In one incredible “aha now I see” moment life can take us full circle. In 2012 we made a bold move in relocating my parents from New York to Florida, given mom’s Alzheimer’s (then mid-stage) and dad’s physical health challenges. We were hanging onto a thread of hope that a better climate, better community, and better care would help them rise above the struggles. It worked. They experienced new and fun things despite their ongoing health issues. We grew closer as I learned how to help and where to let go. Then, just as quickly as it came together, it began to fall apart.
As Alzheimer’s took a tighter grip on our lives, dad would often say, “where’s your hope? I’m not giving up. Your mom can be the miracle.” I wanted to hang onto his thread of hope but my rational researched-based thinking said no. So, I would remind him of the visible “aha” miracles right in front of us. “She still knows who we are!” She can do this or that … I’d spew out a list. Perhaps, I was really preparing myself for the greater fall. The cruelty of Alzheimer’s and the odds stacked against that kind of miracle spoke volumes in my mind. Sure enough, now four years into our sunshine-state journey, Alzheimer’s has taken power it doesn’t deserve and left undeniable destruction in its wake.
But wait! She still knows us and calls us by name! She puckers her lips awaiting your kiss and sometimes even blows them as you leave! Dad, do you see the miracles I see? Still, he searches for the ultimate healing. “She could walk again. She could be the one. Maybe it’s not Alzheimer’s after all.” My heart aches to see him hanging on a thread of hope. Then, at the same time, my heart leaps for joy over his child-like faith in the (seemingly) impossible.
“Maybe we can win the lottery and mom and I can live together again,” he tells me for at least the 100th time. But wait! Dad, you only factored care of one. She didn’t walk again … and now a greater fall has happened to you. I want to blurt it all out but I don’t.
I’m hanging on a thread of hope. I search, ask, try, pray, hope. Then suddenly, I HIT THE LOTTERY — without even playing!
Dad, remember that nest you were building in your mind? That house with the front porch mom always wanted. The one you wished she had? Well, I found it!
That worry over whether she’d been given enough to drink; that frustration over getting someone to lay her down for a nap when you ask; the sadness of watching her sitting in the wheel chair for every hour in between; the longing for Catholic communion together; the desire to enjoy meals together in peace and quiet while someone assists mom; the satisfaction of venturing into the kitchen to grab a snack or occasional beer; the comfort of someone lovingly helping you and mom, separately yet together, as it should be in your 63-year marriage. Dad, I found it. You might even say we won the lotto!
Her name is Sandy and her house is safe and secure; it’s also your house with a private bedroom and committed caring helpers for six other individuals. The Greenhouse Concept of caring homes that provide for meaningful lives is not in our region. Yet we sort-of miraculously arrived, full-circle, at that nest you were mindfully building. I never gave up despite my rational research-based thinking.
Where’s my hope, you ask? It’s always been in my heart. I never lost it. Alzheimer’s can’t steal that too.
I will keep on peddling. There is a lot of ground to cover. 97% of elderly prefer homes for 8-12 individuals over large-scale nursing homes. Three solid reasons models like the Greenhouse Concept outrank traditional long term care models:
- Nurtures elders in a circle of care
- Enables deep relationships between elders and caregivers
- Turns the institutional organizational chart upside down
We must continue to search, ask, try, and pray. We must learn how to help and where to let go. Just as quickly as it comes together, it can come apart. Keep peddling! Our loved one’s present is our future. Hope Matters! Hang on – it may just lead you to one incredible “aha now I see” kind-of-moment.
Sandy Tingle lives, breathes, eats, and sleeps the role of an elderly/dementia caregiver, and it doesn’t stop there.