They are still there

tlarkin

My wife was formally diagnosed with early onset ALZ in 2018 at age 61. Her symptoms had started 2-3 years earlier. She was enrolled in a research protocol in 2019. Unfortunately the disease has marched on and now she in in a memory care facility with late stage disease. It has been a difficult journey. One thing that keeps coming up is the notion that I will lose my wife twice, once with her loss of memory and the second when her body finally fails. I don't believe that this is correct. She is still my wife. A few months ago after being non verbal for more than a year we were walking down the hall she suddenly stopped , looked at me with a whimsical smile and said.."I'm still here". All I could do was laugh, smile and give her a hug. She hasn't spoken a full sentence since then but smiles when I walk in, laughs when she sees her children. She requires 24 hr care but I firmly believe that she feels our love. A few months before my brother died from a glioblastoma he became bed bound and non verbal but no one said we lost him twice. I think this a myth that gets attached to patients with ALZ and is a disservice to them. Recent research with patients with severe head trauma in vegetative states has revealed that they may very well be aware of their surroundings and respond to some verbal, auditory or visual stimulation. The idea that "they are already gone " can lead to isolation and decreasing attention with the thought that it doesn't really matter because the patient can't differentiate the difference. I maybe wrong and frequently am but firmly believe my wife feels the love and will continue to try and connect with her even though she may not be able to respond. The light is still on, sometimes it's just hard to see.

SDianeL

I agree with you. My husband wasn’t communicating much but one day he looked at me and said “we’ll get through this” I replied yes honey we will. I don’t think he knew what “this” was but he still had hope. Another day before he passed I said I love you honey and he turned and looked me in the eyes and replied clearly “I love you too Babe” .. it was the last full sentence he ever said to me. I will cherish that moment always. I too believe he knew he loved me and that I loved him until the very end. The nurse told me the day he passed to talk to him continually as their hearing is the last to go. So I did. 💜

SusanB-dil

Hi tlarkin - please hang onto that phrase that she said to you. I have no doubt that a lot of our LOs can still feel the love between you and them.

Some of us do not have that. My mom and I were never close. Whatever little there was between us, left when she no longer knew I even existed. I am now 'her sister'. The long-goodbye, and losing her twice, for me is not a myth, but nor is it a disservice.

It is what it is…... If you've met one person with dementia, you've met one person with dementia.

harshedbuzz

@tlarkin I will concede that emotional intelligence persists well into the disease progression. A PWD can have an almost "spidey sense" about the mood of those caring for them. Your love, impatience, sadness, frustration, boredom, and fatigue will be picked up on.

But there's no one right way to feel about whether the essence of the PWD remains for of those who love them.

I had a complicated and uneasy relationship with my dad. He was a bit of a high functioning psychopath who had me in his crosshairs. I survived, did the work needed to understand things and maintained contact because my mom was married to him. As he lost his social filter, he said things and behaved in ways that were not unfamiliar to me but were shocking for others around him. Their version of dad was the life-of-the-party— bright, funny, beautifully groomed and always up for the next adventure. In our case, mom and his brother did lose him twice. I did not.

A dear friend was taking care of her mom with dementia as well. Friend was an only child who was unusually close to her mom. When her mom was widowed, she moved local to my friend, and they spent part of most days together for 20 years. Her mom was a devoted grandmother and one of those folks who always had something going on— gardening, cooking, knitting for NICUs and generally helping where she could. When it became clear that the mom was no longer safe at home, friend had a massive house built with a 4-room suite for mom. In a bid to support mom's ADLs, she even had her old gas dryer converted to electric so mom wouldn't be frustrated by a new control panel. When friend's husband was promoted and transferred to Denver, she stayed behind with mom rather than risk more decline— husband spent 2 years commuting between Denver, Philly, Europe and Asia to make this happen. TL;DR. My friend and her family loved her mom so much that they took it on themselves to create a single bed care-home and followed an AHCD with which they didn't agree until the very end.

Friend and I used to meet for long lunches that functioned as our private little support group. More than once she tearfully confessed that "the lady who lives with me is a nice enough little old lady, but she's not my mom".

People feel what they feel. And they should not feel badly about that. HB

H1235

My mil eventually did not recognize me, but she was always happy to see me. Somehow the relationship was still there even without the memories. My mom still has her memory, but our relationship is gone. She blames me for everything that has been taken away from her (her home, independence). She is angry, resentful, demanding and lacks empathy. I think it all depends on how the dementia has effected the person. They can’t all be lumped.

SDianeL

I thought some more about this and realized I wasn’t mourning the loss of my husband because he was still physically there and at times could let me know that he loved me. But what I was mourning was the loss of us. Our relationship. His companionship. Being able to talk, go to dinner, hug, kiss, celebrate our anniversaries, holidays, and travel. I became isolated and lonely. Now I’m struggling in Stage 8 to find my way without him. 💜

midge333

This phenomenon is described as "ambiguous loss". Your companion is gone but they are still physically present. There is a very good book by Pauline Boss that covers this topic well. When I read it, I finally understood what I was feeling with my DW.
https://www.amazon.com/Ambiguous-Loss-Learning-Unresolved-Grief/dp/0674017382