Have any questions about how to use the community? Check out the Help Discussion.

The struggle with acceptance and clarity about dementia's effects on our lives

What do you think it's about - what makes it feel hard even while in the early phases of dementia when your spouse/partner can still take care of their ADLs and still communicate somewhat?

I need help finding words to describe or explain - what is this nebulous sense of enormous change in our lives? It feels seismic even after all these years. Is it my imagination running wild and it needs to be corraled?

I need help to verbalize what this experience is like, to make it real... for myself and others.

There's an imp, or perhaps it's a gargoyle, sitting on my shoulder asking repeatedly, What's your problem? Why is it hard for you to explain, even to the new primary care doctor you saw today for your own health, what is going on in our house that I struggle with chronic depression? We have so many blessings and things to be thankful for.

I'm also especially vulnerable to friends/acquaintances who say, "Oh he seems really good." (I know they mean well, but I can fall into the pit of questioning my own judgement; questioning maybe he just had a temporary nervous breakdown that's dragging on. How does one let go of the painful loneliness of feeling unheard and/or not understood. )

Or is it my perception that needs adjusting? Am I mis-reading the truth of the matter? Is there some character flaw getting in my way of seeing clearly what's happening to us? What are the realities?

Is it mostly my own attitude, and it needs changing? How does one find mental/emotional peace about it? How can one dwell in acceptance of what is?

Thank you for the chance to let it out here in a safe place.

«1

Comments

  • Elshack
    Elshack Member Posts: 244
    Third Anniversary 100 Comments 25 Insightfuls Reactions 25 Care Reactions
    Member

    Storycrafter,

    Since my journey ended when my DH passed away on Nov 24th, the only thing I will tell you is to read all you can re: dementia/Alzheimer's. 36 Hour Day is a good read. Try to live in each day yet prepare for the future by getting your finances in order. Each case of Alzheimer's is different and try not to project what tomorrow or the next day will bring. Take care of yourself and hopefully you are already on a med for depression. You will be heard here and since we all have traveled this road, come back often for encouragement.

    I just read your bio. There is no right or wrong feeling to have. You already are a warrior!

  • trottingalong
    trottingalong Member Posts: 439
    Eighth Anniversary 250 Likes 100 Insightfuls Reactions 100 Care Reactions
    Member

    You nailed it for me, explaining how I feel. It’s difficult to explain to others.

  • RickM
    RickM Member Posts: 115
    Seventh Anniversary 100 Care Reactions 100 Comments 25 Likes
    Member

    "I think caregiving for alz/dementia is like have PTSD"

    Denise,

    My Dad cared for his wife with Dementia and Cancer. After she died my brothers and I had to eventually take over his life when he could no longer take care of himself. I still wonder if he really had dementia or PTSD. He cared for his wife (not our mom) until the end, with no help, despite our pleas for him to get assistance.

    I learned a lot from that experience. I'm hoping I learned enough to survive the experience of caring for my own wife.

  • Denise1847
    Denise1847 Member Posts: 859
    500 Likes 250 Care Reactions 500 Comments 100 Insightfuls Reactions
    Member


    Hi Rick, I wish you all the best that you will get through your journey in good mental and physical health.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more