Diagnosis: Caregiver
She’s exhausted, she spends every waking moment caregiving for her loved one who has Alzheimer’s. People tell her she needs to practice self-care. She insists that they just don’t get it; there’s no time or money for “self-care”.
Her neighbor drops by one morning and hands her a book-Alzheimer’s: Beyond Caregiving. “These were free over at the senior center, I picked one up for you” she thanks her for thinking of her all the while grumbling inside -who has time to read? She sets the book on her nightstand longing for the days she might read again.
A few nights later, dropping into bed exhausted, she accidentally bumps the book to the floor, it lands with a page open. She glances at it, there are only two or three sentences on the page and opposite a serene full page photo. She reads the words, they are comforting, relatable and validating. But she’s still tired so she closes the book and sleeps. She opens her eyes two minutes before her alarm goes off, she spies the book and opens to another pages. So it goes for several days, a page here and there until she’s done.
She doesn’t feel so alone anymore. Most nights she re-reads a page, maybe even two. She realizes the person who wrote this book is on Instagram -another thing she has little time for, she looks anyway-just out of curiosity. She sees more short stories and those calming photos and knows she has found a community.
The book I wrote, Alzheimer’s: Beyond Caregiving, is my expression of the very long and lonely journey of caring for my Mom for seventeen years. It’s a “picture book”, a book in which the pictures are as important as the text. The photos are images I took during that long span of caregiving. They depict the isolation I felt, the feelings of being lost and alone, and yet, there is a serenity to them, an escape into the quiet embrace of nature.
I survived caregiving because of a caregiver support group. I learned my way through by becoming comfortable with sharing the story I was living and with listening to others who were living a parallel story. When we are heard we being to heal. The caregiver life does not make this easy, in fact it’s almost impossible. I wrote this book so that even just one person might know that they are not alone, that I see them, I hear them.
I will always advocate for the horrendous disease that took my Mom. Extensive research and understanding is still greatly needed. But my heart lies with the plight of the caregiver. The lack of resources, the lack of compassion, and the lack of care for the caregiver is abysmal. The disease and the caregiver go hand in hand, it’s time to focus on not just the person diagnosed with Alzheimer’s but the person diagnosed with “caregiver”. Alzheimer’s and the Alzheimer’s Caregiver need a dual approach to treatment. A holistic (define by Oxford Languages as 1.characterized by the treatment of the whole person, taking into account mental and social factors, rather than just the symptoms of an illness. 2. characterized by the belief that the parts of something are interconnected and can be explained only by reference to the whole.) attitude of inclusion. The Alzheimer’s patient and the person caring for them are whole-heartedly interconnected, and both deserve the utmost care. The disease wholly consumes two people, and yet only one is provided treatment, care and attention.
More on this coming soon, the view from on top of my soapbox is looking pretty clear.
* I’m not saying there are no caregiver services, I’m saying they are lacking. There are some wonderful non-profits doing their very best to help the caregivers, I was fortunate to find one of those, but it still wasn’t nearly enough. And if not for a helping hand from a friend, I would not have had the energy to search for even that one. Those services should be part of the overall Alzheimer’s patient treatment plan. Caregivers don’t have the time or energy to chase down help. Sometimes we don’t even know what to do with it when it’s offered.