Thoughts on "long Alzheimer's"
My sister has "Long Covid" so I thought I would write on "Long Alzheimer's"
Long Alzheimer's I will define as 10 years after diagnosis (either medical or historical) and 3 years since lapse into non conversational/non recognition states.
By this definition DW has been in "long Alzheimer's" for 3 years. She is my total responsibility but the delightful brilliant caring loving woman I married 48 years ago is simply long gone and not coming back. She is in a very good facility with a fine personal caretaker. We can afford her care with enough resources for me if I needed the same, so money is not a worry.
I see her on facetime every day and go in once a week / she likes my key lime pie
I have a "sort of" social life and the support of wonderful children and grandchildren. I will be 73 next week (on a cruise through the Panama canal) I do some professional work in my field.
but I have been dominated by this disease for 14 years watching my wife decline
I have a good therapist who gets me to concentrate on the good memories and that DW would want me to be happy. But its hard. She was the "girl with the electric smile" and stunning wit. I recall on our honeymoon (we have different last names ) Hotel clerks would ask if we were married She suggested she could say "would I be with him if we weren't?
I have not been in a hospital in 50 years. I am just looking for better ways to "get busy living"
Comments
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Yikes! 3 years! The love of my life has been in a similar state for the past 5 months and I was hoping it wouldn’t go on a lot longer but??? She resides in MC close to our home and I visited her most days
I'm trying to make a similar transition but keep having setbacks and I’ve only been in Dementia Land for 7 years.
Thanks. I’m going to use your post for inspiration to work harder at “living”. Freedom from 24/7 care doesn’t necessarily come with freedom from dementia land or “long Alzheimer’s”.
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Thank you Crushed for a thoughtful, realistic post about dementia and caregiver survival. My H is not in "long Alzheimer's" But 10 years in and 4 months is MC, it's difficult to remember anything pre-Alzheimer's. RickM I've come to realize that placement doesn't come with freedom from dementia.
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Hard to remember that average survival after diagnosis is 11 years. That obviously means that quite a few survive a lot longer than that. We're at ten years now.
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Hello Crushed - What you describe as "Long Alzheimer's" has been one of my biggest fears for DH. He is 13 years from the initial diagnosis. He is fairly healthy but the cognitive decline, while it had been very slow, has been shocking within the past year. I dread seeing him get to the point that he is unable to converse or recognize me but that may be coming soon. I plan to check out MC facilities in our area asap.
It seems that you are taking positive steps to "get busy living". I like your therapist's advice to focus on the good memories but I agree that its difficult. For me, the good memories are clouded by the overwhelming 24/7 caregiving DH currently requires.
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11 1/2 years at home following formal diagnosis (looking back, there were subtle signs prior to dx); then 17 months in MCF, passing in April. DH knew no one for about 3-4 years at the end; didn’t know or care where he was or who cared for him. I thought he would outlive me, all of us. He took no medication; looked fit and handsome right up to his death. An undetected intestinal bleed suddenly ended the journey. A blessing or a curse?
I am back among the living with grandkids nearby and reconnections with friends, trips to the ‘shore and to visit family out of state. But there is always, always, always that void. It softens over time, but it’s always there.
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I'm almost the same age as you, Crushed, and I'm wondering if "getting busy living" will ever happen to me. My DH has about 3 years since diagnosis and is now 85 yo. I'm having trouble contemplating where we're headed or remembering what he used to be like. Does this count as "living in the moment"? sigh.
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My DW’s decline has been rapid, it’s only been about 6 years since the first signs, and only 3.5 years since diagnosis (delayed by COVID’s impact on medical access). But she is about one year into non conversational/non recognition states. Bed and wheelchair bound, hand fed and sleeping 22 hours a day.
And yet I fear “Long Dementia” (DW has Semantic Dementia). I hope that she does not stall out in this state. The Alzheimer’s Association site even states that if patients reach the later Stage 7 substages, “Persons can survive in this final 7f substage indefinitely”. The medtechs at my DW’s MCF tell me the feeding reflex lasts until the very end, even when they can be considered virtually comatose when the PWD has been “otherwise healthy” (a phase I particularly dislike). There have been several PDW at her MCF that have lingered like this for years.
I still love her deeply, but yet I want her suffering to end now that her existence is that of her body carrying on after her mind has given up. Is this wrong? I am unable to move on until she has.
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Crushed, so good to see you on the forum again! I’ve been wondering how you were doing. Since I was offline so long I wasn’t aware of your situation. We, also, have reached the 10 year mark. 8 since the official diagnosis. But at least 2 more prior with warning signs. Calling it “The Long Goodbye” is no joke. I’m grateful for the clarity he’s maintained. But as he’s begun to take the downward slide, I’m hoping for a fast end. For his sake, and for mine. You’ll be in my thoughts, Crushed. Have a wonderful cruise, and and early Happy Birthday to ! SH
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My DH is 7 years into "dementia land" since the first signs. He is at stage 5. The thing I fear the most is that this will go on forever for him. This is the worse disease because of how it robs the person of their identity and dignity while practically killing the caregiver. I pray every day that God will take him and not have him go on to the end. I am pretty sure that he will outlive me as the mental strain has contributed to my physical deterioration.
I marvel at all of you long-Alzheimer's caregivers. You are so strong. Kudos to you and may you find peace in your journey.
