My husband just turned 63 but his health is not good. He suffered a stroke a year ago and since then has been diagnosed with dementia. We have discovered that the first doctor missed the signs so he has been dealing with this for about 5 years now. Once the stoke happened everything seemed to hit all at once. He entered assisted living in August of 2018. In the past few weeks his body is failing him and he is no longer able to stand. He is moved with a lift from wheelchair to bed and back to bed. He still knows me but struggles to carry on conversations. He usually only answers if you ask a question. He is comfortable and the staff loves him. They take good care of him. When I talk to family and friends, they seem to be in denial of the serious nature. I get comments like "do you let him drink from aluminum cans? have you tried coconut oil? are you making him work out? I know they are well intentioned but I get frustrated and do not know how to respond.

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My father had vascular dementia and I would occasionally get remarks like this. My standard response became "While that might have helped earlier, his brain is so damaged now we're just trying to maintain what still works and keep him comfortable. He would probably love to have you visit him..." and switch to details about how to schedule a visit. That conversation would often lead to how busy the questioner's life was and I could usually find a tangent to turn the conversation away from Dad and his treatment regiment.
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Reply to TNtechie
ArtistDaughter Jun 17, 2019
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Sarcasm. It's the only way. Plus, the really dimmest people won't notice you're insulting them so no harm done.

Oh my goodness! We switched to ALL aluminium, for everything. Pots, pans, plates, cups. You mean that was wrong?! I had no idea, how will I ever forgive myself...

Putting the minor irritations aside: your husband's dementia sounds most unusual and terribly aggressive, and I'm so sorry that this is happening to you both. Please do make the most of this and other forums. I think I can safely promise you that nobody will suggest any quick 'n' easy cures.
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Reply to Countrymouse

"Thank you for your suggestion. We've tried everything."

If you relent and tell some well-meaning advice-giver that you will try their folk remedy, the next time you see them they will want to know all about it. Shut them down when someone gives unsolicited advice so you won't have to continue dealing with it ("now, did you do 2 drops or 3 because when I used coconut oil with my mother we started at 2 drops but found that 3 was much more effective, however we had to give it in the morning because....") Ugh. Unsolicited advice is the worst.
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Reply to Eyerishlass

I am sorry that your husband is so ill and failing rapidly. Such a double edged sword. My grandma had a series of small strokes that took her from perfectly fine Friday to full blown dementia on Monday. It was traumatic to the family and of course they continued so the dementia got worse rapidly. I am sorry that you and your husband are going through this awful diagnosis.

I would tell them that I doubt they are grasping the seriousness of the situation and coconut oil and exercise are not options.

You can also be very honest and say that you know they are trying to help and you appreciate them for their love, but they are saying put a bandage on the hole in the damn. It isn't even an option.

If you are a believer, tell them that they should pray for you both, that is the best thing they can do for the situation.

It is hard to gain reality on a situation that has you remembering a vital, energetic person who has become incapacitated since you have seen them. Our brains can't catch up until we see the new reality for ourselves.

Hugs, it is a difficult journey.
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Reply to Isthisrealyreal

I don't think Coconut oil is a cure. I think its just found to help with the cognitive part.

People who have not done actual care are clueless. I learned a lot caring for my Mom and she was basically easy. A caregiver I am not.

Stop explaining. They will never get it. If they ask, just say he is comfortable and happy. When they start theirvsuggestions, just say "Sorry, but not sure if I can explain any better than I have. His illness is severe and I really need ur support than ur suggestions."
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Reply to JoAnn29

My DH is also 63 FTD with Parkinisms
he was also incorrectly diagnosed for years. My in-laws esp. MIL have been openly hostile the whole time. Apparently this is all my fault. Somehow I made this happen and I am just trying to get rid of him. I have been told to try marijuana, I’m not trying hard enough to find better doctors and that he is my husband and I should be 100% taking care of him

you just have to remove these sorts of people from your life. They only make it harder to deal with the situation and offer no help
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Reply to PandabearAUS
vlibowsky Jun 19, 2019
I know exactly what you are going through, and I am so sorry for your lack of compassion from family members.  I took a work promotion that moved us to a new city and for that I am blamed for his whole illness.  They act as if we would not have moved this would not have happened.  I get zero support from his family members.  They do not see to understand the struggles that I go through, even though he is in assisted living I still care for him.  Stay strong, and thank you for your words!
When you get unhelpful or weird advice, just smile and say, "Thank you for your feedback. I will give it some thought." Then walk away or change the subject. This works well for me. You don't owe anyone details or a substantive debate.
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Reply to MrsParker5

I was so frustrated once when someone kept insisting my mother needed some silly miracle supplement, I said I had heard it also worked for balding. To a bald guy. With an innocent expression on my face.
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Reply to Rosyday
wren9184 Jun 22, 2019
too funny...
Say thank you and walk away. Or say when the Alzheimers Association recommends these treatments, I will be the first in line.
Helpful Answer (6)
Reply to Judysai422

Memorise a spiel. ‘Thanks, but I’m not sure that it will work at this point. Perhaps you could do a net search on it and let me know the answers’. And yes, then switch to suggestions for a visit.
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Reply to MargaretMcKen

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