Renewed

I'm feeling fairly renewed. Today is Friday; respite care ends on Monday. The first couple of days were emotionally exhausting; the last few days have been kind of renewing. There was an emotional loss last week that was a huge big hole in my life. Flash backs of extraordinarily painful feelings of grief... Deep, gut-wrenching stuff...

On Monday, I called Jeff -- my meditation coach, mentor, teacher, friend. He helped me feel the pain, face it, and move through it. I forced myself to respond to my need for a break from caring for my mother rather than her need to be here at home and cared for by a member of the family.

Most of the time she doesn't know who I am. When she was first diagnosed, I thought that when she didn't know me it would kill me. It doesn't or hasn't. Sometimes, she thinks I'm her sister; sometimes, her mother; almost never her daughter. Strange. Really strange. Most of the time she seems to know my name, although she talks about Barbara in the third person. "This is Barbara's," she will say to me and I will say, "Yes, I'm Barbara."

"Sure," she says with a tone of voice that suggests she doesn't believe it. When I go to get her Monday, what will I see and how will she respond?

Rocky Start

I was so optimistic that respite care would be good for both Mother and me. We had a rocky start.

Today is Sunday. Mother has been in respite care for six days. I stopped in Thursday during the dinner hour. She was at a table on the memory-impaired floor. I had thought they were taking her downstairs for meals where she could socialize with those who were not late stage dementia. She was "helping" two women who could no longer eat by themselves. Their heads were down; there was no communication at this stage in their disease. At first, I found it fairly hard to watch. It is my future. I was overly curious at watching my mother. I was reassured by the care managers I saw there. The sleeping disinterested person had been replaced by smiling faces, saying kind words to those on the floor.

Mother was clean and dressed, but the light was gone from her eyes. She seemed depressed to me. I told her again that I was working hard, which was true. That I had a meeting out of town the next day, which was true.

The first night I visited and found the sleeping attendant; she begged me to take her with me. She didn't notice the sleeping attendant; I did.

"I don't want you to just leave me here," she said. Going to assisted living in the early stage was something she simply refused to do. That's why I built an addition for her and for my dad to live with me. That first night I promised her it was temporary; that I needed to do it for a couple of weeks while I worked very hard. As I tried to explain it to her, I was so aware of the limitations of providing comfort through explanations with the memory- impaired. It is so difficult to try to calm and reassure those who can't remember and who are losing cognitive skills.

I got eight hours of sleep Friday night without a mild sedative. Maybe a first in a year and a half... and I felt rested yesterday when I awoke. I wanted to go visit my mother, but I resolved yesterday to do what I believe I need to "restore and renew." I am going to try to stay away despite the guilt I feel.

If I visit her, I will see her sadness at being where she is. I have to believe for my own healing that she will be cared for. Not the way I might care for her... but my way of caring for her has made me a basket case. There may be a lesson there, too.

Coincidentally, there was a story called "Movie Night" in the Washington Post magazine this week. It was good for me to read this. Friends gather for movie night with an ALS patient for an evening of compansionship. Yes, her disease is highly advanced. But, her care network is also extensive.

One brother takes care of the finances; another brother helps with lawn care. Three friends who are master gardeners help with the yard. Six caregivers are on the payroll.

"'One of the nice things about her arrangement is that her family and friends are nearby and emotionally supportive without having to be involved in mundane things like showering or toileting,' says Vern Juel, who is Margy's neurologist. 'It seems there is a lot of stress the develops when that boundary comes down, and unfortunately most people's resources are such that they have to rely on their family for those things.'"

Wow. Maybe I'm not crazy.

I am an only child. My father, who was my mother's primary caregiver, died one year ago. I am doing it all. I use a wonderful day care program provided as a fee-based county service four days a week. But I also work to pay for my own health insurance, mortgage, and lawn care; I do not have the option of not working. I was hoping respite care once or twice a year could be one of my supporting elements. Now, I don't know. Today, I am not ruling respite care out despite my mother's personal distress at being there. I don't know how I will feel about it tomorrow or next week. When I see her, I have learned that I will feel a tremendous sense of guilt.

If I back off a little bit, will she adjust and become her happy, sweet self in that environment? Or, will she become angry, distrusting, and depressed? I don't know. I know I need this time away and the only way I may be able to manage it is by not seeing her for the next week.

PM of Day One Respite Care

I sent the following email:

***

Never mind what I said about not complaining.

The evening care manager on the 3rd floor was asleep from at least 7:30 to 7:50 p.m.. Sound asleep. I said, "Excuse me" a couple of times and she didn't awaken. Finally, I touched her arm to awaken her. She mumbled something about being on her break. Before that she was on her cell phone. Wonder what that was?

Mother is begging me to come home, of course. It is killing me. I'll try one more day, but I may have to take her out of there. I was very much bothered by the sleeping care manager.

***

The sleeper was fired, but I couldn't feel good about it. In the meantime, I decided that I needed to decompress big time. I said I would be coming to visit, but I decided to stay away for a couple of days. I needed to spend the time on work projects.

