, it's here. They tried to murder her," Mom continued frantically.
Meanwhile 5-6 doctors were on the other side of the curtain, trying to explain to Mom's roommate (who had been waiting for surgery 4-5 days) why she hadn't been taken in today to remove the cancer in her colon.
"Your heart rate and blood pressure aren't good today," they were saying. "We can't send you to surgery."
In the noise and confusion it was impossible to calm Mom down.
I wished someone would hand out some Xanax tablets for one and all
Instead I took the nurse out and asked her, "Are you really discharging my mother today? When were you going to tell me? My cell phone has been with me and turned on, but no one notified me."
"I thought someone had called you," she said. "We called Country Villa Mar Vista, and they said it was fine to send her over. You can talk to the discharge planner about it."
"Okay, that's fine," I said. "That's good if you discharge her, but she's not going in an ambulance. That would only upset her further. I will drive her to Country Villa."
Next: packing up all her stuff, dressing her, getting her and stuff in the car, driving to the SNF.
Along the way we stopped at Carl's Jr. and I bought her French fries, a hamburger, and a strawberry milkshake.
She calmed down, but I felt like Arnold Benedict.
If Mom had more savvy, she would know that a sumptuous fast-food meal was a way of buying her off, preparing her for bad news.
Country Villa Mar Vista.
We arrived. I wheeled her in, carried her stuff in.
Within a couple hours she was in her nightgown in the new bed, new room, new residence.
Very confused.
I drove home feeling the worst was over.
I had done the right thing.
"It's okay to move Mom to a skilled nursing facility. She needs more care than she can get in assisted living. The time has come."
But actually, for most people, a SNF is the end of the world.
It's the place where they leave this world and pass to another.
I went to visit Mom in the hospital at 3 pm today and found a nurse at Mom's bedside telling her, "You're being discharged today. We've ordered an ambulance to take you."
"Shhhh!" I warned the nurse. "Don't let her hear this."
I tried to calm Mom down, but she was extremely agitated, her wide-open eyes rolling from left to right, up and down in terror.
"There's been a murder!" she said, looking around the room expecting to see the perpetrator. "They murdered someone!"
I realized her roommate had her television on to news of the Virginia Tech shootings a week earlier.
"It's not here," I tried to explain. "It's far far away."
"Yes, it's here. They tried to murder her," Mom continued frantically.
Meanwhile 5-6 doctors were on the other side of the curtain, trying to explain to Mom's roommate (who had been waiting for surgery 4-5 days) why she hadn't been taken in today to remove the cancer in her colon.
"Your heart rate and blood pressure aren't good today," they were saying. "We can't send you to surgery."
In the noise and confusion it was impossible to calm Mom down.
I wished someone would hand out some Xanax tablets for one and all
Instead I took the nurse out and asked her, "Are you really discharging my mother today? When were you going to tell me? My cell phone has been with me and turned on, but no one notified me."
"I thought someone had called you," she said. "We called Country Villa Mar Vista, and they said it was fine to send her over. You can talk to the discharge planner about it."
"Okay, that's fine," I said. "That's good if you discharge her, but she's not going in an ambulance. That would only upset her further. I will drive her to Country Villa."
Next: packing up all her stuff, dressing her, getting her and stuff in the car, driving to the SNF.
Along the way we stopped at Carl's Jr. and I bought her French fries, a hamburger, and a strawberry milkshake.
She calmed down, but I felt like Arnold Benedict.
If Mom had more savvy, she would know that a sumptuous fast-food meal was a way of buying her off, preparing her for bad news.
Country Villa Mar Vista.
We arrived. I wheeled her in, carried her stuff in.
Within a couple hours she was in her nightgown in the new bed, new room, new residence.
Very confused.
I drove home feeling the worst was over.
I had done the right thing.
Friday, April 20, 2007
Woman Without a Country
"I'm a woman without a country," Mom said last night at 10:30 pm. She had been in the ER from noon to 5 pm, then arrived in a hospital room, but she wasn't sure where she was.
Someplace unfamiliar. Almost a different country.
"They've closed up my room and locked it," she continued. "They can't sell my room! Don't let them sell my room!"
Her eyes searched her surroundings, full of fear, not seeing anything familiar.
Her assessment was uncanny in its accuracy. In fact, I had given notice in her current residence that she would be leaving after her hospitalization, moving to a skilled nursing facility. I had sold her room.
But we could cancel our plans to move her. We could keep her in assisted living, memory care.
The debate continues, the lists of pros and cons.
Today Emily commented, "The chair is really her home."
Mom lives in her big recliner with the push button that electrically sits her up or reclines her. We can take the recliner, television, desk, and other furniture and framed pictures to her next room.
I visited Country Villa again to gather information that will help in the decision. See pros and cons below.
One issue is whether to continue to subject her to continuous medical procedures. She endured two catheterizations yesterday, 6-7 hours apart, as well as an ultrasound of her kidneys, a blood draw, and the setting up of an IV. There's a lot to be said for just returning her to assisted living and putting her on hospice--no further medical interventions except meds.
The decision is ours, not Mom's. She's can't think clearly enough to really decide though she makes it clear that she wants "her room." We could either leave her in her current residence or recreate her room at Country Villa (a process we have done several times before over the last six years).
Central issue: Do we place her among others at her level, or keep her in a higher end place where she is closer to the bottom of the group?
Here's my list of the pros and cons.
Factors favoring Country Villa
Room 16 is great--roomy and pink decorated, nice window looking out on grass, flowers.
Would hold all her current furniture.
Room is right next to the nurses' station--attention.
Hustle and bustle of the place may interest Mom--59 residents (max = 68).
Nice neighborhood around the place to push her in wheelchair.
All residents on ground floor, access to patio and grass, flowers, sky. Safe in case of fire or earthquake.
Small round dining tables, eating in groups of four with consistent group.
IVs allowed. All catheters, blood draws, chest x-rays on site. One full-time PT on site.
May not need private caregivers after moving to SNF. (But we may cancel them even if she stays in her current residence, to conserve her dwindling financial resources.)
Factors against Country Villa
Her bathroom is too small.
No convenient bar for her to hold onto while her Depends are being removed.
(The bar that is there is going to be hard for her to reach.)
All 60 residents share two shower rooms. Most get 2 showers per week, bed sponge baths on other days. (Flexibility of up to 4 or so showers per week if needed.)
Many residents are in wheelchairs, out-of-it looking. Sitting in the crowded room full of wheelchairs would be depressing for Mom.
More people, density than at Sunrise (28 people on 3rd floor Sunrise in comparable amount of space to main floor of Country Villa).
Dining area not as nice... but looks out on patio and grass.
Much smaller closet--a portable wardrobe, not walk-in.
Food probably not as good.
What would you do? Eventually we will all be making decisions like these, either for others or for ourselves.
Someplace unfamiliar. Almost a different country.
"They've closed up my room and locked it," she continued. "They can't sell my room! Don't let them sell my room!"
Her eyes searched her surroundings, full of fear, not seeing anything familiar.
Her assessment was uncanny in its accuracy. In fact, I had given notice in her current residence that she would be leaving after her hospitalization, moving to a skilled nursing facility. I had sold her room.
But we could cancel our plans to move her. We could keep her in assisted living, memory care.
The debate continues, the lists of pros and cons.
Today Emily commented, "The chair is really her home."
Mom lives in her big recliner with the push button that electrically sits her up or reclines her. We can take the recliner, television, desk, and other furniture and framed pictures to her next room.
I visited Country Villa again to gather information that will help in the decision. See pros and cons below.
One issue is whether to continue to subject her to continuous medical procedures. She endured two catheterizations yesterday, 6-7 hours apart, as well as an ultrasound of her kidneys, a blood draw, and the setting up of an IV. There's a lot to be said for just returning her to assisted living and putting her on hospice--no further medical interventions except meds.
The decision is ours, not Mom's. She's can't think clearly enough to really decide though she makes it clear that she wants "her room." We could either leave her in her current residence or recreate her room at Country Villa (a process we have done several times before over the last six years).
Central issue: Do we place her among others at her level, or keep her in a higher end place where she is closer to the bottom of the group?
Here's my list of the pros and cons.
Factors favoring Country Villa
Room 16 is great--roomy and pink decorated, nice window looking out on grass, flowers.
Would hold all her current furniture.
Room is right next to the nurses' station--attention.
Hustle and bustle of the place may interest Mom--59 residents (max = 68).
Nice neighborhood around the place to push her in wheelchair.
All residents on ground floor, access to patio and grass, flowers, sky. Safe in case of fire or earthquake.
Small round dining tables, eating in groups of four with consistent group.
IVs allowed. All catheters, blood draws, chest x-rays on site. One full-time PT on site.
May not need private caregivers after moving to SNF. (But we may cancel them even if she stays in her current residence, to conserve her dwindling financial resources.)
Factors against Country Villa
Her bathroom is too small.
No convenient bar for her to hold onto while her Depends are being removed.
(The bar that is there is going to be hard for her to reach.)
All 60 residents share two shower rooms. Most get 2 showers per week, bed sponge baths on other days. (Flexibility of up to 4 or so showers per week if needed.)
Many residents are in wheelchairs, out-of-it looking. Sitting in the crowded room full of wheelchairs would be depressing for Mom.
More people, density than at Sunrise (28 people on 3rd floor Sunrise in comparable amount of space to main floor of Country Villa).
Dining area not as nice... but looks out on patio and grass.
Much smaller closet--a portable wardrobe, not walk-in.
Food probably not as good.
What would you do? Eventually we will all be making decisions like these, either for others or for ourselves.
Thursday, April 19, 2007
Day of Decisions
Mom has already figured out what's up.
She's saying, "My room is all closed up and locked. Don't let them sell it. I just want to get back to my room."
So I don't know if I can stick to my resolve, agreed upon with Emily and Jim this morning, to move her from Ocean View Assisted Living to a skilled nursing facility (SNF) after the hospitalization that began today.
But anyway, here's a summary of the day.
Dr. Sonja Rosen's news this morning:
1) Mom's kidneys are back in the normal range. 1.3 (not 1.5 as they were Monday)
2) But "she has a really big bladder infection."
Bacteria = Providentia Stuartii
3) Her options
a. Intramuscular shots, one per day, 7 days (painful)
b. IV with antibiotic specific to this bacteria 20 min. per day, 7 days
(no medication by mouth is available for this bacteria)
Note: Her assisted living is not licensed for IVs, will not allow them. So IV has to be done in hospital.
Emily spent the day taking her to ER to get her admitted to hospital. Mom got to her room about 5 pm.
On Monday we discussed another option at this point: hospice.
She's tired, "has humored us" as Emily puts it by putting up with the "Reminiscence Neighborhood" and with meds/blood draws/catheters/x-rays.
But she often says, "I want to die, to go to heaven," and lately has more often been refusing meals and meds.
Her refusal could be just her serious bladder infection which has been continuing at least since April 5, perhaps longer.
Or it could be that she is really ready to leave.
Dr. Rosen says she has enough criteria to qualify for hospice.
