I will always remember their story – not all of the details – but what I remember most vividly is both of them sharing that the very hardest 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…but caregiving, they admitted, was the toughest part for each 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 all of us said to someone going through chemo, “So, how are you doing?” That question is rarely directed toward caregivers. They are the silent, mostly unacknowledged, partners.
I’ve learned that caregivers frequently postpone their own medical needs and appointments in deference to the one who needs them because someone else’s needs always come first. Even taking a small amount of time for oneself is considered selfish by the caregiver and sometimes by the one needing care. 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, he always had a list, but 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 who are hurting – either physically or emotionally – often take out their frustration and pain on the person who is closest and the one they love the most (typically the caregiver).
I’ve learned that caregivers often feel helpless – sometimes guessing or assuming what their loved one wants or needs. One of the best pieces of advice for caregivers that I know is this: If you’re unsure what to say or do, ask your loved one, “What do you need from me?” She may say “I don’t know” or “I need to talk through this” or “I need some quiet time.” Whatever the response, she will love you for asking the question.
Here are some suggestions for caregivers, whether you are a spouse, family member or friend: Take care of your own medical needs. Find at least 30 minutes a day for yourself –. even if you take it in 10-minute increments. Remember that you can’t be supportive and caring if you are depleted. Don’t assume you know what your loved one needs – ask. Give yourself permission to say out loud what you need and to discuss hurtful words or behavior. While that is awkward and tough to do, talking through feelings can prevent withdrawal and resentment.
Whether you are in treatment or are a caregiver, I hope you will use this blog 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 a caregiver.”
Join us the 2nd Monday of each month at 1:00 PM (MST) for a discussion related to this Blog. Request a Zoom link below, to join the discussion.
SUE'S GIFT BLOG
Sherry Martin is the Patient Services Director for Sue's Gift, a licensed clinical social worker with over thirty years of experience in the field of oncology social work, and author of the book, Beginning Again: Tools for the Journey through Grief: A Step-by-Step Guide for Facilitators of a Grief Support Group. Sherry lives with her husband in Woodland Park, Colorado.
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