My grandparents in their younger years, with me and my brother in their arms.
MY grandparents are 91 and 87. My grandmother has Alzheimer’s. She is, essentially, a baby. I use this term a lot when referring to her or other synonyms – small child, infant. This doesn’t feel right; it feels unkind, but I don’t know how else to describe her. She is, in the best sense of the word, a very well-behaved child. She smiles and laughs all the time. She never complains, never raises her voice, never whines. But she rarely speaks, and you can’t have a conversation with her because she can’t follow a conversation.
My grandfather, on the other hand, is allegedly of sound mind – but the stress of his life and the decline of aging are getting to him. Once a jovial man, he now snaps at everyone over the smallest thing. If you use a napkin to wipe your nose instead of a tissue, expect a reprimand. Move something two inches, dare to have heavy feet, boil water a second too long, and you will hear it. There is nothing that doesn’t bother him, and most of his personality now is unpleasant (to put it kindly), snappish and surly and impossible and cranky temperamental at worst.
My grandparents live in the same house they have lived in for the last forty years. In many ways, they are lucky. They have enough money, thanks to two full pensions from the New York City school system back when the system was flush, and have several of their children and grandchildren living nearby. My aunt, a nurse, spends a considerable amount of time caring for them and their needs. Both my grandparents can walk, although not for more than a few minutes at a time and at considerably slow speeds. They have both declined rather rapidly the past few years, quicker than I realized.
The problem of my grandparents and their future has been a perennial issue. My grandfather refuses to go into a home, and with my grandma by his side, they have arguably been able to prolong each of their lives. But my grandmother can’t take care of herself (can a two year old watch the stove, bathe or dress herself?) and my grandfather is physically constrained. A slight man, he has trouble bending down and lifting even a simple saucepan. Always a good cook, he basically relies on prepared foods now along with donations from his children and a microwave.
I have watched all of this and listened to the problem that has no solution. I disagree with my grandparents’ choices, whether they were made consciously or not, recent or in the past. My grandparents have an extremely limited life; they leave their house for church, doctor’s appointments and an occasional grocery run, along with some trips to the senior center. But they don’t do anything.
My parents chastise me that I am looking at their situation from a young person’s point of view. But I know that I don’t want that life when I am old.
On the other side of my family, I have a relative, who after her husband died two years ago, moved into an assisted living facility. She has what I call a dorm room, a little room with an attached bathroom and a small kitchenette. She can walk down the hall to the cafeteria, meeting rooms and lounge rooms and mingle with other residents, and there are group trips. I always joke that by the time our generation hits this stage the amenities will have to be upgraded – the food is Middle American, there are no game systems, no computers. Millennials are going to want sushi and vegetarian items, World of Warcraft and charging stations. But every time I see her, she greets me warmly and introduces me to all her new friends. She constantly talks about how happy she is, completely genuine. Yes, she is forgetful and repeats herself. She gets agitated and confused at times, too. But she never yells at me, and her health and quality of life has improved since the stresses of her late husband and the giant house she lived in are no longer in her life.
I have, over the past year, compared these two situations and railed against my grandparents’ decisions. This is probably unfair. My grandparents have always been a unit, so much that I cannot imagine one living very long without the other. (Indeed, when thinking of them passing, it was always together, at once.) Had my great-aunt not lost her husband she would likely be in a similar situation. Yet my great-aunt’s quality of life, at least on the surface, just seems so much better.
I feel a lot of guilt about my grandparents. I avoid seeing them, sometimes even avoid talking to my grandfather, because all he does is complain and rail against every evil in society. He watches too much TV, and takes everything – from Dr. Oz to the local news – too seriously. Despite being an adult, I feel I have no memories at all of my grandmother. I do not know what she is like. I remember several years ago talking to my grandmother on the phone, trying to suss out some of her interests. My questions were banal and like a too-inquisitive, too-boring date. What movies do you like? TV shows? What are your favorite foods? But while my grandmother was more talkative three years ago, she still could not answer these questions because she could not answer anything in specifics. I could not get a grasp on her at all. Who was she? What did she believe? What did she struggle for in life? What made her laugh? Cry? What did she like to do?
