More changes. I've always known that this is a progressive, fatal disease. But sometimes I am caught off guard when the changes come our way.
Jim had a rough week. He is now clearly in stage 6 c and with some early signs of 6d and 6e. With Alzheimer's, when a person starts to lose a skill, it's not necessarily all or nothing. What I have witnessed is that the loss is manifested intermittently, and then proceeds with increased frequency until that skill is lost.
Communication challenges continue to make things all that much harder for Jim. The other day I was drying his hair for him and he said (rather calmly) "hurry", and at the same time made some vague hand gesture. I assumed he was telling me to hurry up with drying his hair. I was wrong. He walked away from me, headed for the guest bathroom and closed the door. He didn't quite make it in time. I felt so bad for him. He was embarrassed. I'm actually pretty good during times like this at remaining calm and reassuring him that there is nothing he needs to be worried about. Well, I can pull this off in front of him. I have to admit that in my own quiet moment I felt overwhelmed and incredibly sad for Jim.
The following day I figured out that he needed to use the bathroom. He stood in front of the toilet and said "I don't know what to do." It shocked me. I know it shouldn't, but it just was shocking to me to hear him say these words. I actually did very well in hiding my reaction. In a very reassuring way I assisted him with his clothing, gave a few prompts, and then he did fine. It's not happening every day; it is quite intermittent at this point that he needs help. I'm so very grateful that he trusts me and accepts my help. I try so hard to make it easy for him to accept my guidance and support, and this seems to be working.
It appears that "bathroom" and "toilet" are no longer in his vocabulary. He understands the meaning, but is unable to produce the words to indicate his needs. I realize now that bathroom needs must always be at the forefront any time he is trying to tell me something that I don't understand.
On a practical level, I've changed our mattress pad to one that will provide better protection for the mattress. I also have a spare mattress pad and extra bedding in the event I need to do a quick change at night. I have the proper undergarments for him to wear, when the time is right. At this point, my hyper-attentiveness will be all that is needed for now. Nighttime doesn't seem to be a problem, yet.
He is understandably frustrated with his decline in being able to communicate. I've learned a new technique over the last couple weeks or so that seems to help with his frustration.
Typically when he says something that is totally nonsensical, and I am unable to derive any meaning from context, I would say something vague, "I'm not sure". He would sometimes become angry that I didn't know the answer to his question. Lately I've been responding a little differently:
Jim: "What is the red side before tomorrow?"
Me: "I'm not sure...Do you know?"
It's a subtle difference, but by adding the "Do you know?" it takes the focus off me, and puts it back on him. I always use a tone of commiseration, and so far this seems to work fairly well. So instead of thinking about how upset he is that I don't know the answer, we can share the feeling of frustration that we both don't know the answer.
Lately there have been a few challenges with medications, where he has questioned why he needs "all these pills". This is new. I have started to make some decisions about what medications are really critical for him at this point. This turned out to be a wise move. He seems to be doing much better with less pills to pop in his mouth.
My friend Jan has been a tremendous support to me through our email exchanges. In her last email, she wrote "...but it also sounds like you are prepared to decide for yourself what is working well and what isn't. Hang onto that - you're the only one there who sees and knows what's going on."
What a powerful statement. It encourages me to trust myself and to trust the decisions that I am making for Jim on his behalf.
I have a link that might be of interest to others who are caring for and making decisions for someone with dementia. The European Association for Palliative Care developed guidelines for healthcare professionals and caregivers for those with dementia.
Update on boredom: I've been struggling with things to fill our time that Jim enjoys and is capable of participating, at least in an observational way. I just discovered the Science channel and the Animal Planet channel and he seems to be enjoying them. I have to keep the news to a minimum. He is incorporating way to much of it into our reality. The other day he said we needed to "lawyer up". He said this while the TV news was talking about Trump lawyering up. I've ordered a few jigsaw puzzles to try. I chose ones with dogs, since he is such a big dog lover. I am starting with very easy puzzles. His spatial skills are not good at all, so I don't know if this will work. We'll see....
Another post is written. So many changes and challenges. Thank you dear readers for listening and letting me share with you what is on my heart and mind.