Way forward

Kit_Kat · April 17

Hello,

I am here to join one of the worst clubs.

I’ve been having a hard time lately, especially because my husband has started to accept—without much resistance—that he needs help. That’s not like him. I mentioned adult day care, and he said we should talk about it.

He is legally blind and was diagnosed when he was around 35 (legally blind).

Mild cognitive impairment late 50s. He can't recite months backward, etc.

I used to think cancer was the worst disease someone could get. Now I think dementia is the hardest—for the family.

And yet, if he’s lucky, he won’t fully understand what’s happening. I don’t know how this will progress. I once thought he would be completely blind by now, and that hasn’t happened.

Yesterday we watched an old episode of House. It was about a woman who brought her husband—who had young-onset Alzheimer’s, in his forties—to the hospital for an experimental drug. It was difficult but useful to watch. At one point, the man struck his wife, and my husband said that people should be institutionalized when that happens. I can’t imagine him ever doing something like that, but conversations like these remind me of what I know he would want.

I’ve always taken care of everything myself. This is as much as I can bring myself to write.

I try not to dwell on it. There are children working in sweatshops. I joke that I should write really depressing Hallmark cards. Still, I believe there’s a lesson in all of this. I look for it—the chance to grow, to become a better person.

Most of the time, though, it still feels unreal.

easy23 · April 18

"I joke that I should write really depressing Hallmark cards."

Thanks for making me laugh. Today my daughter told me I was being dark. I guess that's what being a caregiver does to you! Hang in there! We're all in this together.

Russinator · April 18

(HUGS))

Biggles · April 18

Hello KitKat how sad this all is, you sound angry, miserable and sad all in one, and yes the worst club you could join. The only thing is, in this club we are all in the same boat, the same but different. Vent lots it helps. In my opinion there is nothing good in this disease there are no good lessons to be learnt. It doesn’t matter if there are people ‘worse’ off than you, this is your journey and it’s not good. What I have found is how much strength and resilience I have had to find to support my DH 24/7 and still find joy in life. Your DH has no one else to rely on you are it. You have the added challenge of blindness I have the added challenge of Aphasia my DH can no longer string the simplest sentence together. One day at a time. Write, vent and cry.

Kit_Kat · April 18

Thank you for the kind words. I am sorry to compare misery. It's how I cope. Though it has allowed me to not seek help as " I don't have it that bad." I have learned more about myself, life, and marriage. You can't put off living.

Call me Gram · April 18

https://alzconnected.org/discussion/comment/270596#Comment_270596

Oh, Kit_Kat… my dark-humor side is hanging on to your words. I can see the card now… "Don't put off living, because you'll be dead before you know it." (Too morbid? Sorry. 😘) I could have a lot of fun with this idea of depressing Hallmark cards.

Sending you lots of love and praying you find joy in the midst of this unexpected journey.

Gram

Maru · April 18

Sorry that you have joined our not very exclusive club. I have chosen to try to learn the lesson in this and look at an opportunity to grow in kindness and gentleness. I confess, that there are times when I fail at that. But, what are the alternatives? Most days DH is still himself. I would never even think about abandoning him in his old age and beginning dementia. So, for me, it is chin up and make something good out of this.

CindyBum · April 18

https://alzconnected.org/discussion/75834/way-forward

One of my best friends said when she found out her husband has dementia, "I wish the universe didn't have so much confidence in me to keep growing and becoming a better person." I laughed pretty hard at that.

My DW passed two months ago. I did grow in ways I had no idea I could grow. I discovered how much I spent my life sweating the small stuff and that I also had it in me to honor the bright, kind and loving light that my DW was. I let go of achievement as the be all and moved toward love and caring and wanting to help instead. I'm less angry and bothered by things now. I gained a deep, deep sense of gratitude for the life I have had and that I get to keep living, for the love I got to share and for discovering I had it in me to pour all my love and care into my DW as she slowly disappeared before my very eyes. It was, turns out, truly was a privilege to care for her. I feel her around me now in her purest form — light and love — released from the shell that was imprisoning her.

If anyone had told me even two years ago that I'd come out of this terribly difficult journey and the loss of the love of my life with such a firm sense of gratitude and understanding of how fortunate I've been in my life, I would have thought they were totally nuts and likely would have told them so. Ha! But here I am.

Hang in there and big hug.

Call me Gram · April 18

https://alzconnected.org/discussion/comment/270611#Comment_270611

This is beautiful, CindyBum. You could write a book. I think your perspective is unique and it could help so many people. Your response to and growth through this experience is humbling and inspiring (and your sense of humor in so many of your posts has lifted my spirits more than once).

Thank you for sharing your life with us.

Gram

Russinator · April 18

CindyBum: Gram took the words out of my mouth.

BPS · April 18

You said "And yet, if he’s lucky, he won’t fully understand what’s happening.". That is mostly true in my wife's case. When I say to other that she wouldn't want to live this way, she is sage 7 and only knows the now. Some has asked if she is unhappy. The answer is that she is not always unhappy, she still thinks she will get better and I don't tell her otherwise. If I asked her 20 years ago if she wanted to live in the condition she is in she would have said no, but now with her thinking she will get better she is willing to live this way for now. The hard part is knowing the now will never get better and pretending things will get better. Yes there is always someone worse off than we are but that doesn't change where we are or make it better. My wife was diagnosed 10 years ago and I am dealing with some of these same issues again, it seems the same stuff comes up over and over.

SDianeL · April 19

this is a terrifying and heartbreaking club to be in but I don’t know what I would have done without this wonderful group of caring people here. I was lost and felt so alone until I came here. Your comment about depressing Hallmark cards made laugh and made me think of my Mom. She had a great sense of humor but I remember her saying once “Life is tough and then you die”. So that’s my depressing card contribution. Hugs. 💜

Kit_Kat · April 19

I had a good day today with my husband.

Thank you all for your thoughts. It was a long time coming posting here.

Your stories remind me that life can be beautiful, terrible, challenging and heart breaking.
We are not alone in this.

Biggles · April 19

https://alzconnected.org/discussion/comment/270597#Comment_270597

Touché Gram what fun we could all have with some of these scenes. Definately dark humour but at least we’d get a chuckle. Needed most when we fall into the abyss.

Sending lots of love and hugs to all. Thank goodness for this group.

Way forward

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