Dementia Challenges; Rising to the Occasion

Well, it has been interesting since returning home from Florida. I realize now that I never should have traveled to FL. It definitely was a judgement mistake on my part. I'm certain that my judgement was clouded by the dreaded winters in upstate NY. And sure enough, it was a typical, brutal winter. But in retrospect it was not worth it. We are done with travel, and I am OK with it.

Jim's dementia continues to decline. It is such a sad thing to see. Lately, his memory struggles quite frequently with how he knows me:

"How long have you been here?"

"Are you sure we are married?"

I go through the details, showing the marriage license and our photo on the piano. He accepts that this is the reality for that moment, until he forgets again.

He also asks a lot about our last dog:

"Where is our dog?"

"Why isn't our dog here?"

It is heartbreaking to have to keep breaking the news to him that our beloved Jack is gone. 

Dementia is a cruel disease. No concern for the person afflicted, or for those who love them.

Some encouraging news about driving and Jim's car. As I mentioned before, he was certain that the black Accord (his car) belonged to Mike, our friend who kept an eye on our house while we were in FL. After realizing that his perception was not going to change, I decided to go with it. The Accord is at Mike's house. We are now a one car family. This is a huge relief! It essentially solves the driving concern, at least for the most part. 

Yesterday we were headed to the mall and he said that he would like to drive. I responded "How about if I drive there, and you can drive home?". He accepted this, and as I thought, he completely forgot about this and I drove going home. 

If things go as I expect, at the end of the month I'll sign the car over to Mike. It is such a relief to be down to just one car. I've notified those who need to know to not ask Jim about his Accord. 

Jim's anxiety is very much present every day. I have some of the anti-anxiety pills left, but I am hoarding them for when he needs them the most. I just need to make it until we see the gerontologist at the end of this month. If we have nothing planned (no visitors, no appointments etc) I can usually manage his anxiety without the pills. But any variance to this, and help is needed. His anxiety when I am driving is almost unbearable for me. Without an anxiety pill:

"You almost killed 3 people!"

"You were going 100 MPH!"

"You could have killed us!"

It's all so real to him. In his mind, all of this is true. I can't imagine how hard it must be to be inside his extremely anxious brain. 

Getting ready for the day is extremely difficult for him. I try to anticipate his needs as much as possible, but I'm not always successful. I believe he is heading toward the moderately severe stage of dementia. Every morning, it seems he needs more and more help with getting ready. Yesterday he shaved twice (morning and evening) but never brushed his teeth. He had no idea what he needed to do next to get dressed after his shower. 

He gets very upset if I cannot figure out what he is trying to tell me. "Don't give me that! You know what I mean!" I  almost have to be a mind reader. Sometimes I can figure out by the context of the situation. 

I did a trial run with Mike spending time with Jim last Wednesday. I was able to get my hair done (I was desperate!), got my car washed, and stopped at the store for some groceries. I was gone for about 3 hours. Jim did OK, but not great. And this was after giving him xanax before I left. Mike told me that he was getting pretty antsy, wanting me to get home. Having that short period of time to myself was heaven. It felt so good. 

Once Jim gets some help from Dr. S. for his anxiety, I anticipate that I'll have better flexibility for some time to myself. Priorities include support group, seeing my mom, and my own Dr. appointments. 

I have to admit that the times when Jim falls asleep for a nap during the day it feels glorious! He is asleep right now, which gives me the freedom to write this post. I would describe my days as being in a state of hyper-attentiveness. I must always be ready to be there for him. 

Communication skills continue to challenge both of us. Yesterday morning:

"Where is my watch?!?" (Obviously in a lot of distress)

I knew that he hadn't worn a watch in over 15 years.

Long story short, he finally found a white t-shirt, picked it up saying "There's my watch!"

I am learning that when I speak to Jim, it is very important to speak slowly, with frequent pauses. This gives him a better chance at processing what I am saying. Also, it is important to give minimum information, keeping it all very concise and simple. I'm getting pretty good at doing this. I've learned so much on this dementia journey!

The challenge now is to find activities that keep him contented. If we attempt to go someplace, even if just to the grocery store, the anxiety rises to a high level, making it so difficult for him. If we stay home all day, he is "bored to death". I'm holding out a lot of hope for help from Dr. S. for Jim's anxiety. 

One of my favorite blogs by Dr. Elaine Eshbaugh inspired me. She wrote about the brain working very hard to interpret surroundings when you have dementia. This process is exhausting. This makes it difficult for the person with dementia to control their impulses and emotions. Elaine points out that while we as caregivers may say we are having a hard time when this occurs, the person with dementia is really having a hard time. I've learned so much from her.

Dementia challenges; I choose to rise to the occasion. This journey could be characterized as a sad, lonely and long one. But as Jim and I go forward, I'm appreciating the joy that we can still find in life. And I am ever so grateful for all the support I am receiving along the way.

Well, another post is written. Thanks for stopping by. I appreciate each and every one of my readers.