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.
Shava Nerad has a terminal illness and intends to end her life by refusing food and water.
Her health-insurance company has denied the services she needs to carry out her plans.
This is Nerad’s story, as told to Jane Ridley.
This as-told-to essay is based on a conversation with Shava Nerad. It has been edited for length and clarity
I once talked a good friend out of suicide.
We were both in our 20s and I asked, “If you could do anything in your life, what would you do?” He said he’d be a roadie and learn to do the lighting for bands. So I told him, “Quit your job, get rid of everything, and go try that.” Then I said, “You can always kill yourself later.”
He took my advice. He became a lighting director for some of the biggest musicians of the 1980s and ’90s.
Now, four decades after that conversation, and at 63, I’m the one who wants to end my life. I’m not pro-suicide, but I am against the idea of a meaningless life — something that I see in my future. If I was handed millions of dollars, it wouldn’t give me back my health. If you can’t do what you love and you are suffering pain all day and every day, maybe it’s time to go.
I need clearance from my health-insurance company before I can properly end my life
But it’s not as simple as that. I am not going to hang myself — it sounds awful. All I want is to go out on my own terms while I can still say goodbye. The best way for me to die is by voluntarily stopping eating and drinking, or VSED.
I believe it’s the most compassionate method of suicide — both for yourself and your family. It’s not painful — you’re hardly even aware toward the end — and your loved ones can be at your bedside if they wish. But before I go ahead with VSED, I have to rip up the red tape and change my advance directive. My health insurance won’t pay for the geriatric psych evaluation that I need to prove that I’m of “sound mind.” If I don’t get the clearance, I can forget about receiving any form of hospice care.
inflammation and narrowing of the blood vessels. My rheumatologist — who told me that it was a progressive illness that could cause organ damage — said that it was potentially fatal. She said that Behcet’s made a stroke worse.
I had raging headaches and excruciating pain in my joints. It felt like the inside of my body was covered with hives. I was forced to leave my job as the director of a nonprofit software project. I used a walker because of my mobility impairments.
I think that my pain threshold is impacted by barometric pressure. I felt the best I had for years on a trip to South Africa in 2019. My symptoms seemed to ease in warm, dry weather. I moved from Boston to Fremont, California, the same year. The change of location helped — for a while. But if a doctor asked how I was feeling today, I’d say, “really, really, really terrible.”
Behcet’s tends to exacerbate any old or new injury. Right now, the inflammation is in my left hip. I’ll feel it in my shoulder, back, internal organs, and even my feet. I’m taking medication for diabetes and thyroid issues. I’ve tried vitamin D and herbal supplements. Nothing’s done a really great job. CBD eases the pain — or allows me to better ignore the pain.
I got COVID in January this year. I had even more pain and fatigue. A lasting effect was double vision, so I can no longer drive. The eye strain has restricted my reading and writing. I’m a retired journalist, so that’s particularly distressing. I sleep 18 hours a day. I only leave my house for medical appointments.
I don’t want to die a long, torturous death like my mother did
I decided to end my life last month. My 29-year-old son, Joseph, supports me. He knows I’ve been ill for 15 years, and I’m in decline. I knew that I was not eligible for any of the Death with Dignity laws. It was highly unlikely that a doctor would say I’ve got six months to live. Behcet’s is a slow, progressive disease. It could kill me by January next year — or when I’m in my 90s.
My mother died a prolonged and torturous death from Lewy body dementia — the same thing Robin Williams had — at the age of 94. She got squeamish thinking about death.
The only legal option I have available is VSED. The Supreme Court ruled that any person has the right to refuse treatment, including refusing hydration and nutrition. At the point that I stop eating and drinking, I can’t get medication to help me die, only medication to make me less distressed.
advocacy groups for VSED. They’ve told me to change my advance directive once I’ve been certified as being “in sound mind” — with no depression or dementia — by an experienced geriatric psychiatrist.
