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.
Claire Romeijn was 29 when her doctor gave her life-altering news.
Claire says she didn’t want to overload her daughters with ‘disastrous news’ when she found out she was terminally ill.
By Tahnee Jash
She had been experiencing severe abdominal pain three weeks after having a baby, but it wasn’t until her daughter was eight months old that she decided to find out what was wrong.
“When I finally had a colonoscopy and endoscopy, they couldn’t get the cameras through because the tumour was so large,” Claire says.
“It was a big shock to everybody.”
Following a diagnosis of bowel cancer, she underwent surgery and chemotherapy and for a period was cancer free — until she was back to see the doctor again.
“I got the second diagnosis that it was back, and I was now stage four,” Claire, who is now 33, says.
Without a cure and the cancer spreading to other organs in her body, Claire is now going through her last chemotherapy treatment available.
As Claire was still processing the news, she knew she had to figure out how to tell her five daughters — in particular her eldest, who was 10.
She says she didn’t want to overload anyone with “disastrous devastating news” around being terminally ill.
So, the Sunday after receiving her diagnosis, Claire made fresh pancakes and told her children gently over breakfast that she was starting chemotherapy again.
“I said, ‘Mummy’s going to have to do chemo again’.
“My oldest was at the end of the table and she was very, very quiet, just processing it. [Then] she says, ‘Does that mean your cancer’s back?’ And I said, ‘Yes’.”
Claire says it’s been especially hard for her children and partner to process her diagnosis.
“[My eight-year-old] was crying [one] night and I said, ‘What’s wrong? And she said, ‘I don’t want a new mummy’,” Claire says.
“I said, ‘I will always be your mummy, that’s never going to change’.”
Clinical psychologist and director of the Death Literacy Institute, Kerrie Noonan, has spent her career helping people feel more comfortable talking about death.
She says it can be hard to explain it to children, especially when they’re young, but her advice is to talk openly.
“For young children, grasping death as a permanent thing is an important part of their grief,” Dr Noonan says.
Religion or spirituality can be a source of comfort when it comes to grief but helping children grasp the physical process is just as important.
“Often our inclination is to say to kids, ‘When I die, I’m going to heaven’,” Dr Noonan says.
“It’s not concrete enough for a young child to kind of understand.”
“So, [instead you might say], ‘When I die, my body stops working, I won’t have any pain anymore and my body will be buried’,” she says.
Claire’s still trying to work out the best way — and time — to tell her kids she’s terminally ill and says it’s been an overwhelming experience preparing her family for her death.
One thing that is helping her is creating special keepsakes for her daughters to cherish.
“My big girls will remember, I know they will but the five, three and one-year-old is a different story of what memories they’ll hold on to,” she says.
“I want to write a letter to them all individually, about how much I love them [and] funny little things their dad might not remember.
“I want to write a list of ‘Mummy’s advice’, for when they are older, but I’ll definitely be putting the aunties on the ‘period talk’ because I don’t trust their father,” she says, laughing.
Talking about death with your partner
Claire also worries about her husband and how he’s coping with all the changes.
“He’s not someone to dwell on the negative, so it’s really hard to get him to open up,” she says.
“We’ve had moments where we will grieve together, [but] he doesn’t talk about it, not even with mates.”
Avoiding discussion is a common way some people cope, but Dr Noonan says the best way through it is trying to being open with each other.
“I guess the first thing is to acknowledge just how bloody hard it is,” Dr Noonan says.
“[We think] ‘Oh she’s got enough to worry about, I can’t talk to her about how scared I am about the future, so I’ll just suck it up and keep going and same [goes] the other way’.
“Everyone’s protecting everyone, but no one’s actually talking and that can be one of the biggest barriers.”
After going through intensive treatments like chemotherapy, intimacy is often the last thing on a couple’s mind, but Dr Noonan says it could provide the comfort and sense of relief that the relationship is longing for.
“People may not want to feel like having sex as such, but they may really still have that great need to touch, connect and have comfort from that touching and connecting,” she says.
