I do a great deal of reading about Alzheimer’s and other forms of dementia. Personal stories, books, blogs, the latest news from the world of research, and of course, what our friends in Washington are up to.
Every now and then, I stumble upon something that touches me more deeply than usual. This recently published Huffington Post piece by Rebecca Emily Darling fell into that category – and then some.
Beyond Her Years
The writer captures the experience of slowly losing one’s mother to this dreaded disease with an eloquence and wisdom far beyond her years. I was in my early 40’s when my mom was diagnosed, though she began showing signs much earlier. I feel as though I was robbed of so many years of making memories: traveling, holiday traditions, laughter, an impromptu dinner or shopping date, or simply being able to sit and have a conversation. We forget how much of a gift that is – nothing more than a conversation with someone so trusted and loved.
Rebecca Emily Darling, Source: Huffington Post
Rebecca was just 26-years-old when her mother was diagnosed. I can’t fathom it. My own daughter is a few months shy of 30, and I can’t imagine her having to carry such a heavy load at that age. Unfortunately, it’s becoming increasingly common.
The latest numbers I’ve seen indicate there are as many as 400,000 Americans suffering from younger onset dementia and even that is likely to be grossly understated for many reasons, not the least of which are fear and shame. That, however, is a topic for another post.
Below, I’m sharing several passages that I found particularly poignant and eerily familiar. This is an essay you don’t want to miss. You can read the full piece by Rebecca Emily Darling by clicking here.
Helplessness
“One night, my mother fell down the stairs and I ran to her. I held her like a mother holds a child and asked again and again if she was okay. I clutched her to me and rocked her. I felt completely responsible for her and more protective of her than I have ever felt of anyone; just the very idea of her being in pain cut through me. I would do anything to make it better. I would do anything to make my mother better. I would even give her up as my mother if it meant she would be living her life as herself, even if it was without me, even if it was somewhere where I could not see her. I would do anything.”
Heartbreak in Slow Motion
“I am accustomed now to having a mother with Alzheimer’s. I am accustomed to not having a mother on whom I can depend, in whom I may confide, with whom I may simply converse. And when I think of how accustomed I am, my heart breaks all over again. It is a constant ebb and flow, a constant healing and breaking again like the ocean.”
Moments of Joy
“If I have learned one thing from my mother’s disease, it is that the heart has no limit to what it can feel. There is always a deeper love, and always a truer pain. And when I see my mother’s eyes light up at the sight of a simple flower or a chocolate chip cookie, I know that there is always a purer joy as well.”
Striking a Balance
In 2014, I took a new job that brought me much closer to what I believe is my life purpose; however, it also reduced my earning power substantially. Do I have any regrets? Not one.
Where am I going with this, you might ask. Well, this year, I’ll celebrate my 50th birthday, and my daughter her 30th. We’ll spend two weeks in Italy to mark these milestones. We’ve planned this for at least five years, maybe more.
Mom, Retirement Dinner 1998
Should I spend the money for this trip right now? Probably not. But I’m going to do it because I don’t know what the future holds. My mom retired before she turned 62, having worked hard, saved well, and done everything according to the book. She dreamed of two trips; one was Alaska, the other was Italy. Because of Alzheimer’s, she didn’t take either.
Life is short, my friends. Plan ahead, of course, but strike a balance. Live as though tomorrow isn’t promised, because the fact is, today is the only sure thing.
Thank you, Rebecca, for sharing this beautiful essay that touched me more deeply than you know.
This past week, I had the pleasure of attending a screening of 
Still Alice has the power to change the way the world views Alzheimer’s. This movie represents a breakthrough. Alice is far from the stereotypical Alzheimer’s patient, and the message is simple: Alice Howland could be any of us.
The Long and Winding Road... 