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Too old for this/too young for this

Newly diagnosed spouse of 40 years. He’s in denial, I’m in panic mode and end times mode. And it’s only just started. Twist? He doesn’t want any treatment. Anyone have any experience with no treatment? Or know how it may go?

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  • SDianeL
    SDianeL Member Posts: 2,180
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    edited 3:49AM

    Welcome. Sorry about your spouses’s diagnosis. He’s not in denial. He has Anosognosia—When People Don’t Realize They’re Impaired. He can’t understand he has dementia. Sadly there is no treatment. It’s a progressive disease. If it’s early onset there may be trials but there are side effects and it doesn’t sound like he would agree to that anyway. The trials may delay progression by a few months at most. Learn all you can about the disease so you can help him. Read the book “The 36 Hour Day” which was recommended by a nurse. Search online for dementia caregiving videos. Tam Cummings and Teepa Snow have good ones. Get your legal affairs in order. Meet with an Elder Care Attorney right away. You will need DPOA, Medical POA and HIPPA forms. Just tell him you’re getting yours done and take him with you. Do not tell him it’s because of his diagnosis. Here’s a chart of the 7 stages of dementia that lists behaviors. Some behaviors may show up later in a different stage but it will give you a general idea. This forum is the best place for help and support.

    without

  • SDianeL
    SDianeL Member Posts: 2,180
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  • SpiralStylz
    SpiralStylz Member Posts: 3
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    I’m so very new to all of this and especially this site. On top of everything all these abbreviations on this site are confusing and distracting. Our doc also said she doesn’t like to discuss stages? Is this normal? Who knows. It’s early days and I can honestly say I’m already ready to throw in the towel. Spouse is stubborn and arrogant in denial not in denial because he doesn’t see he is sick. He just prefers to hide from problems. Just normal for him. And the amount of decline that has happened recently is frightening. We all noticed things beginning to change within the past couple years. Except for spouse of course. But in 6 months, quite a lot. Not promising

  • blacksparky
    blacksparky Member Posts: 137
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    All I can say is sorry you have to be here on this sight but glad you found it. This site has really helped me and my wife with early onset Alzheimer’s get through each day. It’s not easy but everyone is here to help you navigate your journey. Remember that it is not your husband acting out but this terrible disease. Also please take the advice from SDianeL especially the legal and health DPOA and POA. It’s well worth seeking out an elder care attorney to help you with the paperwork. Keep asking for advice in the future and we will do our best to help. You are not on your own here. ❤️

  • BPS
    BPS Member Posts: 342
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    Just a few thoughts. When my wife was diagnosed over 9 years ago the treatment they prescribed was a medication (Donepezil). We were told that it helps some people for a while. I couldn't tell if it made any difference, and I know they have come up with other medications since then, but all any of them can do is slow things down for a while, and from what I have heard a lot of the newer ones can also have some bad side effects. After my wifes diagnoses we talked about it once or twice but after that I never used the words Alzheimers or dementia. We did acknowledge that her memory was not very good and anything else I just "volunteered" to do or help do the things I could tell were difficult for her. Most doctors seem to be very reluctant to try and talk about stages, I think they know that in a few office visits they can't really give a fair assessment of the stage and they don't want to say something that might come back on them. I have been on this site for over a year and I still don't know all the abbreviations but there is a list of the common ones in the upper right corner of this page. I don't post a lot but there are a lot of people here that have good information so keep coming back. Also make sure you have a DPOA durable power of attorney and other legal documents.

  • CindyBum
    CindyBum Member Posts: 517
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    Welcome and so terribly sorry you have to join our club.

    In my experience with my DW and her early onset dementia, the "slowing the dementia progress" drug my DW was put on (Galatamine) did very little, if anything at all. Her progression has been rapid and there's no way to know if it would have been more rapid without it.

    The folks above are correct, get your legal stuff in order with a certified elder attorney, find yourself a good geriatric psychologist, check out Tam Cummings DBAT for descriptions of the various stages and hang the heck in there. We're here when you need us.

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