Claire and her husband find it hard to talk about the future, but something that’s helping them is focusing on the present.
“We focus on making memories,” she says.
“My husband gets through it by planning extravagant trips in his mind … he bought his own calendar to write down where we’re going and put [down] every country.
“[He] is super optimistic and it really kind of keeps me together,” she says.
‘I allow myself to be sad, but I don’t let it overcome me’
Claire’s been given a life expectancy date by her doctor, and she says there are days where she feels anxious about it.
“My oncologist ended my appointment with a ‘you better make holidays this year’ and that’s a real downer but it’s also a reality,” she says.
To help ease some of the anxiety, she takes antidepressants, but it’s her family who help her through those difficult days.
“I allow myself to be sad, but I don’t let it overcome me,” she says.
“I’ve got ive girls who need me, and they are the ones who make me get out of bed and try to keep [life] as normal as possible.”
The end of life is often invisible, shut away in nursing homes or intensive-care units. There’s another way.
By Sara Harrison
My grandfather liked to stage a scene. He moved to California in 1935 to work in Hollywood, becoming a director for B-list movies and TV shows like “77 Sunset Strip” and “The Mickey Mouse Club.” Despite his work, he didn’t particularly care for film and didn’t own a TV until 1964. Even then he mostly used it to watch Dodgers games. What he liked was the process of making a show: reworking the script, setting the angles, being in charge.
Like so many in his generation, he was a multipack-a-day smoker; a Philip Morris cigarette hangs from his lower lip in nearly every photograph I have of him. He lived with emphysema for decades, maintaining his last sliver of healthy lung tissue through a combination of lap swimming, walking, Scotch and luck. But at 97 years old, he had flagging energy. No longer able to walk from his bedroom to the kitchen without stopping to catch his breath, he rigged up an oxygen tank that allowed him to roam the length of his home. Tubes followed him up and down the corridor.
For a brief moment, at my grandfather’s party, I got to slow down the inevitable, to be with the people I grew up with, in the place we held sacred and dear.
Death is, famously, one of the few certainties in this life. It’s also a reality that doctors, patients and families tend to avoid. In a recent report, The Lancet Commission on the Value of Death notes that today death “is not so much denied but invisible.” At the end of life, people are often alone, shut away in nursing homes or intensive-care units, insulating most of us from the sounds, smells and look of mortality.
Not so for my grandfather. Though he didn’t rush headlong into the hereafter, he didn’t want to wait for his faculties to fail one by one. He wanted to die with a modicum of independence, with hospice care.
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On an unseasonably warm Los Angeles day in May 2011, a cast of characters — his children, grandchildren and friends — assembled at his home, ready to play their part in the last act of his life. I was a college junior at the time, required to read Coleridge’s “Kubla Khan” for class that week. I found it in an English poetry collection of my grandfather’s and read sitting on a sagging couch, intermittently distracted by family members who, one by one, came in and asked what I was doing. They’d smile and recite the opening lines: “In Xanadu did Kubla Khan/A stately pleasure-dome decree:/Where Alph, the sacred river, ran/Through caverns measureless to man/Down to a sunless sea.”
What ensued was a five-day tropical vacation. My grandfather couldn’t stand the air-conditioning, so we wore bathing suits most of the day and paged languidly through withered photo albums. I floated in the sacred waters of my childhood — the swimming pool — and harvested lemons from the prolific backyard tree. When 6 o’clock rolled around, my grandfather would ask, “Who’s pouring me a Scotch?” Cocktails, cheese, olives and stale water crackers appeared. We listened to classical records and told stories and took turns cooking dinner. But just as Coleridge’s vision faded, interrupted by a person from Porlock, our reverie was splintered by closed-door meetings with hospice nurses and conversations with doctors, who could attest my grandfather had a sound mind and a failing body and was eligible for end-of-life care.
