Tips for caring for loved ones at the end of their life

Though it's a natural part of life, death is a tough topic for many of us — even in a country where palliative care is becoming the norm. According to a recent survey, 54.5 per cent of Canadians are dying at home or in community settings, such as hospices, rather than in hospitals. Given the country's aging population, that number will increase dramatically in the coming years.

It can be overwhelming to care for a loved one who's dying, to say the least, so we spoke to three experts — who deal with death every day — to get their advice.

Being honest about what's ahead

Palliative care co-ordinator Shelley Tysick said it's important for both the dying person and the caregiver to understand what's ahead. "Preparing somebody, it alleviates a lot of stress," said Tysick, a palliative-care co-ordinator at Victoria-based Island Health. "And any new experience, if we don't really know what to expect, it's hard to know what's normal." 

Naturally, it can be hard to broach discussions about intimate caregiving, but it can help to do it at the right time. Tysick said creating a care plan early, when there may be less stress or overwhelm, is wise. "Part of that dying process does mean depending more … on others to care for you," she said. "That includes your personal care, your toileting, your mouth care, your eating, all of that is part of that process. And so having a plan in place and how that could be supported early on, I think is really helpful."

Anne-Sophie Schlader, executive director of Nova Home Care in Montreal, knows just how challenging this time can be and, on top of that, what it takes to do this type of work. She emphasized that caregivers need to bring a lot of themselves to this work. "Being respectful and compassionate, not passing judgment, being sensitive and dedicated — I would say those are all very important qualities," she said. Schlader recommended that anyone thinking of being a caregiver assess their capacity honestly and respect their personal limits to avoid causing themselves undue emotional distress or trauma. 

And don't view it as a failure if you can't be a caregiver. "If you're not able to do this work, it's not because you don't love the person," Schlader said. "It's a question of personal boundaries. You will show your love for them in other ways. It's important that you don't define this role as either 'I love you' or 'I don't love you.'"

Deferring to the medical team — and the patient  

As a caregiver, it can be useful to consider yourself an extension of the medical team (while, of course, never performing tasks reserved for professionals). Your proximity to the dying person can be a huge asset — changes you see in the patient could inform their treatment. 

For instance, if you notice your loved one isn't eating as much, it can be a sign of advanced illness or a gastrointestinal issue, the experts said. But caregivers might have a hard time letting the dying person take control of their diet, and try to push them to eat even if they don't want to. This response is common, according to Tysick and Schlader, since keeping someone nourished can feel key to caring for them. However, rather than force the dying person to eat, the advice is to share this change in appetite with the palliative-care team as soon as possible. 

Also, Tysick said it can be hard for people to take a step back and make space for our loved one's wants. "I think we often sort of want to move in to fix things," she said. "We … identify what looks to be the problem and/or what we think would be best … with a good intention to help — but not recognizing that that's what we would want for ourselves, but not necessarily what that person may want for themselves, or what might be most meaningful." 

What someone wants at the end of their life is influenced by their social, spiritual and emotional needs and is an individual experience, Tysick said. "There is no one way [to die]," she said. "There's no best way — there's no right way."

Offering comfort

This doesn't mean there aren't plenty of things you can do to care for your loved one and make them more comfortable, while keeping the stakes low. "Dying people need to be touched — gently, because sometimes they're in pain," Schlader said. "But even if it's just placing a hand on them, they feel it, and it's very comforting." She said it can also help to play calm music, wash their hair, rub moisturizer on their back, change their pillow for a fresh one, and if appropriate, place a warm compress on any sore spots. 

Meeting the needs of the dying person can get expensive, however, if you need to buy equipment, like a hospital bed. Kayla Moryoussef, a death doula based in Toronto, suggested shopping for these items second-hand in stores or online marketplaces, then reselling them or giving them away when you no longer need them.

Also remember that grieving together with your loved one can be healthy and a way to show you care. "The dying person has the right to grieve their own death, and that's often overlooked," Moryoussef said.

In fact, the experts we talked to said it's essential that end-of-life caregivers make space for what their loved ones need to say. "With the dying person, it's mostly about listening," Moryoussef said. "It's not about what I have to say — it's mostly about what they need to talk about." Part of her job includes helping her clients think through what's important for them to do before they die, like writing goodbye letters and figuring out their last wishes.

Taking care of yourself as well

Devoting a considerable amount of time and energy to someone who's nearing the end of their life is no small feat, and Schlader said caregivers should acknowledge the intense emotions that come with the effort. "Guilt is normal, and most caregivers are going to feel guilty if they take a break," she said. 

But, she added, you have to take care of yourself if you want to be helpful to your loved one. "You're not failing that person," she said. "You are recharging your battery."