Dementia in a parent or relative of advanced years, though unwelcome, is not altogether unexpected. Not so with a friend or relative who, all things considered, still has a reasonably long life ahead. Especially if he or she is strong, mobile and energetic, with a penchant for an independent, self-determined existence.
My youngest brother Pavell turned 62 this past March. During the preceding five years his world has been turned inside out. He lived alone in a tiny space that was more museum than apartment. More closet than studio. Despite its miniature size, he kept it meticulously clean and filled with organic eye candy of every kind: potted plants, pretty rocks and stones, aged orange and lemon peel, dried ears of corn, driftwood, glass containers of artfully arranged beans, quirky tools, his paintings and drawings, and photographs – hundreds of them; pictures of relatives and friends that covered his walls from floor to ceiling. All this “stuff” was more than eye candy to him.
Every item, every scrap of plant or paper, every piece of orange rind that he meticulously peeled and hung up to dry, every pebble or hunk or rock that he harvested from wherever and put up for display on shelves that left little room to to move about; all these were tokens of his deep and abiding love of Nature and constant reminders that he was part of a big, beautiful family. More than the family though was his obsession with Nature. Inclement weather or nightfall were barriers to being outdoors any time and all the time. Bringing the outdoors in eliminated these barriers.
Like the rest of his siblings, he is not the most “sociable” person on the planet. His affinity has always been for a more solitary kind of life, with some piece of land to clear and plant things, and his “museum” style apartment as the center of his universe. Fast forward five years. He sits for hours on end, staring lifelessly ahead at nothing, drooling and incontinent; not sure where he is, what day it is or why he is where he is. Dementia has taken hold of his mind and body. He is in a Nursing Home on a floor with other individuals who suffer from the same illness. The difference between himself and many of these patients is that he is far younger and certainly more energetic and mobile (when he is not heavily sedated) than any of them.
No one saw this disease coming. None of his eight siblings or any of his children. Gradually, there seemed to be slight confusion or what appeared to be temporary memory lapses. Not living under the same roof or being together for family gatherings on a frequent basis made the decline in memory far less noticeable. Even his doctors missed the signals. They had to be alerted to the need to check to see if all was well with his mind. The diagnosis of dementia was long in coming.
Being in familiar surroundings masked the extent of his declining mental grasp. Making his way to and from the store he had frequented for years was easy. Going to the bank a few steps from his apartment building, no problem. Even traveling a familiar route on the subway or bus to visit a brother or sister living in another borough was okay. Not so with remembering what he did with the money he withdrew from the bank earlier that day; or knowing whether he had been given the correct change by the person behind the counter in the bodega or remembering where in that tiny apartment he had put his wallet or his keys; whether he had locked the door behind him or turned off the stove or not realizing that he had accidentally turned on the stove with the boom box on top of it. All these seemingly mundane actions became survival- challenging issues for him.
Amidst all this upheaval, the repeated hospitalizations, the need for sedation so that he is not constantly trying to either walk out or fight his way out of the medical facility; his other medical challenges with diabetes, despite the fact that immobility is taking a physical toll on him and likely an imperceptible additional mental toll as well, his penchant for an independent self-determined existence remains intact. And, herein lies the dilemma.
When he is not sedated he does not know where he is or why he is where he is. He does however know where he is not. He always knows that he is not in his own apartment where he wants to be. He always knows that he wants to go outside and gather something – a rock, a pebble, a plant, fruits and vegetables with which to make an eye catching organic “arrangement.” He knows he is strong enough to haul a boulder or a shrub transplant from one spot in the garden to the next. When he is in contact with a family member he never fails to give the admonition “remember to call me when you need some yard work done.”
He is strong enough and otherwise mobile enough to get up and go, to be out and about, to engage his muscles, his physical strength and his horticultural talents. He cannot survive on his own. To do any of the things he wants to do, that he is otherwise capable of doing, would require escort services outside the nursing home facility for at least some portion of time, daily or weekly. There are no such services or programs available for someone like him. Someone who has dementia but is still strong and mobile.
What can his siblings and loved ones do? What if any difference can we make? Just watch him waste away in the nursing home? What else can a nursing home do with someone like my brother? If not sedate him to keep him quiet and manageable, what else?