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

Leeapole

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.

Iris L.

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

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

https://alzconnected.org/discussion/comment/194431#Comment_194431

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

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.

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

https://alzconnected.org/discussion/comment/195439#Comment_195439

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.

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

https://alzconnected.org/discussion/comment/195593#Comment_195593

Stress is not good for you. Hopefully your husband can lend more support to you.

2dogssing

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.

2dogs, please feel free to begin your own thread on a topic that interests you. Then hopefully, other PWDs will respond.

Iris

2Hands

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.

klucey

https://alzconnected.org/discussion/67772/do-any-of-you-folks-have-early-dementia-yourselves-and-live-alone

https://alzconnected.org/discussion/67772/do-any-of-you-folks-have-early-dementia-yourselves-and-live-alone