Hi
@aliceferg ,
With my husband I chose, for the most part, not to tell him what might come. He was aware he had dementia and accepted it - but his knowledge of dementia was that of an average person who has never actually come across someone who has it- i.e. he knew it affected the memory but little else.
That's not to say that I did not explain things as they arose. He would become frustrated at not being able to do the things he once did and, in the early days he was aware of that loss of ability. He would say it was because he was 'stupid'. Well, I wasn't going to let him go around thinking that, so I explained that it was because of his illness, and that brought him peace.
When we were putting the POA together I did tell him that in some circumstances (but not all) a person with dementia might develop challenging behaviour which could become a threat to others, including close family. It was then his decision to state in his POA that he wanted to be cared for at home but that he would want to go into a care home should he become a threat to his wife and children within the family home. I gave him the info on that occasion so he could make an informed choice.
But, as for a more detailed discussion about what might happen in future, no I didn't burden him with all that. I saw it as my role as carer to research what might happen and how to handle and prepare for it as best I could. I found what I read very hard going and scary at times so I was determined not to put that worry and fear on my husband's shoulders too - I felt that he had enough to contend with through the diagnosis itself.
If I had to do it all again, I would take exactly the same approach. For the most part my husband remained happy after diagnosis and, fortunately, he was unable to remember the more difficult and very challenging times which raised their head from time to time. The difficult times were not an accurate and balanced picture of my husband's overall experience and I am glad he did not worry about them in advance.