Saturday, July 15, 2017

Dementia says "I Don't Know What To Do"

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.



23 comments:

  1. I'm sure at this stage of the game, you never know what to expect from week to week. All you can do is hang in there and hope for the best. Keeping you in my thoughts!

    ReplyDelete
    Replies
    1. Hi Sharon. Yes, this last week has given my blog name new meaning for me. Yet I know that when I put it in proper perspective, it is Jim, not me, who is truly suffering from this cruel disease. It helps me when I remember that. Thanks for your sweet words. (And I hope you are feeling better!)

      Delete
  2. It's all a learning curve for you, unexpected and difficult, but you are doing so well. It is good that Jim was able to use the word hurry. Let's hope that lasts a bit longer. I think about you often and always remember you in my prayers.

    ReplyDelete
    Replies
    1. Hi Valerie. Thanks for your words of encouragement. Your kind words remind me of my mom. I don't get to see her very often, but she writes once a week, and we talk on the phone at least a couple times a week. She, too, has become a big encourager. Somehow she always manages to say the right thing. And this is in spite of the fact that she is 88 and battling cancer.

      A positive attitude is so important for survival. And it is kind folks, like you and my other blog readers, who help me to keep the proper perspective and an attitude of grace and love for Jim.

      Delete
  3. I just finished your post and realized that I am crying, I don't know why exactly, but I feel you have become a dear friend going through a difficult part of your life. Your ability to cope and to come to terms with it enough to write these posts means a great deal to me. I send you my heartfelt wish that you know you are not alone.

    ReplyDelete
    Replies
    1. Oh DJan, you are such a sweetheart. Thanks for your very kind words. I know that my connections through this blog have led me to a place where I do not feel alone. This has become important, as I don't (at this time) have an opportunity to join a support group. As things progress, I expect Jim will be more tolerant of me being away from him for short periods of time, and perhaps it will give me an opportunity to locally connect with others traveling a similar journey.

      Your empathy for me and our situation is touching and means a lot to me.

      Delete
  4. Aww Carole, it is so heartbreaking what Jim is losing daily and how awful the frustration he must be feeling. I am always amazed how you adjust daily to these changes. Nothing is a for sure behavior as the next day can bring a new direction yet amazingly, you find a way to cope. You are a truly amazing woman.

    ReplyDelete
    Replies
    1. Thanks Patti. I don't always feel amazing, but will give myself credit for trying my best.

      Just this afternoon he was convinced that he should leave. He planned on leaving by foot. He had a few clothes under his arm. I've never seen this before. He was so very, very confused, and certain he had to leave right away. As he stepped out into the heat, I encouraged him to wait until after dinner, when it would cool down. He agreed, and within an hour or so, he reoriented to me and our home. Whew! Keeps me on my toes.

      Delete
  5. Your friend Jan has, indeed, given you significant information: "you're the only one there who sees and knows what's going on."

    This is a difficult frustrating situation for Jim, knowing only that he needs to do something, but what and how? -- and for you finding a way to help him continue to do as much for himself as possible which is important, too. I continue to be so impressed with the attention you place on finding the best words and actions to take communicating with him -- also, you are so sensitive to aiding him maintain some semblance of his self-image. Learning, is a trial and error matter as you well know, so be kind to yourself if you make mistakes in this ever-changing situation. You must continue to use any opportunity you have to think of and care for yourself, I want to remind you -- doing so is okay and necessary.

    ReplyDelete
    Replies
    1. Hi Joared. So good to hear from you. Thanks for your comment. Coming from someone with expertise is speech and communication makes it especially meaningful.

      You are right; the self-image concept is so important. Everyone wants to feel good about themselves, so I'm always looking for ways to provide that for Jim. This evening he helped me fold laundry. Seems like a simple thing, but I'm realizing I need to utilize every opportunity I get to help him feel productive and useful.

      My down time is when he sleeps. He just went to bed a few minutes ago, so I'll have some time to myself this evening. I'm so fortunate he sleeps through the night.

      I enjoy your blog Joared, even if I don't comment often. Thanks for stopping by :-)

      Delete
  6. My husband and I just returned from a trip to San Diego, a 5 hour drive. We stayed at a different hotel this time, and my husband turned the wrong direction coming out of the hotel parking lot, saying he needed to get to a particular highway--I knew he was going in the wrong direction, but thought rather than argue with him, I'd just allow him to discover it for himself. Finally, he realized he wasn't going to find the freeway that he thought he was heading towards and so he turned around and headed back the way we came. I Googled the freeway i knew we needed to be on and we wound up driving right by the hotel that we were staying at. I chuckled at the irony of the situation and asked if he wanted to wave at our room as we went by. This was almost an hour after we'd initially left. I thought of you and how you never get angry with Jim -- anger in a situation isn't really helpful for either one of us. We finally managed to get to the address we were expected at, and amazingly, we were the first ones to arrive. But thinking of how you handle Jim's confusion helped me handle what is happening more and more often in my life. Thank you.

