What you should consider before you agree to be responsible for an incapacitated loved one
If you haven’t had any experience with guardianship for adults with dementia, it’s likely you don’t understand just how complex it is. You are not alone. Many family members of the estimated 6.5 million dementia patients in the U.S. struggle to understand if it is an option for their loved one.
Many more people will face that decision because the number of people with dementia will grow to 14 million by 2060, according to Centers for Disease Control estimates.
In determining whether to place someone under a guardianship and curb their legal rights, the court may call on a geriatrician or psychiatrist to assess the person’s functional behavior, cognitive function, disabling conditions and ability to meet their essential needs.
The simplest definition of guardianship is the position of being responsible for someone else. State courts appoint a guardian to make decisions for another person if the court finds the person to be incapacitated or unable to make safe, reasonable decisions for themselves, according to National Academy of Elder Law Attorneys (NAELA).
The simplest definition of guardianship is the position of being responsible for someone else.
Guardianship is serious business. People placed under guardianship, who are called wards, may lose their independence in making decisions about their finances, legal issues and health care. According to the U.S. Department of Justice, full guardianship can control whether wards can vote, who they may marry, where they live and if they can make end-of-life decisions for themselves.
An article in the American Journal of Alzheimer’s Disease and Other Dementias explains that the two tasks that are regularly evaluated in determining capacity are an individual’s ability to manage personal finances and take medications as prescribed.
Choosing and Monitoring Guardians
In determining whether to place someone under a guardianship and curb their legal rights, the court may call on a geriatrician or psychiatrist to assess the person’s functional behavior, cognitive function, disabling conditions and ability to meet their essential needs. A geriatrician is a specialty doctor who treats people over 65 with a focus on diseases like dementia that primarily affect this age group.
The National Academy of Elder Law Attorneys says guardianships offer safeguards. Guardians, for example, must periodically update the court on the ward’s finances and health status. Even then, courts have the authority to initiate unscheduled reviews of guardians’ decisions about their wards’ finances, property and health care.
Guardianship, “when properly used,” is a beneficial method to protect an incapacitated person for whom no other means are available to assist with informed decision making, the organization says.
That describes the original intent of guardianship, but it assumes the guardian is honest and accountable. Unfortunately, this is not always the case. Ample examples of abuse are documented by researchers and prosecutors.
An article in the Journal of the American Geriatrics Society first published in April 2022, sought to make a quantitative evaluation of guardianship in the United States but the authors found little consistent standards and data collection regarding the impact on patient care and the quality of life of people subject to guardianship.
Impediments to Oversight
The inconsistencies included fundamental matters, including the following:
The scope of the guardian’s duties.
Minimum standards for guardians. As of 2020, there were two states that had yet to require a background check.
Determination of incapacity. In the past, this decision often defaulted to a physician based solely on a psychiatric or medical diagnosis.
Regular independent reviews of the ongoing necessity of guardianship.
Educational requirements for guardians. Guardians are often required to serve in many roles that they may have minimal or no training. The National Guardianship Association (NGF) partnered with the Center for Guardianship Certification (CGC) to standardized educational content and offer certification.
Other drawbacks of guardianship included:
Once guardianship is assigned, there is greater tendency for the person to become lost to follow up. People who have been labeled as incompetent or incapacitated have limited ability to advocate for themselves, contact an attorney or access funds for court proceedings.
There is a greater tendency to assign full guardianship instead of less restrictive alternatives.
Recent Guardianship Law
In 2017, the Uniform Law Commission, a non-profit association that provides states with model legislation to clarify and standardize laws across jurisdictions , released The Uniform Guardianship Conservatorship and Other Protective Arrangements Act to encourage the “trend toward greater independence for persons under guardianship.”
“Over 40% of the American population has never discussed their wishes for end-of-life care with loved ones.”
The act addresses many of the previous inconsistences and proposes solutions going forward. So far, seven states have enacted the model guardianship statute in full and many more have adopted parts of it, according to the National Center on Elder Abuse.
Alternatives to Guardianship
There are multiple alternatives to guardianship but Americans need to start talking to each other. “Over 40% of the American population has never discussed their wishes for end-of-life care with loved ones,” according to the article in the Journal of the American Geriatrics Society. These measures should begin at the first sign of memory loss or preferably when getting ready for retirement to delay or prevent guardianship.
Tell your family your wishes and write them down in an advanced directive (living will and health care power of attorney).
Create a value history. A value history is based on values and beliefs and it provides a person’s future care choices.
Evaluate limited (partial) guardianship as an alternative to full guardianship. In this case, guardianship is granted only over the areas for which the person lacks the capacity for rational decision making (finances).
Designate a durable power of attorney and list two or three backup candidates for this important position if the first choice is not available. This agent could be responsible for financial, legal and personal matters.
Investigate care management services. Care managers are usually nurses or social workers that are trained to identify and provide for a client’s medical, psychosocial and financial needs.
Find a payee. Many organizations offer money management services which serve as a payee for vulnerable clients.
Enlist the help of your primary care doctor. You may have to teach them about guardianship and the role you would like them to play, but they could become your greatest asset.
Guardianship as the Only Answer
Appointing a family member or friend as your guardian often is the ideal solution. But sometimes a court-appointed guardian is the only answer. My own experience is an example.
I felt a sense of relief at the appointment of a guardian outside the family. It relieved us of the possibility of having to tell him that he had to stay in a nursing home for his own safety.
My father was diagnosed with multi-infarct dementia in 2016. The disease transfigured him from an intelligent, robust, fun-loving father into, let’s say, something different. My mother already had passed away, and my three siblings and I agreed that his guardian should be the same sibling who was listed as his Health Care Power of Attorney.
That legal document lets you state your medical wishes and appoint another person to make sure those wishes are followed if you are incompetent or no longer able to make your own health care decisions.
Release, Then Relief
We all arrived at the courthouse and my father surprised all of us by saying he didn’t want my sister, who had his Health Care Power of Attorney, to be his guardian. Another court hearing was scheduled, at which he agreed to have the court appoint a lawyer to be his guardian.
I felt a sense of relief at the appointment of a guardian outside the family. It relieved us of the possibility of having to tell him that he had to stay in a nursing home for his own safety. We would not be the ones sifting through his financial records to explain his debt and explain that his mortgage was being foreclosed on. We could preserve a few remnants of a familial relationship and focus on being supportive.
