Caring for a Loved One with Alzheimer’s

I have been a fan of Big Clive’s YouTube channel for some time.  He specialises in tear-downs and reverse engineering of electrical and electronic gadgets, often revealing the clever (and occasionally hideously dangerous) tricks designers use to cut costs in mass-produced products.  Big Clive has what I call the “Orwell gift”—the ability to observe and describe precisely what he is seeing without any filter based on preconceived notions.  He deliberately does not monetise his YouTube channel to avoid pressure which might cause him to pull punches when something deserves scorn and mockery.

Here is something very different.  For a number of years Clive and his brother, both self-employed, cared for their mother who was afflicted with Alzheimer’s disease.  They decided to care for her in her home and not place her in a care facility as things became difficult.  She recently died after the disease progressed to the final stage in which she was unable to swallow food.  Here Clive describes his experience, the progression of the disease, the practical reality of caring for someone with it, and how Alzheimer’s reverts those afflicted to basic human characteristics.

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Author: John Walker

Founder of Ratburger.org, Autodesk, Inc., and Marinchip Systems. Author of The Hacker's Diet. Creator of www.fourmilab.ch.

6 thoughts on “Caring for a Loved One with Alzheimer’s”

  1. My mother was diagnosed with onset Alzheimer’s in 1994. At the time I was working and owned my own home, taking care of grandchildren as well as helping my mother. She could still function for a time, but slowly but surely, her mind began to retreat. This was a woman with a Masters in Divinity, and an MSW, was a supervisor in Children’s Protective Services for 15 years, and active in many social organizations. I hired day care for a time but eventually could not afford it, her retirement income had mostly been confiscated by her ex-husband in a divorce agreement. I lost my home as could not keep up her house and my house, she actively fought being placed anywhere but in her own home. And, indeed, I had promised her she would never be left in a nursing home. I finally quit my employment in 1996, took early retirement to stay with my mother and care for her.

    She lost the memory of having children, being married, and her last months were sitting with a great grandchild listening to Scottish music. Watching a parent decline is so painful. Sometimes pacing around the house I would ask her what she was looking for: her answer, was her bed, she couldn’t find her bed. The one in her bedroom wasn’t the one she was looking for, but her childhood bed. Many things she was looking for were from her childhood memories. She would try to go potty in the bushes in the back yard, as she couldn’t find the “out house” that she grew up with in rural Arkansas. Many of her memories from ages 4-6 or younger.

    I asked her shortly before her death if she knew who I was? Her answer was, “of course I do, you are Kay, the one who loves me.:

    She died in my arms August 28, 1998.

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  2. Good, Kay; good for you.

    I know it was tough.   We went through Alzheimer’s with Snooks’s grandmother, and again with my grandmother, and with an uncle.   We have tried to offer support for several church families with similar struggles, and my congregation helped found an Alzheimer’s center nearby, in partnership with an ecumenical group of churches.

    It is exhausting.   It makes you feel guilty about additional things you could have done; you even get guilty feelings for feeling tired and not wanting to do the next chore.

    You persevered.   Well done.

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  3. My mother died of Alzheimers, as well, in her mid 90s. I could not visit her at the old family homestead as I could not bear to see the woman I knew so well as I grew up in such a pitiful state. My oldest brother, now passed on as well, took care of her at home until the final week. Sometimes I think my oldest brother was very offended that I did not visit. Little did he know that those few visits I made had me either in tears on the way home as well as in a terrible funk for weeks after. Caregivers for Alzheimer patients should be sainted, they have strengths and perseverance well beyond normal humans.

    I fear that I, approaching 68, am seeing some signs of the disease. Sometimes it seems like a simple thing, like forgetting a common or oft used term. This is especially true with the internet, forgetting a domain name that was very well visited. Names, well forget that, I gave up on remembering names a darn long time ago.

    The way I remember mine is by looking at my driver’s license…

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