Been a while …
I’d say my vision has certainly been selective of late. Well actually that’s pretty charitable. I’ve been downright sad with a tinge of hopeless, which means the exterior world has a way of disappearing. Too difficult to negotiate with feelings that make it almost embarrassing to speak any sorts of truth. Even to those closest to me or to the folks I know who are caregivers and connect to those feelings more often than any will say.
Staying present is this issue for me.
If one is present in one’s emotion, that means leaning-in to sadness or anger or general grumpiness or happiness or joy … the full gamut. Being present in joy brings bits of euphoria, of seeing a full world of shimmering glory. Even the potholes of life. The bumps in the road. The little imperfections. All take on the caste of beauty. Of wholeness.
When in the ooky doldrums of a mental flu, not so much. And for me it’s the biggest trap. It’s when I go silent. When my world view shuts down. When the out there of day-to-day life separates itself from the interior floods of anguish or rage or any other state that isn’t perfected as a shimmering … yes joyful … reality.
And them I’m alone in it. Unnamed. Unknown. Emotions buried with little bits of leakage that come out disguised in a hail of intolerance. In why me-isms. In do-I-have-to-isms. When really I’m sad because my darling man just asked me if we were really married.
I had nodded my head. Started to tell the story.
He professed a lovely surprise that we’d been together for 26 years. That we’d married each other the first time on the top of a mountain in Jordan 25 years ago; had done it with a Rabbi and a New York City marriage license, a second time, 23 years ago at a decommissioned Synagogue on the Lower East Side.
How it had been the wedding of the decade with waiters so cute everyone fell in love with them.
How our friend Ray started out with Mozart and segued to Sentimental Journey as we walked down the aisle. How our recessional became a Conga line to a 1930s recording of a Cuban band.
How the magic of the place gave our Rabbi visions of its glorious past, channeling its former Rabbis and Cantors as he intoned the beautiful words of our marriage ceremony.
All of that in a moment. One I feel now. Much removed. Three weeks later. Tears in my eyes, thinking about loss and gain. About the lovely smiles on my darling man’s face as I told him the story of who we were.
Caregiving for a dementia patient is a mixture of joy and cruelty.
My glorious man tells me he loves me all the time. Middle of the day, middle of the night, opening a bathroom door, as I am washing dishes.
What isn’t there is the connective tissue of our 26 years. The good of them. The rough patches. The sharing of life and one’s deepest thoughts and feelings.
That’s what I am mourning lately. What feels so hard and interrupts my day-to-day. The connections that bind. The reality of loss. And why, at times, I just don’t want to see.
Caregiving for a dementia patient is not for the faint of heart–but you are not alone. There are organizations that can provide a lifeline to caregivers from groups to engage with, to real help finding resources. Here are few to consider (click on the name to open a new tab).
Family Caregiver Alliance – Frontotemporal Dementia Resources
In New York City – Caring Kind