***

I wrote:

Thank you. I know my intrusion yesterday morning was a rude welcome back from your weekend. I don't like to be responsible for someone losing a job, in part because the replacement may end up worse and that really scares me!

I know you well enough to know that you do have high care standards and I really want to have confidence in (the company). It may take a little while for me to get my confidence in (the company) back, but I'm trying to act like a grown-up.

P. S. I'm trying to stay away so that Mother's acclimation can work. I'll drop by very briefly this evening on my way to a meeting. Of course, she begs me to take her and that KILLS me. I am shocked at how much it hurts. I've always been an independent cuss and her importance in my life is shocking to me.

Respite Care

I took Mother to assisted living for two weeks of respite care this morning. I swear I think I'm having a nervous breakdown.

For the last two weeks, I have been a basket case crying at the drop of a hat. It's almost a year since my father died making me Mother's sole caregiver. My sense of loss is so enormous and I can't stop sobbing. My heart is broken all over again at the loss of my Dad and at the vulnerability in my Mother's face when I left her at home.

I left her there for an exercise class. The care manager stayed with her while I moved her things in from the car. I saw a sweet old couple on the third floor where the dementia patients stay. I had seen them Saturday when Mother and I went to a barbecue there. She seems to be the dementia patient. Of course, in my current state I thought of my father and his concern and care giving for my mother. Sometimes I think that the stress of caring for Mother may have contributed to his death. Other times I think that caring for my mother also gave him the will to live.

I have been thinking also about how very, very much I will miss my mother when she dies. The pain I am feeling with that thought is horrendous, just awful.

I have a new contract that will require two business trips each year. Fortunately, the contract is only for three months; I don't think I can renew it because of the travel. I am so worried and anxious about my mother and her care that I don't think I can do it. I'm doing the respite care... just in case my contract continues. If I do two weeks to let the staff get used to Mother, then I can have her come back for shorter stays throughout the year.

How much my life of independence has changed in the last year! It is astounding.

Aroma of Incontinence...

I was awakened this morning by the distinct aroma of incontinence.

I usually ask myself: Is it? Yes, I think it is. Time to start the laundry machine, get the rubber gloves, etc.

The second fragrance of incontinence began last week. Oh sure, I knew it would come. I had hoped to have some kind of on-site help by that time. But, of course, I don't think I can afford it and I cherish what little privacy I have left.

It looks like this is going to be about a 5 to 6 laundry load day. I still have a small washer left over from my days of taking care of myself and occasional visitors. The question I always ask on days like today is: Who will take care of me?

Even if I could afford long-term care insurance, what is the guarantee that long-term coverage will not go the way of pension programs? Do I really believe that these policies will be in effect 20 years from now?

But, thank heavens today is a holiday! I don't have to do 6 loads of laundry and show up in someone's office making sense.

A well-intentioned soul has said to me from time to time. "You are not alone." Wanna bet. Ain't nobody but me turning on that laundry machine. Someday maybe I'll get the courage to say what I think. Naw, some things are best left unsaid. That's why I have the space!

AlzCaregiving36-7

36-Hour Day

Credit to whomever it was who wrote a book titled, something like the "Thirty-six hour day" referring to caregiving for Alzheimer's patients.

Although I have been thinking about this for some time, I decided to start this without much research or evaluation... Very uncharacteristic for me.

I am a consultant who runs a home-based business. My real job is caring for my 88-year-old mother, who was diagnosed with dementia, probable Alzheimer's in October 2000. Most months I manage to pay the bills and that is my goal -- nothing more for what I'm guessing will be at least another 5 to 7 years, assuming my mother's life span follows the pattern of her family and that of dementia/Alzheimer's.

Why am I beginning this blog now? Perhaps, it's reading about Supreme Court Justice Sandra Day O'Connor stepping down from the court to care for her husband who apparently has dementia. Perhaps, it's the approaching first anniversary of my father's death, 8/11/04, when I became the primary caregiver for my mother. Perhaps, it's the recent death of my mother's younger brother, who was also close to my father. Perhaps, it's all or none, I'm not sure.

In any case, I expect to post things I am learning as I learn them. There are so many reports of the sadness and devastation of this disease or diseases and I don't intend to claim otherwise on that issue. Simple day-to-day functioning is impaired in so many ways. But there are things I am still learning from my mother...

For example, in 2000, as she was diagnosed, I asked her: "Are you afraid? Are you angry?" She was 83 and I was devastated. I had not yet reached an operational peace with it.

"No," she said. "I remember mother (yes, my grandmother) ... taking care of her and it was the most important thing I ever did. It could be worse. It could be cancer with all of that pain. So, it's really not so bad after all."

Now, with that...don't get me wrong. There are days when I am a raging maniac at this dear sweet woman who has turned my life upside down. I expect to share some of those rages and what I am trying to learn about myself in the process.

Another reason I'm writing ... the worst is yet to come, folks, as the baby boomers age and as incidence of dementia increases -- the worst is yet to come. Will the "me" generation be able to cope with this? Chances are they will. Their first move will be to try to buy their way out and that may work for many. But, those like me, for whom writing a check for caregiving is not a financial option, will have to find different models. I guess that's what writing about the experience is an attempt to convey also.