I don’t need the certification to move forward with VSED, but it’s an important measure. The advocates said that my decision would be much less likely to be contested if I got the legal documentation. The wishes of some VSED patients, they said, had not been honored.
But Kaiser Permanente, my HMO, has refused to pay for the psych evaluation. I said that I needed the referral to pursue VSED and receive hospice care. They have not been transparent about their denial.
If I have to pay out of pocket, it will cost tens of thousands of dollars that I don’t have. I’m a senior on a fixed income.
I feel that it’s time for me to go
It takes a great deal of strength to talk about options like VSED. We’re running into a lot of social taboos. It’s a product of how incredibly good modern medicine is — it’s hard for people to die. We’re so focused on prolonging life, we don’t talk about the quality of life.
I’d rather die at home with hospice care rather than in an institution. People I haven’t seen in years have come to visit. They’re happy to have the opportunity to say goodbye, which is how it should be. I have a dark sense of humor and say that we should light a few candles on my “unbirthday cake.”
I’ve led a good life and packed in a lot. I look back at Joseph’s birth and the first few hours that I held him. When I was to marry his dad, I made my own wedding gown. I loved dancing and climbing the mountains where I grew up in Vermont.
I want my death to be as gentle as possible, for everyone involved. I want to be as brave and determined and loving in death as I have been in life.
As Ellie, 26, sat at the foot of her grandad’s bed in the days before he passed, she knew in her heart that he was already gone. “He wasn’t going to come back,” she tells Refinery29. “Whoever was left struggling on the bed wasn’t the man I’d grown up loving.”
After her grandma passed away last year, Ellie knew her grandad didn’t have long left. The first time she visited him after he fell ill for the final time, it hit her that this was it. “He’d been ill before but he always had my grandma by him to help him power through,” she says. “This time, though, we were watching him fight an uphill battle that he didn’t want to win.”
Although he was still alive, Ellie was already grieving for her grandad.
Anticipatory grief refers to feelings of grief that occur before an impending loss. This can be anything from a failing relationship to the inevitable death of a loved one due to old age or terminal illness. Research has shown that it’s similar to conventional grief, although one study found that it was more likely to be associated with higher intensities of anger and loss of emotional control.
“Anticipatory grief starts as soon as your loved one’s life is put into question,” explains Maria Bailey, a bereavement counsellor and founder of Grief Specialists, a collective of grief experts dedicated to supporting anyone experiencing loss. “When you know your loved one is going to die, it’s like death by inches – you start losing little pieces of them, rather than the whole of them at once.”
In this sense, it’s almost like microdosing grief. On the outside, everything is normal, especially when your loved one is still somewhat healthy. But then, out of nowhere, it hits you. It’s like an ice pick headache: a sharp, sudden, stabbing sensation that hints at what’s to come. Suddenly, all those happy moments – birthday parties, Christmas dinners, time spent together – are blemished by the inevitable.
What makes it all the more difficult is that anticipatory grief feels impossible to talk about. Ellie struggled to open up to anyone about how she was feeling. “My family were obviously in the same boat as me but they were either running off fumes from staying by his bedside 24/7 or in denial that he was passing,” she says. “It felt wrong confiding in my friends that I was grieving the loss of someone who was still alive.”
Carolyn Gosling, a grief recovery specialist, says this is because we’re not socialised to deal with grief in general so we aren’t tuned in to its nuances. “The expectation is that grief only really applies when you’ve already lost something or a death has happened,” she tells us. “So when you anticipate loss, it’s even more alien.” Even if you are accustomed to death and grief, nobody can prepare for how it feels to grieve someone who’s still alive.
“It was difficult,” says Ellie. “There’s a weird layer of guilt – sometimes I’d think I was jinxing his life, even though I knew deep down that wasn’t the case and it was going to happen whether I came to terms with it or not.”
