How Much to Tell

Lee39

I am an 82 yo caregiver for my 84 yo DH who was diagnosed with dementia by a neurologist in 2023 and I estimate is now in stage 5. He was just diagnosed yesterday with pulmonary fibrosis, but seems already to have forgotten most if not all of the doctor's visit. The mean survival time for this is 2-3 years, and DH also has emphysema and carotid artery blockage. When the doctor told him the life expectancy he did not show any reaction. I would be very interested in hearing how others handled discussions of terminal conditions with their loved ones or if they decided to spare them the painful knowledge of their condition, particularly if they would not remember it the next day. Many thanks for any experience you are willing to share.

LJCHR

I am so sorry for the diagnosis you received. I am not speaking from a voice of experience but from what I think-if he doesn’t remember what the prognosis is I don’t think I would mention it to him. He probably wouldn’t temember if you remind him. My thoughts and prayers are with both of you as you continue with this horrible disease.

sandwichone123

When my dh was at that stage, where I thought he might understand and want to know, I used the philosophy of telling him one time. If he didn't remember, I didn't feel the need to remind him of what he'd already been told (bad new or diagnoses). Only if something is happy or joyful will I tell him again and again.

JeriLynn66

I care for my 98 year old Father in law who is in Stage 5. I would not tell him news such as this.

He would probably understand in the moment but would not remember the news the next day. His advance directive is clear in that he does not want intervention in cases of life threatening illness.

He “knows” he is “forgetful” but we don’t talk about dementia and I would not try to explain pulmonary fibrosis to him. I just try to keep him safe, as happy as possible and give him my love. I’m the only family he has left.

JJ401

It’s not how much to tell, as he was told by the doctor. It’s whether to repeat the diagnosis to him. My vote is no. He’s not going to remember and it’s only going to upset you to keep repeating it.

harshedbuzz

@Lee39

He's been told. I wouldn't remind him. A best, he won't appreciate the gravity of what you're saying and at worst he won't remember.

HB, whose dad looked at his neurologist after being told he had Alzheimer's and said, "that's the best thing I've heard all day".

terei

My mother used to tell everyone she had ‘dyslexia’ to explain her lapses. (one of which was that she forgot the word dementia.). Many people voiced that that was too bad while I was standing behind her shaking my head and mouthing ‘no’.

Ed1937

I don't see where there would be an upside to telling him. But it could sure bring him down.

Lorita

Lee, so sorry. Don 't tell him a thing. The doctor has so that's enough. Hopefully, he won't remember that. It won't do any good. If he asks, just tell him his memory is.not too good. Let him enjoy his life. My husband had vascular dementia and we never talked about it one time. No use, we just enjoyed our time together. I hope you decide not to mention it and also your time with him. It's not an easy thing to deal with.

Cecil Jones

I've never told my wife and in our situation I think it was the best decision. Always guessing.

michiganpat

Lee, I have never told my husband he has dementia. When he didn't recognize our granddaughter at a ballgame I just said as we age some areas of our brain don't work like they used to, just like the rest of our body. There has been on the news a test to see if you have the alzheimer gene. He says why would anyone want to know. There is nothing that can be done about it. Just my two cents. Pat