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I AM NOT A LOVED ONE, and I'm not alone
I'd really like to see a change in the terminology. At 74 with a new diagnosis and dementia, without any family or friends left and still driving, I find it difficult to get information on how to manage on my own, make plans. But the hardest immediate barrier is that all the materials seem to be for caregivers and address patients as the loved one. I am not anyone's loved one and initially it's hurts to have to explain that to people, especially medical professionals.
I'd be interested in how others have addressed this. I don't have the energy to be educating people. I'm angry, sad, grieving at this devastating diagnosis. But these are not symptoms of dementia, these are human reactions to a horrible diagnosis.
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@jlam1950 I know they have an Alzheimer’s Association and I would look them up and give them a call. If you haven’t already done that. I know they would have information on Alzheimer’s and Dementia. Tell them you are interested in what you can do for yourself. I do know for a fact they have places where you can live and have help if you need it. They also have different levels of care. I am retired now. But as a nurse I use to visit patients in different places like assisted living facilities and sometimes their home. I not only saw patients but I had my dad who needed help. I wish you good luck in getting answers. I know they are out there.
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2 ReactionsAlzheimer's Association is part of the problem.
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1 Reaction@jlam1950 No one can say, "I know how you feel" because they don't. I do understand that it is devastating for you. I know that my dad and his mother (my grandmother) had Dementia. It is definitely a lot to process and a lot to unpack because I watched my Dad try to process it. It was certainly not easy for him either. It wouldn't be for anyone. You are right when you said those are human reactions to a horrible diagnosis. I do know they have assisted living facilities where you can live. I have seen people that take some of their furniture and make their living area very nice. Where I live and worked as a nurse part of what I did was go to facilities to see patients. Or check into someone who can be a live in caregiver so you don't have to leave home. I would ask if they are bonded through the company that they work for. Please tell me how the Alzheimers association is part of the problem. On many occasions I have seen many different stories of people with dementia.
Check out assisted living and see what they will provide for you. Keep in touch please.
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1 ReactionThe topic was the designation of "LOVED ONE", not, "Help! Give me advise."
Alzheimer's Association is a huge problem for focusing solely on caregivers and their LOVED ONES.
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2 Reactions@jlam1950 I live alone and have dementia. I also resented that everything is about the caretaker and not the person with the disease.
So, I started a group here on the connect site for people like us. It’s heading is mild cognitive impairment.
If you are open to speaking with others who have dementia via Zoom meetings let me know. They are all dementia patients, not a caretaker in sight.
Dementia is not something I ever thought would happen to me. I’m 75 and still “truckin”.
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8 ReactionsHow so?
I can see why the Alzheimer’s Association would write their instructions for the caregivers. My husband died with dementia although the immediate cause of death was likely Covid. In his last years, I dealt with 2 different individuals and success meant figuring out what I was dealing with, him or the disease. Sometimes the old him would appear and he would appear as in old times and make rational choices. Other times something alien would take over his thoughts and moods. I suspect that the Alzheimer’s Association is awkwardly trying to address whoever the rational decision maker is. Whether it’s the patient themselves or someone else.
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7 Reactions@merrychristmas most emphasis is on the caregiver. They focus on the disease, and how to handle its effects on the family.
I think they (and other organizations) assume the “loved one” cannot take care of themselves so they bypass them.
I have dementia. I can still write, read, and understand the written word yet people like me are ignored…
It’s quite frustrating .
There is an organization whose focus is on the person with dementia only. It’s wonderful to be able to speak with others who are in the (same boat).
It’s Dementia Action Alliance. DAA.
Their site is:
http://WWW.DAANOW.ORG
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5 Reactions@rnlorena I have dementia. The best organization for people like him, myself, and others with dementia is,
DAA. Dementia Action Alliance is for us not the caretaker.
Their Zoom meetings are hosted by, and attended by dementia patients. We have great fun, and informative topics like, name that tune, arts, and general discussion about whatever…
I have made long distant friends at DAA.
http://www.daanow.org
Most Doctors and nurses etc do not know what dementia really means. They think the term FTD is Frontotemporal dementia ! It isn’t it’s FT- degeneration . Most people FTD leads into MCI and/ or dementia . Dementia is not a diagnosis rather it is behaviors that they call dementia.
I wish more health professionals knew that. I went to the Alz website. They do focus on caregivers
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