When you’re dealing with anticipatory grief, you’re not just grieving your loved one, you’re also grieving all of the moments they’re going to miss: watching you walk down the aisle, for example, or helping you decorate a new home. Knowing that they won’t be there to hold your hand in times of crisis can feel selfish but these feelings are completely normal.
It felt wrong confiding in my friends that I was grieving the loss of someone who was still alive.
EllIE, 26
Gosling calls this a loss of hopes, dreams and expectations, which causes you to grieve what you thought would be your reality. Bailey suggests asking your loved one to write a letter that you can come back to on those big days so they still get to be part of the occasion.
Then there are practical concerns, such as life insurance, wills and funeral preparations. Bailey says it’s important to embrace these conversations and make sure your loved one knows that everything will be taken care of. “That’s what they’ll need,” she says, adding that having these conversations before someone dies can save a lot of added pressure afterwards.
Gosling also warns of turning to unhealthy coping mechanisms such as substance misuse or, in 22-year-old Eliana’s case, disordered eating. After a stem cell transplant, Eliana’s dad developed graft versus host disease, which caused the new cells to attack his body, and was taken to hospital.
Eliana flew out to America to be with him in early November, three months after he fell ill. Just after she arrived, she was told he had only two days to live. But after being taken off his medications, Eliana’s dad made a small recovery and managed to live for another three weeks. It was a rollercoaster: Eliana went from reconciling herself to her father’s death to having hope that he would survive.
Fraught with anxiety, sadness and a confusing cocktail of hope and hopelessness, Eliana couldn’t bring herself to eat. “I was so triggered,” she says. “I lost so much weight.” Then came the guilt – that she hadn’t spent enough time with him – followed by the bargaining. “I basically went through the stages of grief but before he’d actually died.”
It’s like being stuck in emotional limbo, especially when there’s still hope. Yet it’s important to accept how you’re feeling. Bailey suggests labelling your emotions and allowing yourself to sit with them before putting them behind you. Although it can be difficult, she adds, it’s important to talk to someone about what you’re going through, whether that’s a trusted loved one or a counsellor.
When Eliana’s dad did pass away, her anxiety subsided and she was able to eat again. “I was just so exhausted,” she says. Ellie felt the same. While the post-death grief hit her like a train, Ellie says there was also an overwhelming feeling of relief that her grandad was finally at peace.
This is one benefit to having a long goodbye: not only does it give you time to reconcile yourself to your loved one’s death but it gives you the chance to leave nothing unsaid. “This is one of the main reasons why people get stuck in their grief,” says Bailey. “They haven’t had the chance to say goodbye or tell somebody they love them, say thank you or apologise for something they did 10 years ago. So use your remaining time well.”
This is something Eliana was grateful for. She says it’s important to take pictures with your loved one, even in their last days, and spend as much time with them as you can. “Even if they’re not in the best state of mind, even if they’re sleeping, just sit by them. Talk about all your favourite things and reminisce. Watch them, hold their hand, because you’re going to miss that so much when you can’t do it anymore.”
The loss of a spouse is one of the most stressful events you can experience in your lifetime. It’s something that is too painful for many people to think about, much less speak openly about. Most everyone knows someone who’s lost their partner, sometimes after a long bittersweet goodbye. And, often it happens suddenly. When death happens unexpectedly in your circle, it causes a visceral response. You feel it. It’s life’s reminder of your own mortality. It allows you to have empathy, to put yourself in the surviving spouse’s shoes, what if that were my husband, my wife? A thought that can be so uncomfortable to think about, you brush it away and quickly move on thinking about ways you can show support to your grieving friend. Casserole? Flowers? A phone call?
No one wants to think it will happen to them. It’s human nature to have compassion for your friend while simultaneously breathing a sigh of relief that it wasn’t your spouse. But, that uneasy feeling in the pit of your stomach is there for a reason. Death is hard, it’s overwhelming both emotionally, and financially. You will never be ready emotionally to lose your partner, that’s a process of healing that requires time to pass. As time passes you’ll slowly adapt to your new normal, and little by little the pain of loss begins to lose its edge. Financially speaking, allowing too much time to pass has the reverse effect.
