I just returned from a long trip to help my dad care for my mom. I was able to get my own scheduled treatments shifted over to providers in that state and community.
Upon arriving at my parents' home; I assessed a serious state and quickly got to work taking steps, as any nurse would, to improve my mom's condition. My efforts were a ultimately a success and I felt comfortable returning to my own home and family; after having been there through Thanksgiving, Christmas and New Years day.
At first, I was happy to cook, clean, organize, shop, as well as, facilitate and provide care for my mom. It was my turn and chance to give back. But, then I started feeling the fatigue coming earlier each day. I prompted family to help, but old habits were hard to break. I finally got to the point of having to announce I wasn't cooking or cleaning after meals. People showed up on New Years day (while I was packing my car to leave the next day) expecting the traditional feast and I brought out leftovers; which weren't so well received.
My family are all aware of my GBS/CIDP and functional limitations, but they were spoiled by mom. As her health improved, I had her helping to empty the dishwasher and fold laundry to exercise her body and mind. However, she could not do what she use to do. And, we couldn't sustain doing the work alone. My children and husband arrived and helped us, but even then it would have been nice to see the whole family involved.
Then, I return home and read an article about George Price, a completely altruistic evolutionary biologist and scientist ... who ultimately died as a result of his selflessness. The author of the article draws a couple of lessons from the story of such an intelligent man; especially on the importance of self care.
"But the second, broader lesson is that self-care is important. Price’s altruism was all-consuming, to a point of self-destruction and collapse. That wasn’t good for him, obviously. But it wasn’t good for the homeless community he joined and tried to help either. That isn’t a statement on Price’s character, which I do not feel in any real position to judge. But it’s a statement about the value of all-consuming altruism as an ethos."
I have always believed a hospital has to function in a way that allows it to sustain its operations; in order for it to be able to continue serving its community. Working with so many professional caregivers, I also saw the importance of self-care for preventing burnout and maintaining staff health. Now, as a patient what I know was put to the test as I had my own experience with needing to put myself first, so I could continue to focus on my priority (caring for myself and mom) instead of lesser demands (feeding my unhelpful family members).
If you find yourself caring for others, put yourself first so you have the strength and endurance needed to complete important tasks. Why, because if your health deteriorates to the point that you can no longer care for others, who will take your place... and care for you? A burnt out caregiver becomes the patient themselves - adding to to the workload.
It is ok to ask for help (family/friends or home care and respite services), prioritize and set boundaries or simply say no when you are being asked or expected to take on too much. Being strong ultimately benefits all involved.
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