Friday, March 31, 2006

Plan C--Or Is it Plan D?

I had to go to Ocean View to dress my mother again, arriving this time at 7 am.
When I got there she was wide awake in bed and had removed her flannel nightgown, lying naked in her bed and wanting to get up.
By the time I got her dressed and straightened up her room and left at 9:30 am, I had decided we couldn't have any plan where some mornings she had a private caregiver and other mornings she depended on the Ocean View staff. It would be too confusing.
I will have to count on Ocean View to get her up, dress her, and take care of her all mornings until 2 pm, except on Sundays, when I dress her and take her to church.
I called the agency to ask Ana to ask Connie, whom I had just fired from her evening shift as of April 1, to keep the evening shift after all, working 2-10 pm Tuesdays and Thursdays and 5 pm-11 pm Mondays and Fridays, and 5 pm to 5 am on Wednesdays (to total 40 hrs. per week).
That way at least Mom's evening routine will stay the same, and I can relax knowing Connie had arrived.
The only worry is what to do with Mom's energy after breakfast, from 9 am to noon, and after lunch if she was not sleepy. The Ocean View staff will try to make her sit in the group activities in the common area, throwing a ball or listening to a story or maybe singing.
But Mom hates that. It reminds her that she is institutionalized with other people, many of whom are even less mentally competent than she is.
I can try to get them to let her go back to her room and sit in her recliner in front of her tv, where she likes to spend most of her day, napping and chatting with a caregiver. But with no caregiver, they will be nervous about leaving her there, thinking she might try to slide out of her chair or do something else unsafe. They also believe she should join in with the others in the group activities, even if she doesn't like them.
Ana called Connie, and Connie agreed to continue to work her normal shift.
I went to see her in the evening to confirm this plan.
The week ends with the third new plan for caregiving work hours.
And with me again scheduled to work tomorrow morning at 6 am, as well as Sunday.

Thursday, March 30, 2006

Crisis: Losing Jona

Ana called from the agency Wednesday evening to say that Jona would not be coming to work today because of a doctor's appointment.
I agreed to work her shift, arriving at 6 am to dress my mother and get her to breakfast.
When I walked into the room, she was sleeping sweetly while Stephen Foster's "Beautiful Dreamer" filled the air. Kim, the night caregiver, had put the Reader's Digest Quiet Music for Quiet Listening into her CD player.
"Beautiful dreamer, wake unto me! Dew drops and roses are waiting for thee...."
I chatted with Kim, then took care of Mom and handed her over to the Ocean View staff at 8 am with suggestions for how to manage her morning, greatful that Connie would be arriving at 2 pm.
But in the evening, Ana called again. I hate seeing her name on the face of my cell phone; it's always bad news, that a caregiver will not be showing up. She said that Jona will not be returning to work until after her baby was born in June. The doctor whom she saw today ordered her not to do any lifting or heavy work--to quit her job.
What a shock! On Monday I had painfully reduced Jona's hours to four per day, on Tuesday she had declined to work such limited hours, and on Wednesday we had arrived at the happy conclusion that she would keep her eight-hour shift until the end of June.
But that afternoon she had gone home and helped her mother, as usual, with the lifting and handling of her 16-year-old brother, who is confined to a wheelchair with cerebral palsy. In doing so, she had strained herself accidentally and caused bleeding, perhaps loosening the baby's placenta. The doctor had ordered no more lifting at all, either with her brother or by working with Mom.
"What do you want me to do for next week?" asked Ana. "Connie can't work the morning shift. Do you want me to hire someone for it? Racquel might be able to do it on Thursday and Friday mornings, and Connie could work on Tuesday and Saturday mornings for eight hours and maybe work two or three evening shifts a week."
"I don't know, " I said for the second time in two days. "Let me think about it."
Thursday evening ends with the prospect of suddenly never seeing Jona again, who has cared for Mom six days a week since October, 2004. Perhaps she will come by after the birth of her baby.
Should I hire someone to replace her? Or should I patch together a plan using Racquel and Connie, Mom's weekend and evening caregivers, for the morning shift? Or should I just hand Mom over the the Ocean View staff for the morning shift?
Jona told me yesterday that the Ocean View staff has its heaviest workload in the morning hours 6-9 am, getting the 31 residents up and dressed and to breakfast. She was saying that it wouldn't be a good idea to ask them to give her a shower then--it would be rushed.
I wish I could get Mom's care settled once and for all.
Meanwhile, I have to be there early tomorrow morning to substitute for Jona.