Dr. John Maxwell said it best: “You choose how you approach life, if you’re proactive you focus on preparing, if you’re reactive you focus on repairing.”
When your spouse passes, you should be focused on repairing your heart, not your finances.
Read on for three action steps to take now, while you and your honey are both living, to protect each other from financial overwhelm.
Action Step One: Take Inventory
Make it a date night. Order a pizza, pour a glass of wine and connect with your partner. Grab a pen and a piece of paper or fire up a spreadsheet. Make a list of your joint and individual assets, accounts, bills, debts, insurance policies, expenses and income sources.
Transparency is key. If you’re ahead of the game and feel that you have a good grasp on the household financial picture, don’t assume the same for your spouse and vice versa. The devil is in the details. This drill is meant to be a dual effort. This is your opportunity to check in with your partner and compare notes. Maybe you never mentioned that you signed up for a monthly recurring Pilates package at $200 a month. Maybe your spouse didn’t think to tell you he opened a Home Depot credit card he’s been using for some extra perks. This inventory session is designed to pave the path for action step two. Taking inventory and sharing it with your partner is not a one-and-done deal. So, consider making this an annual date night.
Action Step Two: Take Initiative
Now that you’ve spilled the beans over a pizza, the next step is to take initiative on a few practical matters. For instance, there is a difference between being a joint account owner versus an authorized user. Consider that Home Depot card you just found out about—as an authorized user you can make purchases using the card, but only as a joint owner can you close the account if/when your spouse passes.
Beyond credit cards, this applies to cell phone providers, loans, and bank and brokerage accounts. Take the initiative, and verify that you and your spouse have joint ownership of your important accounts. When it comes to your liquid assets, money in the bank or brokerage accounts, adding the letters “TOD” transfer on death for brokerage accounts, stocks, bonds and other investments or “POD” payable on death for checking and savings accounts will ensure that if you and your spouse pass away simultaneously that your joint accounts will transfer directly to your named beneficiaries, skipping the lengthy probate process. Another quick tip to taking initiative is to share not only the passcode to each other’s cell phones, but take it a step further by adding your face ID on each other’s device. If you’re anything like me, most of my important logins, passwords, pins, cherished photos and video memories are on your phone. In the event of an emergency, recalling a password in a panic is stressful; adding face recognition allows for more immediate access and more immediate action.
Action Step Three: Be Intentional
When you are intentional, you choose to make decisions and take action on what’s important to you. Being intentional means being clear about what you want to achieve for a future outcome. That financial inventory you connected on? Be intentional about updating it at least annually, keep a binder or filing cabinet that contains your annual inventory list, important financial documents and any wills or legal documents like car titles and deeds.
A VIP contacts list should be a part of the binder. Include the contact for benefit providers like your employer’s HR department or plan administrator. Remember to add the contact information for any professionals you work with like your financial advisor, attorney, CPA or estate planners. Be sure to include copies of your passports, driver’s licenses, marriage certificate and of course any life insurance policies. Lastly, be intentional about where you keep this sensitive information. Consider sharing your hidden repository with one other trusted adult. Having a digital, password-protected version of these documents is wise.
As much as I’d personally love to believe that all couples in love pass away notebook-style holding hands in the nursing home bed on the same day, it’s unlikely. You will never be emotionally prepared to lose your beloved. Preparing financially for the death of your spouse, while they’re still here to have a say, is truly an act of love.
