— As a hospice volunteer, I expected tears and anger. What I didn’t expect was the laughter and joy.
by Keri Wiginton
My 90-something friend is relieved as I help him collect coats. He’s taking a trip somewhere his family can’t follow, he says, but he doesn’t want them to get cold after he leaves. I keep packing even though his story doesn’t make sense, at least not to me.
Gray clouds catch his eye, and he switches gears to the weather. I ask him what else he sees out the window. He dives in and out of his past, joking and smiling along the way. He was quite the ladies’ man, he says with a wink.
Twice a week for more than a year, I’ve given my time to the dying. Most people I visit have Alzheimer’s disease or another form of dementia. As a hospice volunteer, I expected tears and anger. What I didn’t expect was the laughter and joy.
How did I get here?
It was my therapist’s idea.
A few years ago, my 14-year-old cat suddenly got sick and died. Something in me broke when I felt her stop breathing. Still reeling from the loss, I found out my stepfather had a fast-growing brain tumor. He died five months later.
I learned how different the day feels when you know it might be your loved one’s last, and every second felt saturated with significance.
I savored every dad joke, every spoonful of ice cream, every mundane movie night. And when I watched him unwrap Christmas presents for the last time, I felt hyperaware of how much I’d miss his tendency to tear up no matter how small the gift.
My low mood persisted long after his funeral but not because of my sadness. The experience shifted my perspective on life. Unlike prior depressive episodes, regular exercise, mindfulness meditation, antidepressants and avoiding alcohol weren’t enough to bring me back this time.
So, my doctor set me up with a goal-oriented behavioral counselor.
I told the therapist about my stepdad and that I felt a profound pull to help others process grief or make meaning before their death.
We agreed that volunteering in a hospice might be a good fit, but I felt too overwhelmed to get started. He said to take one small step each week.
I looked at the nonprofit’s website and noted the volunteer requirements. A few weeks later, I applied. It took me three months to go from thinking the whole thing seemed impossible to attending my hospice-care training session. I wouldn’t get my first volunteer assignment for four more months.
That first day, my heart raced as I nervously sat in my car outside the memory care center. I’d never done anything like this before, but I’m glad I willed myself to walk in.
After that, I relaxed into my new role visiting people who are dying.
I give caregivers a chance to nap or run errands. While they’re out, I get to socialize with their loved ones as we listen to big band music from the ’40s, play Scrabble or go outside to feel the warmth of the sunshine while we chat.
Many of the folks I spend time with have memory challenges, so conversations may take twists and turns. I’ve learned to explore with them whatever path they’re on, and we often have fun doing it.
I find immense value and grounding in offering companion care to someone who’s nearing the end of life. I look forward to it every week.
Health professionals in the United Kingdom routinely recommend so-called social prescribing, linking people up with something that matters to them, whether it’s working in a garden, at a museum, or in my case, hospice and memory care.
“People are sometimes scared to develop a relationship with someone who has dementia,” said Rebeca Pereira, a psychology master’s student at the University of Saskatchewan who studies relationship-building in long-term care settings. “But we found that volunteers see that the person is much more than the disease.”
Pereira’s research mirrors my experience. Plus, when I make someone’s day a little brighter, I feel warmth in my chest similar to what wells up during a meditation session called loving kindness, a mindfulness practice where I imagine sending joy out into the world.
My compassion leaves a lasting impression even if my identity doesn’t.
Stephen G. Post, a bioethicist at Stony Brook University and an expert in compassionate care and the relationship between giving and happiness, explained why.
“People with dementia can be very emotionally sensitive and they can pick up on that presence,” said Post, who explores this topic in his book “Dignity for Deeply Forgetful People: How Caregivers Can Meet the Challenges of Alzheimer’s Disease.” “Just because someone’s linear rationality is compromised that doesn’t mean their consciousness is.”
I feel a sense of loss when people die, but our time together matters more because I know it’s short term. I also have found myself to be more present and less anxious, both when I’m volunteering and when I’m not.
I sleep easier at night and am less distracted at work. I have more energy to exercise and stronger shock absorbers for life stressors, including handling little problems such as someone cutting me off in traffic or big challenges like a family member’s Alzheimer’s diagnosis.
A cascade of chemicals such as dopamine, oxytocin, and other endorphins are probably responsible for the “helper’s high” that follows an act of kindness, said Post. These hormones are part of the mesolimbic pathway that responds to food or social rewards, he said, which helps humans cooperate and survive.
In other words, “you’re wired to feel better through doing this,” said Post.
At the same time, pathways that fuel depression symptoms may turn off, “including feelings of bitterness, hostility, rumination and other destructive emotional states,” Post said.
I feel more confident in other areas of my life because I feel successful at volunteering.
“This sense of competence may boost your self-esteem so that when stressful things happen, you feel better able to cope with them,” said Ann-Marie Creaven, an associate professor of psychology at the University of Limerick in Ireland.
We also have a fundamental need to belong to a group or to feel “that we’re important in someone’s life,” said Creaven. And this social connectedness piece may hold the key to how volunteering eases depression for people like me.
My social anxiety skyrocketed after the pandemic. But volunteering offered a structured, time-limited way for me to get out of the house. The more I did it, the more comfortable I felt in my role and around other people.
Because I found hospice work so meaningful, I began volunteering every other week during the school year to help grieving children explore the death of a parent through therapeutic play.
There, I bonded with a group of volunteers. We checked in with each other before and after each session, away from the kids.
Dana Basch, a licensed counselor and community grief specialist with Agrace Grief Support Center in Madison, Wis., where I volunteer, told me there is something “sacred” about coming together for a common purpose as personal as grief.
“There’s value in being able to help somebody else who’s going through something that you went through,” said Basch. “That absolutely helps volunteers heal.”
I also found that helping kids use play to work through their feelings around death can be joyful and, well, fun.
“There’s this idea that grieving kids are sitting around a circle crying,” said Jessie Shiveler, Agrace’s community grief manager. “People don’t understand that there’s laughter here, there’s smiles, there’s a connection.”
I developed a greater sense of peace and purpose after several months of face-to-face volunteering for two to four hours a week, which lines up with the suggestion of two hours a week from Post.
A caveat is that acting altruistically probably won’t trigger the same reward pathways for someone who feels forced into it. And it’s possible to overdo it.
“If any volunteering or care behavior gets to be too much, it can become a stressor in itself,” said Creaven.
According to Post, volunteering for health is kind of like exercise. It doesn’t work for everyone, but most people who do it find a benefit.
“I don’t think there are any guarantees on happiness advice,” Post said. “But I think that you’re better in the long run if you’re reasonably generous and kind.”
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