My learning curve experienced a few bumps this past week. I've written before about Jim's difficulty when going out to eat at a restaurant. After last week's stressful dinner and evening with friends, I vowed to keep dining out low key, quiet, and very casual. A couple days ago I suggested a local Mexican restaurant for an early lunch (beat the crowd). It was off the beaten path and seemed like it would do the trick. We arrived and discovered the menu was on a menu board, hanging high on the wall.
Jim: "You don't expect me to be able to read that, do you???!!!"
Me: "No, that does seem hard to read. Let's just leave and find somewhere else to eat."
While Jim can still read, the ability to process what he is reading is pretty impaired. I have noticed that when looking at menus he is very overwhelmed. My strategy has been to look at the menu online prior to going to the restaurant, and then "helping" him find something that he would enjoy. The hanging menu at the Mexican restaurant was just too much for him.
Fortunately I quickly came up with a Plan B.
"Let's stop and get a pepperoni pizza." He loved the idea. We didn't even have to look at a menu. While in the restaurant we asked to be moved 3 times, due to Jim not being able to tolerate where we were seated. (People too loud, light is too bright.)
Pizza was delicious!
Jim became obsessed with what he perceived to be a mechanical problem in the condo. It is way too complicated and convoluted for me to explain, and actually the details are not important at this point. But his obsession and insistence in me calling the owner of the condo resulted in a lot of stress for both of us. The end result, after 3 days of turmoil, resulted in a very angry condo owner, and a bill for an unnecessary visit by a repair person. Of course I picked up the cost for this, but nevertheless the condo owner was angry at being bothered by this mess.
The condo owner is not aware of Jim's dementia. With Jim hovering, there has not been an opportunity to convey this information. I took some pretty serious heat from the owner about this whole fiasco. I don't know why I let stuff like this bother me so much. In the end, it doesn't really matter. But I managed to become quite stressed over this whole issue.
My dreams at night are often a source of peace for me. Lately, I am alone in my dream. Things are quiet and peaceful, I am outside walking, running, enjoying nature. I'm grateful for this escape.
Just prior to leaving for FL, I had a cortisone injection in my knee. I have some significant arthritis in the one knee, secondary to an old injury 25 years ago when I broke my leg. The cortisone was like magic! I could walk, go up and down stairs with no pain. It is starting to wear off, so when we get back home I'll schedule another one. I've been told that eventually I will need a knee replacement. I'm hoping to put this off as long as possible. I've read that caregivers often have their own health issues that worsen, or get pushed to the side. I can see how this could happen.
A couple days ago, Mr. Dementia had a bad reaction to a perceived hand movement by me. I was walking into the kitchen; I had a glass in one hand and my phone in the other hand. He reached for my glass, and I pulled my hand back saying "thanks, but it's ok, I've got it". His response: "Why do talk to me that way? You're treating me like I am 12 years old!" He was pretty angry, and it was hard to get him distracted in a different direction. Of course I apologized, hoping it would calm him down. I always tell him that I would never intentionally hurt him or treat him in any way other than respectful. Didn't work.
So, when all else fails, turn on the comedy channel! I've written about "The Carbonaro Effect". There are other shows too that Jim really likes on this channel. He likes one called "Impractical Jokers" (not my cup of tea). It worked! He got caught up in the show, it changed his mood, and his angry feelings toward me were soon forgotten.
His ability to operate the TV and his computer are intermittent. I often see him clicking on his mouse, trying to change the channel on the TV. He would not use his computer if I didn't encourage and help him. Email is something he no longer understands. When I look at his email account, I can see where his sending of emails dropped off significantly in early 2016, with the last one being sometime last summer. He and his friends loved sending jokes back and forth. He really exhibits almost no interest when I show him his emails from friends.
Dementia is tough, not just on the person and the caregiver, but tough on friends and families too. I try to be sensitive to this, although I'm not sure I always succeed. I'm certain that friends and family are very sad about the situation, but they must feel even more powerless than I do! There is a balance between sharing versus overwhelming friends and family with what is going on; I'm working on that balance.
Fortunately there are support groups for families effected by dementia. I'm looking forward to connecting as soon as we get back home. Support groups are in a better position to help process and handle the multitude of emotions caregivers experience.
Fatigue is ever present. A walk around the grocery store is so tiring for him. Jim used to sleep an average of 6 1/2 hours at night. I never understood how he could get by on such little sleep. These days, he is ready for bed by 9:00! Over the last year his need for sleep has been increasing steadily. He is always tired. Other than the dementia, there is no clinical explanation (thyroid levels normal etc). I've read that it is common for those with dementia to be more fatigued.
I looked at an old post where I was bemoaning the fact that an easy 2 mile walk around a local lake turned into a slow shuffle, with Jim exhausted at the end. I wouldn't dream of attempting anything like that today. Mr. Dementia leads a very sedentary life.
Jim is needing some help these days with personal care. Nothing dramatic, but it is a change for him. The other day he forgot to shave. Yesterday he forgot to shower. I casually asked him if he had showered yet (I knew he hadn't). He assured me he had. He would be mortified to think that he did not shower. His attention to detail in his personal care has always been so precise. My strategy is to put out a shower towel for him, as a reminder, and try to pay more attention as he is getting ready in the morning.
I'm looking forward to going home. It's been wonderful to escape the bitter cold and snow, but being so far away, side by side with Mr. Dementia has been more difficult than I imagined.
Thanks for stopping by, and thanks for listening. As always, it helps me tremendously to be able to put into words what is in my heart and what is on my mind.