Social Scientists, We Are Here

Hello howhale your words are wise and so knowledgeable about this dastardly disease and where we all stand. The lack of medical knowledge, the lack of professional help or where to find it the lack of real physical help the lack of everything left me in a void of fear and helplessness when my DH was first diagnosed. So called old friends turned their backs on us when we needed them most of all as if they would catch the disease this left me in a world of isolation. We got a support puppy only to be told by the local Dementia Coffee Group that we couldn’t bring him with us to the coffee morning held in a garden. Go tell! I was furious bewildered and felt abandoned. Then along came this miraculous group of caring soles living the same nightmare.

Progress I guess is being made by people like Emma Hemingway Willis releasing her book on Bruice Willis. However my criticism from the Instagram interviews that I have seen present dementia as it is but not the solutions or help that we the caregivers need. Most of us are doing the long haul many of us on a restricted budget without a support team around to help ease the work. I don’t have the time or even the energy most days to change my ear rings (I have odd ones in at present one pulled out and subsequently lost by our growing puppy) no time or money to go to the finer dress shops to purchase designer clothes and I have a hairdresser that comes to home. It’s online dress shopping which can be hit and miss and so on it goes.

It’s really appreciated that Dementia is being brought to everyone’s attention through publications like this but the book left me feeling inadequate and sad.

Thankyou for taking the time to recognise what we all do and how we manage. I wish I could put our questions, statements and answers into a book and I wish the medical field would look at and acknowledge the alzconnected site.

Isn’t that the dang truth!

I’d be totally lost without this forum. I am so grateful to all of you.

Totally agree with everyone. When my husband was officially diagnosed with AD, I felt the neurologist was in a hurry that day and just told us he had Alzheimer’s and that was it and basically was out the door. Since then and from this site, I learned that’s the norm. Really sad. My DH is now in Hospice and has been for just over a year. This past week our nurse was on vacation and I needed some help as DH was more agitated. My aide asked that the supervising nurse call me. She did and was great, but while taking with her and our situation and from what I was telling her and how I was handling it, she asked if I had had training on caregiving. I told her no, just learned what I can and mostly from this site. Ya’ll have helped me so much.

Dad's journey to diagnosis was a bit more convoluted than some. I'd pestered my mom for a decade to have him evaluated or a least screened by one of their PCPs. She blew me off until she nearly died with him as her care partner when she promised to have him evaluated once they came north for the summer.

Long story short, she left him for 6 days to attend a family funeral with good friends across the street checking in. By the day of the funeral, the friends called mom to return home asap. We drove the 300 miles to my house the next morning and she drove the rest of the way before dawn the next day. When she arrived dad was really confused bordering on psychotic. She put him in the car at my urging and drove back to Philadelphia where we took him to HUP's ED. He was admitted for altered mental state.

Things got interesting. The resident after taking a history tested him for a Thiamine deficiency thinking this was a WKS situation and the chief resident was thinking maybe CJD after mom's description of sudden onset. But the attending examined him and wrote him off as "garden variety Alzheimer's" and seemed annoyed that we'd would bother him with such a thing. We did get a new neurologist at their Memory Center which gave him a mixed dementia diagnosis (kudos to the young resident who got the alcohol part correct as treatment helped for a time). Of course, given the cause of his dementia, we got plenty of judgment for dad's addiction so that was fun.

HB

Very insightful post… asking questions of the medical community that need to be addressed! I graduated from the group in 2023 when my DW died. Joined in 2018 after diagnosis in 2016. The knowledge so wonderfully shared on this forum allowed me to survive those 7 years and keep my DW at home through the end. My background was a bachelors in psych and a masters in counseling so my education obviously helped. This forum was the finishing touch. Telling me what was coming and possible solutions.

Several years ago, I believe a University was starting a study of this, it was on the old forum I believe. My memory says Vanderbilt. What if anything happened to that effort I don't know. I still read here every day and when it seems appropriate comment - very rare.

I suspect the agency that could best promote this potential study in the academic or medical communities is the Alz Association. Rick

I don’t know what I would done without this site. I felt helpless and alone even though I have family nearby. They didn’t understand and so they really couldn’t help. The info and support I got here helped me so much. Thank you all. 💜

I too extol this forum and recommend it at every appropriate opportunity. i learned about the forum relatively early on from the Alz hotline. As I have mentioned in other discussions, this forum was my only caregiver resource, because my DW has anosognosia and would challenge me if I sought help within her hearing.

You are so right Bruce does live separately in their second home, could not live alone would have a full contingent for 24/7 care washing, dressing, eating, sleeping. Hey good on her I could do with a bit of that, no hard feelings but today after another restless lack of sleep night I’ve had it.

==I wonder how well Bruce Willis' wife truly understands all that is involved in caregiving. After all, Bruce lives separately from her in their second home.==

And how is that different than those of us who have placed our loved ones in facilities? Or are you implying we aren’t caregivers either? Bruce is in the home next door. His wife eats breakfast and dinner with him and his minor children visit often. I said she has more money and resources than most of us. That doesn’t mean she ignores her spouse.

we received confirmation today that DH also has Semantic Dementia. When I asked for resources so we know what’s next and how this form progresses, I was told to look up FTD association. It is very hard to even find information on this variant. They suggested getting a social worker. Where do I go about finding one? Have any of you done this?