However perverse it may sound, that death party — as my sister and I came to call those five days — remains one of the most profound experiences of my life. For a brief moment, at my grandfather’s party, I got to slow down the inevitable, to be with the people I grew up with, in the place we held sacred and dear. Amid that joyful reverie, I had time to sober up and confront the simple reality that my grandfather wanted to die and that everything would change. I saw that the man who had commanded movie sets and TV crews now rarely left his house. That his sweaters hung loose on his stooped shoulders, and that his rosebushes withered with neglect. That things were already changing, whether I was ready for it or not.
People often talk about death as if it’s the worst thing that can happen to someone. As if it’s something that must be avoided at all costs. Better to age, however painfully, however diminished, than to ever admit that we are mortal. But at the end of a long, full life, my grandfather was done. He died with power and agency, love and support. To have that death, he had to acknowledge and embrace his mortality. At our death party, he gave his family a chance to accept that fact, too.
More than a decade later, my parents are discussing their own plans, debating whether to be cremated or buried. My dad calls to talk about what I want. Would I visit their grave sites? Would that be meaningful? There are no monuments for my grandfather, whose body was eventually cremated and scattered at Evergreen Cemetery in Los Angeles. When I miss him most — when I married, or when my nieces were born — I pay homage with a cocktail, a toast and a memory. I think about one evening during the party when, as the room hummed with humans, he held my head in his hands. A few days later, he had his usual Scotch, went to bed and died. In my memory, this moment — the moment when we looked at each other, when we said I love you and when we let each other go — lives on. It comforts me when I pass through caverns of sadness and am marooned in sunless seas of grief. I tell my parents I don’t need them to have a grave site.
Hospice nurse Raul Diaz checks Aaron Martinez’s vital signs. Despite his mom’s seemingly healthy pregnancy, Aaron was born with most of his brain cells dead, the result of two strokes and a massive bleed that occurred in utero.
When you first meet 17-month-old Aaron Martinez, it’s not obvious that something is catastrophically wrong.
What you see is a beautiful little boy with smooth, lustrous skin, an abundance of glossy brown hair, and a disarming smile. What you hear are coos and cries that don’t immediately signal anything is horribly awry.
But his parents, Adriana Pinedo and Hector Martinez, know the truth painfully well.
Although Adriana’s doctors and midwife had described the pregnancy as “perfect” for all nine months, Aaron was born with most of his brain cells dead, the result of two strokes and a massive bleed he sustained while in utero.
Doctors aren’t sure what caused the anomalies that left Aaron with virtually no cognitive function or physical mobility. His voluminous hair hides a head whose circumference is too small for his age. He has epilepsy that triggers multiple seizures each day, and his smile is not always what it seems. “It could be a smile; it could be a seizure,” his mother said.
Shortly after Aaron was born, doctors told Adriana, 34, and Hector, 35, there was no hope and they should “let nature take its course.” They would learn months later that the doctors had not expected the boy to live more than five days. It was on Day 5 that his parents put him in home hospice care, an arrangement that has continued into his second year of life.
The family gets weekly visits from hospice nurses, therapists, social workers, and a chaplain in the cramped one-bedroom apartment they rent from the people who live in the main house on the same lot on a quiet residential street in this Inland Empire city.
Adriana Pinedo holds her son, Aaron Martinez, during a visit with hospice nurses Raul Diaz (left) and Shannon Stiles. Pinedo describes the weekly hospice visits from nurses, therapists, social workers, and a chaplain as “our lifeline.”
One of the main criteria for hospice care, established by Medicare largely for seniors but also applied to children, is a diagnosis of six months or less to live. Yet over the course of 17 months, Aaron’s medical team has repeatedly recertified his hospice eligibility.
Under a provision of the 2010 Affordable Care Act, children enrolled in Medicaid or the Children’s Health Insurance Program are allowed, unlike adults, to be in hospice while continuing to receive curative or life-extending care. Commercial insurers are not required to cover this “concurrent care,” but many now do.