The guardianship duties performed by the appointed attorney were far from flawless. But, overall, they served as the best answer for the situation at the time.
As I lay in the maternity ward, I learned my mother was gravely ill. What followed was a year full of love, rage, resentment – and a strange cocktail of new life and imminent death
At the top of my fridge is a small ceramic jar of stilton, and every time I open the door I can smell it. Recently, it’s started contaminating other food. This morning I binned some butter after it took on the same scent.
The stilton went off in July 2019 but I can’t bring myself to throw it away. It was a flat-warming gift from my mother, even though my boyfriend, Oscar, hates strong cheese and I was then six months pregnant, so unable to eat it. When she produced it from a calligraphed paper bag, wrapped in green tissue, we didn’t tell her this. Instead, we thanked her and put the cheese in the fridge. When we moved flats two years later, the cheese came with us.
The stilton had been a mistake, one of many she made before she died a year later. They began when she forgot to refrigerate the turkey at Christmas, and ended when she failed to register I was in labour. Both were symptomatic of an illness that was already fogging her mind, but because it’s easier to remember the bad things over the good – it makes the loss less gaping – now, every time I open my fridge and smell that cheese, I thank God she’s not here.
A week before I was due to give birth, I realised my mother was going to die. It was late May and she had rung me at the office, repeating what a doctor had just told her – that there was a “blockage” around her liver. The vindication in her voice was palpable after feeling “not quite right” for a while. I had been doing my pelvic floor exercises at my desk and took her call in the stairwell. Down the line, I could hear her sucking her teeth, which was the sound she made when she was scratching.
I had spoken to my mother every day since I left home aged 18. People were often surprised when I told them this, their raised eyebrows suggesting that a reasonable relationship with their own parents relied on more limited contact. But we were best friends and uncommonly close – the idea of going to bed without an update on her septic tank was unthinkable. On the day I found out I was having a boy, I actually felt disappointed because we wouldn’t be able to replicate the relationship.
But I also rang her to check she was still alive. My mother was young, even when she died, at 69, but she had been party to her fair share of ordinary disappointment. Her father died when she was a child and, by the time she was my age, she was divorced with two young daughters. When she was 50, her second husband died (I was 18). And by 60, she’d had a heart attack, calling me with brisk alacrity right after it happened, still sitting on the kitchen floor, holding a scourer (she had been cleaning the oven). For this reason, I spoke to her little and often.
The last time I had seen her was in late April, the week before Easter, in the West Country house where she, my sister and I had once lived. She looked thin, and I could tell she was secretly pleased about that. She had started to feel nauseous, first at night, then all the time, and would eat raw ginger after every meal. When she was out, she’d carry it foil-wrapped in her handbag and produce it like Canderel.
Then came the itching, which consumed the whole weekend. I spent that Good Friday rubbing aqueous cream over the small lines that spooled across her back at intervals, but by Monday I’d rubbed enough. My enormous belly was itchy too, but, I yelled – and I really did yell – because I was pregnant, I couldn’t use the creams.
Permanently on the lookout for a heart attack, we were blindsided when she woke up one morning in early June the colour of mustard. Her GP suspected a liver issue but, recalling her monthly whisky and soda, we all thought otherwise. Except he was right. Like most pernicious cancers, this one didn’t reveal itself until it was too late, dragging an anthology of nasty symptoms along with it. We actually never called it cancer – because of the tumour’s size and location, it wasn’t diagnosed until after she died – but like someone lost at sea, this always gave her illness an unwelcome lick of ambiguity.
In the days leading up to the birth, I grew rounder and happier, while my mother got thinner and sadder – the same person, just shrunk in the wash. I cooked soups for the freezer and swam in cold ponds, the baby heaving itself around as I entered the water. In bed, I read books about motherhood by Penelope Leach and, for balance, Rachel Cusk, studying their methods like syllabuses. I still rang her every day, but the calls got shorter. The last time we spoke before the birth, I was killing time at the zoo and we had a row, this time about whether my sister would visit me in hospital, or stay with her. She won.
I always knew I’d have a baby, but it wasn’t until I got together with Oscar that I actually wanted one. Then, one night, I cornered him in the shower of our old flat and gave him an ultimatum, even though (as he often reminds me) he felt the same way. To start, we played a sort of roulette, but nothing happened. Two weeks later, not pregnant and on holiday in Exmoor, I stood in a field and told him I was barren, actually using that word. By autumn, I was pregnant.
I went into labour on the first Saturday in June. It was one of those days when London pretends to be another city, windless and warm, and no one knows how to dress, so they simply don’t. I was woken at around 5am by my first contraction and immediately downloaded an app to time them. In between contractions, we ate toast, and Oscar bleached the kitchen. Afternoon became night, and night became morning. By Monday, 5.30am, still contracting every 12 minutes and unslept for 48 hours, I sat on the edge of my bed watching a thin ribbon of light come through our curtains. I deleted the app.
Finally, that evening, we were in a cab to the hospital, thunder clapping across the night, pain dancing across my belly. The baby had become lodged on my pubic bone, so the following day, at 9cm, I started to push him out. This was when I got scared. But just as his head began to emerge, I was told we had to push him back up using a foetal pillow, a recent invention that is supposed to make the whole process less traumatic. There was a slim chance the baby had haemophilia so we couldn’t use forceps. There is nothing poetic about an emergency C-section – he was ejected like a cassette – and I was too wobbly to hold him. The whole thing took 60 hours, and I thought of my mother once, at 8cm, when apparently I called out for her.
My sister was electric on text throughout, but I didn’t hear a peep from my mother. The weekend I went into labour, she began deteriorating at speed. I found out later that my sister (herself seven months pregnant) had driven to her house to scoop her up off the bathroom floor and take her to hospital. I also found out later that on the day I was to be discharged from the maternity ward, she was moved to intensive care. I had been too spooked to ring the hospital, but when I finally did, from the labour ward, the nurse answered her phone. There had been extensive internal bleeding, she said plainly, as if giving me directions. I handed the phone to Oscar and felt myself lurch forward. The baby shifted in its plastic box, turning towards my voice.
