Saturday, May 09, 2009

Goodness. It's been a long time since I've written. I am prompted to write now by the Alzheimer's Project which is getting a lot of publicity and is aired on HBO this weekend. The HBO project is co-sponsored by the National Institute on Aging, giving it authority on the science of Alzheimer's, etc. There is also a wonderful piece on people who receive home care in this weekend's Washington Post magazine.

Some of the events I failed to write about need a little bit of explanation at this time.

November of 2006. Mother's then neurologist noticed something from a report about her heart and decided she should go off Aricept, which was the first medication she started taking after her dementia diagnosis. I had found her lying in a closet when she should have been in bed. She, of course, had no memory of how she had gotten there. Her neurologist believed she might have fainted because of Aricept, so he wanted to take her off it.

Within a matter of weeks, it was clear that she was losing ground with her speech and overall cognitive ability. I noticed it and her day care providers noticed it.

Ms. Dixie turned 90 in January of 2007. We had a party for her and she enjoyed it.

In February of 2007, she was hospitalized. Maybe the beginning of pneumonia, definitely an obstructed bowel, and a urinary tract infection, as I recall. I had found her slumped over on a chair in the bathroom and couldn't wake her. I stupidly thought I could deal with whatever it was and tried to give her sips of water etc. for about a day before I called Mother's primary care doctor and she said, "Hospital."

Ms. Dixie was in the hospital a week. Everything fell apart in the hospital. She couldn't walk. She needed her food pureed. Her doctor wanted her to go to a skilled nursing facility to learn to walk again. Washington had a massive ice storm during this period of time and I did not get to visit the skilled nursing facility before she was transferred. I leaned on the advice of the hospital social worker, who in my view was completely unskilled about dealing with a dementia patient. (Ah, yes, there is a lot of that around.) I later wrote a fairly straight forward assessment from my perspective to her about her failures on this issue. And, to her credit she showed it to her boss and her boss called me. But, I digress...

The skilled nursing facility was completely unskilled as far as I could see. They would plop her tray in front of her. She would spill her water and they would take her water away. Yes, this happens. Here's a patient who needs hydration and these knuckleheads withhold it because she tipped their nasty flimsy water cup over. I took to faxing complaint letters to the nursing staff after every visit and kept track of the water I helped my mother drink. Within a matter of about three days, this crack operation found a reason to throw Mother back in the hospital. I was relieved since that meant I could get her out of the not-so-skilled facility. I previewed new skilled nursing facilities including one in Fairfax because I refused to have my mother go to the other facility in Arlington County that had a miserable reputation. There was a vacancy at the Jefferson in Arlington County and I was delighted. Absolutely delighted with the care.

Mother was at the Jefferson for a month and I got some rest too. In the intake interview, I had carefully explained that Mother's neurologist had taken her off Aricept because he saw some blink on a heart report that might be troublesome. My mother was put back on Aricept and I was never consulted. But, aside from being annoyed at the lack of consultation, it seemed to me that she was doing better now than before her hospitalization. Hmm. So I got a prescription as a part of the discharge process and continued Aricept despite the directive from the neurologist, who by this time, had moved away from the area anyway.

So, Mother was to be discharged to continue physical therapy at home. She couldn't walk. The discharge people were arranging for a hospital bed, wheel chair, etc. for home care. At every opportunity while Mother was in the hospital and in skilled nursing, I had asked to help with tranfers so that I could learn what to do. So, by this time I knew that it would take two people to move my mother.

I contacted the home health agency that I had heard good things about from two Alzheimer's caregivers whose opinions I trusted. Technically, I had met with the agency in the nursing facility. Oh, and guess what I learned about Mother and water glasses. Give her a nice crystal glass and she would hold it. A little bit of shake in the hand, but not too bad. The paper cups got turned over because they were too flimsy.

I also met with Hospice while Mother was in skilled nursing. I figured this was the beginning of a downhill run.

March of 2007. A wonderful caregiver, Hilda, started with us on the day of Mother's discharge and was able to get her into the car. I'm not sure I would have been able to do that...in part because my anxiety level was so high at the point. Unfortunately, the commute was too much for her and the agency brought someone else in who turned out to be wonderful as well. Emma arrived at 9 am and left at 7 pm. I was working from home or trying to.

I had always had in mind that Mother, when she was able, would go onto the next level of specialized Alzheimer's day care, which is available in our area for more advanced Alzheimer's patients.

By about May of 2007, I was able to schedule an in-take interview. Mother was still not walking by that point and she tested as requiring the center's most advanced care level. Because of staffing issues for patients at the level, openings were infrequent and there was a waiting list.

About one week later, Mother miraculously began to walk again. Unheard of. This kind of stuff does not happen in Alzheimer's care. Except, it did happen. Mother was doing well, so well in fact, that I called the nurse from her previous day care center. This center is county-sponsored and has a sliding scale fee based on income. My mother's income is extremely limited and I had been struggling with how I would pay for the advanced care from the new day care center and the agency help, though wonderful, was eating into my mother's money.

I even prayed about it. More later...

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