More than a decade since its inception, concurrent care is widely credited with improving the quality of life for many terminally ill children, easing stress on the family and, in some cases, sustaining hope for a cure. But the arrangement can contribute to a painful dilemma for parents like Adriana and Hector, who are torn between their fierce commitment to their son and the futility of knowing that his condition leaves him with no future worth hoping for.
“We could lose a life, but if he continues to live this way, we’ll lose three,” said Adriana. “There’s no quality of life for him or for us.”
Aaron’s doctors now say he could conceivably live for years. His body hasn’t stopped growing since he was born. He’s in the 96th percentile for height for his age, and his weight is about average.
His parents have talked about “graduating” him from hospice. But he is never stable for long, and they welcome the visits from their hospice team. The seizures, sometimes 30 a day, are a persistent assault on his brain and, as he grows, the medications intended to control them must be changed or the doses recalibrated. He is at continual risk of gastrointestinal problems and potentially deadly fluid buildup in his lungs.
Adriana, who works from home for a nonprofit public health organization, spends much of her time with Aaron, while Hector works as a landscaper. She has chosen to live in the moment, she said, because otherwise her mind wanders to a future in which either “he could die — or he won’t, and I’ll end up changing the diapers of a 40-year-old man.” Either of those, she said, “are going to suck.”
While cancer is one of the major illnesses afflicting children in hospice, many others, like Aaron, have rare congenital defects, severe neurological impairments, or uncommon metabolic deficiencies.
“We have diseases that families tell us are one of 10 cases in the world,” said Dr. Glen Komatsu, medical director of Torrance-based TrinityKids Care, which provides home hospice services to Aaron and more than 70 other kids in Los Angeles and Orange counties.
Aaron Martinez sleeps in the bedroom he shares with his mother and father in Pomona, California.
In the years leading up to the ACA’s implementation, pediatric health advocates lobbied hard for the concurrent care provision. Without the possibility of life-extending care or hope for a cure, many parents refused to put their terminally ill kids in hospice, thinking it was tantamount to giving up on them. That meant the whole family missed out on the support hospice can provide, not just pain relief and comfort for the dying child, but emotional and spiritual care for parents and siblings under extreme duress.
TrinityKids Care, run by the large national Catholic health system Providence, doesn’t just send nurses, social workers, and chaplains into homes. For patients able to participate, and their siblings, it also offers art and science projects, exercise classes, movies, and music. During the pandemic, these activities have been conducted via Zoom, and volunteers deliver needed supplies to the children’s homes.
The ability to get treatments that prolong their lives is a major reason children in concurrent care are more likely than adults to outlive the six-months-to-live diagnosis required for hospice.
“Concurrent care, by its very intention, very clearly is going to extend their lives, and by extending their lives they’re no longer going to be hospice-eligible if you use the six-month life expectancy criteria,” said Dr. David Steinhorn, a pediatric intensive care physician in Virginia, who has helped develop numerous children’s hospice programs across the U.S.
Another factor is that kids, even sick ones, are simply more robust than many older people.
“Sick kids are often otherwise healthy, except for one organ,” said Dr. Debra Lotstein, chief of the division of comfort and palliative care at Children’s Hospital Los Angeles. “They may have cancer in their body, but their hearts are good and their lungs are good, compared to a 90-year-old who at baseline is just not as resilient.”
All of Aaron Martinez’s vital organs, except for his brain, seem to be working. “There have been times when we’ve brought him in, and the nurse looks at the chart and looks at him, and she can’t believe it’s that child,” said his father, Hector.
Hospice nurse Shannon Stiles gently administers Aaron Martinez an oral medication. Many hospice organizations are reluctant to take children, whose medical and emotional needs are often intense and complex.
When kids live past the six-month life expectancy, they must be recertified to stay in hospice. In many cases, Steinhorn said, he is willing to recertify his pediatric patients indefinitely.
Even with doctors advocating for them, it’s not always easy for children to get into hospice care. Most hospices care primarily for adults and are reluctant to take kids.