Wednesday, March 29, 2006

Compromise Solution

In the morning I was clear on one thing: we could not cut Mom's private caregiver hours from 16 hours a day to zero in one big jump.
I called the agency and said we would like to keep one of the caregivers for eight hours per day and lay off the other caregiver. I thought I could fill in the cracks around giving up one caregiver.
My preference was to keep the evening caregiver so that her daily bath and bed routine would continue to be given by a person she knew well. But I felt that Connie, the evening person, could get another job easily, whereas the morning caregiver, Jona, is six months pregnant and could not easily find another job with as little lifting and hard work as this one.
In addition, Mom has more energy and needs more direction and companionship in the morning. She is more likely to sleep in the afternoon and early evening, so she may be able to get along without a private caregiver in those hours, except that her bath and bed routine will be disturbed. Ocean View offers a maximum of four showers per week, and these might end up being done by different people every day, including by men. Mom would not like that.
I asked the agency to retain Jona (the morning caregiver) and reassign Connie.
Ana at the agency called to tell me that Jona had accepted this plan.
I was happy when I saw Jona at 1 pm because things are resolved favorably. I like Jona a lot. She is so kind and caring with my mother, and I had promised her she would be able to work up until her baby's birth.
Now I can keep that promise and perhaps transition to having no private caregiver when she takes time off for the birth of her baby at the end of June.

Tuesday, March 28, 2006

Just Saying No

It was difficult to break the news to Jona and Connie that I needed to cut back their hours to four hours each. During many months of 2005 they had each worked twelve hours per day, but I had cut it to eight hours and now to four hours.
Jona, the morning caregiver, had said she would not be able to work only four hours; she would ask the agency for a different assignment.
Connie, who works evenings, said she would be able to work only four hours because she has another job nearby for 8 hours on Mondays, Wednesdays, and Fridays. With the two jobs, she could make ends meet.
So I went to bed hopeful that I would be able to retain at least Connie, perhaps both of them.
But today I got a call from the agency: neither Connie nor Jona will continue to work with my mother for only four hours per day, and Racquel, the weekend caregiver, will not be able to work daily during the week because she has another job.
"Do you want us to look for someone else for the job?" asked Ana at the agency.
What a scary prospect: hire two new people working four hrs. per day each (if anyone can be found to show up reliably for those hours), train them, and bond with them--at a time when I need to cut back on private caregiver hours.
Or cut back from sixteen private caregiver hours per week to zero hours, cold turkey. That would mean training Ocean View caregivers to get Mom up in the morning and dress her, care for her during the day, and bathe her at night.
It would help her financial picture greatly, but it would also entail me doing a lot more hours of caregiving as she adjusted from having a full-time personal caregiver to having only the overworked staff of Ocean View. More hours for me was really scary.
I didn't know what to do. I told the agency I would call them back in the morning.

