Need advice on not becoming a burden

Title says it all...as time goes by I see myself less and less as the protector and more and more like the one needing protection. I have seen AD cases where the patient is so bad it nearly kills the caregiver. In some ways it would almost be easier if the caregiver were not someone you knew and cared for. It would certainly make this part alot easier.

Now I don't even know how many (if any) of the issues coming up are avoidable....all I do know if, my caregiver who is also my wife doesn't need MORE heaped on her narrow shoulders and so if there is any way I can lessen the burden being involuntarily placed upon her, I will do it. I just don't know how.

So for caregivers who have been through the looking glass before, any tips that a patient could take to heart and make life better for everyone?

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  • Good Morning Jeff. I don't think we have been introduced. My name is Jill and my mother has Alzheimer's. I am her go to person/caregiver. . She is always so worried that she is a burden and that she is doing this to me. I can tell you Jeff that she is NEVER a burden. Even on her worst days of neediness and emotional breakdowns. When you see someone you love so much struggling with this disease all you want to do is make sure they are as comfortable as they can be emotionally and physically. I did reach a point recently where I realized she needed more help then I could give and I moved her to a fabulous Alzheimer's community. I have watched her thrive since the move 4 months ago. It's amazing.

    As difficult as times had gotten as caregiver, I have to tell you that I NEVER felt like mom was a burden. It hurts so much watching your loved one struggle as the disease progresses.

    There comes a time fore some caregiver children and spouses that we need to ask for help. Not because we love them any less but because we realize it's healthier emotionally and physically for both of us to have someone to lean on so we can be well rested and recharged to continue this journey together.

    When you love someone so much, Burden is never a word that comes to mind. Try and surrender that word from your vocabulary.

    I follow you and Randy because you have given me so much insight. I cannot thank you enough for sharing this most intimate and painful journey with us followers

    Sending love and strength

    🙏🏻Namaste

    May the light in me honor the beautiful light in you❤️

  • If long term care services (24x7) is an option for you, that could preempt placing an overwhelming burden on your wife.

  • Obviously the plan would be put in place at a later date...

  • Hi Jeff, I'm Pat. My hubby has the onset of Alzheimer's. He knows he has dementia but not the Alzheimer's part. I don't want him worried any more than he already is, so haven't told him. Anyway, we are both going through new changes in our lives and although I am now handling everything - he can't do much of anything with his hands/mind that he used to do. Whatever it takes, Jeff, I will be there and he is more important to me than the illness. I am glad to have him with me - I take my marriage vows seriously. He has been there for me during our marriage, as I would guess you were for your wife!. He doesn't want to be a burden - he has told me so - he always wanted to take care of me but he cannot any more. That's okay. It's a struggle for both of us. I would rather take care of him any day - no matter what the struggle - than to not have him around. Thanks for listening.

  • Hey Pat; I am glad if anything I wrote was of help. As someone not in full control of the faculties I am always hesitant to question the decisions of others. I am normally too busy questioning my own. However I don't think I could sleep after reading what you wrote, specifically about not telling your husband the diagnosis. This isn't a moral judgment thing; thats for purer souls than mine will ever be. I don't know how your husband was before but I know for a fact that during the time when I knew I had some kind of brain problem but no idea what was WAY worse than when I finally found out I had Lewy Body Dementia (and associated expiration date).

    Its like once I knew, once I could put a name to my foe, I felt I had something fight back against, even if only to hate. When the diagnosis was nebulous, it left me wondering and worrying about a hundred possibilities, few of them pleasant. Once I knew, I could stop wasting time fighting against the wrong or imaginary enemies and focus on dealing with my Lewy Bodies. Believe it or not, life is way better now, all things considered. Less stress, less worry, and with both of those comes actually a kind of lessening of the dementia, because (this is proven, don't take my word) that as the MCI gets worse, more stress (even what a normal would not consider stress), etc makes the fogginess several times worse. Remove that stress and the fog lessens and sometimes clears. Recognizing that we work to keep the place stress-free, we are both comfortable with whats coming and thats allowing us to make the absolute most of of the dwindling time we have as two thinking people.

    It may be different for others but for me, not knowing would be that special kind of hell you reserve for the worst of enemies.

    My two cents.

    Jeff

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