Friday, April 14, 2017

Another Week in the World of Dementia

I've mentioned before the difficulty Jim has getting ready for the day. He struggles through the process, often saying "I don't know what to do next.". The hardest part for him has been getting dressed. He will go through several changes of clothing, sweating profusely, and experiencing a lot of anxiety in trying to pick out his clothing. My efforts to help him during this process have not been helpful to him, and seem to only add to his anxiety.

I made a wonderful discovery that seems to help! When he first gets up, he has a couple cups of coffee while watching Morning Joe on TV.  While he is sitting on the sofa watching TV, I quietly go into our bedroom, make the bed (an unmade bed is unsettling to him), and lay out his clothing for the day. I then hang a fresh towel by the shower, and put his toothbrush and shaver on the bathroom counter.

I had no idea! I've done this for the last 4 days, and it has worked beautifully. Apparently my presence while he was trying to pick out his clothing just added to how overwhelmed he felt. Now he walks into the room, everything is laid out for him, removing the anxiety producing effort of clothing selection. Such a simple solution that is working well, at least for now.

About a week ago, I had a precious few hours to myself when his friend Mike came by and picked Jim up for lunch. This week it was not successful. In no uncertain terms, Jim made it clear that he did not want to spend time with Mike. It sure was disappointing to me.

Jim is sticking to me like glue these days. As his dementia progresses I'm guessing that his anxiety is worsening as well. Perhaps he finds greater comfort in staying close to me. I'm finding the patience however, as I know that his appointment is coming soon. Once his anxiety is better controlled, I'm guessing that he'll tolerate being away from me for a bit.

I've decided to defer scheduling any appointments or making any firm plans for myself, until this can get resolved.

Yesterday I suggested that he check our mailbox to see if any mail was delivered. He happily agreed, put on his jacket and walked out the door. (Side note: I never worry about Jim wandering off. He is fearful of getting lost and would never wander off without me.) Meanwhile, I am taking care of some laundry. Jim comes back into the house:

Jim: "The mailbox is gone!"

Me: "The mailbox is gone?"

Jim: "Yes! I don't know where it is!!"

Me: "Let's go look together."

As we exit the house through the garage Jim walks over to my car.

Jim: "I'll look in your car."

Me: "Let's look at the end of the driveway."

We walked down the driveway together. He seemed absolutely amazed to see the mailbox. I'm not sure what happened. Did he even make it to the end of the driveway the first time? I don't know, but it  was another sad reminder of his memory loss of things that were once so familiar.

Jim's eyeglasses were broken beyond repair. They are bifocals, with a slight correction for distance, but primarily used for up close. He has several pair of "readers", but he was insistent that he get a new pair of glasses. I knew this was going to be a challenge.

I timed the xanax so that he would have the most benefit for the car ride and the actual appointment. His eyes were examined, and he picked out a nice pair of glasses, almost identical to his broken ones. Then comes the sticker shock. Frames were $245, and the lens were $310. Ouch!

We returned a week later to pick up the glasses. I timed another xanax to help him through this appointment.  Jim tried the glasses on, and long story short, he didn't like them. The optician was very good with Jim (I had given her one of my companion cards). He insisted that the frame was "not straight enough". After many attempts at adjustment, it became clear that Jim was not going home with these glasses.

The next day I called her out of earshot from Jim, and was able to get a refund on the frames, but not on the custom lens. Since then, Jim has asked a couple of times about glasses. I simply say that the optician is trying to locate the exact frame that he wants. I think he will eventually just let it drop. He has some good quality readers for up close, and the distance correction is minor.

The reason for sharing this story is because I surprised myself by how well I handled the eye appointment. In the past, I would have been totally stressed during the appointment with the optician. However, I was internally very calm. I think I am getting better at this. My conversation with myself: "No one died. We all get to go home in one piece, and it is not the end of the world. So just let it go, it just doesn't matter."

And so it goes, another week in the world of dementia. Nothing too exciting or earth shattering. I'm learning so much. As Jim finds his way through this next stage of his life, I'm glad I can be here to share this part of his journey.

Another post is written. Thanks for stopping by. As always, my heart feels lighter to be able to share with my dear readers. Thanks for listening.





24 comments:

  1. You are an incredible woman. After reading this I stopped to consider what my own attitude would be in the same circumstances. Sad to say I came out with zero marking.

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    1. Hi Valerie. I read your blog on regular basis and know for a fact what a kind, caring person you are. When I think back over this journey, my own attitude has gone through major adjustments. While I still hate dementia, I have found that by separating the disease from the person has helped me to respond emotionally to Jim, not the dementia.

      But I have to say that I'm not always successful. In fact many times a day I get discouraged. But I'm determined to do the best I can for Jim and see him through this next stage of his life.

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  2. Sad to realize that his memory loss is a double-edged sword. A blessing that he will eventually forget about wanting new glasses, and a sorrow that he couldn't remember where the mailbox was located. You're learning--the setting up of his clothing was great. Little things, it seems, have the greatest effect. Hang in there, and thanks for writing.

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    1. I was surprised that this simple solution did not occur to me sooner! My nature is to be helpful, but being helpful while he was present just didn't work; it was too much for him to handle.

      Thanks for for your kind words Tehachap.

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  3. I too am so glad you are able to navigate the thickets of dementia with such determination and love for Jim. He is very, very lucky to have you, but he'll never know it. Thanks again for the instructive post. I look forward to them.

