Friday, June 16, 2017

Dementia Progression and Communication Challenges

In retrospect, looking back over the last 10 years, I remember observing personality changes that I found troubling and hard to understand. Jim, who always was an easy going, light-hearted guy, suddenly became quick to anger, despondent, and in general seemed unhappy. It was shortly after he retired that I first noticed these personality changes.

At first I chalked it up to retirement adjustment. But as time passed, it continued and seemed to worsen. When I would attempt a gentle conversation about my concerns, the response was steeped in denial and tinged with annoyance.

I'm realizing now that this was likely the start of his dementia journey; I just didn't recognize it for what it was. Then came the cognitive changes: confusion about the difference between a debit and a credit card, some difficulty with managing our investments, and many other subtle changes that were a harbinger of things to come.

Way back, when I first noticed the personality changes, I remember feeling hurt and confused. What happened to my sweetheart? Is this what our future looked like? It scared me, but I didn't know what to do about it.

Fast forward to today. Never could I have imagined that this is where we would be at this point in our lives.

Jim progression continues to surprise me. I just didn't think that the progression would happen as fast as it is. Some recent changes:

 - Sense of privacy is changing. Jim was sweeping our driveway. He stopped, unbuckled his belt, dropped his pants partway down and re-tucked his t-shirt. He's done similar things in public. Not to the extent of exposing himself, but obviously very inappropriate. I've tried a little humor ("Uh-oh! Someone might see your you-know-what!") But he doesn't get it. Not sure what I'll do about this. Probably nothing, as long as he is not exposing his you-know-what!

 - Jim is not able to use the hairdryer, even with demonstration, guidance and prompts. I now am learning how to style a man's haircut using the hairdryer. 😀

 - He no longer knows how to wash his hands. He calls for me and says "I don't know what to do". I can talk him through this using some physical guidance for hand placement, and helping him with the soap.

- Once in the shower, he no longer knows how to get soap out of his favorite shower soap container. Once I pour some in his hand, he can lather up and rinse his body.

For the last few months I've done all the "prep" for his morning routine: setting up the shower with towel, laying out his shaver, toothbrush and paste, laying out clean clothes. Once he was in the shower, it gave me about 10 minutes to make phone calls (to my mom, to our friend Mike) that were best made when I was alone. I'm realizing that I can no longer count on this time for myself. I'm guessing that it won't be too long before he'll need help actually washing his body and hair in the shower.

I do manage to find other times for privacy/myself. Jim is actually napping as I type this. He is sleeping quite a lot these days. Usually two naps a day. The other change is that he is now going to bed about 6:30.

When he first started to do this, I thought perhaps it was just that he was confused about the time of day. I would gently point out that it was still early, and that we had just finished dinner not too long ago. His response is always "But I'm tired."

He awakens in the morning usually between 6:30 - 7:30. I've decided not to be concerned about all this sleep. His body must need it. And, it does give me some time to myself which is a real bonus.

Communication continues to be our biggest challenge. Earlier today, out of the blue, he said "I've never had a used Indian." I could not have made that up if I tried! Where does this stuff come from? I have no idea. But it is typical of the kinds of things he will say. Most times things make no or very little sense. My response is always to smile, and nod my head in affirmation.

The hard part is when he is desperately trying to communicate something he needs, and I have no idea what it is. Keeping his frustration level low is always my top priority. Bathroom needs, feeling too hot/cold, hungry, bored....those are all things that are so important that he is not able to communicate to me. I tend to go through my mental checklist when I'm trying to figure things out. Sometimes i succeed, sometimes not. Doing the best I can is all I can do.

Some good things that happened this week..."Comfort level" toilet installed in our master bathroom. Thinking ahead to when Jim may struggle with this. It's good for my bad knees too! We had a whole house humidifier installed on Tuesday. Knowing that we will no longer head south for the winter, I want to keep our house more comfortable. I had an eye appointment that I knew would be lengthy. I had Mike arrive at the office before we did.The "story" was that Mike's wife was having a procedure, and he was waiting for her. Perfect! Jim was OK to wait in the waiting room with Mike while I had my appointment and picked out a (desperately needed) new pair of glasses.

Another week has passed, and changes have walked us further down the road of dementia. We know where this leads. It's the journey no one wants to take. But take it we must. Thanks for supporting me on this journey. And as always, thanks for stopping by.