— Dad shares wisdom after choosing medically-assisted suicide
Eli Timoner
“He was just so weighed down, I think, by feeling like he was stuck, and he couldn’t do anything to help his family — when actually he was providing us with everything, the unconditional love, and the humor and wisdom,” film director Ondi Timoner tells KCRW of her dad.
by Amy Ta
Eli Timoner, who founded one of the fastest-growing airlines in the 1970s called Air Florida, had a picture-perfect life, a successful business, an adoring wife and three kids. Then at age 53, he had a stroke when getting a massage. It left him disabled. He lost his company and most of his money. He never recovered physically or financially. At age 92, he was in such poor health that he wanted to die.
He asked his daughter Ondi to help. In California, an adult diagnosed with a terminal disease, who meets certain requirements, can request aid-in-dying drugs. That’s what Eli Timoner did.
Ondi Timoner then documented her father’s last days. “Last Flight Home” is a remarkable veritè view of friends and family saying goodbye to their beloved husband, friend, father, and grandfather. Timoner is a two-time winner of the Sundance Film Festival’s Documentary Grand Jury Prize – for her films “Dig!” and “We Live in Public.”
Ondi Timoner says she was shocked when her dad suggested using the aid-in-dying drugs.
“He was so independent and … just determined not to be a burden that he would get himself to the bathroom, take sometimes 30 minutes, and sometimes he would fall in that attempt. So it just became untenable. … Doorways weren’t big enough to fit a wheelchair. Just the house couldn’t accommodate him being cared for at home anymore. So it was just too much for him to bear. And he said at one point, ‘I’ve served my sentence,’” she recalls.
She says making this film wasn’t a choice, but an instinct and urge. It was also driven by the fear of losing his voice and personality, and the memory of him. Her therapist told her, “If you feel like you have to film, you need to film.” She also asked her father about it, and he said she was on the right track.
“This film was sort of his final gift to our family and to me. We weren’t making a movie. … The cameras were secondary. They were just documenting dads so we could bottle them up somehow. That was the idea.”
Her sister had asked her to make a video for the memorial they held three weeks after his death. “I don’t think if she had not asked me that, I would have made this movie. Because I don’t know that I would have opened the footage, I think I probably would have just put it on a hard drive. It was too painful, I would have thought. But it was the most beautiful experience to look through this footage.”
Timoner shares that her dad always prioritized their family, but he never expressed shame of being unable to take care of them — because he was driven out of his airline company — until they made the film.
They actually said, ‘What do you think Wall Street will think of a cripple running this airline? We’ll lose everything, you have to get out.’ So he was … forced to resign. And the person who was left in charge drove the airline into the ground a year and a half later.”
During his final days, Timoner set up Zoom calls so people could tell her dad what he meant to them. “He took all that in and that allowed him to have a foundation of feeling very, very loved — to be able to even unpack that shame.”
She adds, “He was just so weighed down, I think, by feeling like he was stuck, and he couldn’t do anything to help his family — when actually he was providing us with everything, the unconditional love, and the humor and wisdom. … Thankfully, I think he started to absorb that and understand that, but he died.”
She says he expressed love throughout his life. For example, when her sister came out as a lesbian around 1989, there was little education about LGBTQ issues, but he reached for her hand and said, “I’m so glad you found love.”
She adds, “He didn’t try to be good. He just was good. … But I think as he neared the end, the veil I discovered between life and death, I think lifts as one dies. And there was a lot of wisdom coming from him from a deep, deep place. … When his grandson … sat down, he said, ‘I just want to ask, how should I live?’ … Then [dad] just said, ‘Respect those you don’t know, and love the ones you do.’ And this man is a great role model. I’m so lucky to have him as a dad.”
It’s hard to ask your doctor what dying will be like. Death is a gut-wrenching reality for everyone. If you have an incurable illness, knowing what to expect as your body shuts down helps you prepare for as “good” of death as possible.
If you have an incurable illness, knowing what to expect as your body shuts down helps you prepare for as “good” of death as possible.
There are similarities to every death, but each dying person’s journey is unique.
Normal signs and symptoms of dying are increased fatigue and weakness, social withdrawal, increased pain, loss of appetite and thirst, and altered mental status.
