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A New Mindset for Love in the Time of Dementia

Caregivers: Dementia | Last Active: Jun 14 7:27pm | Replies (32)

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@sporkandromi

Thanks for your underserved kind words. As you know from the private message I sent you, I have meltdowns.

George and I take out our frustrations on each other. He doesn't deserve my impatience, but I get especially frustrated because I can't just go all for a walk, drive or swim. (He can't be left alone; so we will be joined at the hips until the end of time.)

I also get frustrated because I have to listen to him moan and groan all day long. (In addition to Alzheimer's, Lewy Body's, vascular dementia and Parkinson's, he has chronic pain--the aftermath of two spinal cord fusions.) I also have to listen to him say on a daily basis that he might as well be dead. (He is not suicidal but he has awareness of his physical and mental decline, which he hasn't accepted.) Furthermore, it's almost impossible for me to finish an email, pay a bill, drink a cup of coffee, etc., without multiple interruptions.

Don't be hard on yourself for "loosing it" because your bar is much higher than mine.

Best,
Lilly (George' Wife)

P.S.

I recently bought two new paintings, and I told George that we have to live a while longer to enjoy my investment.

The first photo is an image depicting a mummified version of me. (We caregivers are still alive because we have learned to live life wrapped up like a mummy. At least one study shows that 41% of Alzheimer’s disease caregivers die from stress-related disorders before the patient dies; and that caregivers have a 63% higher mortality rate than non-caregivers.)

The second and third (duplicate) photos are images of a painting depicting George and me on our dementia-ridden path, joined at the hips. We are partway in the ground but still mostly above the ground.

The fourth photo is an image of a sculpture in our art collection. The scupture is a metaphor of my existential angst, which explains but does not excuse the explosive/passionate side of my personality.

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Replies to "@sporkandromi Thanks for your underserved kind words. As you know from the private message I sent..."

@georgescraftjr

Once again--I hope you finally got my private reply--I perceive resonances between the circumstances you (and others) describe and my own. Though each of us may choose somewhat different modes of coping, we must all seek paths of escape from the enormous strains and provocations we endure. It does not, however, to express those feelings to the cared for.

Where you use paintings--commissioned?--I use photos of the two of us at various stages of our life, not for purposes of nostalgia but to gain acceptance on both our parts that life evolves. full adventure early, more and more constrictions in our 80s. Seems to work yhough, of course, not all the time.

May the flowering of spring bring us all a bit of added relief.

Tom