This is what is on the yellow post-it that I slide over to the doctor at my Dad’s appointment. My Dad hates his doctor, hates pretty much all doctors, so getting him there is a big accomplishment. I wait until he looks down for a second and then I put it in front of Dr. Sherman. Doing nothing that could give me away, he glances down at it and then moves the note under some papers. This is not the first time we have engaged in this kind of subterfuge. Eventually the doctor will get to all of my concerns, which will result in, at least, making sure my dad no longer drives. Because at this point I do not yet have power of attorney, because I haven’t yet had my dad sign a document that says that my brother and I have the right to confer with his doctors, this all has to be done conspiratorially. (All of this will happen eventually, and none of it will be easy.) Doctor Sherman himself did not tell me how to do this, a few months earlier his nurse did. I told her I had some concerns about my dad I wanted to discuss with Dr. Sherman, but didn’t want my dad to know.
“He can’t return your calls, he can’t discuss your dad with you because of privacy laws, but you can let him know information. In fact, considering how little your dad comes in, it would probably be very helpful.” She gave me the yellow post-it and showed me how to pass the note. She explained that the doctor would know what I was doing and act cool about it. Just like fifth grade. I could, of course, just say these things aloud but it would likely anger my dad, and he would refute every one of them. He would accuse me of conspiring with his doctor, who, he calls “Dr. Quack,” only partly because he can’t remember his name.
I am already in hot water with my father. He sees me as his jailor. He has resisted, strongly, every effort I have made to help make his and my mother’s life easier and, most important to me, safer. Things like installing safety bars and a seat in his shower or carpet runners in the kitchen so he was less likely to slip on the tile. These efforts on my part were usually met with a bit of a shrug, as in, WELL, IF YOU THINK IT’S REALLY NECESSARY. But they both put up a fight as I tried to get them to accept the full time care they really needed. It took five years. My parents have now gone through many caregivers, who for many years we always made sure to describe as “assistants.” At first it was really more my dad who needed help. For a while a young cousin of my husband Mitchell’s drove my Dad on errands, went with him to lunch, took him to see friends, made sure he got his medications, hung out with him pretty much daily. He was an actor and an acting coach who at that point in his life had the time and didn’t mind spending afternoons with a retired TV writer and playwright who was still reasonably good company. This went fairly well until the day my dad realized that this young, charming companion was being paid (at that point my mom was still taking care of their finances) and the embarrassment of the entire episode shut it all down. His next caregiver was the son of my parent’s longtime housekeeper, a young, smart Latino man with a good sense of humor, but with whom my dad had almost nothing in common. Jose tried, God knows he tried, but my Dad’s standards were kind of impossible. He NEEDED someone who would be called upon to help him keep his clothes straight, make phone calls and drive him to his physical therapy appointments. But he WANTED this same person to know who George Gershwin was, to appreciate my Dad’s old stories of being in rehearsal on a Broadway play or fighting with network executives when he worked in TV in the sixties and seventies. Shockingly, Jose didn’t fit the bill.
Next was a woman in her early sixties, Sheila. She was very smart, very organized, very capable, and had enough of a show business background (she was married to a retired producer) that she could hold her own in terms of references with my parents’ conversations, which at that point were still, unless my mom was drunk or very hung over, fairly sane. She was kind of like my mom before she started drinking. Sheila was there during the daytime for a month when my mom went to her last stint at Betty Ford. My dad could still dress himself, but we were weaning him off driving (I don’t know why it’s taking so long, Dad, for your car to come back from the mechanic, I will definitely call tomorrow, but in the meantime Sheila can drive you) and he was starting to get confused. Small things, like which pipe tobacco he liked, bigger things like the name of his agent, even bigger things like, well, for a while he was absolutely positive that Hilary Clinton was dead. Also that someone had broken in during the night and replaced all their books with books that looked like their old ones but clearly weren’t. Sheila was quite masterful at letting him think that he was still in control, that very little had changed when, in fact, EVERYTHING had changed. (Except, actually, those books.) Sheila knew when to talk and when to listen, when to just leave him alone, and for the most part it all worked pretty well. Pretty well, that is, until my mom came back from Betty Ford,sober but crazy/anxious, to a house that no longer felt like hers. Sheila was doing the grocery shopping and the cooking, it was Sheila now sitting in the den on their phone, making their appointments, talking with their accountant, arranging my dad’s dentist appointments, dealing with the insurance company. In other words, all the chores my mom had been bitterly complaining about for years were now being done by another woman and this was apparently not okay. My mom would call me, apoplectic, saying that Sheila had gone shopping and the fridge was full of FOOD. Every single item that Sheila bought, was wrong. (Apparently my mom preferred their fridge to be filled with pretty much nothing but bottles of Ensure and some out of date eggs.) It was a stressful time and finally Sheila had to put up the white flag.