Changes in the bladder, bowel movements, breathing, and vital signs are also normal.
Facing these changes alone can increase suffering. Seek help earlier in your journey from your loved ones and a palliative care specialist.
A “good” death to most people is free of avoidable suffering and aligns with their cultural, spiritual, and relational wishes as much as possible. To achieve a more peaceful death, studies and experts say preparing helps.
As a hospital nurse, I cared for many dying people during their final hours and walked their families through the process. Every last breath was sacred and unique. The patients who learned about death and talked about what they wanted to develop a realistic plan for their comfort. They were more likely to avoid unnecessary suffering for themselves and their families.
At a point in the dying process, you’ll become unconscious and no longer able to express your wishes. Talking sooner than later about your end-of-life needs empowers your family and caregivers to care well for you when that time comes.
What it’s like to die: signs and symptoms of natural dying
A “natural” death refers to someone dying of a terminal illness or old age. More sudden death due to a traumatic injury will have some of these similar signs but at a more rapid pace depending on the injury. These signs and symptoms occur during the last few months to hours of a dying patient.
1. Weakness and fatigue
As the end nears, it’s normal to feel weak and sleepy, but the timeline differs for everyone. Some become weak quickly while others – often younger or healthier at diagnosis – take longer but then decline rapidly.
It’s okay to sleep as much as you need. Try to time your daily tasks and activities for when you’re more likely to have energy.
As you get weaker, a simple activity like sitting outside, going out to eat, or being with your children can cheer you up, even if it’s exhausting. But there may be a point where you simply can’t do it anymore.
Be honest with your loved ones and caregivers about how you’re feeling. Rather than push yourself too hard, be willing to ask for help when your muscles become too weak to move on their own.
2. Social withdrawal
As you progress toward death, you may feel less social. It can be hard to tell this to your loved ones, especially if you’re from a culture or community that many people want to visit. But it’s okay to let them know if you want fewer visitors. Try your best to explain how you feel, assuring them it’s not their fault.
At the end of life, some people want to be surrounded by friends and family instead of becoming less social. Let your loved ones know if you enjoy their visits.
As you feel more withdrawn and weaker, consider the remaining important things you wish to say and try to have the courage to say them before it’s too late.
3. Pain
Your pain may increase as your disease advances or your joints stiffen, but no one should suffer needlessly. Medications, hospice care, and alternative health treatments all help ease your discomfort.
It is difficult for your loved ones to see you hurt. Be sure you talk thoroughly with them about how you want to manage your pain. You may want enough medication to ease the pain while also staying awake with loved ones. Or, you may want the medicine to help you sleep painlessly for much of the day.
Take oral pain medications 45 minutes before the pain becomes intense or before you have an activity planned. Use consistent language to describe your pain so loved ones and caregivers understand when it changes. Make a list of questions about pain management to ask your hospice nurse during their next visit, such as when to call them about increasing pain and how best to take your pain medication. Consider alternative treatments like acupuncture, massage, music therapy, or Reiki.
As you near death and can no longer talk, your loved ones and medical providers will watch for nonverbal signs of pain like grimacing, moaning, stiffening, resistance when they try to move you, calling out, restlessness, or labored and uncomfortable breathing. They can give you medications for any signs of discomfort.
You can trust that with medical help like hospice, you’ll be more comfortable and peaceful.
4. Loss of appetite and thirst
Nearly all patients lose their appetite as they near the end. Your brain will not trigger hunger and thirst sensations during the final stage of death, so you may have no desire to eat or drink.
Eating and drinking less – or not at all – is a normal part of dying as the body stops using nutrients like it did when it was healthier. As a result, your hospice nurse won’t advise trips to the hospital for intravenous (I.V.) fluids or artificial nutrition.
Your loved ones might fear you’ll “starve to death” and plead with you to eat or drink, believing it will increase your comfort and strength. Remind them with kindness that you’re not uncomfortable. When your body is dying from an incurable illness, it will continue to shut down no matter how much you eat.
