Dealing with dementia

I hadn’t made the trip to Ferndale to see my dad for a few months. I had been able to catch him in Arizona while he was visiting his brother the last two times thus saving me from the 1300 mile round trip but it was time to make the drive once again that I had been doing for twenty years.

Ferndale is situated just South of Eureka and has been the home of my parents for the past eight years. Before my parents moved there my oldest brother had raised his family of four children in the tiny Victorian town. My mother passed away in November of 2015, and my father will be turning 90 years old this coming June. He is being taken care of by my second oldest brother who retired two years ago to become my parent’s caregiver. A common occurrence in the United States. 

In the past year, about 43.5 million American adults worked as unpaid caregivers, the bulk of them to an adult age 50 or older, according to an AARP Caregiving report released in June.

My oldest brother is now his legal guardian as my Dad was declared mentally incompetent right after my mother passed away. That sounds harsh but it was necessary as the ability to manage his financial situation had become too much for him. He’s not wealthy but his month to month needs are easily met by his Army pension and his social security.  He’s a proud man, and I know it bothers him that he can’t take care of himself. He spent much of the past ten years being the caregiver for my mother, and now he finds himself being the one taken care of.

Last week I made the trip for several reasons.  See my Dad, do his taxes, see how my brother was doing with the taxing work of being a full-time caregiver, and see my oldest brother and family.

For a 90-year-old man,  I think he’s in good shape but the inability to put words into sentences has severely limited his ability for conversation. Physically he’s doing well, he can walk around the house without a walker, he can move very well with the walker when we go for walks outside. I think spry is the right word.  He probably wouldn’t need the walker outside but he loses focus very quickly and I could easily seem him tumbling off the high sidewalk without the steadying walker so I think it is a good thing my brothers make him use the walker.

While visiting I have to admit I had no idea what to do. We used to play a card game called cribbage but he mentally couldn’t do that anymore.  I loved playing cribbage with my dad, and I miss that, and if he’s able to understand that concept, I’m sure he does too. We talked but the conversations don’t go far. Somewhere in my brain, I pulled up the idea of playing the card game War. It was the game my mom first played with me as a child and I thought he would still be able to manage that game. It is very straightforward and he was able to do it. It can even be played with three players so my brother was able to join in. He was having fun doing something and I could tell he enjoyed it because when I came back for my visit the next day he quickly went to the card table and had the cards ready to play.

We have brought in a second caregiver to give my brother some time to run errands. My dad had a few issues a few months ago that had resulted in the doctor saying he had to be watched 24/7 which had put quite a burden on my brother. They live in a small town of just a few hundred folks so they were quite lucky to find a caregiver who lived down the street. She is an intelligent attractive woman who has been perfect for my dad.  I’d like to clone her and have her be my caregiver when I need one. He looks forward to her visits and she has done a great job in allowing him to be more than a burden.

Blessed be the good caregivers

I have always felt guilty about this trip. I show up, I talk to my brothers, I see things, I recommend things, I leave and they are stuck with dealing with a very tough situation. A situation that more and more baby boomers find themselves in.  We are doing our best to make sure he never has to see an assisted care home, though I think before he lost his ability to communicate he would have enjoyed the social aspects of an assisted care home. My caregiver brother does his best to take care of him, but they have zero in common and thus even if he could converse they would have little to talk about.

Tough decisions have to be made and I’m not sure I’ve been doing a good job when I’ve had to make them. I have enormous empathy for anyone in this situation, there may be no “good” solutions, but simply solutions. What do they call that? “doing the best you can”. As I headed home I felt Dad was in a better position now that Sarah had been brought in ten hours a week but his condition was so tenable, that if things get worse, what then? I don’t have the answer, how many of us do?

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3 Comments

  1. El Lay Dave

    I’m glad your father is in a good situation at the moment. My mother turns 80 next month at which time I will have two octogenarian parents. They are still self-sufficient, but I know that at some point in the not too distant future I can be facing similar situations. I hope I will handle it with as much grace as you and your family are.

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  2. 68elcamino427

    Your writing keeps getting better and better.
    When you said that you were “on vacation”, I suspected that you went to visit.

    This piece made me cry. Everything is so fresh from my mom’s situation.

    I awakened this morning wishing that I could talk to her.
    Everything you describe happened for her too.

    In her last year and a half, we could hardly talk at all, however she did seem to take some pleasure from me simply smiling and nodding as she tried to communicate.
    The halting in mid sentance, like not being able to recall the punchline of a story.
    Only it happened every sentence.
    I would sit with her for as long as she wanted to try to complete a thought, sometimes for twenty or thirty minutes per attempt.

    One of her last questions to me involved baseball.
    She kept asking me if I remembered that thing that I loved to do as a kid.
    She never got the baseball word out, but ended the thought with a big smile on her face saying,
    “Well, anyway, you sure seemed to enjoy it!”

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  3. Yes, this is hard. You know the word is there but you can’t pull it out for them. I do wonder if they had those laser letter dodads that they ALS people use if they could actually build sentences.

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