Being a caregiver can be an honor, but it can also be complex and demanding. And caring for a loved one at the end of life can be particularly difficult.
“Death, agony and grief are still taboo subjects for many of us,” says Angharad Burden, head of helpline and peer support services for end-of-life charity Marie Curie. “The side effect is that people who suddenly find themselves in the role of caregiver are thrown into the unknown. »
Marie Curie’s research reveals that many people express the wish to die at home and that “the most important factor that allows this to happen is the presence of a caregiver”» Still, there are many aspects to consider as a caregiver, especially for unpaid family members or friends who facilitate their loved ones’ wishes.
Although a study While caregivers often feel like they can continue a modified normal life, family members also experience a sense of burden, due to fatigue, isolation, lack of support, and witnessing up close of the progression of the disease.
It is necessary to consider the wishes of the person you are caring for and their loved ones, as is keeping that person as comfortable and peaceful as possible and ultimately allowing them to die with dignity. But you also have to take care of yourself.
Here are some expert tips:
1. Consider the practicalities
As well as dealing with the physical aspects of the illness, such as managing medications, keeping your loved one comfortable and arranging home visits from healthcare professionals, there will also be practical matters to deal with. These may include handling mail and emails, managing finances, and looking after pets.
According to Angharad Burden of Marie Curie, understanding the realities can be useful for both the loved one and the caregiver. “If you are aware of what needs to be addressed, you will not only feel more in control, but you will also give your loved one greater peace of mind that their wishes will be fulfilled,” she says.
“Many people who come to us for help say they don’t even know where to start, but with a checklist in place, they can regain some sense of control, prioritize certain tasks and make sure to maximize their time with their loved one. .”
2. Be honest with yourself about your feelings
It’s okay to think it’s hard to take care of someone, but that doesn’t make you a terrible person. “There is no right or wrong way to feel in this situation. Everyone is unique and you may feel many different emotions – guilt, sadness or even resentment – at different times,” says Amy Borthwick, Marie Curie nurse.
Likewise, Burden says, there is no silver bullet. “Try different self-care methods to see what works for you,” she advises. “Some people might find it helpful to talk, whether with loved ones or a spiritual leader. Others may prefer to talk to someone far away from the situation – on a helpline for example. While some are still hesitant to talk and prefer something like journaling. The important thing is to accept and acknowledge your feelings.