Eating or drinking less may make your mouth dry and uncomfortable, however. You or your loved ones can apply lip balm and mouth moisturizer. You can also lightly moisten oral sponges with water to moisten your mouth.
5. Dreams, visions, and hallucinations
In the final days and hours, you may become less alert, drifting in and out of consciousness. Many dying patients have dreams and visions of lost loved ones, God, or other spiritual realities. You may experience hallucinations or a surge of energy just before you die. Some feel an increased awareness of death as it gets closer.
For most people, this delirium or altered state of consciousness is peaceful and not distressing.
However, if you become agitated, medications like haloperidol can restore your comfort. Caregivers can also check for other problems like pain, constipation, bladder infections, or side effects of medication.
If you experience such symptoms when you are still awake and alert, it can be helpful to talk with loved ones or care providers like end-of-life doulas and hospice nurses, counselors, and chaplains.
6. Bladder and bowel changes
At different stages during the dying journey, you may notice bowel and bladder changes.
Your urine may change color due to organ failure, and you may urinate less. Depending on your disease process, you might lose control of your bladder – also called bladder incontinence.
Incontinence can cause skin breakdown for bedridden patients. If this happens, some medical providers recommend a urinary catheter if they increase patient comfort while protecting their skin. A catheter may also be recommended if your bladder is retaining urine.
Constipation is not uncommon at the end of life. Your medical providers should counsel you on taking stool softeners and laxatives for constipation. These should be stopped or decreased, however, if you stop eating.
It may feel awkward, but it’s always best, to be honest about these symptoms with your caregivers.
7. Skin changes
In the later stages of the dying process, your skin may change in temperature and color as it stops functioning. During your final days, your body will move blood away from your arms and legs while it shunts it to the vital organs. These changes can make you feel cold and make your skin look pale, gray, or blotchy.
Some people, however, feel warm and flushed or develop a slight fever. A cool cloth on one’s forehead may ease the heat.
Keep your loved ones informed when you get too cold or hot. This helps them understand your body’s trend to care for you when you’re unconscious. Heated blankets and heating pads can be helpful but can also burn your skin if ignored.
8. Breathing changes
When people are within days to hours of dying, their breathing changes. Sometimes it’s very slow and regular with only a few breaths each minute. For others, it’s slow and irregular where they may breathe three breaths and then wait 45 seconds to take another breath.
Some patients breathe very fast, then slow down, pause, breathe fast again, and so on. This is a normal end-of-life breathing pattern called Cheyne-Stokes respiration. It can occur when the brain forgets to trigger breathing.
When you reach your final breaths, agonal breathing is common. Agonal breaths look like the patient is trying to gulp for air and can be distressing to loved ones if they’re unfamiliar with it. Nurses sometimes nickname it “guppy” breathing because the mouth opens wide and the jaw and shoulders work to pull oxygen into the lungs.
When the diaphragm and other muscles weaken, phlegm builds up in a dying patient’s airways, making a rattling sound when they breathe. This is known as the “death rattle.” If this rattle occurs to you, it will not feel uncomfortable, but the sound can be distressing to loved ones. Your caregivers may reposition your body or your neck to reduce the rattle.
If a medication like atropine is given at the beginning of your final days, it may improve the death rattle later when it occurs in your final hours.
These breathing changes – even agonal breathing and the death rattle – rarely, if ever, cause discomfort. They are a normal part of dying and occur when you are in a relaxed and unconscious sleep.
If your breathing does look painful, very labored, or very rapid, your loved ones or nurses will give you a medication like oral or I.V. morphine, because the labored breathing may be a sign of pain. Morphine is typically the end-of-life pain medication of choice because it not only dulls the pain but also eases your breathing.
You may want to continue wearing oxygen as you reach the end. In most cases, it will not lengthen your life significantly during the final days, but some people find it comforting.
