June 15 -- The New Normal

We've now had the weekend to adjust. Five years into this journey of frontotemporal dementia, I am sensing a sort of rhythm to it. I adjust Dick's care to his current level of functioning, he gradually loses abilities of various kinds for a period of time and then one day suddeenly loses a whole lot of abilities all at once, I adjust Dick's care to the new lower level of functioning, and we repeat it. The length of time between the adjustments is shrinking, though, and I am finding myself adjusting more and more often.

This is not an easy task. Shortly after diagnosis, over five years ago, I found a secured assisted living residence for Dick. At the time, he was walking constantly and the place I found was perfect because the hallways were arranged in a square so he could walk laps. He wore a pedometer to count his steps and he walked at least 10,000 steps a day around those hallways. I also hired a home care worker, Dena, who would pick him up every weekday morning and take him out to eat and shop and run errands. I gave him a small allowance then and he could still use his ATM card to draw money out of the account I set up for him. He also had a phone and talked to his friends for hours at a time. He loved to go out to eat and took Dena with him every day for lunch. He also had our parrot for company. Dick had some obsessive-compulsive tendencies even early on, and one of them was that he constantly cleaned the bird's cage. This was good for the bird and she was good company for him, so it was a good thing for both of them. He also loved to vacuum so his little apartment there was always clean because he vacuumed several times a day.

This situation worked for 18 months or so, with only gradual changes in his functioning. At one point, I had to replace his favorite recliner with a new sturdy la-z-boy that had an electrical lift function because Dick began to just flop backwards into his chair, mindless of the fact that it would topple backwards. We had a few incidents where the entire chair flopped over backwards and he landed on his head on the floor, helpless to get up, and was found by the staff that way. So the new chair came into his life and he loved that.

Another adjustment in the early days was the restriction of his independent shopping. Dena, his helper, told me at one point that he was getting more and more sneaky about one particular shop. He was having Dena park at one shop and then, when he thought she wasn't looking, he would go into a nutritional shop and buy a LOT of nutritional supplies -- hundreds of dollars worth -- so that had to stop. Then she started telling me about trips to the post office where he would insist that she wait in the car while he took brown envelopes in that he was apparently mailing to someone. We found out later he was mailing money in $20 bills -- a total of nearly $10,000 before we stopped it -- to some of his friends. I did finally get it all back, I think. Of course, I cut off his allowance and bank account access completely at that point. I also had to go back to the judge to get his blessing for that. Still, I gave Dick a little spending money and allowed him to shop because it was at least an activity for him that he seemed to like. That worked until the day he shoplifted while our teenage son was allowing him to be at Walmart -- we had to take back the thing Dick had taken and apologize to the store -- and then his shopping ceased altogether.