Saturday, March 26, 2016

How Many People Notice?

Looking back, I can see there were subtle signs of cognitive changes as far back as 2002. Very subtle. No one would have noticed but me. At the time I dismissed them as a byproduct of a very high powered, high stress job that he had. But now I'm thinking it may have been a very early warning sign.

About 5 years ago, the signs were mounting, too hard to ignore. Confusion about the difference between a debit and a credit card, difficulty with finances. Subtle personality changes that were disturbing to me, but perhaps not noticed by others. This became the impetus for me to start planning for my own retirement.

Jim is in total denial about these changes. He insists that he has mild forgetfulness, "common for someone my age". He is mystified when I try to discuss the personality/behavioral changes; he just doesn't see it. I have read that this type of denial occurs often with some types of dementia, especially in frontal and temporal lobe dementia. It is characterized as lack of awareness and insight, caused by damage to the brain.

The memory problems are easy enough to work around. I'm always glad to help him "fill in the blanks" when he can't remember what something is called. Yesterday he was trying to describe arthritis; he held up his hands and wiggled his fingers and said "you know, when you can't do this". But the personality and behavioral changes are much harder to deal with.

My strategy is to keep things as even keeled as possible. This helps to reduce his anxiety, and thus his agitation. I'm still learning how to do this. Without insight into his own behavior, I don't see this getting any better.

I've not said anything to friends/family. Given Jim's total lack of awareness that there are problems, it doesn't seem fair to him. It almost feels like a betrayal. He certainly would see it that way. I asked him if I could go with him to his next doctor's appointment (routine appointment). He said ok, but only if I agree to NOT bring up these concerns that I have. He said that it would be misleading to the doctor, sending him in the "wrong direction".

My brother (the sibling I am closest to) finally said something to me about noticing changes, and it has been a relief to finally have someone to talk to about this.

I purposely limit our family and friend social contacts. Some of this is to protect Jim, and if I am honest about it, to avoid embarrassing situations. Jim managed to totally alienate one of our dear friends in our neighborhood. He became angry over a perceived slight. I tried hard, but could not convince him otherwise. He stormed over and gave our friend a piece of his mind.

Do others notice? I'm guessing that some do, and perhaps just don't say anything. I'll continue to try to keep the peace, for now.


  1. Glad you are writing, Carole - it always helps me to read about how another person is coping with a similar situation, ie a spouse with dementia. Sounds like things with your spouse are about the same stage as mine. Denial is the hardest part - I really, really miss being able to talk it over together, brainstorm, strategize, just be in it together. It gets really lonely at times, so I'm so grateful for friends, group support, family and other bloggers!
    Hang in there, keep writing, we'll all get through!

    1. Thanks so much for your comment! Yes, I have found it very therapeutic to write. Kind of like getting it off my chest. Finally being able to share this with my brother has helped as well. And finding like-minded bloggers, such as yourself, has helped me immensely. It's a unique walk we make, every day.

  2. Hello Carole... Thank you so much for your kind visit and comment. I'm so sorry for all you're going through. Alzheimers apparently runs in our family. My father had it and it was a battle to keep tabs on him because he would constantly wander off. It was very difficult on my mother. Thank goodness she is doing well. I worry for myself and my brother though...

  3. Thanks Kay for your comment! I love your blog; so positive and uplifting!

    My dad had Lewy Body Dementia, so I can sympathize with the concerns about inheriting some type of cognitive impairment.

    I can tell from your blog that you lead a full and happy life. And keep a busy blog going at the same time! Good for you!

  4. Hi Carole. I discovered your blog from a mention in Kathy's Retirement Blog. Fortunately, neither my husband nor I are experiencing any sort of dementia (yet; fingers crossed), but I did go through it with my father. One of my greatest regrets was when my mother (also now deceased) tried to voice her concerns about my dad, I went into denial mode. I made excuses for his forgetfulness and odd behavior. I wish that I had been more receptive to her fears when she first told me.

    1. Thanks for your comment. It's such a shock to discover that someone you love has dementia! It makes sense that we would try to protect ourselves from the sad reality.

      I just checked out your blog. I like it!