Is it true? After Alzheimer’s…

Nowhere

I’m reading Patti Davis’s (daughter of Pres. Reagan) memoir, “Floating in the Deep End: How Caregivers Can See Beyond Dementia, and she asserts “that once Alzheimer’s enters your life, it never really leaves”.  I’m wondering, for those of you have had a partner/spouse die what about it is still in your experience that might be different from losses due to another disease?Everyone here would like for our partners to be free of Alzheimers, and relief is often expressed hand/in-hand with the grief of finality that their travail has ended. So, if it’s to stick with us after our loved ones passes, what is it that sticks? Maybe it’s a thick scar of the long goodbye; Will be cumbersome to carry forever? Is there something we caregivers might understand or do  to better prepare for the final goodbye?

60 falcon

I don't know what it is that "sticks with" me since my wife died 6 months ago.  Adjusting to my loss of her is easier said than done. Sometimes I think I don't know much of anything anymore.  

But without any doubt, I know that I am forever changed by the experience of being a full-time caregiver with very little help for my wife died from EOAD.  The torture of seeing her abilities evaporate. Giving up absolutely everything in my life that made me "me" so that I could care for her. So many deep and permanent changes.  I recall during her last year or two that things were bad enough for her (us) that i wanted it to be over so bad. I thought that her death would free her and allow me to live life again.  Turns out for us that only half of that is true.  She is free again but I'm simply existing, not living life.  This is nothing at all like how I thought things would be.  

Maybe with a lot more time I'll start living a normal life, whatever the hell that is.  I hope so because I'm still relative young at 58. As much as I hate everything about dementia, it's a permanent part of my life that I can't get away from.  

I think a bit of advise I'd offer would be too try not to give so much of yourself that there's nothing left of yourself when your LO dies.  I don't know why all of this seems so different from other situations, for example being a caregiver for someone with ALS, drawn out cancer, or whatever.  Maybe it isn't different but it seems to me like it is.

Another thing, like other folks have said, this forum and everyone here was a lifeline for me. But my wife died and I still come here to read every single day, several times a day.  I don't want to, but I do. Why?  Its driving me nuts.  F*ck dementia.

dayn2nite2

It sticks with you.

Every time you put something down and can't remember where you put it.  If someone explains something to you and you don't quite "get it" the first time.  If you forget someone's birthday because you have too much going on.  Every time someone says you need to have a procedure or surgery involving anesthesia.  You'll kind of wonder...

I posted on another thread I've avoided having a colonoscopy for 10 years because when my mother had one, the anesthesia made her fall off a cliff.  She would call me for help finding her car in a parking lot, only worked a couple more weeks after that.  

When you see someone in a store who seems confused, you look at their face and you see they have dementia.

I see people with "dementia face" everywhere.  At the doctor, at the store, at restaurants.  Once you know that blank look, you see it everywhere.

So it's not your LO that makes it stick - it's the whole experience.  You're never really the same because you know this horrible experience and you've watched someone fade away.

Ed1937

You have two excellent replies there. For me, it's a slight bit different because my wife did not die from dementia. But dementia will be with me for the rest of my life, like it or not. She was probably stage 6C when she passed, and I remember every little loss she had. I remember how hard it was for both of us. I remember when she had a forceful major bleed in the hospital, where the bed was so full of blood that it was leaking onto the floor. And I remember how glad I was that she was taken early, and didn't have to suffer stage 7. And I remember how peacefully she went, and how much pain it caused me and the rest of the family. And the pain is still there. I remember our oldest son saying that all those things that were so important before she died, just didn't seem important anymore.

But I still talk to people about dementia, and I tried to give another caregiver some respite time. I met him, we hit it off together, and I stayed at his house talking about dementia, and what I was willing to do for him. We talked for over two hours. His kids decided to give him respite, but I told him I was available if he wanted me. I'm not done with dementia, and I doubt I ever will be.

Nowhere

Oh, my. I’m so sorry. I hope that all of you are receiving ongoing support! Seems like it is as important, or even more, than the challenges of being a caregiver for our loved one, especially if they passed at home. Many here share their loved one’s passing and share their gratitude for the community’s support and say goodbye. Understandably, but that might just be the beginning of the true loss/theft. Is the strand for those who have lost loved ones an active community like this one is? Personally, I love when those having been through all seven stages continue to be active here. I think you have much wisdom to share. 60 falcon I imagine I’ll be logging into this site afterwards, too,  It seems to be my morning and nightly routine to log in, even with my husband placed in a facility. Sometimes, I think distance would be healthier. But, we are suffering a loss, with our loved ones in front of or behind the curtain. Again, I’m so sorry. I hope my question wasn’t too upsetting. Ed, your voice on these boards is a gift. Thank you for giving of yourself and continuing to support others. I hope you feel supported in return. Ditto, Dayn2nite2 & 60Falcon. Wishing grace and peace in your continued journeys.

elainechem

My hubby died three years ago. I have used my loss to help others. I still go to AA support group meetings. My hard earned knowledge helps others who are still in the fight. I recently started a support group at my church. It has helped me to heal by giving back.

mommyandme (m&m)

All of you, so well said!  dayn2nite2, what you shared really spoke to me and my quiet thoughts, thank you! 

I’m starting to come back here more now since it’s been 2.5 mos. My first visits here since my mom died were done reluctantly.  I’m now coming thankfully.  I wish Alzheimer’s wasn’t going to be with me forever, but it is my reality…accept and adjust. 

Novice AD Partner-Ca

60 falcon "I think a bit of advise I'd offer would be too try not to give so much of yourself that there's nothing left of yourself when your LO dies". Thank you for this advice. I'm at the beginning, with a newly diagnosed partner. I have always been fiercely independent, and I will take this to heart. People keep telling me "look after yourself too" and I don't know what they mean. But I think they mean what you said, I need to keep living my life too. If I cannot live my life AND care for him, then he will need professional caring services. I am young and my life will go on. So I hope.