Monday, March 27, 2006

Financial Reality

When Mom sold her house for $450,000 early in 2002 at age 83, I figured she was set for life financially, with that amount in CDs and her monthly retirement income of $4,700. And I figured each of her four children would inherit a nice amount.
But my brother Bill said, "She will go through it in medical bills before she dies. Most people do." He's a surgeon, and in following elderly patients, he has seen it happen.
Nevertheless, my siblings and I set her up in a nice residence, first for independent living, later for assisted living, and now for assisted living for the mentally impaired because of her dementia.
She didn't use much of her capital until she fell and broke her hip in August, 2004, and even then the cost of her care in a skilled nursing facility approximately equaled her income.
The cost went up when we decided to move her out of the grim SNF with its hospital-like atmosphere into a much nicer assisted living residence. That was about $7,000 per month for the maximum level of care, which she needed--incontinence care, bathing, dressing and undressing, being taken to meals and put to bed.
But when I realized that she was getting out of her chair or bed and falling, I learned that assisted living facilties are not licensed to use any form of restraint. The only way to keep her in that residence safely was to hire a private caregiver to attend her and verbally restrain her. That's when the costs skyrocketed.
We paid $14 per hour, at first during the daytime hours (8 hrs. supplemented by a 2-4 hr. visit from me or my sister), then also 6 pm to 6 am, finally 24 hrs. per day.
The alternative was to put her back into a SNF, where she would be strapped into a chair during the day and strapped into a hospital bed at night (or kept in a bed with full-length bars raised instead of a restraint over her waist. (Assisted living facilities are not licensed to use any form of restraint.)
All this care kept her safe--and it even saved her life when she had an allergic reaction at 1 am in June, 2005, and the caregiver was able to respond and call 911 when her swollen tongue and throat had blocked her breathing.
Cutting back on care
In January I reduced her care to 16 hours per day in order to slow the drain on her financial resources. I counted on her being less able to climb out of bed at night than she had been over a year ago and also on her understanding the rules of her life by now--that she can't get out of bed in the night alone.
But still she was angry with me--she was used to having someone at her side to respond to her fears and dreams during the night, as well as to give her a sip of orange juice, put soothing music on the CD player, and change her Depends.
She told anyone who would listen, "Anne's trying to kill me." That was her explanation for why I had removed the night caregivers.
Financial Review of 2005
During this past week in order to gather Mom's financial records to send to the kind CPA who does her taxes, I entered her income and expenses into Quicken.
The results were shocking. Her income was excellent--$83,000. But we had paid $85,000 for her room, board and care in assisted living. And we had paid $105,000 on top of that for the private caregivers.
All this because of her dementia--to keep her from getting out of her chair or bed and falling, and to give her someone to dress her, tend to her, and talk with her. This one-on-one relationship is excellent for her mental health--it keeps her depression, anxiety, and hallucinations in check.
But at this rate her money will last only one more year, and it looks as if her health may last several more years.
Life Expectancy--A Guessing Game
When she had her broken hip, Bill said that 50% of those her age who break a hip die within a year. Based on that statistic, we spent money freely to give her the best possible arrangements for her last year or two.
But now her health has stabilized, with all this excellent care. Her doctor says that at age 87 one's life expectancy is four years. How Lewy Body Dementia will affect that time period is anyone's guess.
At any rate, we now need to make sure her remaining $200,000 will last for several more years.
Further reductions in caregiver hours
My conclusion is that we have to give up the private caregivers, gradually. She now has 16 hours of care per day: one caregiver 6 am to 2 pm, and one 2 pm to 10 pm. I decided to tell each of them that we have to cut back to four hours in the morning and four hours in the evening.
That would mean that she would still be dressed and started in the morning by a private caregiver, 6 am to 10 am, and she would still have her evening routine including daily bath unchanged, 6 pm to 10 pm.
I broke this news to each of her caregivers, and I also told them that I would understand if they decided they could not work only four hours. After all, they only get paid $12 per hour after the agency takes $2 per hour, so that means they commute and work 8 hours for only $96. Commuting and working 4 hours for only $48 might not be worth their time, but I hope they each will continue with her. She knows them and is used to their care.

Thursday, March 16, 2006

A Day of Neglect

Mom had a tough day today. Her afternoon caregiver, Connie, was scheduled to work 2 pm to 10 pm but had an emergency with her 13-year-old daughter and couldn't come.
When I got the call at 1:30 pm, I didn't ask for a replacement. Instead I decided that Ocean View staff members could look after Mom until I arrived at about 7 pm to give her a shower.
I knew there was a St. Patrick's Day party 2-4 pm, then dinner. I called Ocean View to let the staff know that Mom was in their care 2-7 pm.
At 2:30 pm I almost went over to check on Mom, but then I stopped myself. Instead I prepared for the 4:30 pm community meeting I attended today.
At 6:30 pm I got a call from Bethlhem, the lead caregiver, asking whether I was coming and whether she could take Mom back to her room and leave her. She didn't say that Mom was so frustrated with not being allowed to return to her room after dinner that she was crying, but Mom reported that later.
When I arrived at 7:15 pm, Mom was in a hysterical state of anxiety. Her cheeks were flushed, her look bewildered. Her breathing was heavy wheezing. She said she had been expecting me all day, but I didn't come.
Then she launched into a tale about how mean "she" is. Mom can no longer tell her caregivers apart; they blend together in her mind.
"She wouldn't let me go back to my room. 'I don't give a damn' she said."
"She shouldn't say that!" I answered. "If she does that, I may have to fire her."
Mom liked that idea.
After listening to her tale of woe (caused by my decision not to call in a substitute), I gave her a shower and dressed her for bedtime. Then I found the musical "Annie" on television and set her up to watch it on tv until the Ocean View staff came to put her to bed.
When I left, she was cozy and content. However, this episode demonstrated how valuable the caregivers are. She thrives on having them with her to converse and to attend her needs.
As soon as I try to save money by not having the caregivers with her, she panics. Their absence causes a change in her schedule, and that creates more panic.

