My husband was diagnosed with Early Onset Alzheimer’s Disease at age 59 and I’m sharing what it means to be a full-time caregiver for someone with this cruel disease.
I’ve read about it and I’ve lived it and am still living it now. Being a caregiver for a spouse with early or young onset Alzheimer’s really is the loneliest I’ve ever been in my life. I’ve written briefly about this last fall as I started to realize that I was grieving, even though my husband is still living.
He is living and he is my husband on paper, but the disease took the relationship away years ago. One day, I think I’m over the fence, as far as grieving goes and then it’ll come up to smack me, right in the face. As with any grieving, there really is no end to the grieving, it just changes. If you move your spouse with early onset Alzheimer’s into a care community, and you are no longer physically the full-time caregiver, you still have grief, because they are there to remind you of what you’ve lost.
When I started the healing process from having been a full-time caregiver, and moving my husband into Country House Alzheimer’s community in Lincoln, Nebraska, the grieving just changed, like the sky changing color during sunset. Same day, same sky, shifting colors and patterns.
My husband moved out of our house the first week of May. It is now the middle of July. It took a month for me to start really sleeping again. It took that long to realize I was not tethered to my caregiver “chair of despair” as I jokingly called it. It’s all a transition. Just like he had to make a transition, his friends and family have also been transitioning.
And friends, no matter how much I’ve prayed, no matter how many days I’ve had when I felt the sun shining again, when a storm cloud comes, I have a hard time shaking it. Caregiving didn’t end when he moved into the care community, it just changed.
And the loneliness stinks. But, it’s something I know I have to sit in, sit in, sit in, and feel it fully, before I can heal from the trauma that causes it.