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.


Sunday, June 11, 2017

"He looks so normal!"

This comment was made by a friend of ours. She said it with a tone of incredulity, finding it hard to believe that he could have advanced dementia. In fairness, it is not someone who spends a lot of time with us. Jim does look normal. Sometimes dementia is called the hidden disease because you can't really see it. Spending a significant amount of time with Jim would quickly bring an awareness of the deficits. 

The other issue is  that dementia is associated with a much older age. At 68, Jim is much younger than most folks afflicted with this disease. We think of someone very old and physically frail when we think of someone with dementia.

Jim is so handsome. Beautiful brown eyes. A smile that would melt your heart. His black hair over the years has turned into a salt and pepper (mostly salt) color. He is trim and dresses impeccably. So yes, to look at him he looks "normal". And when among strangers, if the conversation is brief, no one would be the wiser. 

The driveway sealer guy came by the other day to give us an estimate. We happened to be outside. Jim shook the guy's hand, we made very brief small talk about the weather. And then Jim said "yes, I've seen you every day this week!". This very polite, kind guy paused for a moment, and then said "well, I've certainly been pretty busy". 

It's one of those comments that isn't seriously off, but enough off where you kind of wonder about it. 

When we have workers at our house, I almost always am able to give a "heads up" by phone prior to any work being done. This strategy has worked well to prevent misunderstandings. I've always found workers to be kind and understanding. 

Typically our days involve two separate outings. One late morning and the other mid-afternoon. Jim will take the lead "Let's get going!", having no idea where we would/should go. Our trips out of the house are always relatively close to home. We go to Wegmans almost daily. He loves it and it is a low stress trip. I am careful to avoid peak times when it would be busy. Going as often as we do, there are usually only a handful of things on our list. 

The other trip might be to Costco, or just for a short ride down some nearby rural roads. The trips are short, otherwise I risk an upset. As soon as we get home he almost always heads to the sofa to rest/sleep. 

Gardening and yard chores continue to keep me in the weeds and shrubbery too often for my liking. Jim enjoys sweeping the driveway, and will make it into quite the production as I work outside. I've had two encounters with snakes that caused me to retreat to a different part of the yard. I think they are garter snakes, but geez, both encounters the snake raised his ugly head and hissed at me! I wear my tall rubber garden boots, so that gives me a bit more confidence. But I just can't get used to the snakes! 

This is an interesting link. It connects the 7 stages (and substages)  of dementia with the corresponding expected duration of the substage, the corresponding mental age in years, and the MMSE score. Before I found this link, I would have guessed that Jim's MMSE score would be about 7 - 8. I don't know for sure, as he did not agree to the testing at the doctor's appointment. As far as the mental age, I don't quite know what to think of that correlation. But it is useful in that it is a reminder that expectations need to be realistic as the decline continues. 

Jim is at stage 6B, kind of. He is unable to do any of the preparation for getting ready to shower, including turning on the water and adjusting the temperature. I'm not sure what actually happens in the shower, but he always smells sweet and clean 😀.  He is in the beginning stage of some intermittent minor issues with toileting. 

One of my more recent observations is that Jim is totally just trying to get through his day and be able to make sense out of the world around him. Many times he is unable to process what is being said. Minimizing outside stimuli, waiting for a quite moment, and keeping my words short, to the point and without a lot of detail seem to work the best for Jim. A soft loving voice and a gentle touch or kiss all go a long way in helping Jim to feel more secure in his environment.

I have my moments where it still is just incredibly sad. Our future together is not at all the way we had planned. But, the good news is that Jim seems pretty content. His anxiety is so much better. What more could I ask? 

Thanks stopping by. I so appreciate each one of you.

Thursday, June 1, 2017

"As Long As It Is Not Number 2"

It's been a while since I posted. It is a bit of a challenge to find "alone" time that gives me the privacy to write.  When Jim naps, I use the time to do things around the house or make phone calls that are easier to do without Jim being so very present.

I continue to be so grateful for the improvement he has shown on the citalopram.  I really don't think that I could ask for a better response. As long as we are home and things are low stress, he seldom becomes anxious. I continue to be careful with out of the house activities, keeping them short, familiar and low key.

My hairdresser offered to come to our home to do my hair. I was a little nervous, not knowing how Jim would respond. But I figured it had to be better than taking him to her shop, which is about a 30 minute drive each way. Add the time spent in her shop, and it just spells disaster. Her visit went great! She is a natural when it comes to interacting. Jim responded so well to her. She offered to cut his hair while she was here and he agreed! So no more worries for me about having to leave the house for hair appointments. I'm so very grateful for her kindness and willingness to travel this distance.

Jim's confusion continues, and I believe is worsening. I'm not surprised by this, as this is how Alzheimer's progresses. He has the hardest time first thing in the morning and late afternoon into evening hours.

This morning was particularly difficult for him. He woke me up about 6:15. He looked worried and said "I don't know anything. I don't know what to do, or where to go. I don't know anything I am looking at."

This was absolutely heartbreaking. He wasn't agitated, just incredibly sad and worried. Fortunately he remembered me. I suggested having some coffee, watching the morning news, to see if that would help. At one point he said "I don't think I have any opioids in my system."

It was his way of trying to figure out why he was so confused. The only thing he could think of was that perhaps he had had some pain medication. Side note: Jim has never had any prescription pain medication with the exception several years ago, following hernia surgery. He did not tolerate them at all and had to switch to tylenol.

It was so hard to watch him in distress. I encouraged him to get ready for the day, shave, shower etc. A few hours later he noted that things were looking familiar to him. What a relief. I cannot even imagine what it would be like to wake up, not know where you are, not recognize your house, and wonder how you got there. Sounds terrifying to me.

I'm learning a lot about house maintenance, yard work and gardening. Most people will not relate to this, but I have to admit I hate gardening! I love being outside, but the pulling of weeds, edging, etc is not enjoyable at all to me. I purchased a battery operated edger and weed trimmer. This eliminates having to deal with gasoline. These things always remind me of what a beautiful job Jim did in keeping up with our landscaping.

Communication challenges continue.

Jim: "Where is the kitchen?' (We are standing in the kitchen as he asks this.)

Me; "Dinner is almost ready; about 15 more minutes."

Jim: "Oh, good."

Whew! Got that one right. I don't always get it right.

Jim: (Pointing to the light switch in the bathroom) "It might surprise the number 5."

Me: "Well, as long as it's not number 2."

We both laughed so hard! I hope no one is offended by the bathroom humor. But sometimes you just have to lighten things up. Got to keep your sense of humor. 𝩀😊

He also incorporates what he sees in the environment/on TV with what he is trying to say.

Jim: (While watching commentators discussing Trump pulling out of Paris Accord) "Where is the Paris Accord shirt?"

Me: Let's go look in your closet to see what we can find.

And so it goes. More confusion, more decline, BUT anxiety is so much better. So grateful for this. When I think about how things were 2 months ago, I remember thinking that I was certainly doing harm to my body and my mind, given how I was reacting to this high level of stress. Fast forward to today, and I am not nearly as stressed as I was before.

I know that things are only going to get harder, but with my stress level better controlled, I should be up to the challenges that Jim and I will face.

Thanks dear readers for stopping by. As always, my heart feels lighter!