Sunday, August 28, 2005

Scary tale from Support Group

I missed the first meeting in August of my Alzheimer's Support Group -- a wonderfully supportive gathering of men and women who have been and are sole and/or primary caregivers. This is the second group that I've been involved with. My first one was a new group begun by a wonderful former geriatric nurse. When she decided to leave as leader, the group began a series of downhill runs with individuals who verbalized a commitment to Alzheimer's patients and care givers, but whose behavior suggested a commitment to something else ... anything else.

Both groups have the sponsorship of the Alzheimer's Association of the National Capital Area. My current group is one of the more established groups and despite the recent departure of the former leader continues to the great benefit of all of us who attend. The group meets during the day at a local church. As one might expect, those who attend are mostly retirees. But many are also alumni. They have been through caregiving, but continue to attend to the great benefit of those of us who are now actively involved in caregiving.

They know the good psychiatrists for geriatric patients; the internists who can relate to dementia patients; the range of medications for psychotic episodes; the care managers who can for a fee help with a range of needed services, etc. etc. The facilities that will take Medicaid if you're close to needing that. And on and on. Perhaps, most importantly, they can look at you and say with kindness and credibility... "You are important, too. You have to take care of yourself or you will be doing no good for anyone."

I can't say enough about the value of people who have been through the experience and their willingness to still stay involved for the benefit of those of us who follow. But, I digress.

One of the members of the group, Linda W, has been taking care of her boyfriend/partner. His dementia has manifested itself with diminished communication skills and anger directed at Linda since she is the one who often needs to say something needs to be done or not done. Not an easy assignment and as she has said, "I do it because I didn't see anyone else stepping forward to do it." Not siblings, etc. She has lived in her house and he in his house.

Until, Jack didn't return from his evening walk. "Went missing." The terror of all Alzheimer's care givers. Linda launched a search. Notified friends and relatives to help. Put up posters. Worked with the local police. Notified the media, which ran a photo.

Lo and behold, about 2 days later he was found asleep on the street at least 12 miles from his home. No one will ever know the story, as Linda points out.

But, she moved in and began interviewing for a live-in caregiver. A couple of weeks after the incident she was able to find one she thought would work.

One of the things Linda suffered, which is what we all suffer, is guilt. Guilt that you didn't see "it" coming whatever "it" is. Freedom is one of the great losses that dementia patients sustain. The freedom to be, to come and go as he or she pleases, to eat what and when he or she wants. Those things all disappear with dementia and humane caregiving seems to put us right at the brink of making those choices for the patient. Anyone who tries to allow as much freedom can be had without danger to the patient will always run a risk. I, for one, believe the risk is worth taking, but I know from experience how difficult that choice is.

Even though our folks wear the Safe Return bracelets of the Azheimer's Association, there is still the frightening possibility that he or she could still wander off and harm could come to them in the minutes, hours, or days while they are gone.

It ain't easy.

Saturday, August 13, 2005

Sunday Best at Day Care

The note from the day care staff said: "Please wear your Sunday best ..." Mr. and Ms. Madison Center. Our Sunday best is pretty much like our Wednesday best. Over the last three years, Mother lost between 80 and 100 pounds, so her wardrobe of wearable clothes is limited.

Last summer she had only two pairs of jeans, which she inherited from my closet. We were a little luckier with tops since I was able to find a collection of smaller size tops in her closet as I was sorting the house preparing for the movers. It seems so long ago now, but it was only 14 months ago.

In 2001, I started planning for Mother and Dad to come live with me. This became the solution since Mother refused to consider an assisted living setting. I refinanced my house, which was small, roughly a 1,000 square feet; started working with an architect on an addition that turned out to be 1,566 square feet; got it built; started making the appointments with doctors; and drove to Michigan to bring the folks to Virginia.

We drove straight through just because we thought it would be easier than staying over or flying given Mother's health issues.

Week One, doctors appointments.
Week Two, I went back to Michigan to load the moving van.
Week Three, my dad's health began what would turn out to be its final decline.

Dad died August 11, 2004. I became Mother's sole caregiver. I am self-employed, too young for Social Security, and hadn't worked much for four months. We had visited one day care in June, about two months after Mother and Dad arrived in Virginia, while Dad was still alive. That program matched technically with Mother's stage of the disease. It is one of the rare, as I understand it, day care programs for mid and advanced-stage demention. It has a wonderful reputation and its fees are certainly reasonable for the staffing ratios etc. Its daily rate was $70 plus. My father, the Scotsman, thought that was too much.