“The hospice will say, ‘We don’t have the capacity to treat children. Our nurses aren’t trained. It’s different. We just can’t do it,’” said Lori Butterworth, co-founder of the Children’s Hospice and Palliative Care Coalition of California in Watsonville. “The other reason is not wanting to, because it’s existentially devastating and sad and hard.”
Finances also play a role. Home hospice care is paid at a per diem rate set by Medicare — slightly over $200 a day for the first two months, about $161 a day after that — and it is typically the same for kids and adults. Children, particularly those with rare conditions, often require more intensive and innovative care, so the per diem doesn’t stretch as far.
The concurrent care provision has made taking pediatric patients more viable for hospice organizations, Steinhorn and others said. Under the ACA, many of the expenses for certain medications and medical services can be shifted to the patient’s primary insurance, leaving hospices responsible for pain relief and comfort care.
Even so, the relatively small number of kids who die each year from protracted ailments hardly makes pediatric hospice an appealing line of business in an industry craving growth, especially one in which private equity investors are active and seeking a big payday.
In California, only 21 of 1,336 hospices reported having a specialized pediatric hospice program, and 59 said they served at least one patient under age 21, according to an analysis of 2020 state data by Cordt Kassner, CEO of Hospice Analytics in Colorado Springs, Colorado.
Hospice providers that do cater to children often face a more basic challenge: Even with the possibility of concurrent care, many parents still equate hospice with acceptance of death. That was the case initially for Matt and Reese Sonnen, Los Angeles residents whose daughter, Layla, was born with a seizure disorder that had no name: Her brain had simply failed to develop in the womb, and an MRI showed “fluid taking up space where the brain wasn’t,” her mother said.
When Layla’s team first mentioned hospice, “I was in the car on my phone, and I almost crashed the car,” Reese recalled. “The first thought that came to mind was, ‘It is just the end,’ but we felt she was nowhere near it, because she was strong, she was mighty. She was my little girl. She was going to get through this.”
About three months later, as Layla’s nervous system deteriorated, causing her to writhe in pain, her parents agreed to enroll her in hospice with TrinityKids Care. She died weeks later, not long after her 2nd birthday. She was in her mother’s arms, with Matt close by.
“All of a sudden, Layla breathed out a big rush of air. The nurse looked at me and said, ‘That was her last breath.’ I was literally breathing in her last breath,” Reese recounted. “I never wanted to breathe again, because now I felt I had her in my lungs. Don’t make me laugh, don’t make me exhale.”
Layla’s parents have no regrets about their decision to put her in hospice. “It was the absolute right decision, and in hindsight we should have done it sooner,” Matt said. “She was suffering, and we had blinders on.”
Adriana Pinedo spends much of her day alone with her son. She has chosen to live in the moment, she says, because otherwise her mind wanders to a future in which either “he could die — or he won’t, and I’ll end up changing the diapers of a 40-year-old man.”
Adriana Pinedo said she is “infinitely grateful” for hospice, despite the heartache of Aaron’s condition. Sometimes the social worker will stop by, she said, just to say hello and drop off a latte, a small gesture that can feel very uplifting. “They’ve been our lifeline,” she said.
Adriana talks about a friend of hers with a healthy baby, also named Aaron, who is pregnant with her second child. “All the stuff that was on our list, they’re living. And I love them dearly,” Adriana said. “But it’s almost hard to look, because it’s like looking at the stuff that you didn’t get. It’s like Christmas Day, staring through the window at the neighbor’s house, and you’re sitting there in the cold.”
Yet she seems palpably torn between that bleak remorse and the unconditional love parents feel toward their children. At one point, Adriana interrupted herself midsentence and turned to her son, who was in Hector’s arms: “Yes, Papi, you are so stinking cute, and you are still my dream come true.”
The end of life doesn’t need to be filled with pain, frustration, guilt and clashing family dynamics.
My grandpa was dying of bone cancer, an especially gruesome way to go. He’d shriveled down to 85 pounds. The bathtub was one of the few things that brought him comfort.
