The hardest thing about the dementia which affected our family, for me, is the guilt.
I see it now in my neighbor: she feels guilty because she couldn't keep her husband home; she feels guilty because she is relaxing and resting now with him in the facility; she feels guilty because she is relieved to have that stress from her life. When my father died, I felt guilty because I felt relief, and I will feel relief again when my Mom goes, along with the grieving I am doing and have done. So much in the way of loss. We work so hard and spend so much money to keep them alive, and for what? Mom always said (in her own illogical/logical way),"There are worse things in life than being dead."
One thing which saddens my sister but impresses me is how comfortable my kids have become around the odd behavior manifestations shown by the people in the nursing home. The kids, especially the girls, just go with whatever comes up during a visit. Plus, they have learned to see the people who are in there behind the strange brain activity.
On Christmas, my cousins Ida and Sara had sent a huge box filled with great kid presents: fun pens, decks of cards, pencils, small things which kids love. The kids, with some prodding, had agreed to forego opening presents at home on Christmas morning, and to take their stockings and the box to the nursing home to open in front of my mom and her friends. (We would have the family present opening at home closer to lunch). When we left the nursing home, not one kid had any candy left in their stockings--they had joyously shared it with the people there and probably got more enjoyment out of that than they would consuming the candy themselves.
When it was time to go, we went around and said Merry Christmas to the residents. One lady, who has progressed quite far with her dementia and who frightens many visitors with her odd behavior, gave us the absolute sweetest smile, and the kids gave her a hug and kiss. Somehow, deep inside her, she found some memory of Christmas and blessed us by sharing, oh so briefly, the love and joy from that day.
Perhaps it is odd that some of my kids' most important lessons in life, love, and loss are being learned in a locked wing with people who are diagnosed with a form of mental illness. However, I am content to let the kids glean what they can from all this--in this case, our guides have damaged bodies and fragile minds, but their souls are still very much intact, and I somehow think that they are in closer contact with heaven than we are and consequently know what is really important. And who better to provide us with direction?