FROM THE HEART.4 - Dec 2006

Tales from the B-List

There were good days and there were bad days. When one of us was on my father's B-List, it was a bad day.

To get on the A-List, one need do nothing more than walk into the room and say hello to my father. He would smile and laugh a hello, as if he hadn't seen the A-List member in years.

To get on the B-List, one didn't have to do anything more than walk into the room. either. My father would scowl and demand "What the hell are you doing here?"

We came to realize, it didn't matter who WE were, it mattered who HE was at that particular time of day.

To be on the A-List was a gift from above. All went smooth, there was complete cooperation, and caring for my father was a pleasure. Nothing was difficult, everything was a breeze. It was almost laughable to think people complained about caregiving. It was a piece of cake!

To be on the B-List was punishing. Nothing worked, there was argument and challenge, and caring for my father was a nightmare. Everything was questioned, nothing went smoothly. It was tears of frustration, not just sweat, we mopped from our brows. Caregiving was hell.

Between these two extremes, we passed eleven years of our time with my father. Finally understanding the rules of this twisted game - Alzheimer's wins/you lose - we upped our defiance level. We don't like to lose. We devised the A-List/B-List Theory. We turned it into OUR game, and fuck Alzheimer's. To get on the A-List took sheer luck, but to STAY on the A-List required much skill. No arguing, constant reassurance, gentle suggestions, slow, quiet, peaceful hours. But experience taught us, you could fall from a coveted A-List position without warning and all hell would break loose.

You could move off dreaded B-List membership, by gritting your teeth and waiting for it to pass. This wasn't any fun at all. Or, you could try to work the odds and regain A-List positioning. Did I mention we don't like to lose? We read books, we asked people questions, we queried web sites and there was little that actually applied to our particular situation. Years ago, information was even harder to come by than it is today, blogs didn't exist, at least not in our realm, and we wouldn't have had the time or energy to invest in the search anyway. The Alzheimer's "experts" we did contact and who's advice we paid thousands of dollars for were such a joke I'm dedicating a future post just to them...Basically, we were left to our own devices and, oh my goodness, were we ever in strange territory!

The biggest and hardest moment was when we embraced the truth that my father had no memory of who we were, Alzheimer's had swallowed us whole. But as thinking, creative and loving daughters, we were also free then to establish new relationships with our father. I remember convincing him once I was a doctor and licensed to brush his teeth. My sister brilliantly discovered if she would leave the room when she was B-Listed, tie her hair back, put on red lipstick, and re-introduce herself to my father, bingo, she'd be A-Listed. My other sister would humor him by pantomiming things he knew from long ago, her flying like an airplane around the living room comes to mind, my father's eyes glued to her every move, nodding in agreement. A loved, hired caregiver had quite a unique communication system devised of beeps and chirps, like a strange bird, and my father would be entranced, copying the odd language in reply. For awhile, if we burst into a hearty rendition of "Happy Birthday" my father would find himself joining in with much gusto and the day would shift from confrontation to celebration.

We found our skills by accident and clung to them until they failed us and new ones had to be discovered. It was grueling, relentless work and our success can only be credited to the fact we shared the burden with each other. We couldn't have done it alone, at least not in this household.

It was hardest on my mother, as can be expected. She had had the longest relationship with my father and her habits were engrained. She would never, ever deceive him, no matter what, whereas my sister and I, well, hadn't we spent a good deal of our teenage years doing just that? It was easier on us. And we became quite good at it. To get him to move from one room to another might be accomplished by saying we were going for a drive, let's go to the car. He loved car rides. Up he'd pop, ready to go, but the path would really lead to the kitchen for lunch. If we had asked him if he wanted lunch, he would have said no and there would be no talking him into it. But finding himself there with a meal on the table, he'd sit down and eat, never thinking about the car ride. Another thing that helped was to act as surprised as he did. How did this lunch get here?! Who knew you liked ham sandwiches?! Who could have made this?!

What did help my mother, though, was devising the "A-List/B-List" Theory. We were able to help her feel less responsible for having "done something" to trigger his wrath. She was in good company, with her daughters, no matter what list she was on. It was one of our many methods for coping with my father's dementia. Anyone looking into our home would have found all of us, not just my father, completely certifiable. When we loved him, we embraced his world, too. We just didn't have the disease, or the mercy of forgetfulness it confers on those who do. We remember all of it.

What Alzheimer's made of my father was beyond our control, what it would make of us was entirely up to us.

This is not a place any of us want to visit. Those of you who find yourself here, you're not alone, as hard as that is to believe, there are over four million of us. As usual, I ask any of you reading this who are in a position to help, fund the research to end this disease. Visit The Unforgettable Fund, there is no amount too small to make a difference. Help us B-List Alzheimer's.