My father looks at me, but there is a strange passiveness to his expression, a seeming disconnect between the words and the feeling that should be behind them. He was trained as an actor, did it for over a decade when he was young, but that, along with so much else, has gone away. His ability to act “as if.” When he first started shuffling, freezing up in doorways and getting in and out of cars, I would take him to a neurologist where he would miraculously walk almost normally in the presence of the doctor. When I would question him about it later, when he was home and hobbled on a cane, he would explain that going to the doctor was like a performance and he was just acting “as if “ he could walk. This would baffle me, and still does. Eventually, of course, he lost the ability to perform or pretend. I know that the sort of placid mask that is his face much of the time these days is one of many symptoms of his condition, a Parkinsons-like syndrome caused, at least in part, by normal pressure encephalitis, which is a strange medical term for things NOT being normal because he has excess fluid in his brain. (And there appears to be some Alzheimer’s in there just for good measure.) But the sentence takes me by surprise because he has never said anything remotely like it to me. It sounds, as I write this, as if he is trying to make me feel guilty, guilty enough so I will stay longer. But my father has never used guilt as a currency.
My family didn’t play the guilt game. Any gift was appreciated, every invitation implied, “We would love to see you but if you can’t make it, no problem.” My parent’s happiness, particularly my father’s, for better or worse, never revolved around my brother and me. And once we were out of the house I never felt an obligation to see them or to participate in family rituals. Maybe because of this, I wanted to be at birthdays and anniversaries and at the house early in the morning to watch the Wimbledon finals with all of us together. My husband Mitchell’s family, in contrast, ran on guilt, it was the family fuel. They would not so jokingly refer to a complicated point system that everyone seemed to innately understand of favors and disappointments, of points earned for giving the perfect Mother’s Day gift (gift giving was set up as a competitive sport) or showing up for a family dinner where the appearance wasn’t obligatory…or lost by forgetting a relative’s birthday or declining an invitation. EVERYTHING was noticed and tabulated, even if it wasn’t mentioned outright at the time. The three siblings always knew who was in and who was out with my mother-in-law, long before Heidi Klum made it part of our lexicon. There would perhaps be a wordless frown but then three years later the “insult” would be pulled out of some invisible closet and hurled at the perpetrator with venom. It was until that time hoarded, waiting for the owner to use it at the exact perfect moment.
It took me years to understand all of this. In my family if I couldn’t make a dinner I would say, truthfully, “I have a cold,” and it would be accepted without question. In Mitchell’s family, well I would hear his side of the conversation and it would be, “I have a cold…..well, no, I wouldn’t want to infect you….ok, I didn’t want you to worry but it was actually a flu…..I had a 103 fever last night….I couldn’t get in to see Dr. Weinstein, I went to a clinic around the corner….yes it’s hygienic, yes they went to medical school in the US….well the guy I saw said it would be dangerous for me to go outside.” By the time the phone call ended he would be talking his mother out of sending an ambulance for him. And all the poor guy had was a cold that SHOULD have been accepted as bad enough to make him feel too lousy to go out.
Having said all that, I am still a fairly normal person and I admit that it always felt good when I would do something nice for my parents and it would be recognized, 99.9% of the time by my mother. I confess that I did rely on a bank of good deeds for my parents, small but increasingly larger favors or gestures I have done over the years. Gestures as small as bringing them fresh cut flowers from my garden to as large as organizing big parties in their honor or, much less happily, driving my mom several hours to different substance abuse rehab programs or my dad to brain scans. Sometimes they would thank me, other times they would forget. I honestly didn’t care, because I knew what I had done and, more importantly than I realized, I knew they knew.
Until they didn’t. I can’t quite pinpoint exactly when I realized this, but in the past couple of years it has become clear to me that they are both, in different ways, pretty much blank slates when it comes to remembering much of anything. They don’t have the exact same kind of dementia, so some days my mother will clearly remember, say, something that happened when I was in high school whereas my father will remember something from a few years back but nothing from his early life. And then the next time I see them it will flip flop. The “good” news is I have yet to experience what will be excruciating, the moment where I walk in and one of them looks at me with no recognition. Once or twice, upon waking from a nap, my dad will stare at me an extra long beat, thinking for a second or two that I am my mother, but it passes quickly. But they are kind of in a constant state of mild to pretty severe confusion. They know they have four granddaughters but usually can’t name more than one or two and seem completely shocked, every time, when they are confronted with the fact that all of them are grown. Going through old photos sometimes helps, sometimes makes things worse. They will look at a picture of an old friend and say they have to phone them only to have me, Debbie downer, remind them that the friend has been dead for over a decade.
