Just the Caregiver
“There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”
Years ago, when he was in his fifties, he was diagnosed with Hodgkin’s lymphoma. She was diagnosed with multiple myeloma. They had been married for many years, and both were simultaneously receiving treatment for their cancer diagnoses. Her treatment included a bone marrow transplant. She spent months in the hospital and eventually a nursing home, expecting she would never be well enough to leave. Her condition was so severe at one point that several toes had to be amputated.
Image Credit @junvutruong
I will always remember their story – not all of the details – but what I remember most vividly is both of them sharing that the most challenging part of what they had gone through was being a caregiver to each other. Of everything they had gone through…the amputation, the chemotherapies, the bone marrow transplant, radiation therapy, neuropathy; however, caregiving, they admitted, was the most difficult to manage.
I’ve learned a lot from caregivers over the years. They typically are not recognized, and their role is marginalized. How many times have we all said to someone going through chemo, “So, how are you doing?” That question is rarely directed toward caregivers. They are the silent, primarily unacknowledged partners.
I’ve learned that caregivers frequently postpone their medical needs and appointments in deference to the one who needs them because someone else’s needs always come first. Caregivers who take even a tiny amount of time for themselves often feel selfish, and sometimes the patient may think they are too. Recently, a husband shared in a support group that his wife wouldn’t tolerate him out of her sight; consequently, he was feeling confined and exhausted. Then he shared a secret with the group: When he went on their grocery run, even though he always had a list, he intentionally left off several needed items every time because then he had a “legitimate” reason to leave again and steal a small amount of time for himself.
I’ve learned that people in physical or emotional pain often vent their frustration on the closest person and the one they love the most (typically the caregiver). Caregivers often feel helpless – sometimes guessing what their loved one wants or needs. Don’t assume you know what your loved one needs – ask. If you’re unsure what to say or do, ask, “What do you need from me?” She may say, “I don’t know,” but whatever the response, she will appreciate the question.
Here are additional suggestions for caregivers, whether you are a spouse, family member, or friend: Take care of your medical needs. Find at least 30 minutes daily for yourself –. even if you take it in 10-minute increments. Remember that you can’t be supportive and caring if you are depleted. Give yourself permission to say out loud what you need and to discuss hurtful words or behavior. While it can be awkward, talking through feelings can prevent withdrawal and resentment.
Whether you are in treatment or are a caregiver, I hope you will use this as a conversation starter to share what is important to you, what is helpful, and what might be changed because you are partners and you are in this together. While you each face challenges specific to your role as a patient or caregiver, it’s important to remember that a caregiver is never “just the caregiver.”