So there we sat in his final days as he talked about his life and the things he cared about. He was riddled with pain, yet cracking jokes right and left. We spent hours laughing out loud. It was his way of telling me that he was at peace. And it was one of the most beautiful experiences I’ve had as a human being.
After 30 years as a nurse and chief executive of a senior care company that has served over a million lives in the community and within senior housing, I’ve experienced more than my share of death. I learned that the end of life needn’t be filled with pain and frustration, with guilt and clashing family dynamics. It can be a time to cherish the spark in a loved one’s eye, their spirit and wisdom. And that we can help them die in the most positive way possible.
Your wishes codified
I’ve seen it often through the years. A terminal illness arrives. The dying person’s last wishes aren’t in place. Now tough decisions need to be made in a moment of crisis. Everyone in the family has their own opinion, freighted by our cultural fear of death. I’ve seen it get ugly, with families torn apart. Our loved one doesn’t get the death she wants.
I’ve also seen the opposite, when death is peaceful and lovely. The difference is usually a POLST–portable medical orders — an end of life plan conceived with your doctor that travels with you from hospital to nursing home, or wherever your journey takes you. The idea is to outline your wishes before crisis hits, rather than leaving it to group decisions in times of trauma.
You can take a curative route, signifying your willingness to undergo any treatment as long as there’s a shot. You can take a palliative path, which focuses more on bringing relief and comfort to your final days. Or you can choose a mixture of both, dictating whether you want such things as a feeding tube, a ventilator, or to even be taken to a hospital at all.
The POLST informs family and facilities of exactly what you want. When those final days arrive and family gathers at bedside, there’s no need to speculate on medical choices. Everything that’s important is already in place.
Hospice
Chances are that a loved one with a terminal condition is already eligible for hospice care, offered free to Medicare recipients who’ve been certified by a doctor as having six or less months to live. The program was conceived by the federal government after realizing that people were spending most of their money during the last two years of life. Their savings were being drained by extraordinary measures that didn’t really help, rather than concentrating on the supportive care they truly needed.
Instead of sending you to a hospital, hospice comes to you, be it your home of 40 years, or your apartment in an assisted living facility, or even a relative’s house. It’s all about comfort. You’ll be cared for by experts in death and dying whose mission is to provide the least restrictive experience possible.
Nurses, aides, and physicians work within your plan. They can bring you a hospital bed to help you sleep or equipment to help you breathe. There’s spiritual care, music therapy, visiting aides, volunteers, and bereavement coverage for family. There’s also a pain management plan, with the goal of making the end of life as serene as possible.
The most peaceful deaths I’ve seen are when people die in their own homes on their own terms. The Medicare hospice program helps make that happen, especially when it’s used sooner than the final days of life.
This doesn’t mean you can’t turn back. We’re humans. We get scared. You can leave hospice whenever you want for one last shot with chemo and radiation. The larger point is that you and your family are educated early, preparing emotionally, mentally, and spiritually. And that someone will be with you the entire journey, holding mom’s hand — or your hand if that’s what you need — to help you make the most of those final days.
I know about trauma. My sister died in a car crash at age 43, leaving behind two kids. It was a horrific experience, but we’ve chosen to make the most of it.
Every year we take a family vacation. And every year we set aside time to celebrate my sister. We talk about our feelings and frustrations, our love and loss. It’s not always a glorious celebration. But it’s helpful.
Circumstances didn’t allow us to prepare for her death. So we’re trying to make the most of it in retrospect.
Like it or not, no one on this planet is getting out alive. Though our finish line may be the same, the ways we get there — and the methods we choose to deal with the aftermath — are often up to us. A solid plan for the final stages will help both us and our survivors. Start talking now with your loved ones. The more we do, the less we fear the inevitable. What you discover may provide the means for not just an end, but a magnificent one.
David Meyers has placed his lucky bamboo in a living room window. He has found comfort in caring for the plant since his brain cancer diagnosis.