1) Weight loss (she was 106 with heavy shoes on Monday).
2) Behavioral changes (or is this just the bladder infection?)
3) Progression of her disease, Lewy Body Dementia.
She says you place a patient on hospice to focus on comfort, not cure, and that you generally expect death within six months. But if she lives longer, you can extend it.
Dr. Rosen is available for a family phone consultation if we want to schedule one.
At any rate, a private room is available at Country Villa, a skilled nursing facility (SNF) Emily and I have visited. It's $233 per day including medical services. (Her current residence is $207 per day but fewer medical services.) A shared room (2 beds) in the SNF is $192 per day.
In addition to her current $207 per day, we are paying $112 per day for a private caregiver for 8 hrs. I would discontinue this at Country Villa after maybe a month or two of transition time. Even if she stayed in her current residence, we probably would give up private caregivers within 6 mo. or so to conserve her funds. She has about $100,000 at this point, enough to last one year at her current level of care/expense.
I think the reality is that she is declining and needing more nursing care than her current residence can provide (catheters, blood draws, chest x-rays, physical therapy, etc.). It does a great job of providing comfortable, cheery surroundings; good food; kind people.
But she is getting less interested in the food, confuses the people, seems unaware of the surroundings (until they are withdrawn--now she just wants her room back).
Her assisted living residence would like to keep her while she is in hospice if/when we would choose hospice. Four other people on her floor are on hospice, have been for several months.
Today after consulting with Emily and Jim, I told Country Villa that we definitely want that single room, and I gave Ocean View Assisted Living the required 30-days notice that she is leaving. They said, "You can change your mind during that 30 days." We could change our mind if we decide that her staying in her familiar surroundings is the highest priority. I reached Bill tonight by phone and he understood the reasons we are inclined to choose Country Villa (but also values her comfort level where she is).
Mom was given an ultrasound of the kidneys at 10:30 pm tonight and then at 11 pm was given another catheterization so that a more detailed urinalysis could be done. I hope she didn't get a catheterization this afternoon in the ER. She had one on Wednesday, 4/18, (yesterday) and on April 5.
The route of hospital/SNF means bothering her a lot for medical tests and treatment.
The route of assisted-living/hospice is less invasive, more comfort-oriented.
Hospice could also be done at the SNF if medical intervention becomes more trouble to her than it's worth.
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.
She is very dependent on having a person with her, especially a familiar face. She's very fearful, filled with hallucinations and delusions when alone. Tonight I cancelled having her turned over by two men every 1 1/2 hours because her fear factor of two men in the middle of the night is so high. She was telling me about the "two bad men" when I arrived at 9:30 pm.
Sorry for the plain, confused style of this blog entry--it's copied from an email without any effort to make it interesting or readable. Too tired for that today!
She's saying, "My room is all closed up and locked. Don't let them sell it. I just want to get back to my room."
So I don't know if I can stick to my resolve, agreed upon with Emily and Jim this morning, to move her from Ocean View Assisted Living to a skilled nursing facility (SNF) after the hospitalization that began today.
But anyway, here's a summary of the day.
Dr. Sonja Rosen's news this morning:
1) Mom's kidneys are back in the normal range. 1.3 (not 1.5 as they were Monday)
2) But "she has a really big bladder infection."
Bacteria = Providentia Stuartii
3) Her options
a. Intramuscular shots, one per day, 7 days (painful)
b. IV with antibiotic specific to this bacteria 20 min. per day, 7 days
(no medication by mouth is available for this bacteria)
Note: Her assisted living is not licensed for IVs, will not allow them. So IV has to be done in hospital.
Emily spent the day taking her to ER to get her admitted to hospital. Mom got to her room about 5 pm.
On Monday we discussed another option at this point: hospice.
She's tired, "has humored us" as Emily puts it by putting up with the "Reminiscence Neighborhood" and with meds/blood draws/catheters/x-rays.
But she often says, "I want to die, to go to heaven," and lately has more often been refusing meals and meds.
Her refusal could be just her serious bladder infection which has been continuing at least since April 5, perhaps longer.
Or it could be that she is really ready to leave.
Dr. Rosen says she has enough criteria to qualify for hospice.
1) Weight loss (she was 106 with heavy shoes on Monday).
2) Behavioral changes (or is this just the bladder infection?)
3) Progression of her disease, Lewy Body Dementia.
She says you place a patient on hospice to focus on comfort, not cure, and that you generally expect death within six months. But if she lives longer, you can extend it.
Dr. Rosen is available for a family phone consultation if we want to schedule one.
At any rate, a private room is available at Country Villa, a skilled nursing facility (SNF) Emily and I have visited. It's $233 per day including medical services. (Her current residence is $207 per day but fewer medical services.) A shared room (2 beds) in the SNF is $192 per day.
In addition to her current $207 per day, we are paying $112 per day for a private caregiver for 8 hrs. I would discontinue this at Country Villa after maybe a month or two of transition time. Even if she stayed in her current residence, we probably would give up private caregivers within 6 mo. or so to conserve her funds. She has about $100,000 at this point, enough to last one year at her current level of care/expense.
I think the reality is that she is declining and needing more nursing care than her current residence can provide (catheters, blood draws, chest x-rays, physical therapy, etc.). It does a great job of providing comfortable, cheery surroundings; good food; kind people.
But she is getting less interested in the food, confuses the people, seems unaware of the surroundings (until they are withdrawn--now she just wants her room back).
Her assisted living residence would like to keep her while she is in hospice if/when we would choose hospice. Four other people on her floor are on hospice, have been for several months.
Today after consulting with Emily and Jim, I told Country Villa that we definitely want that single room, and I gave Ocean View Assisted Living the required 30-days notice that she is leaving. They said, "You can change your mind during that 30 days." We could change our mind if we decide that her staying in her familiar surroundings is the highest priority. I reached Bill tonight by phone and he understood the reasons we are inclined to choose Country Villa (but also values her comfort level where she is).
Mom was given an ultrasound of the kidneys at 10:30 pm tonight and then at 11 pm was given another catheterization so that a more detailed urinalysis could be done. I hope she didn't get a catheterization this afternoon in the ER. She had one on Wednesday, 4/18, (yesterday) and on April 5.
The route of hospital/SNF means bothering her a lot for medical tests and treatment.
The route of assisted-living/hospice is less invasive, more comfort-oriented.
Hospice could also be done at the SNF if medical intervention becomes more trouble to her than it's worth.
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.
She is very dependent on having a person with her, especially a familiar face. She's very fearful, filled with hallucinations and delusions when alone. Tonight I cancelled having her turned over by two men every 1 1/2 hours because her fear factor of two men in the middle of the night is so high. She was telling me about the "two bad men" when I arrived at 9:30 pm.
Sorry for the plain, confused style of this blog entry--it's copied from an email without any effort to make it interesting or readable. Too tired for that today!
Wednesday, April 18, 2007
Izzy's Deli
Emerging from the dentist's office at 3 pm after three hours of medical ordeals, Mom needed both food and rest.
Any sane person would have taken her back to her residence or put her in the car and headed to some sort of fast food, but I turned her wheelchair into the crisp wind and pushed her one block to Izzy's Deli.
"It's too cold! You're trying to kill me!" she cried.
"Well, do you want French fries or not?" I asked impatiently.
"I want them," she answered.
"Okay then," I said, gritting my teeth.
"It's a green light," she said as we waited for traffic at Wilshire Blvd.
True, the direction she was turned had a green light, but the direction we needed to go was red.
At an intersection it's impossible to face a wheelchair in the direction you actually intend to walk because the downramps are placed at the point of the corner as if you were going to walk in an X pattern from one corner to the opposite corner.
The best you can do is:
1) Keep the wheelchair poised facing in a direction you don't actually intend to go.
2) Then swoop down the ramp when the light changes.
3) Once at pavement level quickly turn the chair into the actual crosswalk you intend to use.
This can be a little confusing for a dementia patient, especially one who likes to be in control and tell you where and when to push the chair.
Once we crossed the four-lane street, the front doors of Izzy's Deli shone like a stream of light breaking through an overcast sky.
"Come all ye who labor and are heavy laden," the plush booths and graciously welcoming tables seemed to be saying.
After pushing Mom up to one table, I sank into a soft vinyl bench.
Soon we each had a mug of hot tea diluted with six or so packets of non-dairy creamer.
We ordered and soon a turkey sandwich appeared for her along with a Reuben sandwich for me, each accompanied by a mountain of French fries and a bowl of coleslaw.
Mom did not fall asleep. She stirred her tea with her spoon, repeatedly lifted the heavy black mug with the words Izzy's ~ Deli to the Stars, and somehow got it back on the table, never spilling it. Several times she squeezed the chunk of lemon with determination, curdling the cream in her tea.
She attacked the sandwich with her fingers, putting slices of turkey in her mouth, then bread, then lettuce and more turkey. She managed to get most of the coleslaw onto her fork and into her mouth. She relished the dill pickle and the fries.
We ate in relieved silence, surrounded by the friendly noise of other conversations and the clink of things in the kitchen.
Soothing music played: "Dream a little dream of me..." and "Just call me angel of the morning, baby...."
Angel of the afternoon was the kind Latino waiter.
Above the tables were two enormous candelabra, each with twenty candle-like bulbs.
It was altogether heavenly, the best $30 I ever spent.
At 4:15 I was waiting for her to be finished, but she was using her spoon to lift a four-inch pickle, dripping with the coleslaw sauce, to her mouth. Then she drank some more tea.
"A good lunch, wasn't it!" I commented.
"Yeah, it was real good," she answered.
At about 4:30 we tipped $6 and wheeled back to her residence in the cold wind.
Not a bad ending for a day that could have ended with hospitalization.
Any sane person would have taken her back to her residence or put her in the car and headed to some sort of fast food, but I turned her wheelchair into the crisp wind and pushed her one block to Izzy's Deli.
"It's too cold! You're trying to kill me!" she cried.
"Well, do you want French fries or not?" I asked impatiently.
"I want them," she answered.
"Okay then," I said, gritting my teeth.
"It's a green light," she said as we waited for traffic at Wilshire Blvd.
True, the direction she was turned had a green light, but the direction we needed to go was red.
At an intersection it's impossible to face a wheelchair in the direction you actually intend to walk because the downramps are placed at the point of the corner as if you were going to walk in an X pattern from one corner to the opposite corner.
The best you can do is:
1) Keep the wheelchair poised facing in a direction you don't actually intend to go.
2) Then swoop down the ramp when the light changes.
3) Once at pavement level quickly turn the chair into the actual crosswalk you intend to use.
This can be a little confusing for a dementia patient, especially one who likes to be in control and tell you where and when to push the chair.
Once we crossed the four-lane street, the front doors of Izzy's Deli shone like a stream of light breaking through an overcast sky.
"Come all ye who labor and are heavy laden," the plush booths and graciously welcoming tables seemed to be saying.
After pushing Mom up to one table, I sank into a soft vinyl bench.
Soon we each had a mug of hot tea diluted with six or so packets of non-dairy creamer.
