Alzheimer’s disease

The Uphill River
September 20, 2020

            First, I am not an expert in Alzheimer treatment, but unfortunately, I have had a lot of personal experience in my immediate family. My grandmother Lord was the first in the immediate family to become one of its victims. She admitted herself to the Mount Lebanon Methodist Home which, for people of little means, was essentially a personal care home. For many years her mind was good and she functioned independently. She had a distant cousin who developed early onset Alzheimer’s and gave her family a real run for their money.  They lived in Florida.

            Grandma and my mother were so appalled that the relative would do things like undress and leave the house naked and other outrageous behavior. In the 1960’s, I’m not sure they even had Alzheimer’s facilities. The victim’s family had to try to deal with it the best they could. When my grandmother started showing signs, we would talk to her about “memory loss”, but we wouldn’t use the “A” word. There was really no reason to, because she wouldn’t understand and she was already in a facility which would take care of her till death.

            My mother’s disease was much more insidious. In fact, we had a preview when she was in her 50’s. We came home one weekend and she related a story where she had walked to Deemer’s – the town pharmacy, and on the way home she couldn’t figure out where she was. Somehow, she got reoriented and made it home. She told the PCP and he placed her on a low dose of an antipsychotic medicine. I don’t know why he chose that, but she had another good fifteen years!

            The real noticeable changes started about the time my father needed a leg amputation. We were trying to keep them in their home, so the weekly visit turned in to Dolly and I putting up signs for my dad’s leg care, reevaluating the situation, and starting to slowly take over handling the check book. Of course, in the background, my father was yelling at her because he didn’t/wouldn’t understand that she, too, had a medical condition. We avoided using the “A” word, because she would be inconsolable, thinking she would soon be running through the neighborhood naked.

            I spent a lifetime refusing to withhold diagnoses and prognoses at the family’s request – unless the patient’s cognition was bad. It would be cruel to keep information from a cognitively intact patient. They knew things weren’t right, and what they imagined was often worse than the existing problem. That required much additional time with the family to get them on board with the treatment plan.

            What kind of Alzheimer’s situations have you had to face? Did you feel you received adequate guidance and support from your PCP? There are some important strategies to arrange care, which we will talk about later.

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2 Comments

  1. Jason Kelly says:

    As your son and a man about to be 45 I am wondering what the early signs are of Alzheimer’s disease are. I realize it is more than just forgetting where my keys are, but I don’t know how much more. I remember Grandma Kelly loosing her hearing before her memory and inhibitions. Is that a warning sign?

    I remember how sad it was to hear her say and do things that she normally would not do. However, I was in college during her worse years and those same things that made me sad to here her say, also put some of my inner personal thoughts into perspective. This helped me to understand that even though she did always grasp what she was saying along with the lack of inhibitions, it was like talking to Ruth Kelly as a college acquaintance at a party instead of my Grandma Kelly and gave me a deeper understanding of her as a person more than my Grandma. This is why i am grateful for ALL of my conversations with her. But I also wonder what I will say when it is my time, but it will be funny.

    Here are some of the additional questions that I have:
    What are the chances that I will get Alzheimer’s?
    Are there screenings that I should have done at my PCP?
    What age ranges should I expect things to start changing?
    Are there any memory exercises that I can do now to help reduce the chance of developing Alzheimer’s disease?

    Thank you
    Jason Kelly

    • Thanks for your questions, Jason. It may seem that the answers I supply are superficial – particularly because the topic can get quite technical. There is an early onset disease which occurs from 40s – 65. That is commonly called frontotemporal dementia. There seems to be a genetic mutation involved which can be inherited. In addition to memory issues, there are often changes in behavior and mood and the disease may proceed more rapidly. As you know, our family history has been with females and late onset Alzheimer’s. They began to show symptoms after 65. Your “chance” of getting Alzheimer’s is probably just slightly above that of the general population. The good news is that we live in an era where medical research and potential treatments may occur at any time. Currently, the treatments available are to slow progression, but there are no cures for either the early or late onset types.
      There are genetic tests available that can assess your risk, but even they are flawed. There are many issues which can cause dementia, such as excessive drinking, drug use, and probably environmental factors. It becomes very complex in those scenarios. I would tell you the same thing I have said to the medical students and residents I have taught. “Don’t order a test unless you know what to do with the answer.” With no cure on the horizon, the results could cause crippling fear and severe depression. Thus, the answer is different for different individuals. .If you can handle the potentially negative information, it might set you up as a test subject for future treatments. Short of that and more serious symptoms, I would probably not test. There are literally hundreds of apps that address memory function. I am currently using one called “Elevate” which tests math, vocabulary and reading comprehension, etc. You can follow your results which vary by day and your level of concentration.
      At your age it is more important to have a will, a medical and financial power of attorney and a living will You may need to amend them several times, but they must be done while you are of sound mind. I hope that helps.

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