Back home, in bed with him, that first day was unique in the way it always is: agony to ecstasy, compounded by a fast, private transformation. It was hot. Outside my window the elms had turned brown, and over the next two days I watched their bark come off in strips like banana peel while the baby foraged among the sheets for my nipples. I found the connection I shared with him so astonishing, I didn’t think it could possibly last. Four days after the birth, my sister rang and told me to catch the next train. I was at that post-op stage where you approach peeing and stairs with similar trepidation, and took her call on the loo.
Morwenna Ferrier with her son, who is now three
I knew my mother was dying, but I didn’t expect her to time it quite so spectacularly. The pram was still in its cellophane, so we took our as yet unnamed child to Bristol on the train, Oscar carrying him in a car seat while a steward pushed me in a wheelchair.
We arrived at Bristol Royal Infirmary just after 8pm. It was still light, the hospital was cool and empty. They let us on to the ward where a nurse pulled back my mother’s curtain like a compere.
Lying there, she looked small. The bleeding had stopped, but she had developed sepsis from a procedure to stem the flow of bilirubin and now virtually every organ was failing. Against all odds, she didn’t die that night, and for the next couple of days my sister and I took turns at her bedside, watching the monitor tracing a city skyline behind her. The baby, now one week old, stayed in the waiting room with his father. Every hour or so, Oscar would text that he was crying. I would sanitise my hands and my sister would quickly wheel me out. There, in between free coffee and grieving strangers, I learned to feed him. Sometimes, we changed him there too, fanning out 20-year-old magazines about ocean fishing across tables to make a mat.
I don’t know if the baby was hungry each time he cried, but I went anyway because it bought me time with my son and, quite neatly, time away from my mother. When she woke up, things became more complicated. She was afraid. She wanted us for longer stretches. We did what we could, moisturising her hands where the picc lines were inserted, washing her fringe and dabbing at her mouth with a wet swab while she pouted, looking – my sister, Oscar and I all independently noted – not unlike a baby.
In the waiting room, I usually got one breast emptied but rarely two before going back in, and often found myself in fist-biting horror detaching the baby’s mouth from a nipple using my finger so I could get back to her bedside. Sometimes he cried. Eventually he stopped. At least I think he did. The double doors of the ICU drowned out his cry.
Five more weeks passed. Twice she begged the doctors to let her die, and three times we were taken to a quiet room to listen to a consultant run through varying doomy diagnoses like a pinball machine. There are truths and then there is hearing them.
I wanted to be with my mother. But I wanted to be with my baby far more. Before long, I had begun willing her death on, like I was at the races. One morning, while walking my son around the garden, I rang my therapist to confess. “But of course,” she said. “You can only be mother to one baby at a time.”
My mother grew up in London but left when she was in her early 20s. She wanted fresh air and children, and moved steadily through the countryside west of London’s Olympia, where she was born, from Oxford to Wiltshire and finally to Somerset, where I grew up. My father left early. A single, working mother with dark hair and dark skin – her grandmother was Assamese – she sometimes confounded people. When she met my stepfather and his friends, she remembered someone calling her the “Indian princess”.
She was an art teacher, though really she wanted to be a mother who got to make art. Whenever friends came to stay, she’d sketch them while they watched television. The early departure of my father put paid to that. She returned to teaching. I was two and my sister was three. When my stepfather, Philip, a livestock haulage contractor, died in 2001, she left teaching to take over his business, learning to drive an articulated lorry to abattoirs and raising his sheep. I remember her getting furious when I told her she was a feminist. She only worked because she had to, she told me. She was an excellent teacher and devoted mother, but often pulled in different directions by both.
Over the first few months of what we imagined might be her recovery, life carried on: we managed to see Oscar’s grandmother and uncle before they died. We had moved into her house, but we were also able to return to our home in London for routine check-ups from healthcare workers and to name the baby. The health visitor’s questions were less about him and more about how I was coping. I simply was because I was.
The trips were peaceful, like calendula on a burn. In our creaking flat, friends came over with bread and tomatoes, and things for the freezer. One cooked us pasta, which we ate using a pouffe as a table. Another brought us her mother’s frozen chicken soup, but by the time it had defrosted we had to rush back to Bristol.
One morning, back in the waiting room, we were approached by a well-meaning doctor who suggested we stop bringing the baby into the hospital, to lower the risk of spreading infections. It’s strange to imagine a world in which MRSA was the overriding concern, but from then on, I would express milk in the back of our hire car as we drove into hospital, and Oscar would feed him in parks and cafes around the city.
In late July 2019, my mother was transferred to a local hospital in Chippenham for a further seven weeks. Prolonged hospitalisation is bad: bone density plummets. Oscar, the baby and I would stay for the duration and, come September, swap over with my sister, who was due around that time. Once again, I would hand over the baby and as much breast milk as I could produce in the 25-minute car journey, and sit bedside for four or five hours.
The days dragged. I wheeled my mother from the ward to the common room to the canteen. Rooms were filled with puzzles, crucifixes, rudimentary physio equipment and incredibly kind nurses. They played Vera Lynn during teatime and a woman hollered for God every hour. My mother, not yet grey, was too young to be here, too sane. Finally, the weather picked up, so I got her into the garden where she sat in her wheelchair, picking at biscuits. No one wanted to be here, but I wanted to be with my baby. I wanted to be a new mother, bored out of my mind, drinking coffees in parks, empty hours to fill. When I sensed my mother could tell, I would go and sit on the loo and scream into my sleeve. When I suggested bringing him in – he was eight weeks old now, but she had not yet met him – she didn’t look at me. “Let’s see,” she said.
Mothers die, children are born. These sources of pain and joy are universal. Yet had I known the year would be like this, would I have had him? Probably not. Two years after she died, having my son is the best thing I’ve ever done, and while I’ve heard that the experience of having a second baby can be a corrective to the first, I doubt that’s true, or even possible.
One day, a little after visiting hours were over, I was in the bathroom on the ward, lowering my mother on to the commode. She always strung out my departure with errands (changing her water, refolding her pyjamas) but this was a new favourite. The bathroom window was open and we both heard a car pull up. The engine stopped, and I heard my son crying tinnily through the car window. My mother looked at me and whispered: “Don’t. Leave. Me.” His crying got louder. Then my phone started ringing. It was Oscar. As I stood up, my mother grabbed my hand with more force than she had in months, her eyes also welling up. I could feel my breasts tighten as the milk began to drop. The screaming picked up, and I looked down and watched two palm-sized patches of milk migrate across my T-shirt. Only then did she let go of my hand.