They love it when I come over, they are always inordinately pleased to see me. I am like a celebrity. I have a 6 month old puppy these days and if I go without her my dad expresses disappointment, he definitely remembers her from previous visits. But on the same afternoon he will suddenly ask where he is, ask if he is living in his own house, or why he stopped playing tennis. He’ll go on about how his old weekly doubles game broke up, as if it happened last fall rather than last century. And then he’ll continue to say that he needs to restring his racquet, that he twisted his knee a few months ago but it feels better and he wants to get back on the court. This is my cue to to tell a man in a wheel chair that he is IN A WHEEL CHAIR. He will look down at it, as if noticing it for the first time, somewhat but oddly not completely bewildered.
One or two Sundays a month I go to my local farmer’s market and pick up produce on my way to visit them. I also pick up delicious, fresh and still warm lobster rolls made with Maine lobster, a favorite of theirs from their years back east. The first time I brought them my dad professed it was “the worst hot dog” he had ever tasted, only to be chastised by my mother as to its true contents. Once he understood it was a lobster roll he loved it. My mother LOVED every bite, she literally thanked me fifteen times while she was eating it and after she was done. I hadn’t seen her this happy in months if not years. I sat there in their kitchen, beaming in their enjoyment and gratitude. I had done something that brought them great pleasure, I was the good daughter. So a few weeks later, I did it again. And I got the same response, and somewhere in all that gratitude I realized that they hadn’t remembered the first time. So then I started asking them, do you remember the first caregiver I hired for you? Do you remember the night in the ER Mom when we went to that strange hospital that wasn’t your usual one and how you got so agitated you tore all of your tubes out, spilling blood everywhere? Do you remember why you were there? (Alcohol poisoning.) Do you remember my arranging people to help you hang your pictures on the wall when you moved in? Do you remember my finding the massage therapist six years ago who still comes weekly and gives Dad a massage? Do you remember two years ago when Dad was in the hospital for five days getting that spinal tap procedure and I spent several hours there every day in spite of having not a cold but an honest to God awful flu? Do you remember the steak dinner last summer at Ruth Chris’ with the caregivers and Mitchell and your one friend who still comes to these things to celebrate your anniversary?
You will probably not be surprised to learn that no, they don’t remember any of it. But here’s the good part, and there is a good part. Every time I bring them lobster rolls they act as if it’s their first lobster roll in ages, and they aren’t acting. They are amazed at how fresh it tastes, how delicious it is, how it brings back memories of Cape Cod and Martha’s Vineyard from so many years ago. So I get to be the good daughter all over again.
It must be said, because my parents didn’t try and guilt my brother Chris and me, because they always wanted us, their only two children, to be the best of friends, when I say “the good daughter,” I don’t in any way mean the better child. I just simply mean that I enjoy being recognized for doing something nice. My brother lives 3,000 miles away and visits 2-3 times a year and sees them daily when he does. I know he has his own complicated feelings about it all, and I wouldn’t presume to discuss them here. But let’s just say that with the situation being what it is, I am, most of the time, the point person, their main contact with the outside world.
A few months ago one of their caregivers called me saying my dad was very agitated because my mom mentioned that his mother was dead and this was deeply upsetting to him. She died in 1981. I spoke to him for quite a while, trying to find a detail that would bring him back to her funeral in Toronto, a funeral that I hadn’t been able to attend. Finally I remembered a story he had told me, about he and his father picking out her casket, how his father, a carpenter, in spite of his grief, appreciated the woodwork of some of the samples. To my and my father’s great relief, it all came back to him. His biggest worry had been that he had missed his mother’s funeral and the story reassured him that this was not the case. So I have become, except during my brother’s visits, the keeper of the family stories.