It is this that makes me sad, that any memories of her as she was, when I was a child, have essentially evaporated. My parents never had a video camera, so there are no home movies. In 2000, I asked my grandmother many questions about her life and I took (very poor) notes, only realizing later I should not only have been more diligent but recorded the conversation, though how I would have at the time would not have been apparent to me.
Even when I look at old pictures of my grandparents, or hear the stories my mother tells, I am in disbelief. It doesn’t match up with who my grandparents are now, and I cannot imagine them younger. My grandmother worked in a women’s jail, teaching juvenile delinquents how to sew. I cannot fathom my petite grandmother doing this for the life of me, though undoubtedly with the same good humor and smile she has retained throughout her life. I want to hear about their lives, who they were as teenagers, as twentysomethings, as people who had their own friends and funny stories and wishes and dreams. Occasionally I get a glimpse of something – my grandfather walking into a metal shop and asking, and then receiving, a job, one at which he stayed seven years before asking for a raise. I remember in 2000 asking my grandmother an absurd amount of questions regarding makeup. She merely said all the girls mainly wore a dab of lipstick.
At one point, my mother floated the suggestion of me caring for my grandparents one or two days a week, even though at the time I didn’t live particularly close to them. It is not something I want to do, for multiple reasons, and I have been outspoken about my repudiation of traditional caregiving duties for my parents. This comes across, to my mother at least, as selfish and ungrateful. But I find it profoundly selfish that I would be expected to essentially uproot my life and take on the burden of caring for elder relatives.
Burden. That is a word that is hard to escape in any discussion of caring for the elderly. Ezekiel Emanuel, a leading bioethicist, oncologist and academic, announced in The Atlantic that he wants to die at 75 precisely so he wouldn’t be a burden – meaning after that age, he want no medical tests, procedures or care that would only prolong his life. He would only accept palliative care. For him, it’s supremely about quality of life.
Truthfully, he persuades me. A week before I read his reasoning, Brittany Maynard ended her life. The disease she had, the rare glioblastoma, is truly awful, and would rob Maynard of her body and mind in nearly every awful way you can imagine. If you want to wish harm on someone, wish them a disease like this, wish them watching someone they live reduced to a jerky skin bag of bones, drooling and unable to talk or be cognizant about their needs. And as I read about Maynard’s decision and the steps she took to bravely end her life and reduce her family and friends’ suffering – well, in a word, respect.
When I was younger, I would often think about how long I would live, imagining a big number. It’s possible I could live into my 90s or later. But I also don’t want to be encumbered by disease and disability, and the idea that I would have to care for my parents in this age is unpalatable as well.
My hope is that with my parents seeing the struggles of their older relatives, they will make different choices and preparations. Both my brother and I have been adamant that we will not be their nurses or their housekeepers.
Cruel? Maybe. But neither of us are those types of people. Hospitals and seriously ill people freak me out, and I do not do well with people who cannot communicate. It is not a trait I like about myself, but it is my personality. I get frustrated too easily and can be unkind. Again, not traits I am proud of, and absolutely not good traits to possess when around sick and frail old adults.
I don’t believe in retirement and think Social Security should be raised – other opinions that my parents chide me for as being the opinions of the young. But I also see a system, as expressed in “The New Science of Old Age” and many, many other articles, as unsustainable. My grandparents retired thirty years ago. They spent the early ‘90s traveling around, and I guess visiting and helping out their children and young grandchildren. But why couldn’t they have volunteered their time and efforts or worked at less stressful and time-consuming jobs? I equal retirement to death, essentially, and I envision myself in my (very) late years as taking classes, volunteering, writing a weekly column, teaching a class or mentoring students. Still being me, but not working a stressful full-time job, assuming I can do this both physically and financially.
I actually think a lot about aging, as I see lines on my forehead and disappointment that my life isn’t what I want it to be nor where I want to be. And yet I cannot accomplish what I want or turn into who I want to be if I am forced to care for elderly family members.
