There is a certain weariness when you start looking at someone who used to look at you. It is not fatigue that makes sleep. It sits underneath it all because somewhere in the middle of the meds, appointments, and tedious paperwork, you realize the parent you care for is slipping while still sitting in front of you. The loss has already begun, and there is no funeral for the first departed.
What surprised me the most when listening to people caring for an elderly parent was that they were grieving long before anyone died. They described a grief that had no clear name and no clear end. And beneath this sadness, quietly, almost no one spoke aloud, was a second sadness.
The grief that started while they were still here
We think of grief as the moment someone dies. It doesn’t always wait that long. Barbara Karnes, hospice nurse and author The Final Act of Residence records that “grief can begin at the moment of diagnosis” and that it tends to be more intense for caregivers because of how close they are to the person they are caring for. There’s a word for that. This is called anticipatory grief, and it means mourning a loss that has not yet fully occurred.
This is the part that catches people off guard. You expect to feel relieved that your parent is still alive. You no longer expect to feel that you are at the beginning of saying goodbye. Both things can be true at the same time, and holding them together is so exhausting that it’s hard to explain to anyone who hasn’t done it.
If the parent in front of you is not a parent you know
The hardest stories I heard were from people caring for a parent who changed not only their body but also their mind. Dad repeating the same question. A mother who forgets her daughter’s birthday. The body is still here, the voice is still here, but one feels further away every month. Kathryn Boerner, professor of gerontology at the University of Massachusetts in Boston, clearly describes: “As the person becomes almost unrecognizable, the sense of loss can be overwhelming for caregivers.”
My parents live on the other side of the world from me, several time zones and a long flight away in Central Asia, and we only manage to see each other once a year. I think about this more than I care to admit. The version of them I carry around in my head is the version I had as a child, strong and capable and a little larger than life. One day the version in front of me won’t be there and I’ll have to learn to love the new one without resenting the distance between them.
The second sorrow is the sorrow that no one mentions
Here’s a part I don’t expect to hear often. When your parent becomes a caregiver, you also lose your quiet hope that one day they will be able to care for you. Not in a dramatic way. Most of us have grown up with our own lives and our own families. But there is a small, almost childlike corner of the heart waiting to be looked after by the people who made us. The moment you’re the one holding the glass of water, he knows the wait is over.
What I believe after sitting with these stories is that this is a loss that people struggle to put into words. They grieve the dying parent. They also grieve the child in them that they still want to take care of and now have to quietly raise the rest of the way. Nobody gives you a card for that. There is no ceremony. It’s just located.
I’m not a psychologist, and I’m hesitant to say what this means for someone else. But I find that naming this second grief helps. People who could say it out loud even once seemed lighter than those who still carried it as a secret.
What helps, a little
None of the people I’ve talked to have solved it. They just found ways to carry it without breaking them. Some joined a support group and discovered they weren’t the only ones experiencing two types of loss at once. Some allow a sister to stay at a hotel on the weekend. Some simply stopped pretending to be good, which became a kind of relaxation.
Something worth seriously considering is that grief can stop being something you get through and start being something that traps you. Mary-Frances O’Connor, who directs the grief research lab at the University of Arizona and wrote The Grieving Brain, warns prolonged grief “can sometimes lead to other serious health consequences,” so it’s important to recognize it and seek help. If any of this is more overwhelming than you care, talking to a therapist or doctor is more valuable than any article. There are no prizes for doing it alone.
If you are currently caring for a parent, I want you to know that the two griefs you feel are both real, and that you are not selfish for feeling the second one. Asking to be taken care of doesn’t make you ungrateful. It makes you human, and it means you loved them as their child long before you were in charge.