Technically, Mother is mid-stage on the dementia continuum. Yet she is highly socialized, of gentle demeanor, and can still eat and toilet herself without one-on-one staff assistance. So, she was eligible for an early stage dementia care program. What a blessing that turned out to be!

Our day care program is run by Arlington County, VA. It has been around nearly 30 years. It has recruited a wonderfully committed staff, in part because of the quality of the program, I suspect. And, miracle of miracles, Mother was also eligible for a reduced daily rate which is based on her income. Our income, of course, was reduced with Dad's death.

At the same time, I really needed to get back to work. Keeping Mother entertained and engaged in constructive activity was not getting me back to work. It took about a month to schedule in-take interviews, medical clearances including the TB test, and a second home interview. Eventually we were able to arrange for day care and activities that are geared toward helping seniors retain what skills and functioning that they still have. And, the fee ... $16 a day, plus cab fare if we used that.

We started with three days a week and quickly moved up to four days. There is exercise, sometimes museum visits, bowling, current events class, life stories class, and, of course, BINGO. Nearly a year later, we have a small collection of stuffed animals...the result of Mother's bingo winnings. And, I am able to count on working about six hours a day. Wonderful, wonderful.

Anyway ... Mother donned her Wednesday best and went to "school," which is what we call it. I always take Mother, because I like to have a feel for what's going on there. As I watched the cabs arrive, it was fun to see women in pretty dresses and jackets, brightly colored silky pants, and men in jackets and ties.

One of the men who is able to talk easily arrived in shirt that was a tad snug and a bright tie. I couldn't resist telling him he looked really nice. He is still able to maintain his curmudgeon persona. "And you're full of hot air," he retorted.

So, it is at day care...

Wednesday, August 10, 2005

Stress of caregiving

The national news has reminded me once again of the stress of caregiving -- no matter how well we seem to handle it on the surface. Dana Reeve, the widow of quadriplegic actor Christopher Reeve, has announced that she has lung cancer. No, unlike me, she has never smoked.

I suspect that the stress may have contributed to an earlier death for my father, but I also know that he would not have had it any other way. This week is the first anniversary of his death. He was hospitalized on August 3 and died on August 11. In my head, this whole year I have replayed the tape in my head. Did I make the choices for him as I should have? Would another kind of decision have prolonged his life... in a positive way?

A beautiful thing has happened this week as an affirmation of the cyclical nature of life and being. A friend's daughter, Katie, has given birth to 2 robust little boys.

I was braced for this week to be difficult. Clearly it seems to me as though I hit my lowest spot as I put Mother into respite care and worried that I had left her in the hands of incompetents, e.g. sleeping care givers. By comparison, this week isn't as bad.

Wednesday, August 03, 2005

All's well...

After a rocky start, respite care accomplished what it was supposed to. A little rest for me and the stimulation of activities for Mother...

There I stood in her temporary room packing up. I had put labels in her clothes but I noticed that she seemed to have picked up wardrobe additions during her stay... a housecoat, a night gown, slacks, blouse, a bra, and something else that I am now forgetting. Often I find that my clothes have become hers. Sometimes that's all right; sometimes it isn't.

First, I saw Louella and the purse slung over her shoulder come into view. Louella with a smart, fresh looking hair do was deeply in conversation with someone. Yes, of course, it was my mother all gussied up in her favorite pink sweater shirt.

The only word I could hear from the conversation was "daughter." I guess my mother was telling Louella that she was waiting for me. Rarely does she call me daughter any more... sister... mother, but not daughter. How interesting!

Mother was a little weary looking around the eyes and seemed to fall asleep everytime she sat down her first day home. Her right leg was a little more swollen than usual. She had convinced the caregiver to put knee-high stockings on. (More clothing borrowed from someone never to be returned.) Unhappily the knee-highs serve to hinder the circulation in that lower right leg, ankle, and foot, but it's not a big deal.

However, when I brushed her teeth, her gums bled. Probably little or no teethbrushing despite my instructions to the contrary. This is one of those seemingly inconsequential personal care issues that can turn rough in long-term care settings.

Maybe I care more about the teethbrushing because I've also spent $5,000 on her teeth this year assuming their health will contribute to her overall health too. Oh well.

In any case, Miss Dixie is back and in fine fettle, it appears...