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Do any of you folks have early dementia yourselves and live alone?

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Everywhere I look, I find support, even on Blogs for caregivers, but I have yet to find something to assist the person who has dementia.

Comments

  • Iris L.
    Iris L. Member Posts: 4,814
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    Welcome Leeapole. There is support for you here on this message board. Unfortunately, the board is not as active as it was a few years ago. But I am here every day. I do not have Alzheimer's Disease, but I have been diagnosed as having cognitive impairment. I have been through a lot of experiences with having a slow memory. I live alone. If you tell me more about yourself, perhaps I can give you some guidance, and others can chime in also.

    Iris

  • Janutt
    Janutt Member Posts: 136
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    Hi Leeapole,

    I have EOA and I have a strong family history of this disease. I am or at least i know am the only cousin, niece, grandchild to have this ( they all could be in denial since they have all called me a liar). I have been involved with Alzheimer’s walk in past because of my relatives. I recently did a walk for myself and for all my all relatives including my father who have passed away or still living with this disease. Well after my fundraising walk I received an email from a lady (social worker) who is part of the Alzheimer’s Association asking me if I would like to join a support group through zoom or in person. I said yes, since many have you may have experienced the stigma and isolation of this disease. I had my first zoom the other day and found this very informative. I could relate to a lot of the participants who had spoken. It was nice to see an age range.

    I have not received any other information about Alzheimer’s either a packet or pamphlet just lots of tests confirming I have EOA.

    I guess reach out to a number here for the area that you livee in and see what information they can provide. I am grateful to have found this disuccion (my word my spelling is getting so bad… )

  • Mimi50
    Mimi50 Member Posts: 144
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    Iris. You have been great help to me. It helps me see my husband who has dementia from his point of view. This way I can be more sympathetic and understanding. Allowing him to remain independent and offer assistance only when he needs it. In my opinion more spouses of people with dementia. Need to spend time on this side of the message boards. I did tell my DH about how wonderful this board is hopefully. I can convince him to try it out.

  • Mimi50
    Mimi50 Member Posts: 144
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    edited January 2024

    In my humble opinion there is more support for caregivers then people with the diagnosis. Which I find shocking. You all need people who are living with dementia or AD. So you can remain living alone as you do now and stay independent for as long as you can. There is wealth of support for me the caregiver but my husband with dementia has very little support. Seems backwards too me.

  • Iris L.
    Iris L. Member Posts: 4,814
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    Mimi, you are the support for your husband with dementia. Many people with dementia don't have any support. That's why we need to learn from the members here.

    Iris

  • 2dogssing
    2dogssing Member Posts: 35
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    I agree, it seems to me that there is little discussion that is peer to peer : AD patient to AD patient. My husband works & has his own medical needs. I'm in charge of keeping track if both of our appointments. It stresses me. Is that normal? Glad to meet others that need/want support.

  • Iris L.
    Iris L. Member Posts: 4,814
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    2dogssing, when I first joined there were many PWDs who posted often. In fact, these members brought me out of my deep depression. But nowadays, PWDs will post once or twice. Do you have ideas on how to encourage more participation from the members who are living with dementia?

    Iris

  • Mimi50
    Mimi50 Member Posts: 144
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    Stress is not good for you. Hopefully your husband can lend more support to you.

  • 2dogssing
    2dogssing Member Posts: 35
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    Member

    Thank you ladies. I've looked at the titles of the discussions & haven't noticed any that seem to be directed towards those with AD. Perhaps someone could think of a title for a new discussion?

  • Iris L.
    Iris L. Member Posts: 4,814
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    2dogs, please feel free to begin your own thread on a topic that interests you. Then hopefully, other PWDs will respond.

    Iris

  • 2Hands
    2Hands Member Posts: 5
    First Comment
    Member

    Yes, for anyone dealing with this, I feel the best first thing to do, even before diagnosis, is to focus on success, on doing things you can still do without worry or fear.  You are in it for the big win. 

        the first stages of diagnosis it is a blow, denial is a way to cope. 

    • Succeeding, is feeling good
    • it builds resilience, 
    • lets you hang on to what you've got,
    • set your self up for success !

    One piece of advice is to stop multi-taking and that is great. Focused tasks because you have to, so you can do a better job. It is not just a way to deal with the problems but also for the feeling good, of being in control. 

     My AD mom did this, gradually she did it for herself, and angrily replied she did NOT have memory loss.  It would have been better if we had said how wonderful it was that she did what she did.  We would all have been better off. 

     Eventually on days when she could not remember thing I did it for her.  Finally she could not remember how to start walking, she could, sort of dance [1,2,3, kick] 

    Now I do it for myself. I am a "lone ager", no kids and saving my money for memory care costs.  But I am not alone, most of my friends are single and childless.  We are the boomers, and have always had to find new ways, so we will.  Resilience saves a lot of brain cells.


    Yes, for anyone dealing with this, I feel the best first thing to do, even before diagnosis, is to focus on success, on doing things you can still do without worry or fear.  You are in it for the big win. 

        the first stages of diagnosis it is a blow, denial is a way to cope. 

    • Succeeding, is feeling good
    • it builds resilience, 
    • lets you hang on to what you've got,
    • set your self up for success !

    One piece of advice is to stop multi-taking and that is great. Focused tasks because you have to, so you can do a better job. It is not just a way to deal with the problems but also for the feeling good, of being in control. 

     My AD mom did this, gradually she did it for herself, and angrily replied she did NOT have memory loss.  It would have been better if we had said how wonderful it was that she did what she did.  We would all have been better off. 

     Eventually on days when she could not remember thing I did it for her.  Finally she could not remember how to start walking, she could, sort of dance [1,2,3, kick] 

    Now I do it for myself. I am a "lone ager", no kids and saving my money for memory care costs.  But I am not alone, most of my friends are single and childless.  We are the boomers, and have always had to find new ways, to cope. So we will.  Resilience saves a lot of brain cells.

  • GEH
    GEH Member Posts: 9
    First Anniversary 5 Care Reactions First Comment
    Member

    Hi, I am almost 68 yo diagnosed with ALZHEIMER'S about three years ago. I have almost always lived alone as an adult and continue to since diagnosis. I currently do not have any assistance, for example, social worker visits, home health aide etc and seem to be doing OK. I have made some adjustments, for example I longer cook my food with stove oven etc. but rather have a saying, "If I can't can"nuke it" (microwave) I don't don't eat it" 😆. Additionally, I learned to to buy fresh foods due to me forgetting about them in the fridge. So I eat canned, dehydrated, frozen things instead. I keep quite a detailed calendar on imy cell phone that I look at every morning to remind me what I have scheduled. The really only thing so far, knock on wood, is I have a terrible time remembering/motivated to wash my clothes and keep my house clean. I was never terribly good at/motived to do those tasks before ALZ but it has gotten significantly worse since dia nosis. I have to try to trick myself into doing those things but not much luck. Any suggestions to help kick me in the but?? 😆🥰

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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