Note: It would be better to have no private caregivers than intermittent caregivers. One day full care, the next just partial is too confusing for her.

Wednesday, March 15, 2006

Not Funny

I'm not usually tempted to crawl into bed and pull the covers over my head at 5 pm, but it happened today.
It wasn't a bad day really--just a doctor's appointment for Mom and a birthday luncheon for her and my daughter Roz, with a few other errands tucked in the edges.
As we were finishing lunch, Roz ran outside to put more quarters in the parking meter for her car. That left Mom and me and Roz's friend Malina, who is visiting southern California while on spring break from college in New York City with Roz.
Mom was dressed elegantly and her hair had been done on Monday--all in all, a suitable family matriarch, to all appearances.
As we were talking, she mumbled something about a sweet little kitty, I thought. I didn't quite hear it.
"What did you say?" I asked.
"They're afraid I'll show them my sweet little titty," she repeated.
Silence. There we were at the nice seafood restaurant, Mom and I and Roz's nice new friend from Barnard College.
"Disinhibition," I said, finally. "That's an example of what I was telling you about." Fortunately the subject of Lewy Body Dementia and disinhibited speech had come up before in my conversations with Roz's friends over the last six days.
"Oh, I understand. It's not a problem," Malina said.
"I guess I shouldn't have said that," Mom then commented, noticing that something was wrong.
"No, you shouldn't have," I said.
The moment passed. Roz returned, but I didn't mention it to her. She had been so brave, trying to engage her grandmother in conversation.
"How are things at Ocean View?" she had asked. "How are your friends doing?"
"Oh, same old thing--boring," Mom had said. A pretty good answer. But she didn't have much to say to the second question.
I could have explained: she doesn't have any friends. She is surrounded by the same people every day, but none of them has a real capacity for friendship. That would require several abilities: to listen, to retain what someone has said, and to focus their attention on another person's words and feelings.
When lunch was over, I drove Mom back to Ocean View, but I was rethinking her future.
I can tolerate things like wiping her mouth and chin in public or fielding random comments when she tries to participate in a conversation, but I reached my limit today. She is no longer fit for polite company.
From now on, she will be confined either to the floor she lives on or to the immediate family. I'm not sure that grandchildren (except for my own) will be included in that category.
One of the tragedies of Lewy Body is that the patient's mental condition varies from day to day and sometimes moment to moment. Lucid to looney. Unlike persons with Alzheimer's, who talk less and less, LBD people talk as much as ever. They just don't have a functioning frontal temporal lobe, which screens speech and behavior for social acceptibility.
Up until today, my general plan has been to keep her life as normal as possible. I take her out to attend church, to dine at restaurants, to share family parties, and even to attend social events such as P.E.O. I introduce her to my friends and my children's friends.
But I need to cut back. I need to protect myself. I need to recognize that she belongs in an environment where dementia is expected and understood.
The biggest hazard I see on the horizon is taking her to P.E.O. meetings. Because I've already committed to taking her to them, I will give her one more chance, but I will watch her like a hawk. If she makes any mistake like the one today, that will be her last P.E.O. meeting.

Tuesday, March 14, 2006

Sleepy Day

Today when I arrived at 2 pm, Mom was sound asleep in her recliner and unrousable.
I talked with her caregiver for a few minutes, but Mom never said a thing.
Then I asked Mom to wake up to sign her name on three birthday cards. She talked to me but did not open her eyes.
"Open your eyes, Mom, if you are talking to me," I said.
She answered but did not open her eyes. Somehow we got the cards signed in a wide, loopy version of her signature.
I told her I was leaving and said goodby.
Thank goodness for a few sleepy days interspersed with the challenging days.

