How much to tell DH about his diagnosis

M5M

I have been reading posts for several weeks, learning so much.  This is my first post.  DH was diagnosed a few months ago, confirming my concerns about his Stage 1/2/2+ behavior.   He is not a medical nor scientifically oriented person and has no concept of what ALZ will do to him.  He does not have anosognosia at this point. Until recently he has not asked anything about his future, but in the past few weeks he has asked twice, "So what does Alzheimer's do?"  Since he is aware he is losing memory and cognitive reasoning, etc, I have said something like, "You'll lose more of your current memory and thinking."

I would appreciate thoughts on how much to share in detail, I have a hard time thinking that hearing about the distressing future is of much value.  

Thanks!

Ed1937

Welcome to the forum. Sorry for the bad news. I agree with you that there is no upside to telling him more. If he's satisfied with your explanation, why would you want to upset him more? Others might have vastly different opinions on this. If he really wants to know, he'll probably research it himself if he's able.

JudyMorrowMaloney

I agree about not telling him more about his diagnosis. He probably wouldn't understand any way.

Rick4407

You do not list your ages, and that may have some bearing on what to answer.  If he's young with early onset it will go fast, if he's older with more traditional Alzheimers it usually goes slow.   If he has other health issues those may overtake the Alzheimers.  

   https://www.mccare.com/pdf/fast.pdf

The link is a short hand reference to the stages and durations.  My DW had a combination of Alz and Vascular Dementia so she is moving faster.  I have found the table to be very useful in assessing what comes next and being prepared.  

As above I would not tell him more than is necessary to keep him settled.  Good luck, Rick   

MaryG123

Here’s a copy of the doc Rick referenced, above.

Quilting brings calm

Could you please tell us what stage descriptions you are using to identify your spouse as stage 1/2/2+?   Many of us use the 7 stage model in our discussions.   In a 7 stage model, stage 1 is completely normal, stage 2 is slightly impaired, stage  3 is mildly cognitively impaired, stage 4 is mild dementia.  A doctor won’t even diagnose until stage 3 or 4.   

My mom is supposedly stage 3, but in all actuality stage 4.  My step-dad has just been diagnosed with stage 4.   I have discussed my mom’s condition with my step-dad ( prior to his own diagnosis), and  I discussed  his diagnosis with her recently.  I haven’t discussed moms’s  diagnosis with her, nor  his with him. I was there at the times of both diagnoses and I can assure you they didn’t understand what they were being told.  They would not accept it if they understood it, even though they seem to  accept each other’s diagnosis. 

I wouldn’t elaborate if I were you,  just repeat that  all people have memory, confusion, and incontinence issues, etc  as they get older- but limit it to the specific  issue they are concerned about. Emphasize that things  like finances etc are being handled by you and it’s going well. 

MaryG123

I tell my DH, who is in early stages, that everyone is different and there’s no telling what the future will bring, and “It might not get any worse.” We’re trying to focus on enjoying things we can still do together and, while I do research and learn a lot from this forum, I don’t share that info with him.  He’s worried enough as it is.

M5M

Thanks for the answers. I was not aware of the FAST document....I had read an abbreviated version giving 7 stages however.  By the FAST document he is definitely into stage 3, mild cognitive impairment.  We are 77/79, he does have impacting health issues, cardiac, neuropathy, macular degeneration, and some other items that just stir into the pot.  He doesnt see well at all, so many daily activities are impossible or nearly so. Not driving. It would be impossible for him to live alone, although he will likely go before me, I worry about the "what ifs."  Working on getting documents and life in order.