I didn’t realise just how angry I felt, just how jagged my pre-grief had become, until my mother’s burglar alarm went off one warm morning. There was no burglar, and the baby was asleep. Then, of course, he woke up. We punched in codes, but the alarm wouldn’t stop. In fact it seemed to grow louder. We called anyone who might know what to do, but they didn’t know. I turned the house upside down until, inexplicably, I landed on a baseball bat in the umbrella stand. I grabbed it and started swinging wildly at the alarm, beating it and large sections of the wall around it into rubble. The noise persisted, though, because burglar alarms don’t stop if you hit them with a bat. Eventually my screaming brought the neighbours round; I opened the door wearing a bra and boxer shorts. Eventually, we discovered the number for the alarm company on the side of the machine itself and that, after all these years, it worked. I later learned that mice had chewed through the wires, and I had missed the water pipes by two centimetres.
My therapist told me that grief tends to start at the diagnosis, but I’ve now learned that anger, like childbirth, keeps stranger hours. I was angry because I had wanted my mother, angry that this was happening now, but above all angry that the roles had been not just blurred, but reversed. Finally my mother agreed to meet her grandson, in the hospital garden. I’d never seen her hold a baby and I was struck by the ease with which she did it. He was nine weeks old. She held him four times in total. A few weeks later, she was discharged.
At the start, death was not simply on the cards, or on the table. It was all the cards, the whole table. Without a procedure called a Whipple, one of the longest and largest operations you can have since it removes your pancreas and part of your stomach, the already low survival rate of one to five years was virtually zero. They had more elegant ways of relaying this, but death was a fairly precise outcome; it was just a case of when.
Despite this, the operation always felt non-negotiable, and a week before Christmas, my sister and I drove her back into hospital. The roads were icy and empty at 5.30am. All being well, we would get a call at lunchtime, they said. We had coffee and toast and drove back home to wait. She would stay in hospital until January.
That season was uniquely hard, though there are worse places to be than a hospital, with its artificial trees and blitz spirit. But when I remember, that New Year’s Eve, fainting in the bathroom after a viscous liquid the colour of cut grass shot out of a tube connected to her stomach and spilled out on the floor, I’m still thick with shame.
Against the odds, my mother didn’t die this time, either. But once again she couldn’t eat solids, or move independently, so it was perhaps inevitable that once out of hospital, this would change her. Back home, gradually then suddenly, she became clinically depressed.
As my sister and I drew up another routine of care, my mother’s day took on a new routine: watching The Vicar of Dibley, shuffling around the house listening to Mark Knopfler’s theme from Local Hero on a loop for hours on end, and vomiting up her pureed meals. The song came out the year I was born and I tried to picture her heavily pregnant, drumming her fingers across her small Panasonic radio to ease the contractions, instead of a 69-year-old recalcitrant woman in cotton pyjamas.
We spent the early spring of 2020 trying to imagine her future while I nursed my son. She fantasised about Dignitas, though by this point, with coronavirus emerging, it was becoming clear that no one would be flying anywhere. We had no choice but to keep her alive, so instead, in between work shifts, Oscar and I drove to large green spaces – a monastery garden, an arboretum – and taught my mother how to walk. Circling an orchard, she cried as I timed her laps while the baby napped on a bench.
In desperation, we forced her to see an end-of-life therapist 20 years her senior, and woefully bad at his job. The last time we saw him, he’d let her out five minutes early, in the rain. Concerned she’d die either bankrupt or of boredom, we got home and wrote an email saying as much, and cancelled future sessions. Like that, the onus moved swiftly back to us. I pureed mangoes for my son and more for my mother, and they ate together at either end of the sofa, propped up on their pillows.
At the time, we had no idea what was happening, why she seemed to be getting sicker. The days had a rhythm, but at night things felt darker. I got drunk on my own – Oscar now back in London, not with flu, as we thought at the time, but Covid – scrolling through online support groups and firing off emails to the high-dependency unit nurses asking, then begging, for help. My son was seven months old, and awake every 45 minutes, so I began most days in a brittle state, though who’s to say whether it was tiredness or the hangover.
Weeks passed. No one replied to my emails. As the anxiety around Covid swelled, the gravity of what was happening felt strange and small to us. By late March, we handed over to my sister as part of our usual rotation, but I still called her every day. Then one day, in early June, my mother phoned me. The hospital had rung her with some test results.
In early March, most of her hepatology department had been signed off sick, so no one had received my emails from February. It turned out the surgeon had missed the tumour, and the operation had been unsuccessful. These things happen, of course, but for some reason, they had sent this news to Birmingham (where she had never been), yet neither hospital had contacted us until now. That day, I received three further calls in quick succession, mooting another operation, then chemo, then neither because she was inoperable. She would soon, it turned out, be dead. “I told you I was still ill,” she laughed down the phone. The next day, we celebrated my son’s first birthday with a square cake iced green and covered in small plastic horses. Then we drove back west, illegally, one last time.
It was odd to see the cafes and parks of Bristol, where we had spent so many months, empty. Inside the hospital, a cataclysmic reshuffling was well under way. Spaced seating and plexiglass, all staff and no patients. Like every consultant we’d met, this one danced around the diagnosis, but we pressed him on the details. We had already decided my mother would die at home (we had got this far without any care), but we wanted a picture of those final weeks: in what order would her organs give up, what would she sound like, how would we know. A year ago, when the doctors refused to let her die, the tension split the room. This time, she was getting what she wanted.
During the last few months of her life, there were two things that made my mother happy. One was spreadsheets. She drew up lists of furniture and shuffled behind us with a measuring tape as we walked around the house bickering about mirrors. The other was talking about taking her own life. The illness had transformed her, and I knew there was no point pretending otherwise. She wanted to take control, hurry things along, and became terrified that this would go on for ever. She ran through methods, and I explained the mess and how hard it would be to sell a house with blood on its walls. I listened, hoping this was not the same as advocating. Suicide, it turns out, is very, very hard to pull off successfully. (After she died, we found goodbye notes hidden around the house, which I still have in a drawer.)
Finally, finally, we got some help. Over the next month, palliative care and district nurses came and went. We never saw their faces behind the PPE, but would peek out of the window as they got changed in the car. Solids stopped, juice became water, sipping moved to straws. We used the baby monitor to listen to her breathing upstairs. We sat with her and talked about the heat, the dog, the garden. On more jaundiced days, we told her she looked like one of the Simpsons.