Watering the bamboo, as small an act as it was, connected me to a core part of my old identity and taught me I could still be a caregiver
by David Meyers
My wife and I usually don’t keep houseplants. Anything in pots gets either overwatered or underwatered. After my diagnosis with glioblastoma — a terminal brain cancer with a prognosis of little more than a year to live — I loved the idea of having something new and green and alive around us.
When my friend Mitch gave me a lucky bamboo plant in a deep-green pottery bowl with three pencil-size stalks braided together, we decided to place the plant in the living room window across from the couch where I spent much of each day.
I smiled when I looked over the rim of the mug of coffee Hannah brought me each morning.
I told Hannah I wanted to care for the plant myself. When it didn’t immediately turn yellow or brown or lose all of its leaves, I was pleasantly surprised.
Tending to the plant gave me a sense of accomplishment at a time when I sometimes felt useless. Glioblastoma limited my ability to walk, and the treatment left me fatigued, making it hard for me to accomplish everyday tasks.
Being dependable again
As a physician, I was used to being the one who provided care, not the one who received it. Since my diagnosis in August 2018, far too often, it seemed, I had to rely on help from other people. The enormous change left me feeling adrift and unsettled. Watering the bamboo, as small an act as it was, connected me to a core part of my old identity and taught me I could still be a caregiver. Plants and people could still depend on me.
Over the next few months, I recovered from surgery and completed radiation and the first round of chemotherapy. Even after I returned to work, I continued to care for the plant. Soon, it had nearly doubled in height and its leaves were shiny and lush. Both the tree and I were thriving.
Then, mysteriously, it began to show signs of stress. I increased my watering, then decreased it. I nestled coffee grounds into the soil. I fed it commercial plant food. No matter what I did, the leaves kept browning and dropping to the floor. I grew more and more frustrated and uneasy.
“I can’t even care for a simple plant!” I yelled. “I’m failing!”
Hannah reminded me that we’d seen houseplants die before. She asked me why I was getting so worked up about this particular one.
“If my lucky bamboo dies,” I blurted out, “I might die, too!”<
I couldn’t shake the feeling that the plant had become a symbol of my own precarious health.
Solace and control
Identifying with the green and growing plant had offered me solace. Now that the tree was struggling, I felt increasingly fearful. Its shriveling leaves, I worried, might signal the recurrence of my brain tumor.
I realized I had wrongly connected my careful nurturing of the plant — something over which I had at least some control — with my own survival — something over which I had no control.
When my tumor inevitably returned, it would not be because of any failure on my part — not because I didn’t atomize essential oils in my office, not because I ate sugar occasionally and certainly not because I failed to keep this plant alive.
As my anxiety lessened, I began to pore over online tutorials to help me figure out how to care for my bamboo. Following the instructions, I transplanted the tree to a larger pot, untangling its roots to give it room to grow. When it was back in the sunny window, we both began to thrive again.
Whenever I look at the tree with its braided stalks in its new pot, I make a point to think of Mitch and the other people who have cared for and supported me. If the lucky bamboo outlives me, I hope it will comfort Hannah and remind her that our large community will continue to nurture her after I am gone.
“We are happy and sad to see you again. You looked after Dad years ago.”
I kick myself for not registering the connection, although I only met him during a brief and disastrous stint in hospital.
The complications of cancer treatment had kept mounting until his wife was forced to admit her 85-year-old husband to hospital despite his protestations. His memory had faded and his moods turned volatile. He died in hospital, captious and discontent. I now recall the exhaustion of the family and their guilt-ridden attempts to reconcile with his end.
Some of my work involves seeing cancer patients in their 80s and 90s. The mission of a “geriatric oncology” service is to treat the cancer in the context of the whole patient; while it can be said that all cancer care ought to share this mission, elderly patients are a particularly vulnerable group, with little margin for misadventure. Since two in five people will receive a cancer diagnosis by the age of 85, there have been several occasions when I have treated both husband and wife.
Here are three things that I have learnt from looking after my most elderly patients.
