One of the most difficult and painful aspects of the dementia experience for me has been the frequency with which others' assessment of my husband's functioning is in deep contrast to my own. To put it succinctly, "He looks really great..." Or, "He doesn't seem confused to me." Or, "How can you think he has memory problems? We had a long conversation today and he seemed quite sharp to me." Or, "I haven't seen that in him."
I've met these comments with deep ambivalence.
On the one hand, I am delighted to learn that my husband has been able to have a normal interaction. That he was able to keep up, use his memory and intelligence and charm as he wants to and always has. That others are not embarrassed or wary of being in his company. This means he won't be isolated, because isolation is not good for anyone, and those with dementia are no exception.
On the other hand, there has at times been deep pain in hearing these remarks, particularly when they come from loved and trusted people. I've worked hard to remind myself that they might well come from simple kindness--wanting to minimize or not call attention to those things they did see, but don't want to pain me by remarking on. Or it might come out of their own difficulty in acknowledging the decline of their dear friend or relative. These reactions are real to me--they mirror my own inner dialogue. I don't want to see what I notice, either. I don't want to accept those losses, the little deaths. So, we look for the positives. The things that are still there. And try to find joy in that.
I believe that positivism is good. Very good. I spend a good portion of every day in a positive place. And yet....
And yet, there is a part of me that has needed very much (and still does) an affirmation of the things I see every day. Someone who will say, "I notice what you notice." "You are not making things up." "You can trust your observations." "How are you doing with this?" "It must be hard, do you want to talk about it?"
Otherwise, I can feel more than a little crazy. I've doubted myself. Wondered if I am exaggerating. Felt I am being passively unkind to my husband. Felt guilty about being disloyal. (Disloyal is big.)
But mostly, crazy is what I have felt.
As time has gone on and my husband's deficits have become more apparent, I feel less self doubt about my observations. I find some affirmation in what others notice. Time has taught me that what I witness when we are alone is real enough. How he is when he is with others is always the product of considerable energy on his part. He works so hard at normalcy. He can pull it off for short periods. Other people don't know that he goes home--or gets in the car--and falls asleep instantly. That it sometimes takes him days to 'recover' from being sharp for a sustained period of time.
No matter how much more difficult it is for him to hide his advancing losses, others are still several steps behind me in what they see. It's hard to get used to that. I battle the self doubt still. And the conflict between wanting him to show his best side, be connected and happy, and the real need to be affirmed in my experience of him--it's still there.
Thank goodness for the few people in my life who 'get' it. They have kept me from the funny farm.