My niece in a different town is going to walk in the Alzheimer’s walk, and her webpage says or her Alzheimer’s page says in honor of my awesome uncle Chaz. Our son wants to know if I’ve told his dad that our niece is doing this and whether or not he’s comfortable with her using his name. I never gave it a thought when she reached out to me and told me she was doing this he is very sensitive to his father and wants to make sure we are doing nothing that he wouldn’t want us to do. This question also centers on the discussion of the disease with the person who’s experiencing it. Is it advisable to talk with your loved one about the actual diagnosis of Alzheimer’s or do you couch it in memory diminishment? How do people handle this and what is the advice that you’ve received from specialists. I appreciate any feedback you might have thank you.
As he lay in the arms of a neighbor after his accident he kept say "I knew something was wrong. I KNEW something was wrong". And he did. He knew his balance was off, his swallow was off, he was hanging up on folks still on his phone who he thought had hung up on HIM. He was have real hallucinations that were real as dreams but were happening when awake. He was having disturbing reactions to patterns in carpets, wallpapers, marbling. He just couldn't figure out WHAT was wrong. The doctors did when they assessed his symptoms. He and I had to make plans. He immediately made me his POA and Trustee, giving over ALL bills and etc. for payment. He assessed whether or not he could stay alone in his last beloved little home (he couldn't); we chose the best ALF we could (they were wonderful) and we LONG sat and discussed his symptoms. LONG aznd LONG. He told me how he saw a scene in front of me and I told him how I did. He told me "I am so sorry to know where my mind is going and I hope I beat "Louie" to my grave, but I am GLAD to know what I have because I would otherwise add confusion and fear of the unknown to the mix".
My brother did beat Louie to the grave. He died of sepsis 1 1/2 years after his diagnosis. And until then we had our long talks; he was even able to improve a bit without the burdens of bills and etc. He got back to long letter writing. And he died before it could get him for which I will be forever grateful much as I miss his Hansel to my Gretel in every dark forest I have left to transverse.
So for us, knowing was right. As an RN for my entire career I NEVER IN MY LIFE lied to a patient. I think it wrong. I felt bad for patients whose families hid things.
His niece is honoring him. I hope that's OK. If he would rather not have himself named publicly, I think that is his privilege and he should ALWAYS be asked imho.
My story can differ from your own. That's fine. Your family has every right to do it your way. I can only wish you the very best.
I personally don't see what the big deal is that your son is making of this. I think it's awesome that your niece wants to honor her uncle.
And how would your husband even find about this walk unless you or your son told him? And to be honest, he probably wouldn't completely understand about it anyway.
Because Alzheimer's(unlike the other dementias)is the slowest progressing of all the dementias, most people with it know early on that something isn't quite right, and may be open to talking about it. While others stay in denial that they are slowly but surely losing their mind/abilities.
My late husband had vascular dementia which is the most aggressive of all the dementias with a life expectancy of just 5 years, so I chose not to tell him what he had and just tried to make his final years as good as possible under the circumstances.
It's hard and there are no one size fits all answers. You have to do what ever you feel is best for you and your husband. Period, end of sentence.
That is just my feelings, everyone feels different and handles things the best way they know how. And when you are faced with this, that's all you can do is the best you can do.
As for telling your husband, every alz patient is different, and you know your husband the best. There is no right or wrong really, the only wrong would be if you told him, and he got upset, then he ask again , and you told him again and got him upset again. There is no one size fits all. You just go day by day.
Best of luck 🙏😔
Josh took A LOT of flack from the keyboard warriors about how he was "exploiting" his mom w/o her knowledge. And how would HE like to be filmed spitting food out or having a bad day, huh? Betty had been in service her whole life. She'd agreed to all of this long before the AD got advanced. She wanted to finally SHOW people what it looked like, so the stigma could lessen. So others could show compassion and stop hiding their loved ones away in shame and embarrassment. Plus she wanted to help the Foundation by donating money to find a cure. I think Josh has donated close to $70K to date.
Anyway, your niece can change her social media page to say she's walking the Alzheimer's walk in honor of her Uncle. Period. If your son is worried the secret may get out, or that your husband may be upset. Or you can ask him, point blank, how he feels about his niece wanting to honor him by raising money for AD?
Since he's in the early phase of a long lasting disease, I'm sure your husband must know his diagnosis? I can't imagine not talking about it and discussing it together, especially since future plans have to be made for care and management. Unless your husband has anosognosia and is unable to admit he's got a cognitive deficit? Then you need to couch the diagnosis as memory issues or something like that. Otherwise, talk openly about his fears, your fears, changes in his cognition, etc etc. Nobody can deal with issues in life w/o dealing with them honestly.
Best of luck to you.
I have talked with him now about the walk and he did not seem troubled by it