Between 2000 and 2015 death from Alzheimer’s disease increased 123%. In the same period death from other major diseases in our country declined. This data point may surprise you as Alzheimer’s and related dementias today still share a common reality; they cannot be prevented, slowed or cured.
After my mother’s death in 2015, I met with her geriatric psychiatrist. Our conversation transported me back to the moments of powerlessness, loneliness and guilt I experienced throughout her 18-year dementia journey.
“Do you know what déjà vu is, Lisa?” the doctor asked. “Why yes, a feeling you’ve been somewhere before. A sense it’s familiar.” “Yes, déjà vu means the strange is familiar. Do you know what jamais vu means?” I shook my head, no. “Jamais vu is what our family and friends experience in dementia and Alzheimer’s – the familiar is strange. Fundamentally you struggle to identify something you know, something you’ve known your entire life but now it’s strange to you.”
In my mother’s illness I saw her only through the lens of my rational thought. She’d pick up her comb, looking at it as if she’d never seen it before and confounded by its very function. Taking the comb from her, I’d smooth her hair with my hand as we rushed out the door late to an appointment.
I was clueless to the complexities my mother experienced, the disruption of normal connections being made in her brain as she declined through the disease. This conversation I had with her doctor after she passed away provided insight and clarity. The kind of perspective I wish I’d had sooner in my caregiving journey!
Maintaining balance is critical for care partners, especially when supporting a loved one with a debilitating illness.
Some strategies to keep in mind:
Find your tribe
Your tribe may not be your family or friends. Search forums to find the best fit for you to connect with others on a similar emotional journey. For some it might be an in-person facilitated support group and for others it might be private social networking communities. What’s most important is to find a place where you feel comfortable sharing not only your story but also the raw emotions you’ll need to work through.
Change your perspective
You already know how difficult it is to live in your reality as a care partner so attempt to live in your loved one’s reality, even if only for a short time. Try to see the world through their eyes. Technology today affords many opportunities to better understand what a person living with dementia experiences through a distorted sense of sight, smell or touch.
Forgive yourself often
Caring for a loved one with dementia and Alzheimer’s disease can be a long and tiring journey. Although you’ll find moments of great fulfillment, you’ll beat yourself up for your missteps, too. Don’t be too hard on yourself. Remember it’s the disease, not your loved one you see in moments of tension. And it’s your loved one, not the disease you see in moments of lucidity. Treasure the moments of lucidity you share.
Find strength in the development of your own personal survival strategy. Having a strategy allows you to maintain your health so you can effectively care for your loved one. To learn more about Lisa and her work with those living a care partner life visit www.lisabcapp.com