During those final weeks, we felt calm. Waiting for someone to die is bizarre, a little like Christmas (knowing it will come, not knowing how it will pan out). Still, nothing prepares you, even a year of knowing, so we distracted ourselves. Thankfully, WFH allowed our partners to be around, and my sister and I took our sons to the local weir to swim. It was July, lockdown had lifted a little, and the countryside opened up again. The west was blooming. Once, my mother’s room became invaded by wasps. They circled her bed, strangely beautiful, which gave an already dramatic tableau a strangely divine hue. Bound by this strange, anticipatory grief, things felt bittersweet.
Trying to eke out my compassionate leave, I was still working part-time. I remember putting my son down in the room next door and lying on my mother’s bed to write an article about shoes. As I typed with my left hand, I patted her hand with my right. She didn’t react. I stopped and checked her pulse, reflexively, but could see her breath rising weakly under the sheet. Lying down with my back to her, I pulled her body towards me so that we lay there, spooning, like she would do when I was sick. I told her the world was unrecognisable, how she’d hate it. I don’t know if she heard me. Somehow I finished the article and – I don’t exactly know why – took a photo of her. Sometimes, while scrolling through photos on my phone, I land on the shot and it shocks me like a nude.
The last conversation – something informed by what you think you should say – weighed on me. Technically there was time, but, given my mother was heavily sedated, I had to manage my expectations. Then, in early August, about two weeks before the end, I was in her room, when I saw her eyes open. I sat on the bed and asked her why she was leaving me now, when I needed her. “I’m so proud of you, Wenna. You’ll be fine,” she told me. I wanted to thank her, to reciprocate, to say I’m sorry for being so angry with you, but I didn’t. I was sorry, but I was also angry. The woman lying in the bed wasn’t her, just as the sick woman in various wards wasn’t either. We never spoke again. Two weeks later, as my sister and I were folding towels in her room, we heard her breathe in sharply, and grimace. We told her that it was time to go, and that we were OK. Our babies napped in the room next door. Then we watched her die.
After the funeral, held at a crematorium in Bath and attended by 12 masked guests, I returned to London. On the way home, I read about – bear with me – the animist conception of the world, the power and energy that exists in nature and even in human objects, the idea that we project one another on to these things. How objects, however practical, can become shorthand for love, and how easy they are to lose. I forgot about it until one day, while jogging around the park in my mother’s old puffer, I found one of her tortoiseshell hair clips with a few strands of hair in it. Terrified I’d drop it, I ran straight home, put it in a drawer. I suspect I kept the stilton for similar reasons. How is it possible to feel homesick for a person?
I remember one night at my mother’s house when the baby, then seven months old, would not stop crying. Outside in the corridor, I heard a noise, and there was my mother, having pulled herself up the stairs on all fours, now slowly limping across the carpet. It was just midnight. She came into the room and sat on the floor and, for a full 45 minutes, rocked his cot until he fell asleep. Without a word, she limped back down the corridor and back to her room. It only happened once, but it was a glimpse into how things could have been.
You have to be in a certain mood to watch Ondi Timoner’s new documentary, Last Flight Home, which plots out the final 15 days of her 92-year-old father’s life. Hmm, do you want to zone out to a Parks and Rec marathon tonight, or watch a family come to terms with their patriarch’s decision to instigate an assisted death and end his overwhelming physical exhaustion and pain? It might be a hard sell, but for those who can bear to think a little deeper about the nature of existence – and the end of existence – the rewards are rich.
As the film opens, we join the Timoners in the aftermath of what we can only imagine to have been a long and difficult conversation: whether or not to support Eli – who was paralysed in 1982 and is now suffering from congenital heart disease and having difficulty breathing – in his decision to take advantage of the California End of Life Option Act. (There’s no debate about how Eli feels, as he somewhat starkly puts it: “I just want to be in the ground.”)
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By the time we meet them, Eli’s wife, Lisa, and their three grown-up children, Rachel, David and Ondi – who made her name as a film-maker with the very different but also surprisingly intimate documentary Dig!, about the divergent paths of two 1990s indie bands, the Dandy Warhols and the Brian Jonestown Massacre – have come round to his way of thinking, and are going to give their father the best send-off they can. All Eli has to do is tell the doctor his decision, and a 15-day countdown – which serves as chapter markers for the film – to his legally self-administered fatal dosage begins.
What happens next is quite extraordinary, and raises so much that is valid and instructive about how we live and how we die that it’s hard to know where to begin. In a series of Zoom calls and reunions at the bedside of the couple’s home in Pasadena, California, Eli says goodbye to the people who have meant something to him in his life. His colleagues, his friends, his care-givers, his extended family. He tells them he loves them, they tell him they love him right back. He fine-tunes his obituary, and makes quips about his bunk-bed style burial plot, in which he’ll await his wife’s arrival: “That’s heaven. I love Lisa on top.” What a thing, to look death in the eye and still make terrible dad jokes. Eli must be some guy.
And it turns out he is, or was. Now we get Eli’s back story, the part that Ondi is so keen to relay (something that Robert Downey Jr is also doing for his dad in his forthcoming Netflix documentary, Sr). Having set up an airline, Air Florida, in 1972, Eli became a hugely successful businessman and personality (that picture of a young King Charles looking bashful in a polo shirt? Zoom out and it’s Eli and Lisa flanking him on either side) only to overstretch himself and lose it all. We also find out more about the circumstances of his paralysis (it happened, somewhat shockingly, because of a massage), which caused a huge shift in the dynamics of the family as Lisa and the children rallied around to support him as he had once them.
Film-maker Ondi Timoner with her father, Eli, in the days before his death
What makes the film so bittersweet, is that while Eli’s family is saying goodbye, we as viewers are just getting to know him: getting familiar with the nuances of his relationships with his children, who are inspirationally – and to frigid English sensibilities, a little freakishly – demonstrative of their affection for him; getting a sense of his steady morals and kind heart (OK it’s not the most objective biography, but you’re prepared to let it slide); getting the odd exasperated aside from Lisa, a Bronx native, who raises her eyebrows to the camera as Eli, with just days to live, listens to a droning automated voice read out a list of his bank transactions.