14 comments:

  1. You are doing an amazing job taking care of Jim and all of the other tasks. I would just sit down and cry but you keep going and accomplishing so much.

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    1. Hi dkzody. I do have my moments. They tend to be when Jim is especially affectionate and tells me how much he loves me and can't live without me. It can make me cry, as I become overwhelmed by emotion, realizing that these tender moments may not be here in our tomorrows.

      If we didn't have such a strong, loving relationship, I'm not sure if I would be able to cope as well as I am. Thanks so much for your kind words.

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  2. While we don't need it (yet), I'm sure charting the progression of Jim's dementia is helping someone else who's at the beginning stages, or preparing those of us who may find this in our lives in the future.

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    1. Hi Marty. I hope that others will find it helpful. I follow a couple of Alzheimer's forums, and I find it very informative. In addition I've learned from other bloggers, including Jan (Caregiving in the Forest and Alice (Alice in Memoryland). All of this helps me feel less alone.

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  3. I am not sure I would be able to cope with all the emotion but then I didn't have to. Until his death my Joe had a very high mental capacity and always talked more sense than I did. You are doing a wonderful job supporting Jim through the various stages. I applaud you.

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    1. Hi Valerie.Thanks so much for your sweet comment. You know only too well what it feels like to be losing the love of your life. I imagine that you, too, were drawing on inner strength and your love for Joe to get you through this loss.

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  4. I am a little astounded at how quickly this all seems to be happening. I thought, before I "met" you, that it was always more slowly progressive. Jim's rapid decline makes me afraid for my own dear partner. He has dementia in his family, but so far, at 75, he seems fine. My heart goes out to you and I so appreciate your honest appraisal of the process. :-(

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    1. Hi DJan. Jim's dementia is definitely progressing faster than what is typical. There are different theories on why it progresses faster in some, and not in others.

      Thanks for your kind words. I so appreciate the support I receive from you and the other dear readers of this blog :-)

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  5. Goodness, it seems like you are playing catch-up as each phase hits. He's never really had a plateau or stabilizing point, has he?
    The norm of your life seems to be forever moving. We're discovering that my husband's confusion and mood changes are due to low blood sugar. It's been good to be able to finally connect the dots in his own disease progression. Right now, we want to keep his remaining kidney alive and well. Life is work -- and for some of us, it's an unimaginable journey. Thanks for continuing to keep us informed -- I learn so much from reading your posts.

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    1. Hi Tehachap. So good to hear from you. I'm glad you discovered that the low blood sugars were causing the confusion and mood changes. As they say, knowledge is power. The good control of the diabetes should help to keep his kidney healthy. Diabetes and hypertension continue to be the major causes of kidney damage. The good news is that with good control of the diabetes and the blood pressure, kidney function can be preserved.

      Hang in there Tehachap, and thanks for your comment.

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  6. You are so amazingly flexible and accommodating I find your writings a lesson in how we should all be. This blog is an eyeopener for not one of us is immune to going through what either you are going through or even what Jim is. I read a blog written by a man going though the decline in his own mind. Here is the site if you are interested. http://living-with-alzhiemers.blogspot.com/

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    1. Hi Patti. Thanks for the link. I will definitely check it out. You are right. Dementia is not a respecter of person. Any one of us could be vulnerable, or know someone who is.

      Jim just finished sweeping the driveway and said to me "I have to go home now. My mother is waiting for me." Another new challenge, as I had not heard him say that before. Fortunately he responded to my suggestion for a nap first. I'm guessing when he wakes up he will have no recollection of that conversation. Dementia is keeping me on my toes!

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  7. Wow, Carole, many more changes to keep you off balance - what a challenge! Thanks for the kind word, I also find your and Alice's blogs extremely helpful. One thing a caregiver has is reduced contact with friends, and even if you are with them, you are limited in what you can say - so finding "friends" through blogs has been a God-send. Keep writing!

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    1. Hi Jan. Oh yes! You hit the nail on the head with your comment. Even if friends visit, we are still so highly attentive, unable to let our guard down even for a moment. In fact, it seems even more challenging as we try so hard to make sure our spouse is included in the conversation, as opposed to just being an observer.

      So grateful for our friendship Jan. Thanks for the comment!

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