How my mother’s struggle through Alzheimer’s is making me better at life
Five years ago, my mother was diagnosed with early-onset Alzheimer’s, at the age of 62. She’s 67 now, and somewhere near the end of her journey with the disease.
It’s been a rough 5 years, to say the least. The past year has been especially challenging.
What I’m realizing now, is just how much life was asking me to change, and how much I let it. Not by choice, so much as necessity. When extreme, unwanted and uncontrollable change comes into your life, it challenges your head and your heart in unfamiliar ways. It leaves you disoriented and confused, hurt, angry, and desperate. If you do not find a way to stay malleable through the experience, it will be even more difficult.
That is just one of many things I’ve learned about life through this experience with my mother. I’ll likely be unpacking the lessons of this journey for years to come. But upon reflection now, I can already see that in the wake of the horrible, this ordeal has given me an awareness of myself that will benefit me through the rest of life.
Other than recognizing the value of staying flexible through trying times, mom has taught me a few other things.
I can handle discomfort, awkwardness and pain.
Rarely in the past year, as I helped care for my mother, did I ever have the feeling like I knew what I was doing. I took turns with my father dressing her, bathing her, feeding her, cleaning incontinence messes. If I was paying attention to how I felt, I usually felt awkward. I constantly felt like I was winging it, sometimes not knowing if I was making things better or worse for her, as she had no ability to let me know. But also, I rarely thought about it. I just did. I moved forward, took stock of how it seemed we were doing, and adjusted if it felt necessary. Rather than paying too much attention to how uncomfortable I was, I learned as I went, letting her guide me.
It’s so valuable to see that you can be uncomfortable, and still get stuff done. You can feel awkward, but the awkwardness doesn’t need to matter. I think a very big secret to getting through this life is to be comfortable with discomfort. Discomfort is inevitable, but it’s not a problem. What tends to cause us problems is when we fear discomfort, and then the stress or defensiveness gets the best of us. Or, we go out of our way to try to avoid discomfort, and then spend much of our lives in a mode of retreat. Instead, I’ve seen that we can let discomfort teach us.
I won’t lie, though. At times, my lessons have been brutal. Mom’s dementia often left her fearful of people and things around her, and that fear sometimes turned her into a cruel and vicious version of herself that was foreign to me. I had to bear my mother calling me names and saying things that no daughter should have to hear. But there was no place for me to go, to run, or hide. I had to take those moments full force, and move forward. I felt the pain, the heartbreak, the utter unfairness of life for doing this to her and our family. It has been the most extreme, raw vulnerability I’ve ever experienced.
And yet, when the raw feeling fades, I’ve gained something else.
An understanding of my own resiliency.
Five years ago, if you would have told me all the things I would have to do, experience, feel, see and endure along this journey with my mother, I might have vomited at just the thought. I would have marched forward anyway, because I love my mother too much not to be with her. Had I known ahead of time what was coming though, every day would have been full of deep dread. I would have had the constant worry that I would not be able to do what was needed of me. I don’t think I could have convinced myself that I would be able to be the kind of person to get through what was to come.
When love is involved though, you find a way to do all the hard things and get through the tough moments. Plenty of those moments have, quite literally, knocked me to my knees. Grief and pain and misery have been no strangers. But how powerful it has been for me to see they’ve only visited. They have not taken up residency in my heart. When the emotional bruises have healed and I stand up again, I notice I have more grace and strength available to me than I had before.
All of this has been so good for me to see and recognize. I have the practical experience of going through the worst thing I imagined, and found I am stronger, kinder, more compassionate and less afraid of life than I was before it. It’s a hard way to have to see these things, but I still have gratitude for the seeing.
I hate what Alzheimer’s has done to my mother, but in the most important way, she is still the mother I have always known. Even through this horrible disease, she is still teaching me, still making me better at life.
If you have appreciated this written piece, consider purchasing my new book, Love Doesn’t Care If You Forget: Lessons of Love from Alzheimer’s and Dementia