Wednesday, January 18, 2012

Inspired By a Coincidence

Today I was cleaning out a file that I had forgotten existed. It was simply marked “Alzheimer’s” which covers a lot of territory. This particular file contained an assortment of national and chapter newsletters, various newspaper clippings, brochures, notes and letters from Mid-Missouri staff, and miscellaneous odds, ends, and memorabilia. The file had been untouched for the past five years.

It was a letter I had written to our family physician that transported me back in time. I had no recollection of writing the letter and read it with fresh eyes.

The letter began with “I have made arrangement with…Guest Home to provide daycare for Jim two days a week beginning in February. For some time I have not wanted to leave Jim by himself during the day while I work. His mother has been keeping an eye on him and preparing his meals for him. Jim no longer has a driver’s license and cannot dial a telephone. It is really hard to know what he will be able to do from day to day as his dementia progresses.”

To this point, I’m wondering why I wrote his doctor this letter.

“If I can get him to cooperate, daycare will be good for him. He doesn’t really do anything during the day besides watch TV. I think the stimulation of being around other people would be good for Jim. I also worry about his mom being so tied down with him and not being able to do a lot of things she likes to do. I also need a backup plan in case his mom would be unable to watch him. I am hoping that daycare will provide us with enough relief that we can keep Jim at home as long as possible.”

As I read on, the purpose of the letter came to light.

“I think if you suggest that he go somewhere during the day to get out of the house and be around other people, he will do it. I don’t know if I will be able to convince him that it would be for his own benefit, but I think he will listen to you.”

With the doctor’s help, we convinced Jim to give eldercare a try. The place I chose was on my way to work and I could just drop him off. After the first day, he didn’t want to go back. I remember pleading with him to go and he balked, but eventually I loaded him into the van. I felt much like a parent dropping off a child at the babysitters. Jim took his guitar with him and spent the day in an out-of-the-way spot playing the same song over and over. He didn’t socialize with anyone or participate in any of the bingo or card games the elderly residents played. 

After a few short weeks at daycare, the Guest Home called me and told me they were terminating his care. It seems he picked up his guitar and walked out the door. He had made it to the highway before a staff member missed him and went after him. They just couldn’t be responsible for someone who wandered off.

I had already decided that the daycare arrangement wasn’t working for Jim or me. He was stubbornly insisting he didn’t want to go “today” every time I tried to take him. It just wasn’t working out the way I had envisioned.

The next step was in-home care. That presented a new set of problems due to a high turnover with the service and the last minute calls with excuses why the designated caregiver couldn’t come that particular day. Some days no one showed up and the service didn’t know why. It seemed that they never had a substitute available.

A little over a year after I wrote the letter, I placed Jim in long-term care. We had run out of options, and he needed twenty-four hour supervision.

The letter brought back a rush of emotions. For a few short minutes, I relived the depression, frustration, and responsibility of being a primary caregiver searching for solutions to an ever-shifting kaleidoscope of problems.

I put the letter away with the other memories in the file folder that I couldn’t toss into the trash. As I replaced the letter I noticed the date at the top: January 18, 1999. The letter was written thirteen years ago today. It seems more like another lifetime, another me.

Copyright © January 2012 L.S. Fisher
http://earlyonset.blogspot.com