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2 Important Lessons I've Learned From My Parents' Alzheimer's Disease

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“Given the choice between the experience of pain and nothing, I would choose pain.” — William Faulkner

You never truly experience life and your true potential for living until you experience life’s real adventures. These are the moments that in some ways define you and in other ways, stretch you beyond unimaginable limits. I wouldn’t for a moment suggest that I’ve overcome unthinkable odds — just watch the recent news and see real people dealing with dire situations. But in the past six months, I’ve had to face a challenge and it’s given me the opportunity to feel that pain and immerse myself in some important life lessons.

My parents have Alzheimer’s disease. Some say it’s tougher that they both have it, but I see the positive side of the situation. They have each other, and they depend on that more than anything else. They also live in this lovely parallel universe from time to time, where they have the most interesting discussions that only the two of them can understand. And understand each other they do. I’ve often stood on the sidelines, amazed at what I’m hearing but not invited to participate in the conversation. But they have each other and their delightful discourse. Lesson number one.

As I’ve waded through these last few months, educating myself, steeling myself for emergencies and trying to keep an even keel, I began to realize I’ve arrived at this moment in my life well equipped to handle the many extraordinary challenges that exist with aging parents and dementia. For 11 years, I’ve been a parent of a child with a disability. He has mobility issues, speech issues and a mild intellectual delay. Initially, I thought of these two family dynamics as separate entities. Yet again and again, I’ve found the tools I’ve needed to care for my parents from the toolbox of my son, Graydon’s life.

Communication is key with Alzheimer’s patients — eye contact, calm, slow speech, simple topics. Limit distractions, use reminders and cues, stick to concrete rather than abstract ideas. All strategies I have used and some I continue to use with my son. Foster their independence as much as possible. Encourage and reassure them they’re doing well and are loved. Keep their minds engaged and their bodies active. This has been a constant in my son’s life and the one thing that’s helped him progress so well in his daily routine. For his grandparents, it’s perhaps their biggest challenge but one worth pursuing every day.

The most common thread through this journey has been the ever-present need to protect their dignity and respect them, both my parents and my son. Their minds and bodies have challenged them, but they are intelligent, funny, interesting people. Through the tougher moments, I’ve always focussed on the individual, and they never fail to amaze me with their insight and their collective experience. As with my son, just when I feel the overwhelming need to care for them, emotionally and physically, they turn around and enlighten me with their words and actions. Lesson number two.

I think life, in all its complicity, is really just one big classroom. We never stop learning — through our parents, through our children. As arduous as our experiences might seem, they’re what nurture our mind and body. I don’t think I would trade my lot in life for anything. Given the choice, I would still agree with Mr. Faulkner.


This post originally appeared on Alzheimer Society Canada.

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Originally published: February 20, 2015
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