    ReplyDelete
    Replies
    1. Hi Tehachap. It's so good that you have developed an awareness of the changes in your husband. The awareness will guide you as you go forward, helping you to be supportive to your husband.

      I remember when I realized the distinction between Jim and his dementia. It is this cruel disease that is taking over his brain. I get plenty upset at dementia, but have learned to focus my feelings of empathy on Jim. You are so smart to have learned this so early in the game!

      Glad your trip went OK. San Diego is a beautiful city. Thanks for your comment Tehachap.

      Delete
  7. Thanks for the link (6c) again, to the Fisher scale of Alzheimer stages - it was helpful to re-read this, which is a more detailed breakout of the 7 stages found in most literature.
    Also, thanks for the kind words. Stay centered, stay balanced as best you can - you're the point person for the whole shebang now, alas. Hang in there!

    ReplyDelete
    Replies
    1. Hi Jan. I, too, like the Fisher scale. I find it much more useful than the 3 general stages that are often used.

      Yep, the whole shebang. Thanks so much Jan for your support. It means the world to me.

      Delete
  8. I wish there were a vaccine for dementia. The scientists had better get busy.

    ReplyDelete
    Replies
    1. Hi Gigi.I don't know why it is taking so long for science to come up with some help. I remember 35 years ago when Jim was in graduate school, one of the areas that he studied was the effect that Alzheimer's had on the brain. How ironic.

      I've had a couple of well-meaning acquaintances suggest various supplements to stop/cure the disease. If only it were that easy. I just smile and thank them for thinking of us.

      Delete
  9. Oh, my goodness sakes alive, only you can decide what to do with your husband and his condition..I think you are loving,kind and brave, I will chant and pray for you both..Do what feels right for you and your hubs and please disregard unkind comments, it is your life and your husbands and no one's elses, hope I said that right..Aloha and keep smiling, I will chant daily, anonymous in the mainland..peace to you both...

    ReplyDelete
    Replies
    1. Hi Anonymous. Thanks for your best wishes. Actually, I have not received any unkind comments. I find people in our lives, both online and in the virtual world, to be very, very kind and thoughtful.

      The context of trusting myself to do what is best is simply encouragement to have faith in the decisions that I make on behalf of Jim.

      Aloha!

      Delete
  10. I am going thru the same thing with my husband. I find that when he doesn't get enough sleep, he goes extra bonkers. Every day I get him into his chair between 3 and 6 for at least an hour nap and it stopped the hallucinations. Sometimes he doesn't know who I am and thinks I am his brother or his mother. I have no support system and I am very much alone in this. I know what you are going thru because I live it every day of my life. Thank heavens I don't have to work and my husband is retired and we have enough to live on. I cannot leave him alone. I think the worst part is that family doesn't want us near them, most of my friends have dumped me. Nobody wants to hang around an alzheimers patient, and they tire of us. Very sad. I have a long, lonely road ahead. Lucky for me, at this stage, he enjoys eating in restaurants and going to the movies, even though after exiting the theater, he has no clue what movie we just saw. I find I have to keep my sense of humor. This is a very frightening situation and I just hope it never happens to me because I have nobody to do for me what I am doing for my husband.

    ReplyDelete
    Replies
    1. Oh, I am so sorry for what you are going through. It sounds like life is extremely challenging for you and your husband. It's tough to feel like you are alone, without any support.

      There is a great website I'd like you to check out.

      https://forum.alzheimers.org.uk/forum.php

      It is an online forum that provides support for folks caring for loved ones with dementia. I plan to mention it in one of my upcoming posts. It is based in the UK, but is appropriate no matter what country you are from. Sometimes it helps just to be able to vent and share your feelings with others who understand what you are going through.

      Take care, and know that I'll be thinking about you...

      Delete
  11. This comment has been removed by a blog administrator.

    ReplyDelete
  12. Oh Carole, this is so sad to witness the ongoing loss of basic living skills. Toileting is an especially tough one because of the loss of dignity that accompanies it. It sounds like you have done everything you can to anticipate it, prepare, and help Jim through it. Is he able to manage elastic waist sweat pants/lounge pants better than zip up ones? I remember in her last years, that is what my grandma wore. Thinking of you.

    Jude

    ReplyDelete
    Replies
    1. Hi Jude. Thanks for your kind words. At this point, Jim is still quite obsessed with what he wears. But I imagine that as the decline continues, it will no longer matter to him. His problems in this area are intermittent. Sometimes it is as simple as he doesn't know where the bathroom is (in our house). Sometimes he is totally independent. There have been a few instances of incontinence.

      I'm grateful that he trusts me, and for the most part does not seem too embarrassed. I always try so hard to act like it is no big deal, and just help in a very matter of fact, but caring way.

      Delete