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.

19 comments:

  1. Looking normal can present its own set of problems for anyone with issues who doesn't have someone, like you, to run interference for them. Glad you are finding sensitive workmen as some in our culture can be intolerant of someone's behavior outside a preconceived idea of what constitutes "normal".

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    1. Hi Joared. As soon as I use the word "dementia" or Alzheimer's", I get an appropriate, thoughtful response. I think that those with psychiatric disorders may not get as much understanding. There is still a stigma in the mental health field. As we baby boomers age, more of us know someone or have a parent or grandparent that suffers from some type of dementia.

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  2. Hey, I give Jim big kudos for handling trips to Costco. That's amazing. Costco is one place I cannot tolerate.

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    1. Hi dkzody. Jim likes the free samples at Costco. As long as we don't go during a busy time, it seems to be an enjoyable trip for him. I like it for some of there prepared foods that Jim loves. I divide and freeze into servings for two, and it gives me an easy meal that Jim enjoys.

      Short and sweet; that's my motto as we plan for a trip away from our home. Jim is full of enthusiasm for getting out the door, but shortly thereafter he is exhausted and ready to go home.

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  3. I'm so sorry for all you're having to go through, Carole. I can imagine how difficult it is. My mother cared for my father for several years as he went through the different stages of dementia.

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    1. Hi Kay. You have first hand experience with dementia, as a witness to your dad's (and mom's) challenges with this disease. I remember when my dad was diagnosed, my mom struggled with how best to manage things. Thank goodness for the internet, and our ability to read and learn from others. Thanks for your kind words Kay.

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  4. I admire you so much for the way you handle Jim's condition. You have so much to cope with and learn. I hope you are looking after yourself through all this.

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    1. Hi Valerie. Thanks for your thoughtful concern. Since Jim has been on the citalopram, I find that it is much easier for me to cope day to day. So yes, I am looking after myself. I have my moments, but I think every caregiver does, no matter what the illness.

      I've learned a lot about how best to approach things by thoughtfully watching and listening to Jim. He has been a good teacher.

      Last night he must have been cold. He got up, went out to the great room, laid on the sofa and covered himself with pillows, obviously trying to get warm. A year ago, he would have woken me up and complained about the cold. He seems to have a disconnect here, in that he did not do this last night. This just means that "listening" to him will require an unconventional observation on my part.

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  5. I'm so glad that the medication seems to be helping and he's less stressed, which means you are less stressed, too. I look forward to your updates and always happy to hear that you are coping so well. I know it's tough and I keep you in my thoughts.

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    1. Hi DJan. Thanks for your kind words :-) Some days are tougher than others. But at least the good days outweigh the tough days. I know that many spouses have it much harder than I do. I try to be grateful for the good days, and know that I can only do the best I can do when times get tough.

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  6. We started attending a class on Diabetes this past week and learned the signs of low blood sugar. I'm able to recognize the signs in my husband and the other day I asked him to take his blood sugar--it was 67! Low blood sugar will cause signs of dementia, exactly what I thought was happening to my husband. But, as you say, our future years don't appear to be anything close to what I had envisioned. It remains to be seen if we can do any traveling. Blessings to you for continuing to write. Reading how you cope is so very helpful to me.

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    1. Hi Tehachap. I'm so glad that you are getting the information about diabetes that will help you and your hubby better manage this condition. It is good, too, that your husband is able to recognize what is going on. I'm sure he is grateful for you, and the support that you give to him.

      Writing is helpful to me, and I find it therapeutic. I'm glad that you find my blog helpful as well. Keep me posted on how you and your hubby are doing Tehachap.

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  7. You are so right about most people having dealt with dementia in their lives via a relative or friend. It is sadly too common. Thus the understanding and compassion is more evident such as with your workmen. But like you said, just casual observation can be misleading. I wonder how many people I see out shopping with a spouse are having difficulty but you just can't tell. There are no wheel chairs, crutches or canes to signal. You are so smart to give heads ups when necessary.
    I too am so happy that the meds are working so well with his anxiety. Keep being strong.

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    1. Hi Patti. I'm certainly learning as I go. This morning we had a worker come by to install a humidifier and check our AC unit. He was great. He told me his aunt had dementia and that she could never remember who he was. It boosts my spirits when I realize that most people are kind-hearted and caring. It's a good tonic to offset this political craziness that is going on now! Thanks for your comment Patti.

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  8. Carole, your love for Jim really shines through in this post. Your description of his eyes and smile, and how handsome and trim he is, is a view through your loving eyes. It is such a cruel disease, and yet it afflicts so many.

    Jude

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    1. Hi Jude. My heart is tender when it comes to Jim. I'm so grateful for our love, and I know that this love helps to see me through the more difficult times.

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  9. Dear Carole,
    I have read through the last four posts, and I see so many comparisons between our 'situations' . Well done you for finding so many creative ways to deal with visits etcetera! I will remember them and copycat! I will read back some more. In the meantime I wish you and Jim all the best! Kind regards, Renée (alias Song Smith)

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    1. Hi Song Smith. Thanks for your kind words. I read your blog, and know that you too are facing challenges in caring for your mom. Wishing you the best, and take care.

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  10. Carole it is heartbreaking to read about the rapid progression of Jim's disease. Even as the decline is happening so fast, the deterioration has been going on and on for years.
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