Slow motion in Stage 8

ButterflyWings · June 17

Dear Forum mates, I am just checking in as the dust begins to settle (sort of) following my beloved DH's peaceful passing a few months ago, ending 6+ years of our devastating dance with dementia. I have thought of you all so many times, but have been alternating between some days of doing nothing but breathing and otherwise exhausting myself at times, slowly picking up the pieces of so many paused and undone things during his late stages (you know).

It feels like I am treading water most of the time, just aimlessly floating at other times. Emotions run the gamut - unexpectedly and all throughout the day, but mainly I feel so much peace, knowing that I took care of him the very best that I could, even during some terribly challenging times. I am so grateful for that, and for the life and precious time we had together before this horrid disease, and even the special times we were able to share periodically after Alz showed up.

I miss him so much, but was already missing him while watching the painfully obvious decline, especially the last years on in-home hospice (3+ total on hospice believe it or not, with me as lead caregiver). So much heavy lifting but we got through it. So, in a way, I think I got accustomed to that anticipatory grief and who knows how long it will take to reveal my true, "new" self as I come to terms with being a widow vs. a wife, and healing from the PTSD of dementia-caregiving when there is no real playbook for how to do that. Feeling a bit like a caterpillar right now I guess, and believing that once I emerge fully from the current cocoon, my new self will be different from the old me, but finally free and beautiful still.

I know this forum is the best place for all things caregiving, and that means Stage 8 too. It is not possible to put in words how very much this circle of experts helped me (and DH) through the years. This remains the absolute best advice his diagnosing neuropsych ever gave us. Thank you. Wishing you all the best. Just keep breathing. Whatever is happening today, will pass. Take good care of yourself. I am trying to do the same, and will check in when I can.

Babz0226 · June 17

I have been thinking about you and my thoughts have been with you and DH. I still hope to keep my DH home still stage 7. Take care and know you have helped me ,now take care of you , so sorry for the loss of DH. Keep all the memories close to you— forever. What a wonderful caregiver, and always gave the best advice to everyone.

Thank you for all your discussions and guidance

Jazzma · June 17

Butterflywings, it is so good to hear from you. Today I joined you in stage 8 as DH passed away this morning. I am frightened by how bottomless the grief is, even knowing that it was an inevitable and ultimately merciful end to this long and difficult road. I hope we all find a way to joy and peace again in our new and so changed lives.

Quilting brings calm · June 17

BW - I haven’t left here yet. It is still a source of support and validation. I still find myself thinking I’m supposed to call Mom, go visit Mom, check in with the AL staff. By that I mean I almost feel guilty that I no longer need to do so.

I don’t think any of us will ever be who we were before this ‘ordeal’. Just have to figure out who we are now.

Russinator · June 17

((HUGS))

SDianeL · June 18

I was thinking of you and wondering how you were. You helped me and so many others here. I don’t know what I would have done if I hadn’t found this group. I felt so helpless and alone. The info I got here helped me take control when it felt like I was drowning. Thank you for everything. Hugs. 💜

Pat6177 · June 18

BW, thanks for posting and letting us know. I too have been thinking of you and hoping you were ok. I am both sad for you and glad for you. Be gentle with yourself as you go through this transition.

Biggles · June 18

Thank you BW for sharing your journey I cannot even begin to think how you feel right now but I hope it morphs into gentle peace. My goodness this journey is so sad and yet with everyone on this alz sight it is made endurable and has moments of true happiness.The understanding, care and support received from this forum is incredible. It is the site that has saved me from the depths of despair and is now showing me the way forward. We are not alone, there is always someone to talk to. Take good care of yourself, please come back and let us know how things are going.

White Crane · June 18

BW, thank you for posting and letting us know how you’re doing. I wish you peace as you continue your journey in stage 8. Take your time and be gentle with yourself. Big hugs.

harshedbuzz · June 18

@ButterflyWings

I'm glad you took the time to check in. I've wondered how you've been.

I found this piece on caregiver identity that resonated with me regarding how the role changes a person going forward.

https://www.npr.org/2025/04/01/nx-s1-5336314/caregiver-caregiving-identity-family-support-burnout

HB

tboard · June 18

Thanks for this. I keep thinking how I would feel after my DH is gone if I did not care for him to the best of my ability. I cannot imagine what it will be like to be free of caregiving responsibilities even if for a few weeks.

trottingalong · June 18

https://alzconnected.org/discussion/73305/slow-motion-in-stage-8

It’s really nice to hear from you. You have helped me over the years and I have followed your journey. I liked your description about feeling like a caterpillar. I do hope you to hear from you again. It’s like hearing from an old familiar friend.

trottingalong · June 18

We are thankful you are still here.

GothicGremlin · June 19

ButterflyWings - I'd been thinking of you recently and was wondering how you're doing. I'm so sorry about the loss of your DH.

As someone also in stage 8, I know exactly what you mean about the peace that you get from knowing that you took the best care of your loved one that you possibly could. It is exactly how I feel.

Please take care of yourself and check in here when you're ready. Hugs to you.

weareallunique · June 19

"PTSD of dementia-caregiving " so very true , it feels like Alice redux, the patient says they are "fine" , most Doctors tap dance around the issues since they can't do much [yet , fingers crossed] . And we're the crazy ones.

Thank you for stopping in .

Beachfan · June 19

@ButterflyWings ,

It’s good to hear from you, albeit under such sad circumstances. I am sorry for your loss. I am two years into stage eight, recovering, and at peace. But just last week I received a document in the mail with my name printed, followed by “widow.” It was the first reference, either written or spoken, to my current marital situation. It was a momentary setback. Best wishes going forward and know that your caregiving and compassion was appreciated and will be rewarded. 💕

Slow motion in Stage 8

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