Then it gets, for me, a bit hazy. There was Samuel, a middle aged African American man who my dad, to my delight, really liked. They had no more in common than my dad had had with Jose, but they were closer in age and somehow my dad and he really got along. Then suddenly Samuel had to go home to Texas for two weeks and we never heard from him again. There was a tiny Phillpino man named Dom with a very thick accent that was a bad fit for two elderly adults with hearing problems. Every time he would leave the room my dad would turn to me, curious, “Can YOU understand a thing he says????” Sometimes I had to shrug and admit I couldn’t, either. There was Harrison, an earnest and exhaustingly chatty actor in his mid forties who even my dad noticed hadn’t had a credit in twenty years and seemed, with his stories about how he was about to be cast in a major feature, slightly delusional. My mom added more days to their housekeeper’s schedule and thought of the caregiver, whoever he or she was, as help just for my dad. It was a sinking ship and I was constantly plugging up the leaks when the truth was, we needed a new ship.
I knew it was far from perfect, was, in fact, somewhat dangerous to have only one person helping them out and nobody there at night. I lived waiting for the kind of horrible phone call that comes at three in the morning. My Mom could easily fall while making herself a cup of tea in the kitchen while my Dad needed more and more help getting dressed. For a while my mom would just wander out of the apartment the first chance the caregiver’s attention was elsewhere and end up at a local restaurant with one of those Courgartown-sized goblets of white wine. Or worse, we would find airplane sized empty vodka bottles in the bottom of her underwear drawer or in her purse that she had bought (or if she was with someone who knew she was not supposed to be drinking, stole) from a nearby liquor store. Why had we thought, ten years ago, when we encouraged them to move to one of the few places in LA where you could walk to a lot of restaurants and stores, that this was a good idea? I will tell you why. It was because all of this was unimaginable.
My mom, drunk, or hung over and angry, roaming the neighborhood, having forgotten how to get home and being picked up and brought back by the police. No charges, of course. (Sometimes I actually wished my mom would have to spend a night in jail, I thought it might help if she truly hit “rock bottom,” but in this case I was the delusional one.) The security guy at my parent’s condo telling me, embarrassed, that something had to be done about my dad urinating in the underground parking lot. The way my mom, in nothing but her pajamas at four in the afternoon, made people in the elevator feel uncomfortable. My Dad, a writer who for fifty years had made a living through his choice of words, a man who had his Oscar and Tony award nominations framed in his den, would say things like, “I want to go to that place with the white stuff,” and after five minutes of guessing I would learn the white stuff was sand and he was asking to go to the beach. I could go on but I will try and spare you.
I knew Sheila’s schedule for getting her hormone shots, I knew when Jose’s son was starting preschool, I knew when Harrison had a weekend date. I was friendly with these people but I took care not to get too attached, because I had a clear sense that none of these caregivers were going to last and, truthfully, I was emotionally maxed out.
So then the best/worst thing happened. My mom, again, got so drunk the caregiver (I don’t even remember which one it was now) called 911. As this had happened several times before, when I walked into the ER a couple of hours later I expected to be taking her home at the end of the day, after several hours of IV fluids to hydrate her and she had had the chance to sleep it off. But this time was different, her heart, her lungs…..none of it was good. She had had a heart attack in her late sixties, this was not that but somehow, with her advanced age, it was worse. She was in the hospital for a week, asleep almost the whole time. Then she was in a rehab (a physical rehab) facility for another month. I visited her several times a week, I brought her great food from nearby gourmet markets, and she was always appreciative. We hired private nurses to be there with her since she was, in hospital parlance, a “fall risk.” So it was strapping her to the bed or hiring people. She didn’t like it, but she accepted it, partly because her personality completely changed. She was obviously sober but much more confused than I had ever seen her. My Dad’s caregiver (I think it may have been Dom?) brought him a few times. At that point my dad could get around his condo on a cane, albeit slowly. But he had been in a wheelchair for any kind of outing for well over a year. But when Dom would wheel my Dad in to see my mom she would almost scream in surprise—-why are you in a wheelchair????? This went over about as well as you can imagine.
