My dad doesn’t talk about his disease very often. Well … really … ever. So, when he does, we listen.
“We need to find a cure. Because I’ve got that.”
It was a simple enough statement, said to Mr. B, who works in the activities department with Alzheimer’s and dementia patients at a senior-living facility. And it was quiet — most everything Dad says is quiet, barely a mumbly whisper. But, at the same time, the statement rang loud and clear.
We told Dad that doctors and researchers are working so hard to find a cure.
But none of us said what we know: Dad will die with the disease. Right now, everyone who has the disease dies with the disease.
“Are there any drugs?”
Well, yes, there are. We tell him he’s taking them. But, what we know — and what he can’t understand? They won’t cure him. They will only temporarily slow the symptoms of the disease.
That’s the thing about Alzheimer’s Disease that I don’t think people understand. The ugly, dirty, gritty part of the disease that is about so much more than being forgetful. Nearly daily, I hear stories from my mom about scary — and progressively scarier — things happening with my dad.
Some days, the stories are as simple as Dad not being able to get his britches on anymore. Other days, the stories are about icy falls and angry words and actions.
Recently, Dad took a tumble on the ice. When they got to the urgent care facility, Dad couldn’t pinpoint his pain. In fact, he pointed across the room and told the doctor that it hurt him over there — in an inanimate object. This is just one of the many reasons why Alzheimer’s Disease is so scary.
My dad is a victim of a cruel, cruel beast. But, Mom? She’s a victim, too. Because he was supposed to be her partner and, now, she’s his caretaker. 24/7 — around the clock.
There are 2.5 times more women than men providing intensive “on-duty” care 24 hours a day for someone with Alzheimer’s.
There is no vacation time. There is no hazard pay. And, for the most part, it’s a pretty thankless job. (Though, I hope she knows how thankful all of us kids are for all she does. And I hope she knows I pray for her — and for my dad — every single day.)
Due to the physical and emotional burden of caregiving, Alzheimer’s and dementia caregivers had $9.3 billion in additional health care costs of their own in 2013.
My mom and dad are my rocks — and the foundation upon which so many of us have been built. And it is painful to see that crumbling as Alzheimer’s takes its toll on our family.
But, we are not alone. More than 5 million Americans are living with Alzheimer’s Disease. That is a huge number of people. If you multiply that to account for spouses, partners, children — that’s millions and millions more people affected by the disease on a daily basis.
There are days I feel hopeless and helpless. Like what I do or say or think about the disease doesn’t matter. Because it is still, I would wager, one of the most misunderstood diseases out there. And my voice? What good does one voice do?
But, here’s the thing — if all of us “one voices” stopped talking, the silence would be deafening. Instead, we have to speak up. We have to tell our story, our families’ stories. We have to do what little we can to move the efforts forward.
And, so, with what little bit of endurance I have left after a very tumultuous year, I will be joining my fellow Alz Stars again for the Fifth Third River Bank Run to raise funds and awareness for the Alzheimer’s Association of West Michigan. Because, every penny I can raise is another step closer to finding a cure. It won’t save my dad. But, it might save someone else’s dad. Or mom. Or brother. Or sister. Or child.
Oh, and one last parting tidbit? According to the Alzheimer’s Association, every 67 seconds someone in the United States develops Alzheimer’s. And, that, my friends scares the crap out of me.
— Facts and figures from the Alzheimer’s Association