9-6-2019

It has been a week since I last asked myself how we are doing. Funny how it is easier not to do that too often as it could lead to incredibly sad thoughts.

Dennis still thinks he is getting better, or at least holding steady. I think he is doing well cognitively but his motor problems are still there and worsening some. We can sit and have fairly reasonable conversations. He is able to talk about his condition without as much denial, although he still has to try to figure everything out – every new symptom, every change in the old symptoms, figure, figure, figure…

Since returning from the meadow to the condo he has tried many different sleeping arrangements, in search of the perfect, comfortable night. He never quite arrives there.

For a while he slept in the master bedroom, but immediately there were issues with the bed being too high. We have different temperature preferences as well so I would end up sleeping in a recliner in the living room just to keep cool.

He moved to the guest room and for a while I thought we had a good thing going there, but no. Soon the mattress was too soft and he couldn’t turn over. There was no solid surface to push against.

The search for a firmer mattress took him back to the master bedroom. It also has a smaller twin bed that he slept in several nights before he began to be uncomfortable. He had his back injury by this time and had difficulty getting in and out, or moving at all. He would lie on one side only all night and that side was getting sore. But the smaller bed gave him no room to turn around without hitting the wall. He also was noticing the amount of drag that his clothing gave on the sheets. Every time he tried to turn he would either lose his blanket completely or get tangled up in it.

Next he remembered an offer of a firmer mattress to exchange for the one in the guest room. My brother and I hauled the mattresses back and forth and surprisingly, it resulted in a lower bed, a firmer mattress. I thought it would be perfect. He practiced rolling from one side to the other. He measured the distance to get his feet up on the bed, and the distance he sunk down when sitting on the side (he does this on all beds now – the firmness test).

Having discovered the blanket problem, he now decided to sleep without them. This is when he started measuring the temperature of various parts of the room with his infra red thermometer. It was too cold for sleeping without covers. We had to get a heater, which we did. Keeping the door closed was also necessary to keep the heat in so, for safety sake, we also had to get a monitor so I could tell when he needed help.

It took several nights of trying the heater in different places – a chair was too high and made the floor cold and the ceiling too hot. The air wasn’t mixing right. He cannot be in situations like this without reverting to his lifelong career of figuring out why air does what it does. This morning after getting up he asked me to go into his “incubator” and measure the temps – 80 degrees F on the ceiling, 78 pretty much everywhere else. Perfect. You would think.

Another spin off from his “out of whack” heating and cooling system is his desire for longer hair. Winter is coming and his head will certainly get cold. He has resisted having it cut and also doesn’t want to shave his facial hair. He was looking quite shaggy and unkept the other day when we went into Dairy Queen to buy a couple dinners. He sat down to wait while I fixed our drinks, which I put in the truck. I told him he could go out and get seated and I would wait and bring the food when it was ready. He went out. The people at a nearby table were concerned and about to follow him out and bring him back, since his appearance and way of moving signaled that he was obviously not all right in the head. They were afraid he was running away and would get lost. Wow.

The good news is that today I convinced him to get a haircut. My nephew has recently started work at a barber shop in town and I framed the outing as a chance to encourage a young person in their career. That is definitely something that Dennis responds to these days. It gives him purpose and a way to connect with someone other than his wife – me. I’m also grateful for that.

He looks pretty spiffy now, hair cut and beard trimmed. Definitely worth the price.