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It has been over 10 years since I admitted that something was going on with DW and looking back there were earlier signs that I dismissed. DW has not recognized me as her husband for over 4 years and probably about 2 years since I started asking myself if she recognized me at all. Her conversational ability has significantly decline for the past few years and now she is just speaking in single word responses or jibberish.
DW has been in MC for a little over 2 years and I visit her about 5 hays a week. She is generally happy and the one saving grace I still have is her love for music. Even though she is non conversational she can still sing along with the songs of her younger days.
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Crushed, you are blessed that money is not an issue and you can, indeed, enjoy life, travel, and know your DW is safe and in good hands. I’m so glad you are taking care of yourself. This mean illness leaves holes in our lives. You’re doing your best to carry on and live rather than dry up and waste away. Good for you!
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Going on seventeen years, Crushed. I don’t know if he’ll ever be considered long haul Alzheimer’s by your definition as his brain is affected in different areas, but it’s been a footslog for sure! So good to hear from you again. Happy cruising birthday to you!
Speaking of cruising, I’m contemplating taking my husband on a dementia friendly cruise to Alaska as it’s our 50th wedding anniversary this year. We always planned to go one day. Didn’t think it would look like this, but here we are.
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I have a different approach to what all of you have said...my DH was diagnosed in 2015 with AD. Jerry and I did a lot of trips by ourselves and with our son, daughter-in-law and grand-daughter until Covid. I thought about MC ...checked out many facilities here in S CA. When it came time for an opening I could not do it. Now, almost 10 years I have my DH at home with caregivers during the day to help me get him up in the morning and to bed at night. Yes, it is expensive but I can be with him everyday...sleep next to him at night (he is in a hospital bed) and (our bed) I am by his side. He gets wonderful care everyday (luckily he sleeps all night so I get rest). I have no regrets about traveling...my family is wonderful and my son (an only child) helps out several times a week. My caregivers are amazing.
My care manager was fantastic until she started to encourage me to look into placement for DH. I thought that was what I would do until I realized that is not what I wanted to do! I was determined to keep my DH at home and so far that has worked out. He has been on Hospice for almost a year. I am lucky he has no physical issues except AD.
I just think we all have to think through what works for each of us. My DH would have been so unhappy at a MC facility...he was a aeronautical engineer..brillant man ...I am hoping for a long life with him... he is my DH ..."in sickness and health" 54 years in June!! And yes...he would have done the same for me!!
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Have a Happy Birthday Crushed! Thank you for the thoughts on Long Alzheimer’s .
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I went on an Alaskan cruise may years ago. The view from the ship as we cruised the coast line was gorgeous. I think an Alaskan cruise would be enjoyable even if you never left the ship, in contrast to many cruises, where one sees nothing but sea.
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Encouraging to me to hear you have kept your DH home that is my wish everyday . We have been married almost 56 years and my thoughts are like yours, I hope I can do it for him.
Thank-you for the encouragement
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DW was psychotic and aggressively wandering when she was placed. Within a year if I tried to snuggle in be with her she became agitated and aggressive. She had no idea who I was . The stress and worrying were also affecting my health. Her cognitive function is now zero. She does not respond to anything except food put in her mouth
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Crushed, I'm glad it is working out for you; you did the right thing for both of you. Enjoy your bd cruise. I think as caregivers we are all headed towards the same destination, just on different paths. xo
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It is so helpful to read all these comments. My DH is somewhere in Stage 4 or 5 - really hard to know as he seems to check some boxes and not others! He is only 67, but I have seen signs for years. However, I can see that the journey ahead is unique for each person and it is really impossible to know what lies ahead in any specific case. It is important to know that the time frame can be longer than 10 years, and the way this terrible disease unfolds in unknowable in advance. Grace, wisdom and peace to all of us as we serve as the guides and navigators for our LOs on this journey.
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Cherjer, I have the same approach as you. I too, have my husband next to me at night, he’s in a hospital bed, and I sleep on the sofa next to him. I can hear him breathing. We’re living primarily in the downstairs of our home now because the stairs have become too much for him. He has been incontinent for a couple of years, but treating it with calmness has made it just another part of the daily routine. In-home care is expensive and so far we are getting by with one caregiver, but at late stage 6, there will come a time when we will need more in home help. I too, am hoping for a long life for him.
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Have a wonderful trip, Crushed! You have certainly earned it.👍️
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Yes! Take a look at this…. https://www.elitecruisesandvacationstravel.com/
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I don’t think it’s an approach per se to keeping our spouses home. I had planned to keep my husband at home but his paranoia and delusions produced unsafe behaviors. He required a secure, routine, controlled setting for his well being. The stress of the middle stages for him brought somatic delusions of daily headaches and/or stomachs. A smaller, locked, routine, with fewer belongings to be worried about helped to keep him calmer. It depends on much more than the mind set of the caregiver in being able to keep loved ones home. I’m happy for those of you who can, as it’s horrible loss letting go to the professionals who will never love your spouse or take as good care of them as you. Sigh.
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Love this. Such a beautiful approach hope I can feel this way to the end.
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I wish I could keep DH at home. But it reached a point where I knew it wasn't sustainable. I'm really happy, envious even, for all of you who could keep your LO by your side. But I've gone to hell and back with DH and don't ever want to go back there again. I want to just remember the Dr. Jekyll side of him. The Mr. Hyde side can go to oblivion.
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Thanks for your insights on why the need to place a spouse may override your original plan. Each PWD is different and we can't know ahead what path we will need to take. Blessings to you for taking such good care of your DH and being able to do what was best for him even when it was painful and sad for you.
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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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