And although the film makes no attempt to discuss the rights or wrongs of assisted suicide – it’s just not what’s being explored here, and that’s fine – you can’t help thinking, as the days tick closer, that Eli’s done something right. He’s got to see his children honouring him in the ways they are best able – David’s written his obituary; Rachel, a rabbi, is preparing his funeral; and Ondi is making this film – and, courtesy of some poison in a plastic glass with a drinking straw, he’s going to be able to show himself to the door. It’s hard, it’s sad, but you can’t help feeling that there are lessons to be taken from the Timoner family’s experience, and that, ultimately, a good death was had by all.
Before he met Charles Koehler—and before he married a woman, got divorced, and came out—Dennis Hostetler was a college student who needed money. In the summer of 1962 he began working in the W.R. Grace mine, cleaning the tools used to drag vermiculite ore out of the ground. The shiny, flaky mineral would be refined at the plant, and when heated, it would balloon into puffs that could insulate buildings. Libby, a town in northwest Montana, was a beautiful place, but Hostetler had bigger ambitions, so he took the $1,443.72 he’d made and got the hell out.
But pieces of Libby stayed with Hostetler, buried deep in the outer lining of his lungs. He unwittingly carried toxic mineral fibers from the mine to college in Missoula, to the Peace Corps in Tunisia, to Paris’ Left Bank, and to St. Louis, where one day, at age 67, he discovered he was dying. After experiencing fatigue, chest pain, and shortness of breath, Hostetler was diagnosed with mesothelioma, a deadly cancer probably caused by inhaling asbestos that tainted the vermiculite he mined. In 2009, a year after Hostetler’s diagnosis, the Environmental Protection Agency declared a public health emergency in Libby and initiated a massive cleanup effort that’s still ongoing. Hostetler had no illusions about what came next—he needed to put his affairs in order.
Death is an inevitable fact of life that most people prefer not to discuss. According to a 2012 survey by the California Health Care Foundation, 60% of Californians said that when they die, it’s very important to them not to burden their families with tough decisions. Despite that, more than half of the respondents hadn’t communicated their end-of-life plans with the people they wanted making decisions for them. Some were too busy with other things to think about it; others said thinking about dying made them uncomfortable. But having those conversations can make the experience better for the person dying. There’s less regret about what might have gone unsaid, and less anxiety and confusion for caregivers because they know their loved one’s wishes. Numerous studies have linked conversations about death to better, more peaceful deaths.
For members of the LGBTQ community, dying without the legal protections of a living will or power of attorney could mean spending their final days without the support of the people who love them. A 2010 study by the National Gay and Lesbian Task Force Policy Institute found that LGBTQ elders are twice as likely to live alone and four times less likely to have children than their straight counterparts. That means their caregivers are often friends, exes, or chosen family who aren’t always recognized by the medical and legal systems. “There’s no automatic protection in place to make sure that someone can choose the person that’s going to be making their [end-of-life] decisions,” says Kimberly Acquaviva, a professor of nursing at the University of Virginia who specializes in palliative and end-of-life care. “You have to put those things in writing.” Before same-sex marriage was legal, there were horror stories about families swooping in and making medical decisions that didn’t accord with people’s wishes. “Those things still happen,” she says.
Charles Koehler holding a photo of Dennis Hostetler at age 68.
A Better Way to Die
Hostetler met his partner, Charles Koehler, in 1984. While the two could never have prepared for how their relationship unfolded over the next two decades, they always had a plan for death. Before Koehler met Hostetler, he’d read the 1969 bestselling book Everything You Always Wanted to Know About Sex* (*But Were Afraid to Ask) and decided it would be better if he wasn’t gay. The book told him gay people led awful lives, an idea affirmed in an abnormal psychology class where he learned that homosexuality was in the Diagnostic and Statistical Manual of Mental Disorders.
If homosexuality was classified as a mental illness, then Koehler reasoned that it too must be a diagnosable disorder. But then Koehler actually met some gay men and realized their lives were just as varied as anyone else’s. Even then, it took years for Koehler to accept himself; when he did come out at age 27, he thought his life would remain solitary. “I had no idea what was possible,” he says. “I assumed that I would be basically closeted.” Both Koehler and Hostetler were hesitant when they met. Hostetler, who was older by a decade, had two daughters he still wasn’t out to. When Koehler moved in, Hostetler told the girls he was just renting a room. But in time they came out to Hostetler’s daughters and ex-wife.
When two of their lesbian friends asked them if they’d consider donating sperm so they could have children, both men obliged. At first the men agreed to just be “uncles” to the children, but eventually the moms wanted the boys to know who their fathers were. “We had to do DNA testing to find out who was whose,” says Koehler. “The boys were really excited for about five minutes and then they wanted to go outside and play games.” Koehler began volunteering in a program that provided support buddies to men living with HIV and AIDS. He watched a man die and then watched the man’s partner get thrown out of the home they shared. Though the house was owned by the man who died, there was no will to ensure his partner could keep it. “The family came in, took everything, kicked the kid out on the street,” Koehler says.
Afterward, Koehler and Hostetler—who were both healthy at the time—drew up documents specifying what should happen to their assets in case of death. Now, there are academics and organizations helping LGBTQ people make clear, concrete plans for death. In doing so, they’re modeling a better way to prepare for, think about, and embrace death. Sherrill Wayland, who directs operations at the National Resource Center on LGBTQ+ Aging, saw many of their older friends struggle to get the care and support they needed at the end of their lives. “It was really personal for me,” they say. “No one should die alone if they want support.” In their role, Wayland has helped create a series of guides to help LGBTQ people plan for serious illness and caregiving.
Sage USA, an advocacy organization for LGBTQ elders, is also pushing for cultural competency training in long-term care facilities. Compassion & Choices, a group that champions the importance of end-of-life planning, has LGBTQ-focused programs like Pride in a Box, which encourages people to take time during Pride Month to talk about how they want to die. These conversations can seem at once ghoulish and mundane: Do you want to be cremated or buried? Do you desire an open- or closed-casket funeral? What clothes would you like to be buried in? What pronouns should appear in your obituary? “LGBTQ people have realized that if we don’t make a plan, things are probably going to go sideways because other people won’t be looking out for us,” says Acquaviva, who helped develop an LGBTQ-inclusive curriculum for The Conversation Project, an organization that helps people discuss their end-of-life plans. “We have to figure out ways to look out for ourselves.”
Charles with son Spencer, age 28.
