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Once diagnosed....

My husband has early onset of dementia....now what? Medication? Support Group? Just learn to live with it?

Comments

  • Denise1847
    Denise1847 Member Posts: 856
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    Hi Rport,

    Welcome to the forum, but I am sorry you have to be here. This is a wonderful group of people who will educate and support you.

    First things to do are: (1) to take care of your financial issues by seeing a certified elder law attorney before your DH becomes unable to make good decisions. (2) Educate yourself by reading the book "the 36 hour day" and by viewing Tam Cummings and Tepa Snow on You Tube.

    Secondly, if there are things you wanted to do or trips you wanted to take, do it now while your DH is able to travel etc.

    Thirdly, don't panic - just take one day at a time.

    Please keep viewing the forum and asking questions.

  • M1
    M1 Member Posts: 6,788
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    Welcome to the forum. It is a devastating diagnosis and it is tragic that there is still not much that can be done medically. If you live close to a research center, study protocols may have something to offer.

    Definitely get your legal affairs taken care of early; sadly, remember that your own papers also need to be redone as he cannot serve in any such capacity for you. And I completely agree with considering your bucket list as a couple, while you still can.

    I have learned more from this forum and have gotten more support here than anywhere else. Hope it will help you too. So sorry you are facing this.

  • Jeanne C.
    Jeanne C. Member Posts: 839
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    Hi @rport and welcome. What kind of follow-up did the diagnosing provider suggest? A game changer for us was finding a practice that specializes in memory care. They have neurologists, psychiatrists, geriatric internists, and social workers. Once we had a diagnosis, the geriatric NP became our go-to provider. And the social worker helped with all kinds of information.

    Denise's list above is an excellent place to start (pretty sure it's the same list she gave me after my first post). Lean on this group - they have been my lifeline.

  • Lgb35
    Lgb35 Member Posts: 93
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    You mentioned early onset so I am wondering if you are both working still. This seems to add a whole different set of worries. At least it has for me. I am 53 and DH just turned 60. He is diagnosed with MCI and we are both still working. He is starting to struggle with work so I am feeling like that will end soon. I worry about whether I will be able to keep him home until the end. Will I be able to continue working. I don’t feel like placement at any time is an option financially. I worry about how I will live my life after this journey ends. I am trying to take one day at a time but the thoughts still sneak in

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
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