We ordered and soon a turkey sandwich appeared for her along with a Reuben sandwich for me, each accompanied by a mountain of French fries and a bowl of coleslaw.
Mom did not fall asleep. She stirred her tea with her spoon, repeatedly lifted the heavy black mug with the words Izzy's ~ Deli to the Stars, and somehow got it back on the table, never spilling it. Several times she squeezed the chunk of lemon with determination, curdling the cream in her tea.
She attacked the sandwich with her fingers, putting slices of turkey in her mouth, then bread, then lettuce and more turkey. She managed to get most of the coleslaw onto her fork and into her mouth. She relished the dill pickle and the fries.
We ate in relieved silence, surrounded by the friendly noise of other conversations and the clink of things in the kitchen.
Soothing music played: "Dream a little dream of me..." and "Just call me angel of the morning, baby...."
Angel of the afternoon was the kind Latino waiter.
Above the tables were two enormous candelabra, each with twenty candle-like bulbs.
It was altogether heavenly, the best $30 I ever spent.
At 4:15 I was waiting for her to be finished, but she was using her spoon to lift a four-inch pickle, dripping with the coleslaw sauce, to her mouth. Then she drank some more tea.
"A good lunch, wasn't it!" I commented.
"Yeah, it was real good," she answered.
At about 4:30 we tipped $6 and wheeled back to her residence in the cold wind.
Not a bad ending for a day that could have ended with hospitalization.
Torture Again
I woke with the doctor's words yesterday echoing in my mind: mild kidney failure.
I had promised to take Mom in this morning for a catheterization and more blood tests, and she also had an appointment for dental cleaning at 2 pm.
Not a fun day. I procrastinated as long as possible, leaving the house about 11:15 am. From the car I called to ask if I needed an appointment for the catheterization.
"Your appointment was for 11 am," the receptionist reported.
Whoops. Dr. Rosen must have made that appointment. She had also said. "If her creatinin level is still elevated, we may have to hospitalize her."
If that happened, I would need the POA papers and maybe the detailed answer to the question, "Is she DNR?"
A month ago when my brother was in town, he and I had revised an earlier statement, and I had still not typed up the results.
I turned the car around, went back to the house, and typed up the specific instructions:
Yes to chemical measures and IV.
No to cardioversion and intubation.
No to chest compressions and feeding by tube.
Yes to converting Atrial Fibrillation to Normal Sinus Rhythm (NSR) for two weeks if needed.
Then I set out again, humming my usual tune for a day of medical adventures with Mom:
We're off to see the wizard, the wonderful wizard of Oz.
Because, because, because, because, because
Because of the wonderful things he does!
La la la la, la la!
When I arrived at 11:45 am, Mom was in her wheelchair in the dining room about to have lunch. As I snatched her away, a caregiver reported, "She went on the scenic drive this morning! We just got back."
"Oh, good," I smiled.
So all my procrastination had not mattered: I could not have taken her to the doctor at 11 am anyway because she had been packed off on a tour around town before 10 am. I should have called at 8 am and warned them not to take her anywhere because I needed to take her in for tests.
"How are you today, Mom?" I asked her automatically. I ask this question each time I arrive.
"I'm sick!" she answered.
An unusual answer, I thought to myself. If she recognizes that she doesn't feel well, perhaps this day will end with a hospitalization.
After a non-productive trip to the toilet, I wheeled her out wondering if she would ever be back--because my plan after her next hospitalization is to move her to a skilled nursing facility.
"We're not going to Japan," she announced as we drove to the UCLA Medical Center.
"Okay," I said. "It's probably not a good idea if you feel sick."
"We'll stay in Colorado. That's what we'll do," she said.
I avoided answering that one.
We arrived at the medical center at 12:30 pm, during the nurses' lunch hour, and had to wait until 1 pm to have the catheterization done and the blood samples taken to check her creatinin levels.
When the time came, I hoisted her onto the examining table and peeled off her slacks, nylons, and Depend. She voficerously protested each movement and screamed when the catheter was put in and taken out. For her, in her dementia, a catheterization is a rape. No amount of explaining makes it okay.
Her abdomen seemed too large while she was lying down. I wondered if, as Dr. Rosen suspected, she might have crystals blocking her kidneys from emptying.
Finally it was over and her Depend, nylongs, slacks, and shoes were replaced.
"You took off my black shoes!" she vented. "Why did you take off my shoes?"
"To take off your nylons," I replied, hopelessly drawn into explanation that wasn't going to help.
Then we went to the lab for her blood to be drawn.
"When we're done, we'll go get some French fries," I promised her.
She unleashed vitriol on the phlebotomist but finally that too was done.
Finally it was 2 pm and we were wheeling toward the elevators in the parking garage, but I had to call the dentist and report that we would be late for her tooth cleaning.
Any sane person would have cancelled the tooth cleaning, given her agitation and exhaustion. She can only put up with so much in any one day, but I pressed on, hoping to get it all done and not to have to interrupt my work another day for a trip to the dentist.
"You're a traitor, you are," she hissed at me as we drove down Wilshire Avenue.
I hadn't even told her we still had a dentist appointment to go to.
We arrived about 2:23 pm and the kind dental assistant got to work as soon as I got her moved from her wheelchair to the dental chair.
(I never said "And now, Mom, we will go to the dentist." It was easier to just bring her in without ever making the visit a topic of argument.)
"I'm sorry I didn't have time to brush her teeth before coming," I admitted. "And I guess they didn't brush her teeth after breakfast."
"You need to keep after them about that," she advised.
Her first step was to suction bits of food out of Mom's mouth, from breakfast I guess. Also there was food in her gums and between her teeth.
Meanwhile, Mom was coughing deeply and filling her mouth with clear phlegm, which the hygienist suctioned out.
If an audio recording had been made of the 15 minutes she spent in the chair, anyone listening to it would be convinced that the Geneva Conventions against torture had been violated.
When her cries formed words, they were something like "Stop! Get out! Leave me alone."
"I'm sorry it's hurting you," the hygienist answered.
"Baloney, you don't give a damn," Mom managed to say through the implements in her mouth.
"We want you to have nice clean teeth so you can SMILE!" said the hygienist.
I reflected that Mom is on the brink of either moving to skilled nursing or being put on hospice; she doesn't have a lot to smile about and knows it. But of course, dentists want people to smile.
"What's the use of trying?" Mom said as the appointment ended. "She won't ever do a thing I say. She's a mess, a baby. 'Pee and pee and pee again,' she says. Get me out of here."
"Oh, my mother is speaking about her caregiver," I explained. "We've been trying to get a urine sample for a couple of days, and she is tired of trying. Mom, we have to wait for the dentist to take a look at you."
"Damn fools! They don't know anything anyway," she said. "Nurses know a lot more than they do."
She was talking about doctors, of course. I know because I've been hearing this point since I was ten years old.
Somehow the dentist managed to put his hands in and out of her mouth without being bitten or scratched. I held her hands just in case for the few minutes he needed.
He commented about the Telluride license plate I keep on the back of her wheelchair, and Mom yelled, "To-hell-U-ride! That's what we called it."
Usually it's a humorous comment, but this time it came out like a curse.
"No services wanted, just remember!" she repeated loudly as we left the dental office.
Yeah, I got the message: no catheterizations, no blood draws, no tooth cleaning.
She's sick and tired of all this medical care, and so am I.
I had promised to take Mom in this morning for a catheterization and more blood tests, and she also had an appointment for dental cleaning at 2 pm.
Not a fun day. I procrastinated as long as possible, leaving the house about 11:15 am. From the car I called to ask if I needed an appointment for the catheterization.
"Your appointment was for 11 am," the receptionist reported.
Whoops. Dr. Rosen must have made that appointment. She had also said. "If her creatinin level is still elevated, we may have to hospitalize her."
If that happened, I would need the POA papers and maybe the detailed answer to the question, "Is she DNR?"
A month ago when my brother was in town, he and I had revised an earlier statement, and I had still not typed up the results.
I turned the car around, went back to the house, and typed up the specific instructions:
Yes to chemical measures and IV.
No to cardioversion and intubation.
No to chest compressions and feeding by tube.
Yes to converting Atrial Fibrillation to Normal Sinus Rhythm (NSR) for two weeks if needed.
Then I set out again, humming my usual tune for a day of medical adventures with Mom:
We're off to see the wizard, the wonderful wizard of Oz.
Because, because, because, because, because
Because of the wonderful things he does!
La la la la, la la!
When I arrived at 11:45 am, Mom was in her wheelchair in the dining room about to have lunch. As I snatched her away, a caregiver reported, "She went on the scenic drive this morning! We just got back."
"Oh, good," I smiled.
So all my procrastination had not mattered: I could not have taken her to the doctor at 11 am anyway because she had been packed off on a tour around town before 10 am. I should have called at 8 am and warned them not to take her anywhere because I needed to take her in for tests.
"How are you today, Mom?" I asked her automatically. I ask this question each time I arrive.
"I'm sick!" she answered.
An unusual answer, I thought to myself. If she recognizes that she doesn't feel well, perhaps this day will end with a hospitalization.
After a non-productive trip to the toilet, I wheeled her out wondering if she would ever be back--because my plan after her next hospitalization is to move her to a skilled nursing facility.
"We're not going to Japan," she announced as we drove to the UCLA Medical Center.
"Okay," I said. "It's probably not a good idea if you feel sick."
"We'll stay in Colorado. That's what we'll do," she said.
I avoided answering that one.
We arrived at the medical center at 12:30 pm, during the nurses' lunch hour, and had to wait until 1 pm to have the catheterization done and the blood samples taken to check her creatinin levels.
When the time came, I hoisted her onto the examining table and peeled off her slacks, nylons, and Depend. She voficerously protested each movement and screamed when the catheter was put in and taken out. For her, in her dementia, a catheterization is a rape. No amount of explaining makes it okay.
Her abdomen seemed too large while she was lying down. I wondered if, as Dr. Rosen suspected, she might have crystals blocking her kidneys from emptying.
Finally it was over and her Depend, nylongs, slacks, and shoes were replaced.
"You took off my black shoes!" she vented. "Why did you take off my shoes?"
"To take off your nylons," I replied, hopelessly drawn into explanation that wasn't going to help.
Then we went to the lab for her blood to be drawn.
"When we're done, we'll go get some French fries," I promised her.
She unleashed vitriol on the phlebotomist but finally that too was done.
Finally it was 2 pm and we were wheeling toward the elevators in the parking garage, but I had to call the dentist and report that we would be late for her tooth cleaning.
Any sane person would have cancelled the tooth cleaning, given her agitation and exhaustion. She can only put up with so much in any one day, but I pressed on, hoping to get it all done and not to have to interrupt my work another day for a trip to the dentist.
"You're a traitor, you are," she hissed at me as we drove down Wilshire Avenue.
I hadn't even told her we still had a dentist appointment to go to.
We arrived about 2:23 pm and the kind dental assistant got to work as soon as I got her moved from her wheelchair to the dental chair.
