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Is there any life left after Alzheimer's caregiving?

Denise1847
Denise1847 Member Posts: 863
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I would truly love to hear from those survivors of the Alz. nightmare about whether they were able to recover from the physical and mental strain of caregiving. It sounds like we all are pretty much physically and mentally exhausted.

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  • Ed1937
    Ed1937 Member Posts: 5,091
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    Hi Denise. Next month will mark 2 years in stage 8. I think I have pretty much recovered from the physical strain, but I'm not sure it's possible to fully recover mentally. Yes, it's easier. But dementia is always on my mind, even though it no longer affects my wife. It still affects many others.

  • Denise1847
    Denise1847 Member Posts: 863
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    Thank you Ed. I really needed to hear that it is possible to feel "normal" again. May you find peace and joy again.

  • Denise1847
    Denise1847 Member Posts: 863
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    Dear Tom, I am so sorry for your loss. Thank you for your kind response. You know how it feels in the midst of this storm and sometimes I just needed to hear that maybe one day it will be better. May you find peace, love and joy on your next chapter.

  • elainechem
    elainechem Member Posts: 175
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    I have been an EOAD widow for over four years now. I have recovered a lot since then. My whole life no longer revolves around Alzheimer's. I spend more time with friends and family. Of course, I have a lot of alone time which I never had before.

  • jfkoc
    jfkoc Member Posts: 3,941
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    Of course there is life after our loved one dies. But that life will be forever the one changed by the experience we had. Isn't that always true.

    I will always miss my husband and his death leaves a permanent hole but my life will be what I make of it. It is up to me to find my way to fulfillment.

    That said, is it hard? Of course. Some days harder than others but what is the choice???

  • Denise1847
    Denise1847 Member Posts: 863
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    Thank you so much. It gives me hope. Stay well and live fully.

  • Denise1847
    Denise1847 Member Posts: 863
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    Thank you so very much. I pray you find joy, peace and love. I can only imagine that it is like recovering from being in a war where you have lost your loved ones. We are devastated but must move on.

  • Denise1847
    Denise1847 Member Posts: 863
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    Hi Ed, I am so glad that you are at least on the mend. I am just truly amazed at how the stress and depression affect not just the mind but the body. I am hanging in there but it is so hard.

  • Denise1847
    Denise1847 Member Posts: 863
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    It is good to hear that one can recover from this dreaded disease.

  • elainechem
    elainechem Member Posts: 175
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    Remember those Alzheimer's Association commercials, "The first survivor of Alzheimer's is out there"? I feel like I am a survivor of Alzheimer's.

  • jfkoc
    jfkoc Member Posts: 3,941
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    Added;

    Doing something that was new to me was really helpful. Everything was new including the people I met.

  • Arrowhead
    Arrowhead Member Posts: 362
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    My wife is still alive but is now in memory care. Physically, I have recovered. Mentally and emotionally, not so much. The strain of caregiving is now behind me, but the rest is still here. I have spent years trying to prepare for the inevitable, but I doubt it's possible to be totally prepared. I have already begun making plans on things to do and places to go when it's all over. I'm doing what I can now to transform my way of thinking from "we" to "me". "Our" bedroom is now "my" bedroom as I have changed it to fit my "single" lifestyle. I'm hoping that these, and other measures, will help me forge a new life when the time comes.

  • ghphotog
    ghphotog Member Posts: 688
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    edited May 23

    The never ending strain of caregiving from onset to deep into stage 6 was taking it's toll. I had no choice but to place my DW in MC. Even though caregiving burden has eased there are still many stresses regarding MC, her health, visiting but mostly knowing this draining our life savings very quickly. In another year or so we should be able to get medicaid help when everything is spent down for her care but honestly I'd rather not go that route as it was a nightmare trying to get medicaid help for my mom and I anticipate the same when it's our turn. I'm still tired but now that I don't have my mom to worry about on top of my DW I think I will breathe easier for now.

    . . . but I hope my DW doesn't have to take that one-way elevator ride to the bottom of this rabbit hole as she approaches 7 but she's in relatively good health so it's possible. I won't truly know how I'm going to be affected until it's all over. Sometimes I think I'm not going to have much of a life left but quien sabe?

  • Denise1847
    Denise1847 Member Posts: 863
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  • Denise1847
    Denise1847 Member Posts: 863
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    One of the cruelest parts of this disease is the length of the suffering for the patient and the caregiver.

  • ThisLife
    ThisLife Member Posts: 267
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    Midwest Gal: Thank you for sharing your journey 3 months out and the encouragement to keep seeking. My DH and I did not do things together, though. I'm so sorry about your dog. I had a dog with dementia. It's sad and challenging.

    I'm six weeks out. No longer in a fog but still dealing with the paperwork of survivor benefits, getting dental insurance, reimbursements from LTC, life insurance, etc. My body feels like it is a hundred years old. I'm tired and unmotivated. Right now, I still want to get off the merry-go-round of life. I don't want to see anyone, talk to anyone or do anything. I'm sure this will pass.

  • Beachfan
    Beachfan Member Posts: 805
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    Hi Denise, et al,

    Yes, there is life after dementia. I waited to chime in because I feel like a broken record 14 months into stage 8. Life is good here, very good. I just made a reservation for dinner at a lovely restaurant here at the Jersey ‘shore for me and my brother and sister in law. It has been a long, long time since I was able to join them (or anyone) for a meaningful outing. I miss DH every day, all day, with all my heart; we were happily married for 55 years and this is not how I expected to spend my “golden years”, but I have been able to reconnect with family, friends, and most satisfying, grandchildren. If I sound boastful, I apologize. But I am eternally grateful to have reached Stage 8, relatively unscathed, albeit heavy hearted at times.
    Everyday I think about all of you on this journey, and hope and pray for your safe and happy deliverance to the other side. It will get better; trust me. Meanwhile, take care of yourselves as well as you can.

  • Denise1847
    Denise1847 Member Posts: 863
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    Thank you for sharing your story. I hope that time will heal your pain and fade the ugly memories that are a part of this horrible disease. I am trying to hang on. My situation is that we have had an amicable relationship but we long ago grew apart. I feel great compassion for him but do pray for God to take him from his suffering. He is starting with urinary incontinence which he is hiding from me. His presence of mind comes and goes and he has become more dependent, but he is so proud that he won't ask for or accept help. I spend alot of time on damage control and go to bed very tired. I did adopt a puppy mill mama a couple of months ago and she does bring me joy and also alot of work.

  • Denise1847
    Denise1847 Member Posts: 863
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    Oh to have my life back again seems like a long way from where I am. I am so glad to hear you have made it to a better life.

  • Denise1847
    Denise1847 Member Posts: 863
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    I can so relate. So very tired and just want to go away and be by myself with no responsibility. On well, maybe one day.

  • Denise1847
    Denise1847 Member Posts: 863
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    Marta, You have been such a great contributor to all of us. thank you for sticking around to provide your knowledge and experience. You seem to be a warrior and a giver to others. What a blessing you are to those you care for and for our forum.

  • Marta
    Marta Member Posts: 694
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    Thank you, Denise.

  • Denise1847
    Denise1847 Member Posts: 863
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    Thank you so much for sharing. Your post truly gives me hope. I am so glad to learn your life is good and that you found joy again. I pray I make it. Stay well and may you continue to find joy.

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