A New Mindset for Love in the Time of Dementia

I love how you reframed this part of life. I characterised my last teeth cleaning and trip to the dermatologist as spa outings. I was there unaccompanied and the focus was on me and I ate it up. Thanks for a great post.

@ktcosmos

Oh dear. There I go again with my typos ("desperation," "modus operandi," etc.). Sorry, I was rushing off to the "spa" for a new crown (as in "dental"--not a jewel-crusted crown or a crown of thorns).

George's Wife

You have a great mindset for sure. And the fact that you changed your mindset to a positive path-is amazing! Do you have moments in which you get angry-upset-or fall just below your new ways? I feel like I am starting to be able to be a more patient and understanding carepartner, and try very hard to be the best I can be, and then my husband says something so mean, spiteful and self centered, and I just loose it, and that's when I'll usually leave the house and go out for a ride with our dog. These ups and downs. I guess it's common.
It really does help to see the commonalities amongst us all here on this forum. Thank you all for sharing!

Your thoughts hit home. I try very hard not to feel sorry for myself . Have been married 61 years and watching my husband become a different person is hard. Then I feel jealous that no one seems to notice my health issues. Just know I must be the strong one and I'm trying really hard to do that.

@doyel ,
Yes - you now must be the strong one. However, you need not feel bad about feeling sorry for yourself. That is a normal human emotion, given the situation in which you find yourself. After 66 years of marriage, I learned first hand what was meant by the term "Dementia". My wife contracted that terrible disease and I became a caregiver for the next six years. Today I'm feeling sorry for myself, because I no longer have her to take care of.
It was a difficult journey, a learning experience from the beginning. And....one of the earliest lessons I learned was not to get upset when my wife would verbally attack - which happened often in the early stages. The main focus at those times was to avoid responding in kind - avoid conflict at all costs. As you note, you're trying hard to do just that. Please keep on trying, the benefits will be your reward.
All the best to you, please know that those who have never been there just do not understand.

@ktcosmos I drive to the store a pretend I am just going to keep going. I never do.

Momentary freedom to breathe and think uninterrupted is so good. I learned about brain plasticity at the Mayo HABIT program a year and a half ago, but with all the interrupted thoughts I sometimes wonder how or if my own brain is adapting to the challenge.

@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.

I so agree with your outlook. We have the best day we can with a bump here and there but so much to be grateful for.

@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