Tiffany Stanley wrote a very moving piece for National Journal exploring the complex web of Alzheimer’s care, and how for a period of time in her late 20s and early 30s she was the guardian of her aunt, who had an advanced early-onset version of the disease. Her father, in ill health himself, spent seven years caring for his sister with limited resources, and undoubtedly the stress of the situation contributed to his decline and his death a year before hers.
Although Stanley mentions obliquely how the years of dealing with her aunt’s Alzheimer’s affected her work – she often commuted from her home in Washington, D.C. to her family in South Carolina, and spent significant stretches of time there – I wondered not only how she was able to pull this off, but the compromises she struck and toll it took on both her career and her life. Was she ever fired? Reprimanded? Afraid that she would be? She thinks about giving up her career to tend to her aunt, thinking she could do it for a year, maybe two. Yet how could she earn an income, prepare for her own future? Although in the end Stanley didn’t have to give up her career, I found the prospect of her even considering the decision unpalatable and unfair. I, like I’m sure many other women, don’t want to give up my life to selflessly care for others. Even though both she and her family were blessed in a fashion – many, many other caregivers wouldn’t have had the ability to move about so freely, as Stanley had.
***
My mother lives too far away from her parents to be a real help, and even when she offered to spend a few days with them this past summer, my grandfather’s irascibility essentially drove her away within a few hours. This is profoundly sad, and I know it weighed heavily on my mother. A colleague of mine was left to care for his parents five hours away – his father’s Alzheimer’s had turned a gentle man violent, attacking his disabled wife. Within a few weeks, my colleague was putting their house up for sale, going through decades of things and separating his parents – for their individual conditions meant they couldn’t live in the same place. He expects his father to die very quickly. Who wants to see someone they love turn into a completely different person, one who doesn’t quite realize what is happening? It’s like they’ve been possessed by a devil, or just a gene flipping a switch from good to bad.
Ann Patchett experienced this with her own family, though less of a personality difference than a starkly physical one. After years of living on the East Coast, she moved back to her family in Nashville, at first because she was interested in exploring a relationship with the man who was to become her husband and because the book project she was working on fell apart, though she stays to care for her aging and beloved grandmother. In an interview to NPR publicizing the book where an essay on this period of her life is included, she says, “And the trick of it is to love them for who they are that day, to never look at that person and think, ‘I remember when you were my grandmother and you used to knit me sweaters and make me dumplings and wash my hair. I remember when you did all of these things and I’m mad that you can’t do all of these things for me anymore.’”
Of course, she adds, she is able to say this because she is decades away from the experience. Yet in “Love Sustained,” the essay about her experience caring for her grandmother, she makes the same point. Her wisdom, of loving the person in front of her, the person as that person is at that moment, right now, to me is the secret to acceptance. It may be why caregivers that are strangers to the patient are able to do these jobs, because they do not have memories of who the person used to be ingrained in their minds.
Patchett also asks herself the same questions Stanley did: “If only I knew when she would die, I could pace myself. My grandmother was ninety-two. Could I do this every day for another five months? Absolutely. Another five years? I wasn’t entirely sure.”
If both Patchett and Stanley knew when their respective family members were going to die, they would have made different choices.
And that’s the argument that Emanuel makes in “Why I Hope to Die at 75.” And it’s also, in a roundabout way, what Atul Gawande – a doctor himself – learns in Being Mortal, his exploration of how our medical system is failing the very old and ill by focusing only on medical interventions, not quality of life. And it comes down to difficult discussions and decisions regarding, in the end, what matters to the patient. Even with diminished capabilities, what can they live with? What will make life worth living?
***
I read Being Mortal several months after first working on this essay, and in some ways my thinking has changed. Originally, I was extremely pro on my great aunt’s “choice” to move into a type of assisted living, because she seemed much happier than my grandparents stuck in their home of forty years.
I still don’t want my grandparents’ lives.
