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What should we be hoping for?

Timmyd
Timmyd Member Posts: 21
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Several years back, after months of testing and imaging, we got the EO ALZ diagnosis from the neurologist. Prior to the diagnosis, upon our first visit, I noticed all the rooms we used at neurology has many boxes of tissues. I thought that was odd, but we eventually found out why there were there. Going into this, I understood that ALZ was among the possible diagnosis we would hear so I was educated on what the diagnosis meant.

After presenting the diagnosis and getting our tears out, there was time for Q & A. The last question I asked our neurologist was "what is it we should be hoping for?" We got an empty blank stare. I repeated the question and again the neurologist declined to say anything as if completely unprepared for that question. I have been haunted by that moment for years. I need something to hope for, regardless of how unlikely it might be. I can't imaging waking up each day with no hope.

For those people who have have made it with their spouse to the later stages, how would you answer that question? When someone is first presented with the certainty of an ALZ diagnosis, what is it that person and their caregiver should hope for?

Comments

  • Arrowhead
    Arrowhead Member Posts: 383
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    All you can hope for is that the transitions that they will be going through will be as easy on both of you as possible. After almost 9 years, my wife is well into stage 7, and she has avoided many of the problems that others have developed. Just remember that they will never recover and will only slip farther away from you until they are gone. There will be emotional traumas along the way, and you need to find ways to deal with them. I hope that you will.

  • BPS
    BPS Member Posts: 196
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    I would like to give some positive hope but I think the best you can hope for is what Arrowhead said, and maybe for true support from some family or friend.

  • Quilting brings calm
    Quilting brings calm Member Posts: 2,723
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    The answer to that is individual to you and probably changes over time. Some hope for a longer than average stage 4 and 5. Some hope for something else to take their loved one rather than the long goodbye. Some hope to keep their loved one at home the entire time. Some hope they can find and afford a good facility because they need a plan B. Some hope family will help. Some hope family will quit making life more difficult.
    What you shouldn’t do is hope for a cure because there isn’t one.

  • sandwichone123
    sandwichone123 Member Posts: 900
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    I've hoped that my spouse wouldn't have personality changes (he's such a nice guy), and that he would still know who I am. So far, deep into Stage 6, those two have remained.

  • RetiredTeacher
    RetiredTeacher Member Posts: 91
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    Ditto what the previous respondents have said. Acceptance took me a LONG TIME. Looking back on this journey the hope I would suggest is to make as many positive memories with your LO as soon as possible, while you still can. The reality is this disease is progressive and you only have limited time to still make some positive memories together. We will all likely live beyond our LO's time on earth and when they are gone, either physically and/or mentally, memories are all we will have left to hang on to. I don't want all my memories to be the devastatingly sad last few years. Make what memories you can now, while you still can.

  • RetiredTeacher
    RetiredTeacher Member Posts: 91
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    Well said White Crane.

  • Abby627
    Abby627 Member Posts: 21
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    Beautifully said, White Crane!

  • Biggles
    Biggles Member Posts: 348
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    Thank you White Crane so very beautifully said. Such special hope.

  • Biggles
    Biggles Member Posts: 348
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  • midge333
    midge333 Member Posts: 445
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    I hope for these things for my DW:

    1. Very short stages 6 & 7.
    2. A quick and painless death.

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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