(I never said "And now, Mom, we will go to the dentist." It was easier to just bring her in without ever making the visit a topic of argument.)
"I'm sorry I didn't have time to brush her teeth before coming," I admitted. "And I guess they didn't brush her teeth after breakfast."
"You need to keep after them about that," she advised.
Her first step was to suction bits of food out of Mom's mouth, from breakfast I guess. Also there was food in her gums and between her teeth.
Meanwhile, Mom was coughing deeply and filling her mouth with clear phlegm, which the hygienist suctioned out.
If an audio recording had been made of the 15 minutes she spent in the chair, anyone listening to it would be convinced that the Geneva Conventions against torture had been violated.
When her cries formed words, they were something like "Stop! Get out! Leave me alone."
"I'm sorry it's hurting you," the hygienist answered.
"Baloney, you don't give a damn," Mom managed to say through the implements in her mouth.
"We want you to have nice clean teeth so you can SMILE!" said the hygienist.
I reflected that Mom is on the brink of either moving to skilled nursing or being put on hospice; she doesn't have a lot to smile about and knows it. But of course, dentists want people to smile.
"What's the use of trying?" Mom said as the appointment ended. "She won't ever do a thing I say. She's a mess, a baby. 'Pee and pee and pee again,' she says. Get me out of here."
"Oh, my mother is speaking about her caregiver," I explained. "We've been trying to get a urine sample for a couple of days, and she is tired of trying. Mom, we have to wait for the dentist to take a look at you."
"Damn fools! They don't know anything anyway," she said. "Nurses know a lot more than they do."
She was talking about doctors, of course. I know because I've been hearing this point since I was ten years old.
Somehow the dentist managed to put his hands in and out of her mouth without being bitten or scratched. I held her hands just in case for the few minutes he needed.
He commented about the Telluride license plate I keep on the back of her wheelchair, and Mom yelled, "To-hell-U-ride! That's what we called it."
Usually it's a humorous comment, but this time it came out like a curse.
"No services wanted, just remember!" she repeated loudly as we left the dental office.
Yeah, I got the message: no catheterizations, no blood draws, no tooth cleaning.
She's sick and tired of all this medical care, and so am I.
Tuesday, March 13, 2007
Depending on Depends
It's almost a full-time job, buying Depends.
First I tried Walgreen's because I had coupon for $1.50 off each package of 18 refastenable disposable pants, but they had no small/medium size (only large/extra large).
Walgreen's is often out of this size, but the weekly shipment comes in on Tuesday, so I gave it a try. After speaking with three clerks and standing around, I learned that the boxes had not yet been unloaded.
On to Long's Drugs, where I purchased two packages of Depends Refastenable small/medium--all they had left. But the price was $15.49 for each package. With tax, the total was $33.54 for 36 disposable adult incontinence underwear.
That's a cost of about $1 per pee.
Next I drove to Von's to use another coupon and buy two more packages (she uses three packages per week). At Von's they were on sale for $11.99 per package, and with another $1.50 off, the cost was a mere $10.49 per package (with tax $25.54 for two).
The cost: a mere 71 cents per pee.
I'm avoiding CVS, which just took over my Depend-able Sav-On store. I have a $5 off coupon for use there, but in the takeover CVS discontinued products Mom and her caregivers need, like latex gloves in medium-size. They just have "one size fits all," but the caregivers have small hands. They also changed the checkout stands so all items have to be handed back and forth across the counter before and after bagging, instead of placed on a counter, bagged and easily moved from there into my cart.
Last week I went to CVS just to use a $5 coupon, but when I got to the checkout stand, I was told that I should have used some new coupon printout machine as I entered the store. No discount without using the machine.
So now in addition to plastic discount cards and paper coupons for each store, I'm supposed to interact with a machine upon walking in if I want to actually get a discount.
At each store they offer their own brand of refastenable adult incontinence wear, several dollars cheaper than Depends. I've bought each one, only to find that they are not as thick and absorbent, not very fitted--more like a pad folded over than like underpants.
Sometimes when I visit Mom in the late afternoon, I find her Depends soaked and heavy (with maybe five pounds of urine) because she has not been changed since 10 am. That's why she needs the most fitted and absorbent disposable underwear possible.
The easiest option for me would be to stop buying Depends all together and just let her wear the non-refastenable disposable wear provided by her residence. I don't do that because she wears support panty hose for circulation in her vericose veins; without refastenables, her pantyhose, shoes, and long pants would have to be changed each time her underwear is changed.
Also the disposables provided by the residence are loose, barely fitted--again, like a large rectangular pad folded in half.
Note: the caregivers call them diapers. I avoid this word in order not to hurt Mom's feelings. She hates wearing them, hates being treated like a baby, especially hates having them changed at night while she's lying in bed. She'd prefer to get up and be taken in her wheelchair to the restroom two or three times per night, but that's too much work.
Take the quiz:
What's your solution to this care issue for your elderly relative?
What's your view of my time-consuming shopping habit?
A. It's another sign of your codependent behavior. Stop buying Depends and let the residence supply the underwear.
B. Keep buying Depends but stop feeling that you need to shop for bargains, use coupons, etc. Just go to one store where they keep the right size in stock.
C. Accept what you cannot change.
D. Oh, you are such a good daughter. Sigh.
First I tried Walgreen's because I had coupon for $1.50 off each package of 18 refastenable disposable pants, but they had no small/medium size (only large/extra large).
Walgreen's is often out of this size, but the weekly shipment comes in on Tuesday, so I gave it a try. After speaking with three clerks and standing around, I learned that the boxes had not yet been unloaded.
On to Long's Drugs, where I purchased two packages of Depends Refastenable small/medium--all they had left. But the price was $15.49 for each package. With tax, the total was $33.54 for 36 disposable adult incontinence underwear.
That's a cost of about $1 per pee.
Next I drove to Von's to use another coupon and buy two more packages (she uses three packages per week). At Von's they were on sale for $11.99 per package, and with another $1.50 off, the cost was a mere $10.49 per package (with tax $25.54 for two).
The cost: a mere 71 cents per pee.
I'm avoiding CVS, which just took over my Depend-able Sav-On store. I have a $5 off coupon for use there, but in the takeover CVS discontinued products Mom and her caregivers need, like latex gloves in medium-size. They just have "one size fits all," but the caregivers have small hands. They also changed the checkout stands so all items have to be handed back and forth across the counter before and after bagging, instead of placed on a counter, bagged and easily moved from there into my cart.
Last week I went to CVS just to use a $5 coupon, but when I got to the checkout stand, I was told that I should have used some new coupon printout machine as I entered the store. No discount without using the machine.
So now in addition to plastic discount cards and paper coupons for each store, I'm supposed to interact with a machine upon walking in if I want to actually get a discount.
At each store they offer their own brand of refastenable adult incontinence wear, several dollars cheaper than Depends. I've bought each one, only to find that they are not as thick and absorbent, not very fitted--more like a pad folded over than like underpants.
Sometimes when I visit Mom in the late afternoon, I find her Depends soaked and heavy (with maybe five pounds of urine) because she has not been changed since 10 am. That's why she needs the most fitted and absorbent disposable underwear possible.
The easiest option for me would be to stop buying Depends all together and just let her wear the non-refastenable disposable wear provided by her residence. I don't do that because she wears support panty hose for circulation in her vericose veins; without refastenables, her pantyhose, shoes, and long pants would have to be changed each time her underwear is changed.
Also the disposables provided by the residence are loose, barely fitted--again, like a large rectangular pad folded in half.
Note: the caregivers call them diapers. I avoid this word in order not to hurt Mom's feelings. She hates wearing them, hates being treated like a baby, especially hates having them changed at night while she's lying in bed. She'd prefer to get up and be taken in her wheelchair to the restroom two or three times per night, but that's too much work.
Take the quiz:
What's your solution to this care issue for your elderly relative?
What's your view of my time-consuming shopping habit?
A. It's another sign of your codependent behavior. Stop buying Depends and let the residence supply the underwear.
B. Keep buying Depends but stop feeling that you need to shop for bargains, use coupons, etc. Just go to one store where they keep the right size in stock.
C. Accept what you cannot change.
D. Oh, you are such a good daughter. Sigh.
Wednesday, February 07, 2007
The ER Again
It was inevitable.
When I found Mom on the floor on Monday, and she complained, "My bottom hurts," I decided not to take her to the ER for an x-ray.
Not again. Not this time. Even though she had not reported any pain like that in the last year or two.
On Tuesday when she was still saying, "My bottom hurts," I continued to ignore it.
But today it got to me. She was still reporting "My bottom hurts" and whimpering with pain when I transferred her from her chair to the wheelchair or the wheelchair to the toilet.
I had arrived at 3:30 pm planning to take her on an outing to the mall, but I decided to take her to the ER instead.
After x-rays, I'd know if her reported pain was serious--something broken in her fall--or just a sign of her general aches and pains and self-pity.
We arrived at the ER at 5 pm.
We left at 9:30 pm after x-rays and a CT scan. The verdict: nothing new was broken. Just the old cracks in her pelvis, crushed L-2 vertebra, and plates with pins in each hip.
As we were leaving, it occurred to me that maybe "My bottom hurts" means a urinary tract infection. I'll try to have that checked out tomorrow.
I wheeled her back to her residence, fed some of the salmon dinner the staff had saved for her, and put her to bed, going home at 10:30 pm.
"You better come when I call you," she kept saying to me as I settled her into bed and prepared to leave.
"No, I won't come," I repeated to her. "Someone here will come, but it won't be me. I'm going home and going to bed too."
"You better come when I call you," she said again.
~~~
Other samples of our conversation during the four and a half hours we spent in the ER:
Anne: Are you okay?
Mom: Just sleepy.
Anne: It's hard to wait so long for the doctor, isn't it?
Mom: They think they're so smart. They don't know as much as nurses.
~
Anne: So you talked to Bill a couple nights ago? What did he say?
Mom: He told me I was in heaven already.
~
Anne: Now we're going to get a CT scan.
Mom: They're just trying to make money off of me.
~
Anne: (waking her) Okay, Mom, now we're going to get dressed and go home.
Mom: I'm done now. It was a baby boy.
~
Anne: Let's get this shirt on.
Mom: Everybody knows I'm not a bear.
Next time somebody remind me not to take her to the ER just because she fell down.
When I found Mom on the floor on Monday, and she complained, "My bottom hurts," I decided not to take her to the ER for an x-ray.
Not again. Not this time. Even though she had not reported any pain like that in the last year or two.
On Tuesday when she was still saying, "My bottom hurts," I continued to ignore it.
But today it got to me. She was still reporting "My bottom hurts" and whimpering with pain when I transferred her from her chair to the wheelchair or the wheelchair to the toilet.
I had arrived at 3:30 pm planning to take her on an outing to the mall, but I decided to take her to the ER instead.
After x-rays, I'd know if her reported pain was serious--something broken in her fall--or just a sign of her general aches and pains and self-pity.
We arrived at the ER at 5 pm.
