Trying to cope with the life changing diagnosis of dementia in a spouse, is an ongoing struggle. It’s like being on a long trail with someone. You can’t go back, and you can’t see what lies ahead. All you can do is keep walking. And as you go along, your partner is dropping things, necessary, needful things, that you can’t catch or pick up. All you can do is keep walking.
The pace slows as your partner loses mobility, and the questions keep popping up. What day is it? Where are we going? What are we doing? What day is it? What is today?
The thing that hits me hardest though is the fear. The fear throbs with a low hum in the background of day to day life. It is unspoken. It reveals itself in body language and in the confusion that marks every day. The changes in the ability or cognizant knowledge of how to deal with the things that occur in everyday life become more apparent as time passes. I have to do more and more to keep us on an even level keel. And each change is like a micro stab to the heart. Each loss is a permanent step down a dark path.
In the beginning, we noticed that he was having difficulty doing things he always did. We had to give up a side job teaching martial arts because he couldn’t deal with the students. He went from a compassionate, excellent encourager and coach to a grouchy, intolerant task master. He grew frustrated easily and began to accuse students of poor behavior even when it wasn’t true. We bowed out of teaching and learned of his diagnosis. The paranoia hit us hard, everyone was out to get him, Truck drivers on the interstate just wanted to run over and kill everyone else on the highway. Trailer park punks were harassing us in the middle of the night. People were going to steal his stuff.
He had always had a big heart for young people so when he started hating on extended family that was a shocking behavior to all of us. It wasn’t him… the ugly aggressive behavior and hallucinations and paranoia have been eased with medications.
Losing his independence has been hard on us. He was always one who preferred his own company and when he had to be with someone 24/7. We had to adjust our behavior and find a way to ensure he was in a more comfortable environment.
I have to remind myself often that he did not choose this. As his pace slows I have taken to holding his hand so I don’t run off and leave him. His mood often reflects my own, so I carry the burden of both our dispositions. Sometimes, I just can’t do it and end up paying an emotional debt as I have to settle him as well as my own emotional distress.
He doesn’t want to bathe or use deodorant. He doesn’t want to change clothes. He struggles working his smart phone. A big social media presence on his favorite topics before, now it is rare for him to find or comment. He can’t follow complicated dialog or story lines on TV. He is content watching shows he grew up with and baseball and football though he can’t tell you how the game is going. He used to know all the players and their stats. Now it’s a comforting familiar noise in the background.
He was a gym rat, going to the gym and working out was a major part of his life, now we go to the gym and sit in the sauna and steam rooms. He used to swim, now it’s a major deal to just get into the pool. And the changes keep on. It is a race of adaptations.
I have to totally release my expectations. My expectations of what he should be able to do and my expectations of myself, how I should deal with the challenges. They say a routine is best. I can’t give him that due to my work schedule. They say a lot of things. Each journey down this path is as unique as the people trodding it. Be easy on yourself and your partner on this trek. We already know it’s not going to end well.
MrsSmithsLifeUnexpected 