Because Hostetler had an amalgamation of chosen and genetic family members, he wanted to make sure everyone was on the same page. He organized his will and called his daughters, his ex-wife, the sons, and their mothers. Hostetler was adamant that he wanted to die at home, so he arranged for hospice care. Instead of hiding his identity, Hostetler informed his health care providers that he was gay and that Koehler was his life partner and caregiver. Koehler says that without exception, every single person was supportive and respectful of their relationship.
In the final two weeks of Hostetler’s life, a hospice nurse suggested setting up his bed in the living room so he wouldn’t be alone. His eldest daughter and her family moved in and traded shifts with Koehler and a hospice nurse. His nurses provided massage and music therapy to make him more comfortable. Hostetler was sedated, hovering at the edge of their everyday routines. Finally, on New Year’s Eve 2010, his daughters and his life partner surrounded his bed and held hands as he took his last breaths. Koehler checked his pulse and said, “I think he’s gone.” Koehler describes the whole experience as peaceful. Having months to accept that Hostetler would die helped make the process less traumatizing for everyone.
Left: Charles (left), age 45, with Dennis (right), age 55, holding their sons Connor (left), age 2, and Spencer (right), age 4, on Christmas 1997. Center: Charles, age 45, with Dennis, age 55. Right: Jocelyn, Dennis’ daughter from a previous 12-year marriage, with her children.
“In a strange way it was both sad and yet somehow comforting at the same time knowing that he died being surrounded by us at his home, just as he wished,” Koehler says. But not all LGBTQ patients receive such affirming care: A 2020 survey published in the Journal of Palliative Medicine found that nearly one-quarter of health care providers witnessed discrimination against LGBTQ patients in palliative care settings and nearly 30% of the respondents reported witnessing discrimination against LGBTQ spouses, partners, or people whom the patient had legally designated to make care decisions for them.
Preparing for the Inevitable End
Experts like Acquaviva and Wayland say that health providers need to take time to understand the barriers that create health inequities in the LGBTQ community and undergo cultural competency training to avoid making the same mistakes. Because LGBTQ families are more likely to be families of choice, providers need to be sensitive to those dynamics and spend time learning who is part of a patient’s support system instead of automatically deferring to genetic family members. There are also simple ways to acknowledge the range of human gender and sexual identities, such as including nongendered pronouns on forms, asking for patients’ pronouns and using them correctly, and including LGBTQ-affirming language in nondiscrimination clauses.
Those steps may seem like small gestures, but they’re important signals. If an organization doesn’t commit to doing something as minimal as adding inclusive language to a statement, says Acquaviva, then it’s reasonable to expect that they won’t treat a patient with the dignity they deserve. Acquaviva has both written about and experienced this discrimination: She and her wife talked extensively about their plans when her wife was diagnosed with ovarian cancer in 2019 and ultimately decided to use hospice care to help her die comfortably. But then they discovered that none of the hospice services near their Virginia home included LGBTQ-affirming language in their nondiscrimination statements. Despite the fact that both women were experts in end-of-life care, they faced death without the support of hospice because they felt they wouldn’t receive respectful care. Acquaviva was the one managing her wife’s pain meds, bathing her, and making sure she didn’t get bed sores.
Charles shares drinks with members of his local PrimeTimers social group, of which he was founding president, on the back patio of Just John Night Club in St. Louis, Missouri.
There’s no single definition of a good death. Not everyone knows when their death is coming and not every death can follow a specific plan, but every death can be expected and discussed ahead of time. “We all want to imagine we’re gonna live a really long time, and it’s human nature to imagine that everything’s gonna be OK, but the reality is 100% of us are going to die,” Acquaviva says. Have the conversation—even if it’s awkward, uncomfortable, and hard.
Now, more than a decade later, Koehler remains an active retiree. He’s single but he isn’t alone. He’s the vice president of PrimeTimers Worldwide, a large social group for older gay, bisexual, and transgender men. On Sundays he catches up with Hostetler’s daughters and their mom over Zoom, and when the younger daughter needed surgery, he helped with child care. “Having grandkids is something that I never dreamed of as even a remote possibility,” he says. “It never even crossed my mind at all.” His documents are in order and he encourages his peers to make end-of-life plans. But while he’s still here, he’s keeping busy, tending to the life and family he and Hostetler built together.
The story of dying in the 21st century is a story of paradox. Covid-19 has meant people have died the ultimate medicalised deaths, often alone in hospitals with little communication with their families. But in other settings, including in some lower income countries, many people remain undertreated, dying of preventable conditions and without access to basic pain relief. The unbalanced and contradictory picture of death and dying is the basis for the Lancet Commission on the Value of Death. Drawing on multidisciplinary perspectives from around the globe, the Commissioners argue that death and life are bound together: without death there would be no life. The Commission proposes a new vision for death and dying, with greater community involvement alongside health and social care services, and increased bereavement support.
Who would you call to bring you chicken soup? For many LGBTQ seniors who are alone, that’s no easy question.
A person holds an umbrella in the rainbow flag colors in the annual Gay Pride Parade, part of the Durban Pride Festival, on June 29, 2019, in Durban, South Africa.
By Steven Petrow
Who would bring you chicken soup if you were sick? For most people of a certain age, that’s easy — a spouse or an adult child would step up.
For many LGBTQ people, however, it’s not a simple question at all.
“Many [would] have to think really hard about this,” said Imani Woody, an academic and community advocate who retired from AARP to start an organization serving LGBTQ seniors. She said chicken soup is a stand-in for having a social support system, which many of us need.
“Build your village right now,” Woody said.
A few years ago, I would have said that my then-husband would be my primary caregiver if I became ill or disabled. I’d have done the same for him. Now I’m 65 and divorced, and this issue — who can I call on? — is top of mind for me.
It’s also a serious concern for many LGBTQ people I know, whether single or partnered. Take one friend of mine, for example, who is 60 and a single gay man. He took care of his dying father last year (as I’d done four years earlier with my parents). During his dad’s lengthy illness, we talked about two questions that terrify us (and I don’t use that word lightly): “Who will take care of us when we need help?” “Where will we go when we can no longer take care of ourselves?”
Of course, aging is an equal opportunity challenge for straight and queer people alike. But in interviews with more than four dozen LGBTQ people, singled and partnered, I heard repeatedly about the anxieties faced by queer elders.