We left at 9:30 pm after x-rays and a CT scan. The verdict: nothing new was broken. Just the old cracks in her pelvis, crushed L-2 vertebra, and plates with pins in each hip.
As we were leaving, it occurred to me that maybe "My bottom hurts" means a urinary tract infection. I'll try to have that checked out tomorrow.
I wheeled her back to her residence, fed some of the salmon dinner the staff had saved for her, and put her to bed, going home at 10:30 pm.
"You better come when I call you," she kept saying to me as I settled her into bed and prepared to leave.
"No, I won't come," I repeated to her. "Someone here will come, but it won't be me. I'm going home and going to bed too."
"You better come when I call you," she said again.
~~~
Other samples of our conversation during the four and a half hours we spent in the ER:
Anne: Are you okay?
Mom: Just sleepy.
Anne: It's hard to wait so long for the doctor, isn't it?
Mom: They think they're so smart. They don't know as much as nurses.
~
Anne: So you talked to Bill a couple nights ago? What did he say?
Mom: He told me I was in heaven already.
~
Anne: Now we're going to get a CT scan.
Mom: They're just trying to make money off of me.
~
Anne: (waking her) Okay, Mom, now we're going to get dressed and go home.
Mom: I'm done now. It was a baby boy.
~
Anne: Let's get this shirt on.
Mom: Everybody knows I'm not a bear.
Next time somebody remind me not to take her to the ER just because she fell down.
Tuesday, February 06, 2007
Easy To Go Wrong
It's so easy for Mom to slide from a state of well-being to a few rungs below and then begin a steep downhill slide.
Today both of Mom's hands were shaking as she sat with them in her lap, probably the result of her fall yesterday.
She was also complaining "My bottom hurts," as she said yesterday. I should probably take her to the ER for an x-ray in case she broke a bone in her fall, but I just don't want to lose six hours doing that, only to hear she is fine.
In addition, three new problems developed:
1) I noticed she has two big blood-filled bruises on her wrists, one on each hand, one on the inside of the wrist, the other on top. I guess it is from last Wednesday when I allowed the staff to take her for her blood test. They took her to a lab I don't use, and whoever took her blood sample must have been unable to find a vein.
Probably I should return to taking her myself for her blood tests and going to the lab that does it right.
I took her to show the bruises to two staff members, telling them that I will take over her blood tests again if this continues.
2) The new hairdo she got yesterday was gone. Instead her hair was flattened on top, hard with matted mousse, and frizzy around the neckline like a perm that had not been put on rollers. $20 yesterday for the shampoo and set--but today it looks as if she hadn't had her hair done for ten days.
I took her to the beauty shop and complained. They wanted to spiff it up on the spot, but I said "Just do a better job next time."
Her caregiver Connie says she used a shower cap last night on the hairdo, didn't get it wet. So maybe the caregiver who dressed her this morning combed it with a wet comb and ruined it?
3) Her favorite sweater, the one with the faux fur collar, has to be taken to the dry cleaners again, though it was just cleaned a week ago. It has black smears on the arms and side from rubbing against the wheelchair wheels. I drove it to the dry cleaners.
~~~
I was going to try to get her walking a little ways every day to regain mobility, but with this fall she can't do that yet.
~~~
I left after two hours, feeling glum about her shaking hands, her bruises, her flattened sticky hair, and her favorite sweater going back to the dry cleaners.
If I don't provide continual attention, things fall apart.
Today both of Mom's hands were shaking as she sat with them in her lap, probably the result of her fall yesterday.
She was also complaining "My bottom hurts," as she said yesterday. I should probably take her to the ER for an x-ray in case she broke a bone in her fall, but I just don't want to lose six hours doing that, only to hear she is fine.
In addition, three new problems developed:
1) I noticed she has two big blood-filled bruises on her wrists, one on each hand, one on the inside of the wrist, the other on top. I guess it is from last Wednesday when I allowed the staff to take her for her blood test. They took her to a lab I don't use, and whoever took her blood sample must have been unable to find a vein.
Probably I should return to taking her myself for her blood tests and going to the lab that does it right.
I took her to show the bruises to two staff members, telling them that I will take over her blood tests again if this continues.
2) The new hairdo she got yesterday was gone. Instead her hair was flattened on top, hard with matted mousse, and frizzy around the neckline like a perm that had not been put on rollers. $20 yesterday for the shampoo and set--but today it looks as if she hadn't had her hair done for ten days.
I took her to the beauty shop and complained. They wanted to spiff it up on the spot, but I said "Just do a better job next time."
Her caregiver Connie says she used a shower cap last night on the hairdo, didn't get it wet. So maybe the caregiver who dressed her this morning combed it with a wet comb and ruined it?
3) Her favorite sweater, the one with the faux fur collar, has to be taken to the dry cleaners again, though it was just cleaned a week ago. It has black smears on the arms and side from rubbing against the wheelchair wheels. I drove it to the dry cleaners.
~~~
I was going to try to get her walking a little ways every day to regain mobility, but with this fall she can't do that yet.
~~~
I left after two hours, feeling glum about her shaking hands, her bruises, her flattened sticky hair, and her favorite sweater going back to the dry cleaners.
If I don't provide continual attention, things fall apart.
Monday, February 05, 2007
The Unexpected
Be prepared for the unexpected.
That's the advice I would give to anyone caring for someone with Lewy Body Dementia, but it's by definition impossible.
Today I postponed going to see my mother until 3:30 pm because I am trying to cut back on my hours spent with her. My husband and kids think I spend too much time with her, and a particularly unkind therapist for one of my kids even accused me of spending time with my mother to escape other problems.
Yeah, it's so fun to visit the Reminiscence Neighborhood.
Anyway, today I entered Mom's room about 3:35 pm to find her lying on the floor underneath her wheelchair with her legs sticking out from one end of the wheelchair and her head and arms at the other end.
Her head was resting on a blue foam rectangular pad that was supposed to be a footrest.
The wheelchair was next to the recliner where she had been sitting upright at 3:20 pm when a caregiver checked on her.
But she had decided to get out of the recliner into the wheelchair and had fallen or slid underneath the wheelchair.
"Oh Anne, thank goodness you came!" she said to me when I entered.
She appeared to be okay though shaking and agitated.
"What are you doing, Mom? Why did you get out of your chair?" I began asking.
"I'm going to dinner," she said.
"No, you are not supposed to go anywhere without help," I argued.
"But I graduated," she said. "It's okay now."
"No, it's not," I continued though I know it's pointless to lecture her.
"I graduated," she repeated. "I'm ready to roam."
~~~
What Mom meant was that her physical therapy had ended. The therapist had moved her along as far as she could and had trained me and her caregivers to do certain exercises with her.
Actually, it was the physical therapist who had ordered that she sit upright in her recliner, with the blue foam box under her feet, rather than stretched out in a reclining position, because this would be better for her feet. They would sit upright and not get turned in.
Susan, a caregiver, and I had argued with Nora, saying that that position wasn't safe; she could too easily propel herself forward to get out of the chair. but in the end I agreed to give it a try. I allowed her to be left with the recliner in an upright position and the box under her feet.
~~~
When I saw Mom on the floor, my first reaction was to move the wheelchair off of her, put a pillow under her head, and try to lift her into the wheelchair, but then I remembered to go get the lead care manager on duty and let her see what had happened.
Esther was horrified when she saw the scene.
"From now on she cannot be left in her room alone in her recliner," I ordered. "She will have to sit out in the common area, whether she wants to or not."
We lifted Mom into her wheelchair and took her vital signs. Blood pressure only 109/69 and pulse 66. Pretty darn good.
We took her to the toilet, where she appeared to be able to be transferred without unusual pain.
What I did not want was six hours in the ER followed by 24 hours in the hospital for observation and two weeks of x-rays, CT scans, and blood tests, as happened after her fall on Dec. 16.
In that case we finally figured out that the pain she was reporting was caused by a broken bone in her clavicle area at the left base of her neck, but I really don't have the stamina to go through that series of doctor/lab visits every two months.
I took her into the dining room and chatted with her for a while, then left about 4:45 pm.
Note to myself: get going on finding a good skilled nursing facility. Mom needs more supervision, maybe restraints, which are not allowed in an assisted living residence.
Somehow I need to find the time to research her next living situation, the fifth since we moved her out of her home in November 2001.
That's the advice I would give to anyone caring for someone with Lewy Body Dementia, but it's by definition impossible.
Today I postponed going to see my mother until 3:30 pm because I am trying to cut back on my hours spent with her. My husband and kids think I spend too much time with her, and a particularly unkind therapist for one of my kids even accused me of spending time with my mother to escape other problems.
Yeah, it's so fun to visit the Reminiscence Neighborhood.
Anyway, today I entered Mom's room about 3:35 pm to find her lying on the floor underneath her wheelchair with her legs sticking out from one end of the wheelchair and her head and arms at the other end.
Her head was resting on a blue foam rectangular pad that was supposed to be a footrest.
The wheelchair was next to the recliner where she had been sitting upright at 3:20 pm when a caregiver checked on her.
But she had decided to get out of the recliner into the wheelchair and had fallen or slid underneath the wheelchair.
"Oh Anne, thank goodness you came!" she said to me when I entered.
She appeared to be okay though shaking and agitated.
"What are you doing, Mom? Why did you get out of your chair?" I began asking.
"I'm going to dinner," she said.
"No, you are not supposed to go anywhere without help," I argued.
"But I graduated," she said. "It's okay now."
"No, it's not," I continued though I know it's pointless to lecture her.
"I graduated," she repeated. "I'm ready to roam."
~~~
What Mom meant was that her physical therapy had ended. The therapist had moved her along as far as she could and had trained me and her caregivers to do certain exercises with her.
Actually, it was the physical therapist who had ordered that she sit upright in her recliner, with the blue foam box under her feet, rather than stretched out in a reclining position, because this would be better for her feet. They would sit upright and not get turned in.
Susan, a caregiver, and I had argued with Nora, saying that that position wasn't safe; she could too easily propel herself forward to get out of the chair. but in the end I agreed to give it a try. I allowed her to be left with the recliner in an upright position and the box under her feet.
~~~
When I saw Mom on the floor, my first reaction was to move the wheelchair off of her, put a pillow under her head, and try to lift her into the wheelchair, but then I remembered to go get the lead care manager on duty and let her see what had happened.
Esther was horrified when she saw the scene.
"From now on she cannot be left in her room alone in her recliner," I ordered. "She will have to sit out in the common area, whether she wants to or not."
We lifted Mom into her wheelchair and took her vital signs. Blood pressure only 109/69 and pulse 66. Pretty darn good.
We took her to the toilet, where she appeared to be able to be transferred without unusual pain.
What I did not want was six hours in the ER followed by 24 hours in the hospital for observation and two weeks of x-rays, CT scans, and blood tests, as happened after her fall on Dec. 16.
In that case we finally figured out that the pain she was reporting was caused by a broken bone in her clavicle area at the left base of her neck, but I really don't have the stamina to go through that series of doctor/lab visits every two months.
