What should we be hoping for?
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
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Very good question, but the answer may only be answered by you. After we saw the neurologist I came to this forum. Then I decided this wasn’t for me because my husband wasn’t going to get like the others. I would “fix” it somehow, because that’s what I do. Fast forward a few years and here I am, daily. The support is incredible and the knowledge helpful. This is what I have learned for myself. Take one day at a time. Find joy in at least one thing. Don’t sweat the small stuff. Laugh. I’ve learned patience, I cannot control this disease (that took awhile for me). I do get sad, worried, stressed and angry. But every single day I find something I can find beauty in, even if it’s only listening to a bird or looking at the sky. I read what others are going through here and know I’m not alone. I hope you find the answer you are looking for. Give yourself time.
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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.
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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.”
That is my hope. I’ve seen this disease take DH’s mother and two of his sisters, and he has another sister who is further along on the journey than he.DH has started a Kisunla infusions. I know it’s not a cure, but if it can keep him a this stage longer, to me, it’s worth trying. While he has major limitations, he’s at home, able to do all the ADLs, and reasonably content
Progression is currently inevitable. Stage transition is eventually coming. I have accepted that. I am just hoping for later rather than sooner.
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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.
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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.6 -
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.
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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.
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What should you hope for? Hope for moments of joy amid the pain. Hope for your love to continue even as the disease progresses. Hope for grace in the midst of difficult situations. Hope for some laughter along the way. Hope for a loving and peaceful ending when the time comes. Then, when it's over, hope for the good memories to remain. These are things I hope for.
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Well said White Crane.
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Beautifully said, White Crane!
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Thank you White Crane so very beautifully said. Such special hope.
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I hope for these things for my DW:
- Very short stages 6 & 7.
- A quick and painless death.
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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.”
That is my hope. I’ve seen this disease take DH’s mother and two of his sisters, and he has another sister who is further along on the journey than he.
DH has started a Kisunla infusions. I know it’s not a cure, but if it can keep him a this stage longer, to me, it’s worth trying. While he has major limitations, he’s at home, able to do all the ADLs, and reasonably content
Progression is currently inevitable. Stage transition is eventually coming. I have accepted that. I am just hoping for later rather than sooner.
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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.”
That is my hope. I’ve seen this disease take DH’s mother and two of his sisters, and he has another sister who is further along on the journey than he.
DH has started a Kisunla infusions. I know it’s not a cure, but if it can keep him a this stage longer, to me, it’s worth trying. While he has major limitations, he’s at home, able to do all the ADLs, and reasonably content
Progression is currently inevitable. Stage transition is eventually coming. I have accepted that. I am just hoping for later rather than sooner.
0 -
”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.”
That is my hope. I’ve seen this disease take DH’s mother and two of his sisters, and he has another sister who is further along on the journey than he.
DH has started a Kisunla infusions. I know it’s not a cure, but if it can keep him a this stage longer, to me, it’s worth trying. While he has major limitations, he’s at home, able to do all the ADLs, and reasonably content
Progression is currently inevitable. Stage transition is eventually coming. I have accepted that. I am just hoping for later rather than sooner.
0 -
”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.”
That is my hope. I’ve seen this disease take DH’s mother and two of his sisters, and he has another sister who is further along on the journey than he.
DH has started a Kisunla infusions. I know it’s not a cure, but if it can keep him a this stage longer, to me, it’s worth trying. While he has major limitations, he’s at home, able to do all the ADLs, and reasonably content
Progression is currently inevitable. Stage transition is eventually coming. I have accepted that. I am just hoping for later rather than sooner.
0 -
”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.”
That is my hope. I’ve seen this disease take DH’s mother and two of his sisters, and he has another sister who is further along on the journey than he.
DH has started a Kisunla infusions. I know it’s not a cure, but if it can keep him a this stage longer, to me, it’s worth trying. While he has major limitations, he’s at home, able to do all the ADLs, and reasonably content
Progression is currently inevitable. Stage transition is eventually coming. I have accepted that. I am just hoping for later rather than sooner.
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((Huggs))
What everyone else said
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My grandpa had VD with frequent mini strokes (Tia’s). He didn’t know my name or that I was a grandchild but he did know that I was important. I think we talked and laughed more during his journey than we ever did when I was growing up. He smiled more than I ever remember him doing. He may not have retained those memories but I did. I think that is what we hope for. We can still create good memories even if they don’t. I am praying I don’t have to go through the violent outbursts some have dealt with. I feel like that would be the hardest thing to deal with
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It seems Hope is the flip-side of Anxiety. I have a card that suggests: "Pray for everything, worry about nothing". We need help to move from Anxiety to Hope.
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My hope, as my DH now transitions from 5 to 6 is that he dies before the disease gets worse. He shares my hope.
I would miss him desperately, but losing the love of my life is outweighed by more suffering. We have daily moments of joy, but what is coming is not something either he or I want.4 -
This is exactly the way I feel and hope for
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I think most of us feel that way.
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@upstateAnn : Well-said!
I would add to my list of hopes for my DW:
3. I hope she still feels loved even when she doesn't know me or her kids anymore.
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midge333.
Thank you. I hope for that also1 -
I have to be honest. I have no hope. This journey we are on has robbed me of any. I just try not to expect anything and stay in the moment dealing with things as best I can. Since I have no idea what our journey will look like, how or when DH’s ALZ will progress, hope eludes me.
“Blessed are he who expects nothing for he will not be disappointed”. Alexander Pope
5
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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