Who's More Important?

Balancing the Needs of the Caregiver and the Dying Person

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Claire told me last night that she couldn’t do it anymore, that she couldn’t continue caring for her mother like she had been. Claire, a 50-year-old woman with her own family and also the primary caregiver to her mother with late-stage cancer and her father with mid-stage dementia, said that some days she feels like she can’t pull herself off the couch one more time. All she wants to do is lay there under a weighted blanket, eat chips and binge on Netflix. And she feels guilty for feeling this way.

“We need to figure out how to make this happen for you, at least one day every week. We need to make this happen for you even if it means that your parents aren’t happy all the time.”, I told her.

As I get older, my boundaries are stronger. Maybe it’s because as I reflect on my experiences, I can take more ownership of situations, reflecting on my role in how things went sideways. What I’ve learned is that if a situation turns ugly, if I find myself drowning, I probably wasn’t holding the boundaries needed to take care of myself

Do boundaries change when in a relationship with a dying person?

In the earlier days of my work, I believed so.

“Can you come spend the night with my mother?” a client would ask me in a moment of exhaustion from care giving.

“Of course.”, I would say without hesitation, knowing well that I would be too exhausted the following day to manage my other work and my own family.

The woman was dying. This was likely her last few nights, hours maybe.

Doesn’t that trump everything, including any of my own needs?

I’m several years into this work now and after many situations like this, I can answer the question with a firm “No.”. Death, while one of the most pivotal and meaningful moments in a person’s life, does not automatically trump the needs of the living – at least not in the overall picture of end-of-life.

There are certainly many moments when the needs of the dying person are a priority. If we as the caregiver have a breakfast date planned with a friend but our loved one wakes up with pain that is difficult to manage, we should probably cancel your breakfast and figure out a pain management plan with hospice. If the person who is scheduled to provide us some respite from our care giving duties called in sick, we may also have to call in sick to our job to be with our loved one because they can’t be alone. But other situations are less clear. The dying person may want to see us everyday and never want us to never leave their side. These are the times when the guilt may creep in. They are dying. They may only have a short time left AND we need a break.

Take the break.

The needs of the caregiver not only matter, but there are even times when those needs do trump the needs of the dying person. Putting our needs first when necessary is an act of love. As a caregivers, our self-care routine may not be perfect and may be disrupted often. We may have to step it up when all we want to do is crash. Just keep in mind that, in the big picture of this long, challenging journey, our overall needs as caregivers do not matter less. And finding and taking the time to meet them is a great act of love for everyone involved.