SAGE/Advocacy & Services for LGBT Elders, the National Resource Center on LGBTQ+ Aging, and Healthypeople.gov document the health challenges LGBTQ people face. We’re twice as likely as our straight counterparts to be single and live alone, which means more likely to be isolated and lonely. We’re four times less likely to have children. We’re more likely to face poverty and homelessness, and to have poor physical and mental health. Many of us report delaying or avoiding necessary medical care because we face discrimination or mistreatment by health-care providers. If you’re queer and trans or a person of color, these disparities are heightened further. (There are about 3 million LGBTQ people 50 and older.)
“It’s a very serious challenge for many LGBTQ older people,” said Michael Adams, chief executive of SAGE. “The harsh reality is that there just aren’t as many opportunities for older LGBTQ folks when it comes to creating, building and maintaining social connections. … We’re lacking the personal connections that often come with traditional family structures.”
In part, that’s because LGBTQ people have often found themselves rejected by family, friends and community in their younger years because of their sexual orientation or gender identity. To boot, we could not legally marry until 2015, when the Supreme Court ruled in favor of marriage equality. But even married queer folks can end up alone after a divorce or death, which often brings different challenges than those faced by straight people facing the same life-changing events.
An 80-year-old lesbian put it to me this way: For straight people, “If you were to go into a nursing home, you would not have to worry that people taking care of you did not approve of your orientation, or that the facility would not take you because they were a ‘religious’ community. These are real issues for the queer community.”
Another friend tells me he has no plans for the future except a guest room and a second bathroom. And another said he hopes by the time he needs care, there will be an LGBTQ senior community in his city. “Otherwise, I have nothing,” he said.
A former colleague of mine, a lesbian, told me she worries about the cost of senior living: “I dread it all. I won’t have any dough then, so it’s really up to fate.”
Senior living communities, which provide support for the aging, can be less than welcoming to those who are LGBTQ. Staff, some of whom have traditional views on sexuality, gender identity and marriage, also pose challenges to LGBTQ elders since many facilities lack the training and policies to discourage discrimination, which can lead to harassment, Adams said.
Patrick Mizelle, who lived in Georgia with his husband, told Kaiser Health News several years ago that he worried about how “churchy” or faith-based their local options seemed, and feared they would not be accepted as a couple. “Have I come this far only to go back in the closet and pretend we are brothers?” he asked.
Rather than take that risk, they moved across the country to a queer-friendly senior living complex in Portland, Ore. They are among the lucky ones in that they could afford both the move and the cost of this domestic situation.
How do you find a welcoming LGBTQ senior living arrangement? SAGE publishes a comprehensive list of long-term care facilities (organized by state and city, along with level of care) that it has found to be welcoming.
“We also have resources about the kinds of questions that a consumer can ask to figure out if a provider is paying attention to the steps that need to be taken to become more welcoming to LGBTQ older adults,” Adams said.
SAGE also offers training to staff members at facilities that provide elder care, and has partnered with the Human Rights Campaign, the national LGBTQ lobbying and advocacy organization, in launching the Long-Term Care Equality Index, which sets out best practices to help make these facilities welcoming to the LGBTQ community. More than 75 facilities have made pledges to abide by these best practices. AARP also provides a list of affordable LGBTQ-welcoming senior housing.
What else can LGBTQ people do to find connection, to find a tribe? Many suggest the importance of developing intergenerational friendships early on in life, even as early as your 30s and 40s. Elders can impart wisdom and experience to younger LGBTQ people, who can provide help in return; as decades pass, the young ones become the elders.
The Harvard Study of Adult Development, which began tracking more than 238 men (regardless of sexual orientation) in 1938 and continues to this day, has reported consistently that relationships are the critical ingredient in well-being, particularly as we age.
Put simply, the more connected we are, the more likely we are to be healthy and happy. To paraphrase Imani Woody: Start building those bridges.
A diagnosis of dementia, a category of diseases affecting memory and thinking that includes Alzheimer’s disease, can feel overwhelming and upsetting. You might worry that you will lose control over your life and ability to make your own decisions. Fortunately, receiving a diagnosis of dementia or Alzheimer’s does not mean that you cannot execute legal documents or make decisions about plans for your future finances and health care.
People with dementia can execute legal documents to plan for their futures when they have the mental state — or capacity — to do so. Capacity refers to your ability to understand the contents of a legal document, such as a will, and know the consequences of executing it. If you know who your family is, understand your assets, and comprehend your will, you can execute a valid will and plan for the distribution of your estate after your death, provided you understand what you are signing and its effect on your life.
The following can help you in planning where you wish to live, what kind of care you receive, and what happens to your assets if you get severely ill or pass away.
Health Care Power of Attorney
Consider appointing a health care agent to make medical decisions if you become incapacitated. You can name a health care agent using a health care power of attorney, sometimes called a medical power of attorney or a durable power of attorney for health care. Your health care agent can make medical choices if you can no longer do so.
Picking someone you trust, such as a responsible child or spouse, or another family member, can give you peace of mind that they will have your best interests and desires in mind when they make decisions. For instance, dementia patients who prefer receiving in-home care can express this wish to their agent.
In the power of attorney document, you can also state your intentions regarding health care and limit your agent’s capabilities if you wish.
Living Will
For an added layer of protection, you can also draft an advance directive or living will that states your desires regarding medical treatment if you are unable to communicate with your physician. Your living will can express whether you want treatment to prolong your life.
Financial Power of Attorney
Using a financial power of attorney, known as a power of attorney for property, you can select a trusted individual to handle your financial affairs if your disease progresses such that you can no longer make financial decisions. Your financial agent can manage your money and pay bills on your behalf, but they cannot use your money for themselves.
In the power of attorney for property document, you can restrict your agent’s powers. For instance, a person might specify that the agent can manage personal accounts, but not sell the family home.
Long-Term Care Planning
After a dementia diagnosis, consider whether you would like to receive long-term care at home or in a facility, and whether you intend to apply for Medicaid or long-term care insurance. If you want to apply for Medicaid, you might need to prepare your finances to become eligible.
Last Will and Testament
Making a last will and testament, also known as a will, can help ensure your assets go to your family and friends when you pass away. You can determine how much of your money each beneficiary will receive and make bequests to individuals. For example, if you have items of sentimental value, you can leave them to specific people. Without a will, your assets will transfer to your heirs according to the law in your state.
