Heartbreaking lessons from a visit home: Learning to deal with Alzheimer's inthe family
"Lionel! Get out of the refrigerator!" This sentence punctuates most conversations I have with my grandmother.
"He opens the stupid refrigerator door every two minutes and just stands there staring at it. Lionel! What are you doing? Shut the refrigerator door! Jeez! What do you want to do, break the fridge?"
I hear Lionel in the background blah-blah-blahing my grandmother's reprimand, and I wait for this common scenario to come to a close.
Once there is silence, I politely remind Grandma that Lionel is not well. He forgets.
"I know, I know," she assures me, "but I think he does it on purpose!"
She will tell me that she understands that Lionel is progressing out of the beginning stage of Alzheimer's disease, but ultimately she thinks that everything he does is to spite her. I tell her that she is in denial. She tells me that she is not. I ask her to stop yelling at him. She tells me that I don't understand, and I don't.
I don't understand because I don't live close to home. I don't have to see the day-to-day dealings with someone afflicted with Alzheimer's.
I don't understand because I don't live close to home. I don't have to see the day-to-day dealings with someone afflicted with Alzheimer's. All I can be is supportive and understanding over the phone, which is difficult when my family is still coming to terms with how to be supportive and understanding of this terrible disease.
We're completely lost, not knowing how to deal with Lionel's own confusion. All of us standing there with exposed and frayed emotions, with barely an adolescent understanding as to why this is happening. I hear the stress in my family's voices.
"You don't understand," they say, "He swears, he yells, he threatens, he says mean things." And in my complete physical detachment I tell them such things are common in Alzheimer's, just to be sweet. I say they should not let these moments bother them, but how could they not?
When I talk to Lionel on the phone, he seems happy. Truthfully, he sounds 100 percent normal. Sure, he's always been difficult and forgetful, but how do we know when it's the disease talking?
The only way I know something is wrong is when my grandmother tells me he drives across the street, parks his car in the church parking lot and falls asleep on a near-daily basis. Or when he goes to the dry cleaners around the corner and comes back hours later. Or when the doctors tell my grandmother it's only going to get worse, and there will come a point when she can't take care of him anymore.
Happily ever after
My grandmother and Lionel met 12 years ago, when she fell in his building and sued him for her medical costs. Lionel took her out to dinner to convince her otherwise, but he ended up paying for her medical bill and asking her out again and again.
Lionel was an active old curmudgeon who enjoyed golf, skiing and the occasional business venture. My grandmother was a recently retired business owner who enjoyed wearing heels to the gym. They were youthful 72-year-olds and, though it would be a stretch to say they were compatible or in love or that they even enjoyed each other's company, they formed an allegiance to one another.
These past 12 years have not been easy, but at even the slightest suggestion of Lionel moving into a home where someone other than her strained 84-year-old self can take care of him, my grandmother goes into an emotional outburst of saying it's not time — he's not ready, she's not ready. Neither Lionel nor Grandma truly believe that he is sick, preferring to think that with a little bit of determination this terrible dream will go away.
The truth is, he will probably have to move out soon.
This weekend, I saw Lionel for the first time in a year. We all went on a road trip to Vermont and, for the first time, I understood what my family is going through, what Lionel is going through. I watched closely as the range of emotions shifted over Lionel's face. I saw anger, indifference and joy in a matter of minutes.
In one sentence he would drop just as many F-bombs as he would terms of endearment. At one point in the car, Lionel asked my grandmother five times in a row how much social security she received. Once they finished the conversation, there would be silence for a minute, then he asked the same question again and again.
Finally during one interaction he said, "I'll give you my Social Security when I move out."
My grandmother quickly asked, "Where are you moving to, Lionel?"
Silence. I held my breath, wondering what he was going to say. Did he have a moment of clarity? Did he really understand what was going on?
Again my grandmother anxiously asked, "Where are you going, Lionel?" Grandma shook him out of his daze. He turned to her and said, "Oh, I'm not moving anywhere. Everything will be OK. I'll take care of you."