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Scared

DonnaJaySki
DonnaJaySki Member Posts: 3
5 Care Reactions First Comment
Member
in Caring For a Spouse or Partner
My wife is 54 and was just diagnosed with early onset Alzheimer’s. I’m scared for her and myself. The changes I’ve seen in the past year now has a name. But that’s not much comfort. I think I’m still in denial. But I know I can’t stay in this place and I need this support. 👍

Comments

  • jgreen
    jgreen Member Posts: 201
    100 Care Reactions 100 Insightfuls Reactions 100 Comments 100 Likes
    Member

    Hi Donna.

    You’ve taken a HUGE first step to join this group! As others have said above, we are glad you are here. You will find love and support, lots of knowledge and experiences, and above all prayers and validation of your emotions. I second all the good advice you’ve received.

    Prayers and hugs to you.

  • DonnaJaySki
    DonnaJaySki Member Posts: 3
    5 Care Reactions First Comment
    Member

    Thank you, all. I truly appreciate your insights and I will find an elderly care attorney right away. If I can put my mind at ease about those issues. I’ll feel a little bit more in control. ❤️

  • PlentyQuiet
    PlentyQuiet Member Posts: 145
    Fourth Anniversary 100 Care Reactions 100 Comments 25 Insightfuls Reactions
    Member

    Yes to getting all legal matters sorted ASAP. DH was diagnosed with MCI nov 2021 at age 60. Entered hospice june 2025. It all went so fast that I was glad to have all of the legal parts in place for selling cars etc.,. EOAD can go quickly

  • CindyBum
    CindyBum Member Posts: 651
    1,000 Care Reactions 500 Likes 500 Comments 100 Insightfuls Reactions
    Member

    I am so sorry you had to join this group, but welcome. Terribly sorry about your wife. We understand the fear. We are here for you.

  • Timmyd
    Timmyd Member Posts: 284
    250 Care Reactions 250 Likes 100 Insightfuls Reactions 100 Comments
    Member
    edited October 2025

    Hi. Welcome to the group, I am glad you have found us. My perspective is a bit different. In our case, the difficulty of all of the testing followed by the official diagnosis of EAOD at 57 years old was a huge punch in the gut. There was no way I was going from that experience to immediately meeting with an attorney and discussing advance directives and estate planning. I am not sure my wife could have handled that and I know I could not. I was monitoring decline and waited about 10 months after diagnosis before getting the legal paperwork in place. As long as my wife could sign her name and the attorney believed she understood what she was signing, then we were good.

    The advice to get legal affairs in order is very good. I had to balance that against practicalities of managing the emotional health of myself and DW in the aftermath of getting the official medical diagnosis.

  • debriesea
    debriesea Member Posts: 61
    25 Insightfuls Reactions Second Anniversary 25 Likes 25 Care Reactions
    Member

    I also recommend a book, “Thoughtful Dementia Care, Understanding The Dementia Experience”, by Jennifer Ghent-Fuller, which was recommended to me on this site. I’m half way through it. It is full of information on helping you understanding what they are going though.

  • ghphotog
    ghphotog Member Posts: 708
    500 Care Reactions 500 Comments Third Anniversary 100 Insightfuls Reactions
    Member
    edited November 2025

    My DW also had early onset dementia with lewey bodies but we are in the final stages of what seems and will seem to you as an endless journey that never ends. It has been 8-10 years now and she is in the final stretches but that could still last a long time. However, if I could do it all over again knowing what I know now I would do it better. There will still be some beautiful moments between you and you will savor those because that really does take the edge off.
    I'm sorry you are just starting out but you will adapt, day by day, moment by moment and that's all you can do. Hang in there, find support any place you can. There are daycare options when it comes to the point as a caregiver you need a few hours now and then to yourself.

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

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