I took her into the dining room and chatted with her for a while, then left about 4:45 pm.
Note to myself: get going on finding a good skilled nursing facility. Mom needs more supervision, maybe restraints, which are not allowed in an assisted living residence.
Somehow I need to find the time to research her next living situation, the fifth since we moved her out of her home in November 2001.
Friday, February 02, 2007
Aftermath
For Mom to be awake and alert and stimulated by an exciting P.E.O. meeting is good, but as we drove home I realized the excitement had spun her into a kind of hypomania expressed mainly in wild hallucinations.
"I want those earrings," she kept saying as we drove to her residence.
"What earrings?" I asked.
"Those right there," she answered, looking and reaching to a place near her on the dashboard of the car.
"Where?" I asked.
Finally rather than argue with her that nothing was there, I took her hand to touch the spot and said, "Then get them."
Her fingers scrambled at the smooth surface, but she continued to see them. "I can't get them, " she said.
I tried to distract her to another subject.
As we got out of the car, I was helping her to get into her wheelchair.
"No! There's a pin there," she said.
"Oh? Okay, here, I took it away," I answered.
That seemed to work.
But when we were back in her room and I had positioned her in her recliner for a little nap, she was still seeing things.
"There's a cat in my clothes closet," she said.
"Oh, really?" I answered. "I'll chase it out. Scat! Get out of there, you cat." I dramatically chased it out and tried to leave.
"There's still a cat in there!" she cried suddenly.
"Oh dear!" I sighed. "I'll chase it out."
But I also took her out of the recliner and put her back into her wheelchair.
"Let's go see if there's a snack we can find in the kitchen," I suggested.
There was no way she could take a nap. Her mind was racing, so I took her into the kitchen and gave her some grapes to munch on while sitting at a dining table.
"I have to bring her in here," I explained to the caregivers. "She having hallucinations, and I can't leave her alone in her room."
"Oh yes, they do that a lot," Susan said. "Verma always thinks there's someone in her room. She's afraid to go in there."
I made a quick exit, exhausted by the unending stream of caregiving tasks.
I do think she enjoyed being part of a P.E.O. meeting, a relic of her normal life after retirement from teaching nursing.
Going to church, attending these P.E.O. meetings, and being a part of holiday family gatherings in my home are the only vestiges she has of her earlier life. They make it possible for her to endure the long, boring hours spent with strangers and caregivers in her assisted living residence on the memory care floor (locked so the residents can't leave).
But these pleasant gatherings for her come at a high cost for me.
"I want those earrings," she kept saying as we drove to her residence.
"What earrings?" I asked.
"Those right there," she answered, looking and reaching to a place near her on the dashboard of the car.
"Where?" I asked.
Finally rather than argue with her that nothing was there, I took her hand to touch the spot and said, "Then get them."
Her fingers scrambled at the smooth surface, but she continued to see them. "I can't get them, " she said.
I tried to distract her to another subject.
As we got out of the car, I was helping her to get into her wheelchair.
"No! There's a pin there," she said.
"Oh? Okay, here, I took it away," I answered.
That seemed to work.
But when we were back in her room and I had positioned her in her recliner for a little nap, she was still seeing things.
"There's a cat in my clothes closet," she said.
"Oh, really?" I answered. "I'll chase it out. Scat! Get out of there, you cat." I dramatically chased it out and tried to leave.
"There's still a cat in there!" she cried suddenly.
"Oh dear!" I sighed. "I'll chase it out."
But I also took her out of the recliner and put her back into her wheelchair.
"Let's go see if there's a snack we can find in the kitchen," I suggested.
There was no way she could take a nap. Her mind was racing, so I took her into the kitchen and gave her some grapes to munch on while sitting at a dining table.
"I have to bring her in here," I explained to the caregivers. "She having hallucinations, and I can't leave her alone in her room."
"Oh yes, they do that a lot," Susan said. "Verma always thinks there's someone in her room. She's afraid to go in there."
I made a quick exit, exhausted by the unending stream of caregiving tasks.
I do think she enjoyed being part of a P.E.O. meeting, a relic of her normal life after retirement from teaching nursing.
Going to church, attending these P.E.O. meetings, and being a part of holiday family gatherings in my home are the only vestiges she has of her earlier life. They make it possible for her to endure the long, boring hours spent with strangers and caregivers in her assisted living residence on the memory care floor (locked so the residents can't leave).
But these pleasant gatherings for her come at a high cost for me.
The Kindness of P.E.O. Sisters
Today was another exciting P.E.O. meeting, the second I have hosted in my home.
I hadn't scrubbed my kitchen floor since the last such occasion, before Halloween, but I did it from about 1 to 3 am last night.
Not a good time to scrub floors--in my sleepiness I dumped the bucket of dirty water down the toilet with the square scrub pad in the water, but somehow it didn't clog my plumbing.
By 10 am the meeting was getting underway.
The chaplain read a nice devotion on love from Corinthians, and the president complimented her on doing such a good job.
"It's not easy," Louise said. "When I was chaplain sometimes I'd find myself going from one end of the Bible to the other trying to find something positive."
Yeah, finding something bland and palatable in the Bible can be a tough job.
We repeated the Lord's prayer, and Mom used her own version of the various options when it comes to debts and trespasses: "Forgive us our debts as we forgive those who debt against us."
During the business meeting, Mom kept whispering to me about her husband crossing the red line and about some dream she had: "I had to take everything off until I was naked. The president told me to do that." (I hope it was a dream)
When there was a motion and a vote, Louise asked, "All in favor?"
"Amen," said Mom.
After lovely refreshments, we played some challenging games of Bingo--trying to make a window frame and then the letter H, not your usual fare.
I was holding my card up for Mom to see, to involve her in the game.
At one point, when N42 was called, she yelled out, "I have it!" Which was true.
"You do? Then you get a prize," Louise graciously answered.
She brought Mom a wrapped present, which turned out to be a box of Kleenex.
Mom enjoyed getting it and unwrapping it. Then she proceeded to pull out several tissues.
"We just need one," I corrected her.
"This is for if I decide to wipe my nose, and this is for if you do," she answered. It's true that I do a lot of wiping of her nose, which seems to drip often.
By the end of the meeting she had pulled all the tissues out of the box and they lay in a pile beside her wheelchair.
I cleaned up and prepared to take her back to Ocean View Assisted Living.
"Did you enjoy the P.E.O. meeting?" I asked her.
"Oh, yes!" she answered.
And I believe she did.
At least she was awake and alert and involved the whole time, not falling asleep.
I hadn't scrubbed my kitchen floor since the last such occasion, before Halloween, but I did it from about 1 to 3 am last night.
Not a good time to scrub floors--in my sleepiness I dumped the bucket of dirty water down the toilet with the square scrub pad in the water, but somehow it didn't clog my plumbing.
By 10 am the meeting was getting underway.
The chaplain read a nice devotion on love from Corinthians, and the president complimented her on doing such a good job.
"It's not easy," Louise said. "When I was chaplain sometimes I'd find myself going from one end of the Bible to the other trying to find something positive."
Yeah, finding something bland and palatable in the Bible can be a tough job.
We repeated the Lord's prayer, and Mom used her own version of the various options when it comes to debts and trespasses: "Forgive us our debts as we forgive those who debt against us."
During the business meeting, Mom kept whispering to me about her husband crossing the red line and about some dream she had: "I had to take everything off until I was naked. The president told me to do that." (I hope it was a dream)
When there was a motion and a vote, Louise asked, "All in favor?"
"Amen," said Mom.
After lovely refreshments, we played some challenging games of Bingo--trying to make a window frame and then the letter H, not your usual fare.
I was holding my card up for Mom to see, to involve her in the game.
At one point, when N42 was called, she yelled out, "I have it!" Which was true.
"You do? Then you get a prize," Louise graciously answered.
She brought Mom a wrapped present, which turned out to be a box of Kleenex.
Mom enjoyed getting it and unwrapping it. Then she proceeded to pull out several tissues.
"We just need one," I corrected her.
"This is for if I decide to wipe my nose, and this is for if you do," she answered. It's true that I do a lot of wiping of her nose, which seems to drip often.
By the end of the meeting she had pulled all the tissues out of the box and they lay in a pile beside her wheelchair.
I cleaned up and prepared to take her back to Ocean View Assisted Living.
"Did you enjoy the P.E.O. meeting?" I asked her.
"Oh, yes!" she answered.
And I believe she did.
At least she was awake and alert and involved the whole time, not falling asleep.
The Red Line
Mom talks a lot about the red line now.
"My husband crossed the red line," she says.
"He just put on his white dress and waved his hand and said 'Bye, honey' after he crossed the red line."
It's not a metaphor for her.
It's her understanding of death.
"My husband crossed the red line," she says.
"He just put on his white dress and waved his hand and said 'Bye, honey' after he crossed the red line."
It's not a metaphor for her.
It's her understanding of death.
Sunday, January 28, 2007
Slowly Dying
It's a small thing: tonight Mom can't remember that she is supposed to take her false teeth out at night.
"It's the first time," says her weekend caregiver, Raquel.
We both know that for over a year now, Mom has been asked to take them out and has complied. For forty years she kept them in all night, just removing them for a half hour per day to soak in Efferdent.
But then one night a year and a half ago she took her partial plate out during the night, put it "under her pillow," and it was never seen again. After much searching, we replaced it and instituted the no-teeth-at-night rule.
"Why don't you just take them out?" I ask Raquel.
"She might bite me," admits Raquel with embarrassment.
"Oh, yes, of course. She probably would bite you," I remember.
In the last few years biting has become one of Mom's avenues of last recourse in defending herself and keeping caregivers at bay.
So I get the Efferdent cup and begin negotiations with Mom to remove the teeth.
"No! I will need them in the morning," Mom argues, but eventually she complies.
Then I floss her remaining eight teeth at the front of her lower jaw and brush them.
When I give her sips of water and ask her to rinse out her teeth, she just swallows the water. She has forgotten how to swish out her mouth and spit after her teeth are brushed.
~ ~ ~
She is having a sleepy day, but she did open her eyes and speak with me immediately when I arrived at 7 pm.
I didn't take her to church today because I was one of two leaders at the Women-Church liturgy in the morning, and I had to visit my daughter in rehab in the afternoon. It would have been hard to do these things while attending Mom in her wheelchair.
~ ~ ~
In the last week or two, the list of things Mom can't remember how to do has been growing.
She doesn't remember:
1) how to participate in her tooth care at night,
2) how to tear off individual sheets of toilet paper and stack them while sitting on the toilet,
3) how to ask for a tissue to blow her nose,
4) how to replace her foot on the foot support of her wheelchair if it falls off,
5) how to listen to the television and make sense of it.
For about two years she has not known how to dial a phone number.
She can't do two things at the same time--like eat and watch I Love Lucy, which used to be her delight.
She no longer asks for water to be run at the sink while she is on the toilet.
She no longer insists on two napkins at meals, one at her neck and one in her lap.
She doesn't interact with most of her possessions: the dolls in her glass cabinet, the jewelry on her bureau, the photos on her walls. I don't think she sees these things any more.