Monday, March 13, 2006

Overdose of Caregiving

I couldn't drag myself over to Ocean View Assisted Living today.
On Mondays, Wednesdays, and Fridays I try to cover the 2-5 pm period when Mom has no private caregiver. I usually arrive about 2:30 pm, figuring she will sleep in her chair for a while after Jona has left.
But today I didn't get there until 3:30 pm. Nothing in particular delayed me, except the thousand and one things I need to get done, things that didn't get done while I was out of town for a week and while my college kids have been home for spring break.
I arrived to find that Mom had wriggled down in her recliner with her back on the seat of the chair and her legs hanging off the footrest, but she was okay.
I took her to the toilet, mainly to change her Depend, which was sodden. She didn't want to walk there using her walker--the wheelchair is easier--but I insisted, and she laughed.
"Things are always funny when we are together," she said, remembering the hysterical laughter last night.
Nothing seemed funny to me, though. I was focused on getting to Sav-On to buy more Depends and other products, then getting her back so I could leave as soon as possible, maybe by 4:30.
Every simple activity seemed to take so long: I couldn't slow down to the snail's pace of life at Ocean View.
"You didn't put powder in," she said, as I pulled up her Depend. Today this complaint was not funny.
After I parked the car at Sav-On, I said what I always say: "I'll be right back."
Mom said what she always says: "I'll time you." Today she added, "It will probably be an hour."
Somehow this didn't turn into good-humored banter. It just felt like another complaint. I can get in and out of Sav-On in ten minutes on a good day, and I usually don't mind the shopping.
But today my mood was low. Instead of offering any kind of gratitude, Mom times me on how fast I can do the shopping.
Actually there was another factor weighing me down. Earlier today I had agreed to take time on Thursday morning to drive a wheelchair-bound older friend to Fantastic Sam's to get a haircut. I should have said no when she called with this request, but she had never asked any favor before and, taken by surprise, I didn't know how to refuse her.
After hanging up the phone, I told myself, "Great, Anne. Why don't you make a career of this? Driving older people on their errands. While all your other work doesn't get done, you agree to do things like this. You do elder care for free while your husband goes to work and earns money. Congratulations, stupid."
"You took 25 minutes," Mom reported when I got back to the car. I threw some of the items into the car angrily and drove back to Ocean View, where I unloaded Mom from the car to the wheelchair, hung all the plastic bags off the handles and piled two of them on her lap. We went up the first elevator, around the U-shaped building, up the second elevator, and to her room.
I didn't offer Mom a bathroom trip. Instead, after unloading the items, I started her on walking to the dining hall with her walker. She did well, and I left.
Diagnosis: overdose of caregiving.
All the books--like The 36-Hour Day--say to take care of yourself. Don't get too worn out.
Instead I put in 15 hours yesterday and agreed to drive to Fantastic Sam's on Thursday.
The result is not good.
Resource: The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss Later in Life by Nancy L. Mace and Peter V. Rabins (New York: Warner, 1981).

Sunday, March 12, 2006

Birthday Giddy

Because today is Mom's 87th birthday, we had lots of plans. In addition, her weekend 2-10 pm caregiver, Racquel, had a sister visiting from the Philippines and took the weekend off.
As it turned out, I was with Mom constantly from 6:30 am to 9:30 pm. By the end we were both giddy.
Power struggles, role reversal--everything was funny.
For example, brushing teeth.
"Do you brush them or do I?" I asked, not remembering caregiver details.
"You do," she giggled.
"Oh yeah? I think you can just brush them yourself," I said, trying not to laugh.
"You're making me pee in my diaper," she warned helplessly. "Now we have to change it again."
"Oh, all right," I said, the complaint in my voice setting her off again.
"You didn't put any powder in," she complained, knowing she was being demanding.
"You don't need any more," I countered.
"I always make them put it in. What if they say 'Why should I, if your own daughter doesn't?'"
"Well, that's just tough," I answered. "I'm not putting in any powder." And my refusal sent us both into hysterics again.
"Okay, time to go to bed," I said, trying to recover the voice of authority.
"I'm not ready for bed," she said. "I usually sit in the chair and watch tv."
"It's 9 0'clock," I said. "The time when you always go to bed."
"But I was planning to stay up until 10," she countered, giggling at herself for sounding like a six-year-old.
"Well, I'm going to go home and go to bed, so you should be in bed before I leave," I argued. "You'll just fall asleep in your chair, and then someone will have to get you into your bed."
"Oh, all right. At least it's not a raggedy nightgown tonight."
"Oh yeah, poor you. But we got rid of those ragged gowns. We bought two new ones today."
"Yes," she admitted.
"You've had a nice day. You went to church, out to lunch, home for your birthday cake, opened presents. And everyone at church sang Happy Birthday to you."
"It was embarrassing."
"Not grateful, are you?" I commented sarcastically, as we both started laughing again.
"No--you told them I was 87."
"It's a big deal to be 87. Most people don't make it that far."
"I suppose...."
Somehow she ended up in bed, tucked in, and I ended up running for the exit door to the secure floor, punching in the code to leave.
We made it through the big birthday with enough fun and attention to last until next year, I hope.