After three weeks my mom, after all that time without alcohol, with good, regular meals and even some fitness activities, was the healthiest she had been in years and ready to come home. But since she had no idea what home was, since she still thought when she arrived at her condo that it looked like her house but was actually part of the hospital, since she wasn’t sure what a toothbrush was used for, she needed (and accepted!) full time care and we hired some of the same private nurses who had taken care of her in the hospital.
There were a few more bumps in the road (she did try and escape to drink a couple more times) but pretty much since then it has been, caregiving wise….smooth sailing. This was four years ago, and up until a year ago I was still fielding calls from my mom saying, in a serious and completely lucid tone, that she and my father had had a long talk and now that she was strong enough it was time for them to be back on their own, that it was intrusive to their privacy to have people around and she had fired the caregivers. I would then remind her that she was married to a man who couldn’t shower himself or get on and off a toilet and that, hate to say it, they were both in diapers. She would sigh and say, “oh, I guess you’re right.”
So we are now in the last caregiver situation. My brother and I are so lucky that my parents can afford what they need, which is round the clock care. That neither of us has to consider moving them to an assisted care facility (and, yes, I know there are good ones, I took many tours, alone and with my parents, but was always shot down by one or both of them) or consider bringing them into either of our homes which would have been impossible. An “impossibility” that I realize thousands if not millions of people my age deal with every day.
Now, there are always two people there. I supervise big purchases, (recently we had to buy an enormous mechanized sling to help the caregivers move my dad in and out of bed and in and out of the recliner he sits in to watch TV) and I go to most of the doctor appointments but these remarkable women do a wonderful job. It is an ever changing group of faces, many work with the caregiving agency while going to nursing school and then leave for higher paying jobs. I am always happy for them and I often miss them. One, Joanne, an amazingly skilled and wise woman who now works as a nurse at a nearby assisted living place, comes by occasionally just to visit and is unofficially “on call” for semi-emergencies, those situations where we can’t quite decide whether to go to urgent care or not. She will come over and check my dads’s vital signs, monitor him for a few hours before deciding that, no, he is fine to stay home for the night and see his doctor in the morning. She does this asking nothing in return. My dad will occasionally say AWFUL things these days. One of the women who has been there the longest, Cathy, has a mole in the middle of her forehead and for a year my dad called her Black Dot. I wish I was kidding. I would admonish him and Cathy would say, no, it’s ok. It’s NOT ok, but what were either of us going to do?
These women are remarkably up beat and patient, and they honestly seem to love my parents. They laugh when my dad makes a lewd joke, something my “old” dad would never have done. They hold my parents and bathe them and change their diapers. I like sitting and holding my mom’s hand or giving her a hug, gently rubbing her back or planting a kiss on the cheek or the top of my Dad’s head, but I find myself happy not to do more. Even taking a napkin and wiping my dad’s mouth with it is more than I want to do sometimes. It’s just all too backwards. I have friends who have heroically nursed their parents as they died, not only spiritually joining them on their journey but taking care of the stuff that makes me squeamish. We were a Waspy family that rarely hugged and kissed, it would be a larger leap than I can imagine for me to now take on the role of true caregiver, and life has arranged itself to not demand that of me. I don’t honestly know how I would have handled it if things were different, but I like to think I would have stepped up.
A few months ago my dad took a fall and I got a call around midnight that scared the hell out of me. It was unduly alarming because the caregiver who called, Samantha, a very young woman (20 years old) who I know pretty well, was weeping so much at the idea of something really bad happening to my dad that she couldn’t get the story out, which was that he had fallen but was ok. Between her weeping and the time of the call I had thought she was going to tell me my dad was dead.I have resigned myself to the idea that it is very possible, maybe even likely, that when either of my parents dies they might only be surrounded by one or two of these caregivers, that I may not make it there in time, and it’s even less likely that my brother, living across the country, will. I am hopeful if it’s my dad that my mom will be nearby and vice versa. I of course have no control over this. I have DO NOT RESUSCITATE signs all over the condo, per my parent’s instructions years ago, and I checked with both of them relatively recently and that’s what they want. So either of them may take their last breath holding the hand of Cathy, or Samantha, or Jen or—-…
Caregiving doesn’t begin to describe it.