She hasn't talked about going to Colorado for six months or more.
When I bring her to my house, she asks to leave in about ten minutes. I put the wheelchair at her end of the kitchen table, make cinnamon raisin bread toast, serve it to her with milk, and as soon as she finishes it, she says, "I'd better go back now."
If I take her to Denny's and we order a meal, she immediately asks where her food is.
"It's not ready yet," I argue, but she feels it should arrive while the waiter is walking toward the kitchen.
~ ~ ~
Lately she has had more sleepy days, two or occasionally three per week. On really bad days, she is too sleepy to eat. She just sits at the table slumped forward.
Tonight she was sleepy and didn't eat much, reports Racquel, who managed to get her to eat a little bit.
Last week she didn't eat all day on Saturday, though I spent 45 minutes trying to get her to sip Ensure and to eat some pasta with seafood.
~ ~ ~
Tonight it all adds up: she is dying. Not dramatically, as with a stroke or pneumonia, but inch by inch, with excruciating slowness.
Item by item, she is losing her ability to do things and remember things.
"Time for a nursing home," I realize suddenly. "What she needs increasingly is just nursing care."
Yet she is still in the fancy assisted-living residence I chose to keep her happy and enhance her self-esteem. For a while it made sense for her to be in a beautifully decorated place with an elegant dining room and all of her own furniture in her private room.
But now she sees less and less of her surroundings. She has tunnel vision that extends to only a few feet around her.
It's time to give up the elegant residence and the eight-hours-per-day of private caregivers.
She is close to her 88th birthday, and I expect she will not live to see her 89th.
The caregivers and executive director of her residence want me to keep her there until she dies, paying for private caregivers around the clock when that level of care becomes needed again.
Two factors dictate a no to this plan:
1) the $7,000 per month needed to keep her there, and
2) the lack of a workable plan for evacuation of the residents on her floor in the case of a fire or earthquake. Just last month she was injured by falling when there was a small fire on the first floor.
~ ~ ~
I leave the building in tears tonight as I reflect on the shortness of her remaining days. I've been in denial, I think.
She is withdrawing from the world, but I'm still treating her like the person she was two years ago, who enjoyed her surroundings, was proud of being an author, and demanded to go Colorado in the summer.
She is methodically dying, but I am struggling to keep her eating and involved in activities.
I wonder how I will find the time to select a skilled nursing facility and move her there.
I also realize with relief that my complex life of caring for her while interacting with three daughters ages 19 to 24 will not last forever.
Perhaps when 2007 ends my middle daughter will be in recovery from cocaine addiction and my mother will have moved on to her final rest.
Note on April 7, 2017: My mother died on April 9, 2008, at age 89. My daughter has almost ten years of being clean and sober and is now a therapist helping others to recover from addiction.
"It's the first time," says her weekend caregiver, Raquel.
We both know that for over a year now, Mom has been asked to take them out and has complied. For forty years she kept them in all night, just removing them for a half hour per day to soak in Efferdent.
But then one night a year and a half ago she took her partial plate out during the night, put it "under her pillow," and it was never seen again. After much searching, we replaced it and instituted the no-teeth-at-night rule.
"Why don't you just take them out?" I ask Raquel.
"She might bite me," admits Raquel with embarrassment.
"Oh, yes, of course. She probably would bite you," I remember.
In the last few years biting has become one of Mom's avenues of last recourse in defending herself and keeping caregivers at bay.
So I get the Efferdent cup and begin negotiations with Mom to remove the teeth.
"No! I will need them in the morning," Mom argues, but eventually she complies.
Then I floss her remaining eight teeth at the front of her lower jaw and brush them.
When I give her sips of water and ask her to rinse out her teeth, she just swallows the water. She has forgotten how to swish out her mouth and spit after her teeth are brushed.
~ ~ ~
She is having a sleepy day, but she did open her eyes and speak with me immediately when I arrived at 7 pm.
I didn't take her to church today because I was one of two leaders at the Women-Church liturgy in the morning, and I had to visit my daughter in rehab in the afternoon. It would have been hard to do these things while attending Mom in her wheelchair.
~ ~ ~
In the last week or two, the list of things Mom can't remember how to do has been growing.
She doesn't remember:
1) how to participate in her tooth care at night,
2) how to tear off individual sheets of toilet paper and stack them while sitting on the toilet,
3) how to ask for a tissue to blow her nose,
4) how to replace her foot on the foot support of her wheelchair if it falls off,
5) how to listen to the television and make sense of it.
For about two years she has not known how to dial a phone number.
She can't do two things at the same time--like eat and watch I Love Lucy, which used to be her delight.
She no longer asks for water to be run at the sink while she is on the toilet.
She no longer insists on two napkins at meals, one at her neck and one in her lap.
She doesn't interact with most of her possessions: the dolls in her glass cabinet, the jewelry on her bureau, the photos on her walls. I don't think she sees these things any more.
She hasn't talked about going to Colorado for six months or more.
When I bring her to my house, she asks to leave in about ten minutes. I put the wheelchair at her end of the kitchen table, make cinnamon raisin bread toast, serve it to her with milk, and as soon as she finishes it, she says, "I'd better go back now."
If I take her to Denny's and we order a meal, she immediately asks where her food is.
"It's not ready yet," I argue, but she feels it should arrive while the waiter is walking toward the kitchen.
~ ~ ~
Lately she has had more sleepy days, two or occasionally three per week. On really bad days, she is too sleepy to eat. She just sits at the table slumped forward.
Tonight she was sleepy and didn't eat much, reports Racquel, who managed to get her to eat a little bit.
Last week she didn't eat all day on Saturday, though I spent 45 minutes trying to get her to sip Ensure and to eat some pasta with seafood.
~ ~ ~
Tonight it all adds up: she is dying. Not dramatically, as with a stroke or pneumonia, but inch by inch, with excruciating slowness.
Item by item, she is losing her ability to do things and remember things.
"Time for a nursing home," I realize suddenly. "What she needs increasingly is just nursing care."
Yet she is still in the fancy assisted-living residence I chose to keep her happy and enhance her self-esteem. For a while it made sense for her to be in a beautifully decorated place with an elegant dining room and all of her own furniture in her private room.
But now she sees less and less of her surroundings. She has tunnel vision that extends to only a few feet around her.
It's time to give up the elegant residence and the eight-hours-per-day of private caregivers.
She is close to her 88th birthday, and I expect she will not live to see her 89th.
The caregivers and executive director of her residence want me to keep her there until she dies, paying for private caregivers around the clock when that level of care becomes needed again.
Two factors dictate a no to this plan:
1) the $7,000 per month needed to keep her there, and
2) the lack of a workable plan for evacuation of the residents on her floor in the case of a fire or earthquake. Just last month she was injured by falling when there was a small fire on the first floor.
~ ~ ~
I leave the building in tears tonight as I reflect on the shortness of her remaining days. I've been in denial, I think.
She is withdrawing from the world, but I'm still treating her like the person she was two years ago, who enjoyed her surroundings, was proud of being an author, and demanded to go Colorado in the summer.
She is methodically dying, but I am struggling to keep her eating and involved in activities.
I wonder how I will find the time to select a skilled nursing facility and move her there.
I also realize with relief that my complex life of caring for her while interacting with three daughters ages 19 to 24 will not last forever.
Perhaps when 2007 ends my middle daughter will be in recovery from cocaine addiction and my mother will have moved on to her final rest.
Note on April 7, 2017: My mother died on April 9, 2008, at age 89. My daughter has almost ten years of being clean and sober and is now a therapist helping others to recover from addiction.
Saturday, January 27, 2007
Full Speed Ahead
Mom's brain was working at top speed today, skittering off in many directions.
I brought her to my house at about 1 pm to eat a snack and talk with my youngest daughter while the dog ran around them.
Here are some samples of the conversation.
"It must be kind of crowded in heaven," Mom says.
"No, I think there's a lot of space there," says Marie. "Unlimited access, like the internet."
"Interesting idea, Marie," I interject.
""I think it's very true," she continues. "Heaven is like the internet. If I make a website and my computer crashes, the website still exists."
"I don't think I can send you letters when I go there," Mom comments.
"Well, I guess not," says Marie kindly. "I think you can talk to us, though, whenever you want to. We'll just hear you in our minds, like the way animals and humans understand each other."
"Do you know Page 141? I make everyone memorize it," Mom continues.
"No, what is it?" Marie asks.
"Page 141: The Lord is my shepherd. I shall not want. He leadeth me beside the still waters. He telleth me where to go and what to do and what to do about it...."
"Oh!" Marie and I chorus.
~ ~ ~
"I need a Kleenex," says Mom, fishing in her purse as she sits at the table.
For some reason I am not listening to her; I don't jump up to set a box of tissues in front of her.
Suddenly she says, "There! I wiped my nose on the P.E.O. Sisterhood."
"No, you didn't!" I cry in horror, turning to her.
Indeed she is holding her small lavender P.E.O. booklet of names, addresses, and upcoming events. There is a dark brown smudge on the cover.
"Why did you do that?" I ask.
"Why? It needed to be done," she comments blankly. "Sacrilege, huh?"
~ ~ ~
As I drive her back to her residence, Mom is talking about my brother Jim's wedding again. She was talking about it yesterday. Perhaps her caregiver put the videotape of the wedding into her television.
"Jim cried as he slit the penis/vaginal opening," she says.
"What--why?!" I comment numbly, wondering what on earth brought this up.
"Because he didn't want to hurt her," Mom says. "I don't know why that was part of the wedding. I didn't think that was appropriate at all."
~ ~ ~
Now she is worried about some problem she will find in her room when we get back there.
"I'll have to get down on my hands and knees to crawl to the box," she says.
"What box?" I ask.
"That big case of diapers," she says.
"There's no case of diapers in your sitting room," I say firmly. The rest of today's conversation may have been insane, but here I am on solid ground. "It would not be a good idea for you to get on your knees and crawl to anything. Your Depends are in your bathroom, two packs of them, each pack in a plastic wrapper."
"No, they're in my room in a box," she says. "You'll see when we get there."
I give up.
Conversation is just not possible.
I brought her to my house at about 1 pm to eat a snack and talk with my youngest daughter while the dog ran around them.
Here are some samples of the conversation.
"It must be kind of crowded in heaven," Mom says.
"No, I think there's a lot of space there," says Marie. "Unlimited access, like the internet."
"Interesting idea, Marie," I interject.
""I think it's very true," she continues. "Heaven is like the internet. If I make a website and my computer crashes, the website still exists."
"I don't think I can send you letters when I go there," Mom comments.
"Well, I guess not," says Marie kindly. "I think you can talk to us, though, whenever you want to. We'll just hear you in our minds, like the way animals and humans understand each other."
"Do you know Page 141? I make everyone memorize it," Mom continues.
"No, what is it?" Marie asks.
"Page 141: The Lord is my shepherd. I shall not want. He leadeth me beside the still waters. He telleth me where to go and what to do and what to do about it...."