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    1. Hi Jan. Believe it or not, at times Jim shows such sweet appreciation for me! I treasure those moments. I know that when I write a post, I focus more on the distressing times. I probably need to write more about the positives too. Thanks for your comment.

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  4. What a great discovery, laying out the clothes - all that stress simply evaporates. I had a similar problem with trying to give J a pill each night, which she couldn't understand why I was involved, and where was the main bottle, and so forth. The solution was to get a tiny saucer, and put that evening's tablet on it and set it in the bathroom by her stuff sometime during the evening. She now just takes it automatically because it is there.
    I can relate to the eye doctor story - the memory loss makes for these incredible adventures with the medical establishment, trying to determine what is wrong when the patient can't even remember what we're talking about, etc. Hang right in there, Carole!

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    1. Hi Jan. I know that this dementia journey is all too familiar for you. I'm so glad that we blog. I think that we learn from each other, and we inspire each other.

      Yep, those doctor appointments can be challenging! I haven't yet experienced an urgent care or ER visit with Jim, but I dread the thought of it.

      Thanks for your comment Jan.

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  5. That was a good idea to lay his morning things all out. That should work well - until it doesn't. Dementia patients are kind of like little kids, as soon as you think you have them figured out, the rules change. Not that I am an expert, I'm just an observer.
    Have a most lovely weekend.

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    1. Hi SJ. You make me laugh! "Until it doesn't" You've got that right! You are an astute observer. Hope you have a good weekend too SJ.

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  6. I wonder how much help it would be as the disease progresses to literally strip away all extraneous items from the home. While we love to have things out that bring us memories maybe the PWD would prefer to see a totally clear counter with a solid color plate on it with their sandwich ( an example ). It might be easier to focus on the food. Your idea of making the bed and laying out the clothes is brilliant. Even having a solid color bedspread might make it easier. All things to think about.

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    1. Hi Karen. Thanks for your suggestions. You're right that just as sometimes our conversations become too cluttered with words, sometimes the physical environment can become that way as well.

      Our home is not cluttered per se, more of a minimalist look. But Jim's closet is another story. I'm thinking about clearing out some of the stuff he never wears, just to make things easier for him. Thanks for your comment.

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  7. Great solution for the morning routine. It sounds like what I would do for the small grandchildren who come to stay with us. They have now reached a point of having no difficulty finding clothes and dressing themselves, but for awhile, I did just has you did with Jim. It worked very well. But like SJ said, as soon as you think you have it figured out, they change.

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    1. Hi dkzody. I was listening the other day to my niece (who is a school teacher) describe expectations for children in the first grade, such as know your address, date of birth etc. It really shocked me as I came to the realization that Jim now struggles with these things. So sad.

      But your analogy is a good one. Thanks for your comment.

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  8. I agree about cleaning out the closet. I reverse all my hangers in January and the next year I can see what I have not worn. I sneak things out of my husband's closet and he never misses them. Our house is clutter-free but some day I might make it even more so. I know that personally I feel better with less stuff out rather than more. I guess that is why I love the really spare mid-century modern look. Now our closets are another story but I have to have someplace to hide all the stuff.

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    1. I share your taste in mid-century modern look! Clever idea about the hangers. I'm like you; if there is a lot of clutter, it just doesn't feel right. My world is happier if there is less stuff.

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  9. I'm sure you have probably mentioned but does Jim have an ID bracelet? Twice when I worked for the power company in the field, I ran across obviously lost elders in their night clothes and slippers. Their ID bracelet let me get them back home. Oddly they would get right in the car with me when I would offer water and a place to sit.
    You seem to have a special sense on how to make things easier for Jim. Your adjustments to his morning were perfect. I am so sorry Mike isn't up to visiting with Jim. That was a wonderful way for you to get some R&R.

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    1. Hi Patti. Because Jim does not acknowledge any deficit, wearing an identification bracelet is not feasible at this point. However, in his wallet is a card with my contact information.

      We'll see how things go. I think that if I plan more focused visits with Mike, such as a "project" to complete together, things may go better. His moods are so variable, I never know what to expect. Thanks for your comment Patti.

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  10. To get out of the house you might try hiring a female caregiver. Have her come over for two hours under the guise of helping you. She could spend time talking to Jim.
    Have her come back the next day and tell Jim you have to go to the doctors but that she will stay with him. Maybe he will be more welcoming to a female.

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    1. Thanks for the suggestion Karen. I have thought about this, under the guise of helping with housekeeping. The key will be finding the right person. What a journey! So many twists and turns. Stay tuned!

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  11. My friend went thru a care agency and they sent out a young woman. She would take her husband for lunch and walking at the mall. Sometimes my friend would just stay home and catch up on things since her husband would follow her everywhere. She finally placed him and amazingly he adjusted very quickly. He actually thinks she too lives at the care facility but down the hall somewhere. I think they adapt so well because they have lost the memory that they are a husband and they have no concept of a wife. They are happy when things around them are familiar. The facility actually gives her husband "jobs" to do with her permission. He measures doorways and Windows and sweeps floors. She said he is much more engaged there and not bored like he was at home. Sometimes things work out in mysterious ways.

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    1. Thanks for sharing this Karen :-)

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  12. Hi Carole, my mum is messing up her wardrobe. Taking clean clothes out to wash over and over again. But will try packing and arranging her clothes, I think she needs help in this area too. Bless you

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    1. Hi Swift. So sorry to hear about the clothing challenges with your mum. I can definitely relate to that.

      Sending you positive thoughts and best wishes for a restful weekend. Thanks for your comment Swift; take care.

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