Can't Feel Joy unless He's Content

Are you old enough to remember the song "Can't Smile Without You":
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The song encapsules my feelings for my beloved hubby, George. I realize that I hardly smile anymore because he is in such a state of utter misery; and I only experience fleeting moments of joy whenever he smiles, which he rarely does.

Not only does George suffer from chronic physical pain following two spinal fusions, but he has existential pain from being aware enough to know that his mind is failing due to Alzheimer's, Lewy Body dementia, vascular dementia and Parkinson's. (For those of you who have read my prior posts, George was fluent in English and French. He also read novels written in French, German, Spanish, and Italian. He has a doctorate in history from Stanford, and he completed post-graduate studies at Oxford.) His brain has decreased to 11%, but due to his former "brilliance and superior intellect" (borrowing the words from his neuro-psychologist's report)--and to his cognitive reserve, he is very much aware of his physical and mental decline.

Unfortunately, despite all the support from you who have posted on this forum, I have decided that I would rather die than to place my beloved husband in a care facility as long as he is aware of what's going on. (I took him to visit several lovely homes, and he told me that he would rather die than leave our home.)

I have thought long and hard, and I know that I can no sooner place him in a facility without his consent than could I abandon a two-year-old child.

I just finished reading "The Little Prince," and now I'm reading a biographical work about the author, Antoine de Saint-Exupéry. He was no doubt a romantic and a fanatic. I am also reading "There is Nothing so While as a Broken Heart," anthology of essays by feminist and gay Jewish anarchists. Being a dementia caregiver who is adamantly opposed to the idea of having more in-home support (or out-of-home care) is akin to being a hopeless romantic, fanatic or anarchist.

Last night, I was fit to be tied, and I said some pretty awful things to George during my sleep-deprived induced craze. This evening, as I reflect upon the toll that caregiving has taken on me, I am still unshaken in my resolve to be his primary caregiver--even though we have the financial capacity able to hire full-time care. (We both do not like having strangers in our house. George hates being followed around by well-meaning caregivers who hold onto his belt loop!)

I admire those of you who have made the difficult decision to either allow caregivers into your home, or to place your significant other in a skilled nursing home or memory care facility.

Love and prayers,
George's Wife