Joan--I really liked this metaphor! It is so true, in many ways. First, Sid may not thank you or even be totally aware of all you do behind the scenes now, but this may change. Early on (before his acceptance of the disease) my husband was the same way. However, once he entered the middle stage, he does seem aware and thanks me and our aide for every little thing we do for him. It's not just manners resurfacing, I think he is truly appreciative (I must admit, his doctor told me this is unusual.)
The other point that I wanted to make is--family/friends aren't aware of the behind the scenes support we provide either. People just look at our spouses' appearance and assume--he/she looks pretty much the same, the disease must not be progressing much. They aren't aware of all the work we do in grooming, dressing, assisting, supporting, etc. I think this is human nature and I would be the same way if I had no personal experience with dementia caregiving.
Yes, friends, extended family and even medical people see the stage performance. And unless they have first hand experience with dementia, their awareness of the pressures behind the scenes will likely be quite limited. Not that our LO's set out to perform . . . it is more the outward appearance that is projected simply by being alive and breathing! Until later stages, a LO can appear quite normal to those who only see them in more casual encounters. Or, if changes are observed (by closer friends or family members), it can be put down to aging or personality or personality changes due to aging. Who wants to apply the label of possible dementia? The dreaded 'D' word as our PCP very aptly stated to me when I shared some concerns and observations.
'Tis true, and--as always--not unlike life with small children. You set up the space, and everything that's likely to happen there, to preempt problems. Hence, things seem smooth to those not savvy to the machinations at work.
I've been told how good my husband looks, well-groomed, etc. Well, they should know that I'm the one who gets him to shower, puts out the proper (clean) clothing, takes him to the barber and tells him how to cut it. Yeah, he looks good but he didn't do it on his own!