This Father’s Day, I’m not sure if I should call my dad. I had the same misgivings a few days ago when it was his birthday. He turned 87. It’s not what you think. I have a wonderful father and we’ve had no falling out. But I anticipate that the phone calls will be more distressing to him than heartwarming.
See, my father has dementia, and this year it’s gotten much worse. He can’t get dressed without supervision, can no longer make his beloved Turkish coffee, cannot recognize that a tissue paper is a tissue paper and sometimes, when he wakes at night, can’t find his way back to his bed. He’s walked out of the house several times and gotten lost (the police helped bring him back).
Like all dementia sufferers, he has moments of lucidity but when the cloudiness hits, I’m not sure he knows who he is. I’m not sure he knows who I am. When I ask him, he says: “Of course. You are my habibti” (my love). And I think I see a flicker of recognition in his eyes. But I can’t say for sure.
I thought that I was an evil anomaly in my hesitation to contact my father. But then I read about a survey by the Alzheimer’s Society that found that over 40 percent of respondents said it was “pointless” to keep in touch with loved ones who could no longer recognize them.
Advocates urge family members not to give up on their ailing parents or grandparents. They insist that these contacts lift the spirits of dementia patients. The only one who is suffering during these interactions, it can feel like they are saying, is the young and healthy family member who finds it too painful to be around someone who now can’t tell his child from a total stranger. That may be the case, but for me it’s a little more complicated.
I used to think that if my dad no longer recognized me, I would be devastated. But weirdly, I’m not. Or not as much as I thought I’d be — or should be. And I’m not sure why.
What pains me more is his own distress when I am trying to interact with him, which I can sense when I talk to him on the phone.
For his birthday, I eventually called him. This is how the conversation went:
“Hi Dad, it’s your daughter Nana. Happy Birthday.” And then I started singing the song. I had read that songs help put Alzheimer’s patients in a good mood.
He interrupted me, clearly irritated: “I can’t hear you. Your voice is very low,” he said in Arabic.
In English: “I’m singing you Happy Birthday”
“I can’t understand you. Your voice is too low,” in Arabic.
Louder, in Arabic: “It’s your birthday today. I’m telling you happy birthday.”
“Yes, it’s your birthday.”
“Whatever you say but did you say something is secret?”
“No I said it was your birthday.”
“Maybe. Or maybe you are mistaken.”
He was clearly distraught. The only kind thing to do was to end the conversation.
“O.K. Dad. Let me talk to Margot.” Margot is my mother and the only person he seems to always recognize.
Later I tried to understand what it meant that my father didn’t know that it was his birthday, that the concept of a birthday seemed irrelevant to him now. Maybe, I realized, my father no longer inhabits the linear world. Much like the internet, all times and dates of his life now exist on the same plane.
It was just yesterday that he drove to the Beirut port to fetch the equipment delivery for his business, only to be told that the militiamen who have overtaken the port have confiscated the shipment for the unforeseeable future. It was just an hour ago that he met and fell in love with my mother, and he wants to ask this beautiful woman who sits beside him now if she’ll be his wife. It was only a week ago that he quit his job as a real estate agent in Maryland. Didn’t he just come back from playing bridge with a group of businessmen he’d met in Saudi Arabia?
Does it matter that he cannot remember that he is 87 now, and not any of the other ages he’s been? It matters to me, of course, because I am aware that it’s his birthday and still want to celebrate it with him. But does it matter to him?
That is the most troubling part of Alzheimer’s: We don’t know what someone in the late stages of the disease thinks or feels. My mother reassures me that he’s unaware and unconcerned, but I’m not so sure. I am pretty confident that my call didn’t do any good.
In-person visits can be traumatic for him as well. The last time I went to see him, my older brother Gabi also came. Several times during our visit, Dad asked me who the stranger talking to our mother was. “Why is that guy here?” he would say. I told him it was his son. “If you say so,” he replied. When we sat at the table for dinner, I could sense that he was struggling to understand who we were and to follow the conversation. Is it good for him that we put him through these episodes?
The Alzheimer’s Association says that the time that families spend with a sufferer “has a lasting, positive impact” and it offers some guidelines for families about how to communicate with the patient — like not asking him or her to identify you, as I can’t seem to help but do, to be patient, calm and reassuring. I will try harder to follow those directions the next time I see my dad.
And on Sunday, I will call him, because he’s been a supportive, loving father and I want to celebrate his fatherliness. I will not say “Happy Father’s Day,” because he will not be able to process what it means and I am fine with that because I have to be. If I’ve learned one thing from the last phone call, is that the markers that we as a society live by are too tied to our existence and are less important for our living.