9. Heartbeat and blood pressure changes
Changes in your heartbeat and blood pressure will also occur. Your heart rate may become irregular and eventually weaker as your heart fails. These are normal changes and are not treated at the end of life. To de-medicalize the dying process for the patient and their loved ones, most medical providers will stop monitoring vital signs during a patient’s final days.
Facing death takes profound courage. If you have an incurable illness and know death approaches, gather your loved ones and your medical team around you. Consult with a palliative care specialist sooner than later to help you through the journey. Be sure to talk openly with them about tough topics such as what it’s like to die and how they can help make you comfortable.
A year after being widowed, Laura Horn began volunteering in a hospice, sitting with people who were about to die. She soon realised she could do more for them …
Laura Horn has found what she calls her end-of-life career, “a vocation to last the rest of my life”. In her 60s she decided to train as a registered nurse, specialising in hospice care. “I’m a brand new nurse but that’s not what’s important,” she says. “I’ve had life experience.” After Margaret, her wife of 20 years, died “suddenly and unexpectedly”, Horn understood she had to make a change. She had been thinking about volunteering in a hospice, after her mother and both parents-in-law were given palliative care. Following Margaret’s death in January 2017, Horn applied to the Zen Hospice Project in San Francisco, which trained volunteers to sit with the dying. They told her: “Wait a year. You can’t do it right away.”
Looking back, she says, they were right. “You can’t jump into something new until you have grieved appropriately.” She had “good therapy” and did what she calls “walking grief – I mean, I walked everywhere”. A year later, she reapplied. “They said, ‘Why do you want to do this?’ and my first sentence was, ‘I know loss.’”
As well as Margaret, she had outlived her parents, her parents-in-law and her brothers. They both “died of substance abuse, one of a heroin overdose, and the other of long-term substance abuse. That, I’m sure, was part of my motivation,” she says. “That kind of pain can also lead to openness and joy, and that’s what I’ve discovered.”
Volunteering was “a truly transformative” experience for her and Horn realised she wanted more. “I thought, I want to do the nursing part too.” As an undergraduate, she had studied biology, and her early work was in public health before she switched to education research. Most of her career was spent “trying to determine what helped students succeed in college and beyond. But I always had the sense that I would circle back to the world of health,” she says.
At 63, she enrolled at one of the very community colleges whose impact she had been researching, to take the prerequisite courses – anatomy, physiology, microbiology, pharmacology. From there, she applied to nursing school at 65, on an accelerated one-year programme for graduates.
The intensity was staggering. “I was devoting every waking hour to studying and my clinical work,” she says. The friends who had supported her after Margaret’s death, and lived nearby in Berkeley, California, cooked for her three nights a week. Horn would visit for an hour, then leave to study. “We called it ‘catch and release’,” she says. Her two children with Margaret had left home but were supportive. When she graduated, one of her friends made a little sign out of brightly coloured paper – “It’s never too late” – and stuck it to the back of her mortarboard.
In some measure, Horn has put herself back at the heart of the storm, in a place of death and loss, which she occupies for three shifts a week at the hospice where she works in Oakland. How emotionally taxing is her new career?
“We are not part of the family so there is that distance,” she says. “We are here with you at this important time. We are here to normalise the experience and we teach family members what to look for, and not to be scared. It’s emotionally taxing but not overwhelming.”
Now 68, Horn has noticed her own attitude to death evolving. “I think I have relaxed around it,” she says. “After seeing all I have about death I’m not so scared of dying. I have a limited amount of time left on this Earth and I will try to make the most of it. And not be too terrified.”
Most of all, she has realised that palliative nursing care is “a reciprocal relationship with patients and families”. She hopes “to find real balance in that, to learn from them as they learn from me. If I’ve learned nothing else, we can’t live a full and meaningful life without deep relationships. And that’s what I’m hoping for.”