In the five months since I originally wrote this piece, my grandparents have grown frailer. They wouldn’t pass many of the eight Independent Activities of Daily Living that health care professionals use to determine if a person can live safely on their own: being able to shop, travel, manage medications, finances and housekeeping, preparing food, doing laundry and making phone calls. My grandmother alone wouldn’t be able to pass the eight Activities of Daily Living, since she cannot dress, bathe or groom without assistance. (Her grasp on the other fundamentals – including getting up out of a chair or bed and walk – remains iffy.)
My grandfather barely makes his own meals; my aunt comes over regularly, preparing simple sandwiches and bland dinners. The food looks unappetizing; this isn’t a knock against my aunt, who has made many wonderful dishes over the years, but more on my grandparents. My grandfather’s obstinacy has made this his reality. There is a line about how old age isn’t for sissies, and that is abundantly clear when confronted with the realities of decline.
In Being Mortal, Gawande makes the paradoxical case that terminally ill people live longer when they aren’t looking to proactively prolong their lives. It’s about knowing what the patient can and can’t handle and what’s important to them, so that their quality of life remains as high as it can be, even in the face of debilitating disease.
My grandparents are healthy, as the doctor says, but I think their quality of life is poor. Does my grandfather feel that way? I don’t know. My father has always said that one of the reasons that my grandparents have lived so long and done so well – no major health crises – is because they have stayed in their own home. Not only was everything familiar, but they were able to keep the same routines: waking up at 4:30 a.m. for my grandfather, setting out breakfast, going to the senior center. Although they still have some degree of autonomy, it is rapidly declining. My grandfather barely drives, and is very dependent on his children to do everything from his laundry to cut his hair. The fact that most of their children – and their caregiver daughter – live close by enables this arrangement to continue. They are lucky. But what about others not in their situation?
My great-aunt wasn’t able to stay in her home because her husband died and her health was declining. Although her stay-at-home daughter lived nearby, she was not a caregiver and had two school-age children to care for. The decision for my aunt to move into an assisted living arrangement was less one of her choosing and more one forced upon by circumstance.
Watching my family confront these challenges has given me an idea of what I don’t want: a loss of autonomy, which, in the end, is what most people don’t want either. It occurred to me while reading Being Mortal that my great-aunt is doing so well precisely because she has some level of autonomy. She has her own room, which might be the key. I don’t know the level of independence she has – she no longer has a car – and I hope she is able to have some degree of choice in how she lives her days. But that may be one reason why she has been able to smile, unlike my grandparents, even though both affirm how grateful they are for their lives.
I suspect that even in 60 or 70 years, I will be just as opinionated and independent as I am now, if not more so. If I’m in some dreaded nursing home, I’ll be that patient who rebels by stealing and stowing food, trying desperately to make my own decisions despite being forced into what I’ll probably consider a prison.
As I read Being Mortal – and reflected upon my own experience being seriously physically impaired – I was able to determine what is important to me, even if I was faced with disability or illness. Like others, having my mental capabilities be strong was immensely important (and something that I didn’t have to worry about when I was sick). Would I be able to read? If not be able to read, to hear? Could I write, or at least dictate my thoughts to people? Being able to communicate and still be intellectually stimulated would be of utmost importance. Could I still have relationships with others? Connect with people, both new and old, near and far? I want to be able to enjoy tasty meals of variety and spice, ones that I would have some degree of choice in. Physically, of course, I would want to be able to go outside. The specifics of this would have to be worked out depending on my limitations – of course I would want to be able to run, but I know I could live without it if I had to. Above all, would I be able to spend my time how I chose to do so, spending it with the people I want to, eating what I enjoyed, working and studying my pet subjects, and contributing in some fashion?
Although I am hopefully decades away from dealing with these questions, either for me or my parents, thinking about these issues has given me a tiny bit more clarity into who I am and what I want out of life. I still want to contribute, still want to be necessary. I don’t want to waste my energies on things I deem unimportant, and even when I am old, I want to be able to make new friends, new connections, and retain a grasp on the outside world. I want to live in a place with community and freedom, even if it’s a bit like The Truman Show. That’s what’s important to me and for many others. I hope that as aging continues to become a global issue, newer and different solutions – if you can call it that — arise. Because for many old and sick people, the current system makes it hard for them to live – and die – the way they want to.
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