Follow up on “what you took from me”

wose · January 30

I wrote a follow up of my own from @Bill_2001 . I often hesitate to post cause our relationship doesn’t carry the wonderful long love story that many of you do. But then I realized maybe my post will resonate with someone. Like @BPS penned “how long” I lost my first hubby to leukemia in 1999. I never wanted to move on but I did with alot of nudging. My DH and I have been married 16 years. He is 77 and I’m 67. He was diagnosed in 2021 but I didn’t connect the dots. I can safely say things turned really hairy back about 2017. I feel bad I didn’t know. I thought it was our marriage. Here it goes:

There is a tall, dark, handsome man in the living room. I come home after 12 hour days, he doesn’t greet me at the door. He doesn’t reach out to embrace me. He doesn’t offer a kiss or even a word of comfort. He is strong, stoic and oh so magnetic. I had hope. I had dreams. I had plans for us. When I retire, it will be our time. Things will fall in place and finally we will be happy. Dementia robbed me of my hope. There will be no 2nd or 3rd chances. We cannot work things out. I stayed with you through all our struggles because there was always hope. Hope that someday you would see me, love me, make an effort for me. Hope our marriage would grow, improve or even flourish. There is no more hope. He sits in his recliner, blinds closed in a dimly lit room and watches the same programs like it’s new. The only time I hear his familiar voice is when he’s berating me. He still eats my home cooked food although less now. He still hunts for the sweet treats I prepare daily. He still knows me, but he doesn’t want to. My husband with dementia hates my very existence but I must keep holding on to our nonexistent hope. Quote from Brandy Clark… “This is where the hopin turns to knowin that there ain’t no going back.”
I truly hope I didn’t offend anyone.

Jeff H · January 30

I hear you. You are not alone.

Chance Rider · January 30

I can relate in so many ways. Sending hugs.

White Crane · January 30

Sending hugs.

BethL · January 30

😢 Wose, this makes me so sad for you. May God wrap His loving arms around you and give you peace.

marier · January 30

Thank you so much for sharing. I can relate and I am sending you hugs.

tboard · January 30

https://alzconnected.org/discussion/75229/follow-up-on-what-you-took-from-me

I am in a similar situation. I had hoped to retire and maybe we could do some things together. He calls me the "B" word. He acts like he hates me but I recognize that it is the disease. I don't think it is his fault. I don't think it is mine either. My life sucks. Alzheimer's is a horrible disease. No one but caregivers care about the people who are afflicted and as caregivers we are on our own. I try to find one thing I can enjoy or be thankful for each day. Last year we would have celebrated our 45th wedding anniversary. It was a milestone.

Biggles · January 31

That is one very sad tail, my heart aches for you and I am truly sorry for what you have been through and what you are going through, I am so sorry. Life never seems to work out the way we imagined. I must be one of the lucky ones (ha ha lucky with dementia??) Yes one of the lucky ones because my DH with VD and Aphasia is still so sweet and kind, we dance (shuffle) in the kitchen with music on my iphone tucked into my back pocket and he pushes the vacuum because he wants to help. I hope that never changes but I am on guard just in case. Dementia is such a horrible unforgiving disease, robbing you of all that you wished for, draining you of all your energy and demanding all of your care and attention. I am so sorry.

Bailey's Mom · January 31

Wose…I am right there with you. Not everyone can garner strength from remembering how sweet & kind their spouses were before dementia. If they weren’t kind before it is hard to say…it’s just the disease talking…I feel for you…

Lilydaisy · February 1

You don't deserve what you are experiencing or how you are being treated. How your marriage worked or didn't work is not as important here. Everyone who is on this site seeks input or is tryng to provide helpful feedback. My situation is different but I have a couple thoughts.

You didn't mention adult children. It does sound like you could use a regular break. If so, there could be a day care he could go to. Or perhaps there are family members or an old friend of his who could stay with him a bit. Some churches have programs for this. If family financials allow, or with Medicaid help, having him move to a memory care facility could be better for both of you. Stay strong. Don't do this alone.

JC5 · February 2

I am right there with you! Thank you for being so open and sharing what is not easy to share! Hoping for a better future only to realize it will never happen . It’s hard it’s sad it’s not fair.

howhale · February 3

We are here for you and many of us have experienced much the same with our loved one during their travel through this disease. When it seemed as if it would never end or improve, it did. It seemed an eternity but it did change. Never feel bad for venting here, we have all done so and found support from everyone else. It is your turn to let this group help. Experiencing this disease with a loved one who absolutely does not accept their condition, nor realize their behavior, is a living nightmare. For many, maybe most or all, as the disease progresses these behaviors may change, diminish, fade away but bearing the pain and stress of that time until it does is devastating so come here and let the group help.

Call me Gram · February 3

Dear wose,

I am currently listening to the audiobook, Before I Lose My Own Mind by Beverly E. Thorn. In chapter 7, she discusses the unhelpful assertion that "once dementia is diagnosed the patient is excused 100 percent of the time." She says she doesn't recommend harboring resentments, but she believes "it is crucial for a caregiver to have boundaries defining behavior they will and will not tolerate." In interviews, she has elaborated on this, recommending calling the patient's doctor for medication or sedation when in danger of physical harm, considering placement in a MC facility, bringing in outside caretakers to help, or turning to hospice if the timing is appropriate.

In the audiobook resources page on her website, Thorn provides a link to "A Caregiver's Bill of Rights" (along with multiple other resources).

Book resources on Beverly Thorn's website: https://drbeverlythorn.com/book-resources-part-1/

Caregiver's Bill of Rights: https://www.caregiver.org/resource/caregivers-bill-rights/

I appreciate Thorn's sense of humor in the book, and her honest insights from the perspective of a caregiver who is also a clinical psychologist. I don't agree with everything she says, but I have gained a lot of insight in listening to her experiences. Thorn has experienced all stages of caregiving, including stage 8. I haven't yet listened to that part of her book (about loss and grief).

Praying you can find some relief and comfort. My heart goes out to you.

Gram

tucson anne · February 4

https://alzconnected.org/discussion/comment/265149#Comment_265149

Thanks for this suggestion that sounds like a welcome change of a book. My library has it on Hoopla for free and I just checked it out!

CindyBum · February 4

Sending you strength and a big hug to you, wose. I’m so terribly sorry this is what you’re going through

Russinator · February 4

((HUGS))

Elizabeth607 · February 5

https://alzconnected.org/discussion/75229/follow-up-on-what-you-took-from-me

I feel it too. :(

JC5 · February 8

I can relate too. I can’t blame the disease when it’s who he has always been, just worse now. I too was hoping for a happier content life once I retired, but …. Last words I heard screamed at me before bed was that I am a F—- A—Hole ! Thanks for sharing and be strong

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