1. Their goals differ
While younger patients compare their treatment to what someone else is having or bring in an overseas recommendation, and (understandably) want to leave no stone unturned, even at the cost of significant toxicity, my oldest patients often have a different goal – to preserve quality of life and maintain independence, even at the cost of survival.
This is especially true when a person is both patient and caregiver.
Co-dependant elders can get by happily in their own home but the moment one stumbles, both are in jeopardy. I frequently meet people who base decisions on combined harm rather than individual good. Interestingly, the people who sometimes struggle to comprehend this are their doctors who are taught to focus on cure.
Many patients who have accompanied a spouse through cancer and end-of-life care have used the opportunity to reflect on their own choices.
I met an octogenarian who declined chemotherapy after caring for his wife who endured recurrent hospitalisation before dying. The same day an elderly woman insisted she would rather “die on the table” than live a life of regrets, as her husband did after he rejected surgery.
One of my most memorable patients was a 90-year-old man who refused an operation because the resulting diarrhoea would involve him negotiating a steep staircase to use the bathroom more frequently. Given the choice of moving out of his beloved home and living longer, he didn’t think twice. I have seldom seen a happier man exit the hospital without a cure.
I also meet overwhelmed patients who relinquish decisions to professionals but, when given the chance (more on this later), most patients will explicitly state what matters to them and make concordant decisions. A long life, necessarily including experiences of sadness and mortality but also inspiration and hope, has given them fortitude, equanimity and perspective. Not everyone wants to live forever, especially if the life is messy.
2. It’s hard on the children
Elderly patients have middle-aged children in the prime of their careers or out of the workforce for important reasons. Apart from tackling a mortgage, navigating workplace tensions and looking after themselves, they are juggling dependent children and vulnerable parents. They are carers, cooks, interpreters and drivers. In a multicultural community the “blessings and curses of filial piety” are on full display, and I worry that I am rarely useful.
Often, there is sibling conflict, usually because one sibling is doing “all the work”. Then there are the expectations of the carer that are hard to meet.
Can I see their parent on their day off? No, the system is inflexible. Can I organise transport? No, there is no funding. Can I avoid issuing last-minute appointments? No, it’s out of my control. Can I expedite aged care services? No, they must join the queue.
I wish the system understood the toll that illness exacts on the whole family.
One of the hardest things is to witness children seeing one parent succumb to cancer, only to repeat the experience. The despair of anticipatory loss is palpable but, if there is one glimmer of hope, it is the benefit of hindsight.
Families who insisted on intensive care at the end of life acknowledge its futility, those who doubted palliative care recall its worth. There is irony in the hope that the next time will be “better”.
3. We must do better
When illness is regarded as an anomaly, the emphasis is on fixing the problem, averting loss and restoring normality.
Every patient deserves optimal care but, when the conversation begins and ends with response rates and survival curves, it is a missed opportunity to respect the whole person, honour their wisdom, longevity and contribution to society and let them contemplate a twilight that contains dignity and comfort.
The power imbalance between doctors and elderly patients is especially pronounced.
I find it confronting to hear these patients lament that they are undertaking onerous surgery or toxic chemotherapy because they don’t have a choice. Some are confounded to learn that they always have a choice, even if doctor and patient agree to disagree. For many people of their generation, advocating for their right to be heard is unthinkable. For those who come from culturally and linguistically diverse backgrounds, this feels impossible.
No doctor who recommends an intervention in good faith wants to hear that a patient feels coerced, so we must choose language that opens the door to shared decision-making and correct the dismal lack of research on the needs of elderly patients. It is an indictment of medicine if the patient who really wants to say no ends up saying yes.
My elderly patient decides against treatment but requests periodic consultation to allow her to change her mind. All things considered, she says her work on Earth is done and she greatly misses her husband. At this, the daughter sheds a tear, but I can already see that this deliberate decision-making is better than what went before.
We won’t cure the patient but we will have honoured the person. A victory for the patient is a victory for medicine.
