Everyone else has the cure…

S. Lynch

When someone with no experience with dementia comes to me with the latest cure for my DH diagnosis of EO Alz I always thank them for thinking of us. I know they mean well. Sometimes it gets old~ I know have an in-law that means well, even if she hasn’t had a relationship with her brother for most of their adult lives, but now she has all the answers. I haven’t been able to get my DH to go for a walk for 35yrs. He is not receptive to the idea now. We chose not to pursue Leqembi because we’d be making 4-5 hr road trips one way and overnight stays 2x a month. Are you trying other alternatives? Has any one tried laser therapy or nicotine patches or any of the other random ideas that have come our way? How do you deal with others that have all the answers? Are any of these well meaning people showing up for you and you LO in any other way?

ImMaggieMae

They probably mean well, but I agree that it is super annoying. My script? “You know, that sounds interesting but wouldn’t work for us. But you know what would be super helpful for both DH and I? If you could provide 2 or 3 hours respite care for him while I go out and get some shopping/Dr. Appt., eye exam, etc done. It would provide some much needed socialization for him and a break for me.”

Ed1937

There are so many things that people buy into, too. What about Prevagen? Everyone knows that it will keep you from getting dementia, right? Every day you see things like "Do this every day, and you'll never have to worry about dementia". Soon you'll hear about the link between left handed people and dementia, or those with blue eyes...... or.......... And with fake news and money swaying opinion of the medical field...... The people with the answers can find all kinds of reasons why we're doing it wrong.

LindaLouise

Sorry about venting here, but with all the articles and ads out there about how to decrease your risk/prevent/delay dementia, it feels like the onus is on our DOs with dementia (or us) to explain why it happened. No one likes to feel helpless in front of a scary disease and that seems to drive a kind of "if only you did/could do this" mentality from friends and family, who need to believe dementia could have prevented by our actions. I try not to dwell on it, but I do feel almost a sense of blame from others that I'm not doing the "right things" that would either improve my DHs dementia, or not have allowed it to happen in the first place. I hear the approval when someone discusses an elderly person who is still "sharp as a tack", implying they have earned that by doing the right things. By default, I feel that PWD are viewed as not having done what they could and as a caregiver, I feel that blame directed at me as well. Not sure I'm explaining this very well, but it's something I have felt and feel that those preying on fears about getting dementia lead to this way of viewing the disease and it's unlucky victims.

l7pla1w2

It's probably a waste of time doing this, but you could ask where they got the information about the "cure". If it involves buying a product, no doubt the source of the information is - surprise - also the source of the product.

ghphotog

I recieved a ton of adice in the early days take this vitamin, this supplement, a website touting expensive miracle supplements, christian tv shows that have found the cure, changing diet, staying away from diet coke. . . etc. . . and etc. . .

IDK, maybe in the very very early stages some of these might have slowed progression by a few months. I've also heard it all. I just say "great!, I'll check into it! thank you!"

Yes friends and family mean well and I always appreciated that they cared enough to present thier information. I never made them feel like they wasted their time trying to help. I always appreciated it even though I knew none of these suggestions would change anything but their comes a time when we all know things will not get better no matter what you do.

LJCHR

Another thing that I get so tired of hearing is to just be happy about the good days.

There's not a one of us on this forum that does not relish the good days, but we also have earned the right to be angry on some days.

I know they mean well and this disease has such a stigma with it, people don't know what to say.

Thank goodness for this site......

trottingalong

It’s always well meaning. But I’m tired of people acting or implying that it’s not dementia, brushing me as well as my DH off. It’s either “have you heard about this?” Or “everyone does that when they get old.” My last friend who told me everyone does it, I snapped back. No, they don’t. I felt really bad after, but exhaustion had taken its toll that day.

S. Lynch

https://alzconnected.org/discussion/comment/197822#Comment_197822

Yes. I have been told by others that it’s not dementia, that they have similar issues. I really have a hard time with that. I haven’t blown up, but then find I don’t have time for some of those folks anymore. It almost implies that we would make this all up and change all of our retirement plans for this fun. It’s a lot of daily grieving and exhaustion. Thankfully, my adult children are supportive and I have a few friends that get it. Thank you for sharing your experience. We are not crazy.

S. Lynch

https://alzconnected.org/discussion/comment/197811#Comment_197811

These days we do the best we can, and they can be overwhelming, frustrating, angry, sad. It was a year before I looked at this site, and it has helped me so much in identifying my own emotional journey. Peace to you, LJCHR.

S. Lynch

https://alzconnected.org/discussion/comment/197745#Comment_197745

I have felt the dementia “judgement”, too. I think you are right about the fear that others have of this disease. Thank you for your insightful thoughts.

ThisLife

I too have felt the judgement and the implication that fi you do the right things as a PWD or caregiver dementia won't happen or it will get better. I think it stems from the fear of dementia and magical thinking that it won't happen to them. H had EOAD and I received a lot of comments that he seems just fine, that happens to everyone, and he's just deciding not to listen to you. (H has always been difficult.) It seems society's view of dementia is someone Stage 6/7 and a slightly confused, vacant looking person. All of it is very frustrating.

GothicGremlin

I bet most of us could write books on this subject.

My standard line is "Thanks for that. I'll go look it up when I get home." At least that shuts them down in the moment.

I've also encountered (many times) the judgement that @LindaLouise mentioned. It always comes in the form that because it's EO, it must have been Peggy's fault. Peggy's my sister, so the blame rarely falls on me. Still, it drives me crazy.

Brokenhearted in Illinois

It is funny. I just got off the phone with my sister( who never comes to help us out.) screaming at me that DH needs to take b12 shots. He is now stage 6, full on urinary incontinence, cannot keep his balance and just now requires a wheel chair.and does not remember he has. Leukemia. Our home , our car , doctors etc. ugghhhh they may have good intentions but more likely they are know it alls who want to be the arm chair quarterbacks and fo none of the heavy lifting eith this disease.