They live less than half an hour from me and I average weekly visits. So, if ten days go by I start to feel guilty. I wonder what the caregivers must think of me. I feel guilty that my parents have had sufficient resources so I have never had to change their adult diapers or help them in the shower. Guilty and so, so grateful. And guilty for being so grateful. When I walk through their door they don’t know if the last time they saw me was last Wednesday or two months ago. I am honest with them, and if I have been traveling and haven’t seen them for several weeks I tell them and they never make me feel badly about it, they just politely ask me about my trip.
For so many years my Dad was…..there are so many words but the only one I can come up with is asshole. I’m sorry, but there it is. He was never easy, but he got much worse in his sixties, and I give him the benefit of the doubt to think that the mood swings and the raging were at least in part caused by (at the time) an undiagnosed brain condition. And for so many years my mother was drunk or hung over and exhibited an uncharacteristic anger and narcissism and an unsettling cluelessness with regards to what her drinking and her lying about her drinking was doing to all the people she loved. Eventually, my Dad got too sick to have any strength behind his anger, and the dementia dulled him and his meanness. My mother got too weak to actually be able to get alcohol so she stopped. But all that drinking left her with alcohol induced dementia and none of us will ever know what those years would have looked like if she hadn’t fallen into a pit of alcohol and depression. So, here’s the biggest source of my guilt–I prefer them this way. I miss having an authentic relationship with them, but this is so, so much easier.
But lately I have started wondering what a truly authentic relationship really is? Surely, while dancing around dementia and drunkenness, I haven’t had one with either of them in many years. And before that I would, of course, keep my mouth shut or my feelings clamped down when my dad would show no interest in my kids or my mother would forget (when her brain was fine but she was fuzzy from vodka the night before) that the reason I wasn’t home when she called was that every third Thursday I was getting chemo. In a funny way, maybe this is the most authentic relationship I have had with them, perhaps ever. There is no baggage from their end, they don’t remember ever being annoyed or disappointed in me, or hurt about those times when I pulled away from them. In fact they have never been so enthusiastically complimentary towards me–you look so young! You are the best daughter anyone could ever ask for! I have been so blessed with my children and grandchildren, they are all so smart and such good people! It’s like they have had a personality transplant. But it’s also very Buddhist, or I like to think of it that way. There is no past and there is no future, there is only this moment, now. I will just sit next to her and hold my mother’s big knuckled but small, dry hand and she will squeeze mine back with a strength I didn’t know she still possessed. If I bring them flowers she will go on and on abut the red of the roses, of the difference in the gradations of color, in a way that she never would have in the past. When most of the world is a very confusing mess to her she NOTICES things in a new way. My father, a lifelong interrupter and terrible listener, will ask me to tell him stories from his life involving old friends or funny family tales from ill fated trips, and he will sit and listen with great concentration, holding on to my every word, still able most of the time to laugh at all the appropriate places. He will laugh heartily because the humor of it is all new to him. There were so many years where I felt it was hard to get his attention, and now, now he has nothing but time for me. It’s all very “Cat’s in the Cradle,” that song from the seventies about the father who is too busy to see much of his son growing up but when he gets old and wants to be part of his life, the son has no time for him.
So I do try and make the time. And, like the diapers and the simple, bite size food and the rails on their beds, my time with them these days reminds me often of my children’s toddlerhood. I would, like most mothers, spend hours upon hours on the floor or at the table with my kids, playing with blocks or simple puzzles or play-doh or coloring, knowing, thinking even then, that they wouldn’t remember any of it. A friend of mine, a mother herself, would assure me, “they remember it on a cellular level” and I like to think they do. But it didn’t really matter, those times were among my happiest because, without any effort towards it, I was just so present. And that is happening again here. In their condo very little from the outside world comes in, there is just now, this moment, with each other. Nothing else really matters.
There is no extrinsic reward here. Nobody cares that I am the good daughter except, perhaps, my parents at that fleeting moment. Chris visited recently and, talking about saying good bye to them, especially the last goodbye before he was going back home, he put it perfectly. He said he can’t wait to leave them and he can’t bear to leave them. Absolutely. And yet somehow lately I have been feeling better about all of it, grateful for the opportunity to have at times the most excruciatingly boring and often repetitive conversations with them, grateful to still have some kind of conversation. Because, all too soon, there will be nothing but silence.