"Oh!" Marie and I chorus.
~ ~ ~
"I need a Kleenex," says Mom, fishing in her purse as she sits at the table.
For some reason I am not listening to her; I don't jump up to set a box of tissues in front of her.
Suddenly she says, "There! I wiped my nose on the P.E.O. Sisterhood."
"No, you didn't!" I cry in horror, turning to her.
Indeed she is holding her small lavender P.E.O. booklet of names, addresses, and upcoming events. There is a dark brown smudge on the cover.
"Why did you do that?" I ask.
"Why? It needed to be done," she comments blankly. "Sacrilege, huh?"
~ ~ ~
As I drive her back to her residence, Mom is talking about my brother Jim's wedding again. She was talking about it yesterday. Perhaps her caregiver put the videotape of the wedding into her television.
"Jim cried as he slit the penis/vaginal opening," she says.
"What--why?!" I comment numbly, wondering what on earth brought this up.
"Because he didn't want to hurt her," Mom says. "I don't know why that was part of the wedding. I didn't think that was appropriate at all."
~ ~ ~
Now she is worried about some problem she will find in her room when we get back there.
"I'll have to get down on my hands and knees to crawl to the box," she says.
"What box?" I ask.
"That big case of diapers," she says.
"There's no case of diapers in your sitting room," I say firmly. The rest of today's conversation may have been insane, but here I am on solid ground. "It would not be a good idea for you to get on your knees and crawl to anything. Your Depends are in your bathroom, two packs of them, each pack in a plastic wrapper."
"No, they're in my room in a box," she says. "You'll see when we get there."
I give up.
Conversation is just not possible.
Saturday, January 20, 2007
Dementia and _______?
Let's face it, most of us are not doing just dementia.
We are doing dementia and a full-time job, or dementia and the rearing of teenagers, or dementia and two or three volunteer services in the community, or dementia and all of the above.
Very few of us have the luxury of doing just the care and management of a person with dementia.
Since December 20, when one of my daughters went into rehab, I have been doing Lewy Body Dementia and bulimia and cocaine addiction.
First of all, there's just doing the learning and research on these particular illnesses.
Then there are the issues of where to get the best care: finding doctors, therapists, residential living centers--and getting my mother and daughter to these places and appointments.
Then the's the job of figuring out how to pay for it all.
And of course there's the need to visit my mother and my daughter, give them support and encouragement.
Finally, there's the need to care for myself--to find support and encouragement for me.
Oh, and also there are the daily ups and downs of these illnesses--every decision made yesterday will be changed today if my mother falls and breaks a bone or my daughter relapses.
And one more caveat: caretaking can itself be addictive, according to Al-Anon and other sources.
In other words, my mother and my daughter are my cocaine. It's only too easy for me to get all wound up in care of them and forget to meet my own needs.
Today's reading from The Language of Letting Go by Melody Beattie ends with this resolution:
Today, I will pay attention to what I want and need. I will not discount myself.
That's great--but I got three phone calls from my mother's caregivers today, and one from her physical therapist, all expressing concerns about her and demanding my immediate attention.
She didn't eat any of her meals today, and she spit out her medications.
Meanwhile, I have a three-hour meeting for my work, a luncheon date with my youngest daughter, a long phone call from my daughter in rehab, and a dinner date with my husband.
Somebody tell me how in the midst of these conflicting demands I am going to "pay attention to what I want and need."
We are doing dementia and a full-time job, or dementia and the rearing of teenagers, or dementia and two or three volunteer services in the community, or dementia and all of the above.
Very few of us have the luxury of doing just the care and management of a person with dementia.
Since December 20, when one of my daughters went into rehab, I have been doing Lewy Body Dementia and bulimia and cocaine addiction.
First of all, there's just doing the learning and research on these particular illnesses.
Then there are the issues of where to get the best care: finding doctors, therapists, residential living centers--and getting my mother and daughter to these places and appointments.
Then the's the job of figuring out how to pay for it all.
And of course there's the need to visit my mother and my daughter, give them support and encouragement.
Finally, there's the need to care for myself--to find support and encouragement for me.
Oh, and also there are the daily ups and downs of these illnesses--every decision made yesterday will be changed today if my mother falls and breaks a bone or my daughter relapses.
And one more caveat: caretaking can itself be addictive, according to Al-Anon and other sources.
In other words, my mother and my daughter are my cocaine. It's only too easy for me to get all wound up in care of them and forget to meet my own needs.
Today's reading from The Language of Letting Go by Melody Beattie ends with this resolution:
Today, I will pay attention to what I want and need. I will not discount myself.
That's great--but I got three phone calls from my mother's caregivers today, and one from her physical therapist, all expressing concerns about her and demanding my immediate attention.
She didn't eat any of her meals today, and she spit out her medications.
Meanwhile, I have a three-hour meeting for my work, a luncheon date with my youngest daughter, a long phone call from my daughter in rehab, and a dinner date with my husband.
Somebody tell me how in the midst of these conflicting demands I am going to "pay attention to what I want and need."
"Life Is No Abyss"
It's Saturday night, and that means Lawrence Welk.
Tonight the rerun played happened to be from the 1950s, in black & white, when Lawrence was fairly young.
One of the featured soloists sang an old favorite:
Remember this--life is no abyss.
Somewhere there's a bluebird of happiness.
Somewhere, but not in the Reminiscence Neighborhood.
Rose fell and injured herself, Dorothy is bellowing wordlessly, and Sue is telling her to shut up.
Meanwhile, my mother, Evelyn, did not eat any of her meals today and refused her medications. Basically, she had a sleepy day, which is common with Lewy Body, especially after a previous day with lots of stimulation.
Mom always enjoys breakfast, her favorite meal of the day: oatmeal with brown sugar, scrambled eggs, bacon, and orange juice.
But today she sat slumped forward in her wheelchair, eyes closed, too deeply asleep to eat.
When the staff urged her to eat, she yelled, "Leave me alone!" She refused to take her medications.
She was returned to her room, and when they placed her on the toilet, she yelled "Get the hell out of here." They transferred her to her recliner, where she again yelled at the caregivers to go away and leave her alone.
At lunch time, she was wheeled in to the dining room but still refused to eat and sat with her eyes closed in deep sleep.
I arrived and tried to talk to her. She did not open her eyes and responded only in slurred words. I managed to get her to the toilet, where it was clear her Depend had not been changed for 3-4 hours.
As we passed her black desk with the candy jar on it, she said, "I want a mint!"
I unwrapped one and gave it to her, but it lay in her curled hand. She couldn't even put it in her mouth.
I took her to the dining room and got her to drink a V-8, then started her on her lunch of pasta with shrimp.
I called the medications nurse with the news that she was now awake enough to take her meds.
"Her private caregiver will be here at 2 pm," I said, leaving at 1:50 pm and feeling good that she was eating a bit and about to take her medications.
But I got two more phone calls that afternoon: she had not eaten any more after I left, and when Bethlhem urged her to take her meds, she spit them back at her.
So I showed up again, shortly after 6 pm, and found her again in a very deep sleep.
I also found that her 2 - 10 pm private caregiver had neither arrived nor left me any message that she would not be able to work today. I called her and found her home with a stomach flu.
I decided that first of all Mom had to take her meds, so I found the nurse, got the meds, and made her swallow them all in applesauce. This took quite a while since she would only open her mouth a small crack.
Realizing that she was too sleepy to eat a warmed-up meal, I took Ensure out of the refrigerator.
I poured some in a cup and tried to get her to drink it. Holding the cup to her lips, I could hardly get her to take some sips and then swallow.
I switched to a straw and held the cup in her lap; for thirty minutes she took tiny sips. The cup of strawberry Ensure was about half empty.
Finally I decided to call it a day; I changed Mom into her nightgown, removed her false teeth, and brushed her eight remaining lower teeth.
I took her into the family area to watch Lawrence Welk.
On the way out of the Reminiscence Neighborhood, in the activity room, I noticed a white board with the following messages:
H-a-p-p-i-n-e-s-s
V-i-c-t-o-r-y
Word for today:
CHEERFUL
Tonight the rerun played happened to be from the 1950s, in black & white, when Lawrence was fairly young.
One of the featured soloists sang an old favorite:
Remember this--life is no abyss.
Somewhere there's a bluebird of happiness.
Somewhere, but not in the Reminiscence Neighborhood.
Rose fell and injured herself, Dorothy is bellowing wordlessly, and Sue is telling her to shut up.
Meanwhile, my mother, Evelyn, did not eat any of her meals today and refused her medications. Basically, she had a sleepy day, which is common with Lewy Body, especially after a previous day with lots of stimulation.
Mom always enjoys breakfast, her favorite meal of the day: oatmeal with brown sugar, scrambled eggs, bacon, and orange juice.
But today she sat slumped forward in her wheelchair, eyes closed, too deeply asleep to eat.
When the staff urged her to eat, she yelled, "Leave me alone!" She refused to take her medications.
She was returned to her room, and when they placed her on the toilet, she yelled "Get the hell out of here." They transferred her to her recliner, where she again yelled at the caregivers to go away and leave her alone.
At lunch time, she was wheeled in to the dining room but still refused to eat and sat with her eyes closed in deep sleep.
I arrived and tried to talk to her. She did not open her eyes and responded only in slurred words. I managed to get her to the toilet, where it was clear her Depend had not been changed for 3-4 hours.
As we passed her black desk with the candy jar on it, she said, "I want a mint!"
I unwrapped one and gave it to her, but it lay in her curled hand. She couldn't even put it in her mouth.
I took her to the dining room and got her to drink a V-8, then started her on her lunch of pasta with shrimp.
I called the medications nurse with the news that she was now awake enough to take her meds.
"Her private caregiver will be here at 2 pm," I said, leaving at 1:50 pm and feeling good that she was eating a bit and about to take her medications.
But I got two more phone calls that afternoon: she had not eaten any more after I left, and when Bethlhem urged her to take her meds, she spit them back at her.
So I showed up again, shortly after 6 pm, and found her again in a very deep sleep.
I also found that her 2 - 10 pm private caregiver had neither arrived nor left me any message that she would not be able to work today. I called her and found her home with a stomach flu.
I decided that first of all Mom had to take her meds, so I found the nurse, got the meds, and made her swallow them all in applesauce. This took quite a while since she would only open her mouth a small crack.
Realizing that she was too sleepy to eat a warmed-up meal, I took Ensure out of the refrigerator.
I poured some in a cup and tried to get her to drink it. Holding the cup to her lips, I could hardly get her to take some sips and then swallow.
I switched to a straw and held the cup in her lap; for thirty minutes she took tiny sips. The cup of strawberry Ensure was about half empty.
Finally I decided to call it a day; I changed Mom into her nightgown, removed her false teeth, and brushed her eight remaining lower teeth.
I took her into the family area to watch Lawrence Welk.
On the way out of the Reminiscence Neighborhood, in the activity room, I noticed a white board with the following messages:
H-a-p-p-i-n-e-s-s
V-i-c-t-o-r-y
Word for today:
CHEERFUL
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