In just two weeks it will have been two years since he lost his first job, and a year since he lost the second one. Social Security has agreed that my husband lost his jobs as a result of his diagnosis, and looking back, we’ve seen the signs for about six years.
According to the doctor, the first symptom of Semantic Dementia is word finding, using vague words for specific items, or substituting words. According to our school speech therapist, my husband may be able to produce lots of words, not necessarily the specific words he wants, and he will lose word meanings. We may also discover they he has an artistic side, which seems to be something that comes with this type of dementia. That is interesting, since he has recently talked about getting a Paint By Number set, and has taken out his mother’s keyboard.
As I reflect, it starts to make sense. The reason he lost his first job of 17 years, was that he wrote: “This is the final bill” on the bottom of an insurance claim instead of: “This is the final estimate.” He had become confused with part numbers, locations, and orders that he had done over and over. One day, he confessed that he stalled a customer for ten minutes trying to think of what he was supposed to be typing into the computer, and would go out back to fetch a part and not have a clue what he was looking for, in familiar bins.
He has always been shy and sensitive. He was very “in tune” with emotions and was very close to his parents. He liked fashion, baking, keeping a clean house, he did well in school, and was kind and thoughtful to everyone. Now, I am surprised that when I cry or am upset, he often doesn’t change his facial expression. He used to be very upset when I was, now he just watches me.
He has never liked crowds much. He would push himself to stand up in front of townspeople at a meeting and speak. If he knew the topic, he spoke with ease and represented the area very well. He was well prepared and stood with confidence. Likewise, he represented his place of employment with the same ease. He was confident and a quality employee and was Mr. Social especially at Open House, which was crowded and crazy. Today, he hardly goes into crowded spaces, even with family. He shivers, shakes, twitches, becomes red-faced, often rocking back and forth. It seems like negative traits have been magnified and positive traits have become dull.
He used to wake up early and require little sleep. He had great stamina, and could push through physical projects all day. Now, he requires much more sleep, often takes naps, and struggles to stick with physical tasks for long periods of time. Although he goes through times where he cannot sleep, it is usually short-lived, and he is back to sleeping 12-14 hours a day.
He was organized, driven, a high achiever, and a real go-getter. He taught Sunday School, AWANA, Youth Group, was a Selectman of our town, and took On-Line classes. Now, he has trouble keeping track of even the remote control and has half started projects all around the house. Again, a familiar trait, but worse now.
He loved to work and took great pride in what he earned. Now, he seems content to be at home to tinker in the house on home projects. Although he still is able to care for himself, there are certain tasks that he can’t do any more. He can’t tie his shoes, isn’t responsible with a checkbook, and is not able to manage his own medications. We found some Lock Laces to solve the lace problem, he works with only cash in his wallet, and I put his medications in a daily organizer in order to keep him safe.
The challenge is that my husband is still the man I married, even though at times he acts like a teenage boy. He has mood swings that are hurtful. He has always hated cats, and mine is no exception. The other day, he chased her into the loft because she looked at him funny. He locks her downstairs during the day because she sheds and leaves hair on the furniture. He doesn’t want her to sleep with me because she will shed on the bedspread. The disease seems to have taken traits that were already prominent and put them under a magnifying glass. This weekend it was particularly obvious. The girls were home for Easter and I suspect that his anxiety stemmed from an over stimulated house that he usually has to himself. He was in a foul mood. He was upset about taking pictures with the family, carrying wood in, washing dishes, and waiting for our youngest who was holding us up for church. It didn’t seem to take anything to set him off and I felt like I spent the whole weekend telling him to “knock it off”.
He has always been thoughtful, but not as much any more. For example, he made plans to go visit a friend in the nursing home although the girls had come home to spend time with him. He never checked with me to find out if we minded or had any family plans. It is just so unlike him and it hurt me to see the girl’s disappointment. The other night, he just got up and went to bed without saying a word to me. He rarely texts me during the day like he used to, telling me that he loves me. He used to do that all the time. I miss that.
The good news is that 6 years ago, and up to 2 years ago, he used to leave me a lot to do things with his guy friends. Some I never met. Sometimes he would make poor choices with, and he wasn’t always honest with me about what he was doing and who he was with. Now he stays home. He is happiest there. Sometimes he goes out with a buddy, and occasionally will run an errand with me, but he is pretty much house bound. He used to love “going for a ride”. Now, he says he just wants to stay home, or begs me to take him home when we are out.
I fight loneliness. He always asks how my day went but he isn’t really engaged in the specifics of my response. He really wants a general answer. Then he returns to his television show or the computer support group that he spends a lot of time monitoring. In some ways, I get a little jealous of the time he spends encouraging them, when I am sitting across from him and wishing that he would give me some attention. Maybe that is how he feels about me sleeping with the cat.
I can feel him withdrawing, and if I was honest, I’d have to admit that I am doing the same. We have been best friends since we were 16, and married since we were 21. I can’t believe that we sit in the same space night after night and barely speak. Maybe we are just trying to prepare ourselves from the inevitable, but I miss him so much and he isn’t even gone.