Many of us, particularly (but not exclusively) women, were raised to put ourselves last. The message was brought home to us by watching our own families each day; mothers, grandmothers, aunts knocking themselves out to make life better for everyone else. If they were ill, or pregnant, or simply tired it made little to no difference. The message was reinforced by media, by advertising, by faith leaders. Our entire culture told us,You must put others first. Always. To do otherwise meant you were selfish. A bad parent. A bad spouse. A bad child. A bad grandchild. A bad (insert faith tradition here). And therefore inadequate. Unworthy. Prioritizing one's own needs was seen as wrong, sinful, just plain bad.
It's an attitude that has existed for millennia in cultures all across the world. There's probably an actual recognized term for it which I unfortunately don't know. I think of it as institutionalized selflessness. For many people this indoctrination starts when we are quite young. Childhood lessons have a way of sticking with us whether we want them to or not. This one is a very real hazard for family caregivers. It's tempting to think of it as an almost exclusively female thing, considering that the great majority of family caregivers are women. But it does show up in men too. And men can suffer just as much harm when they internalize the message of complete selflessness when caring for a loved one.
Case in point, the friend and neighbor who made the pendant pictured above. I knew he was a devout Christian and utterly devoted to his wife. Friendly, outgoing, kind, an astute businessman and talented artist. A man who summarized his entire life philosophy in just two words. "I'm third". Meaning, God first, other people second, self third. Always.
What I didn't know until years later was the lengths he'd go to, to live that philosophy. And what it would eventually cost him. Long story short, his wife became very seriously ill. He sold his business and gave up almost all outside activities to care for her. His devoted care paid off; she underwent intensive treatment including chemotherapy, and was eventually declared cancer-free. But several years of relentless hard work combined with self abnegation took it's toll on his own health. He'd ignored his own growing health issues too long. And shortly after his wife (who still lives two doors down from us, and seems to be doing alright) started feeling well enough to reenter life in the outside world, he died. It was very sudden and very fast.
My parents remained good friends with the widow for several more years, until they died themselves. According to my mom, the husband had been experiencing troubling symptoms for some time. At first he just laughed it off. When his wife became ill he chose to not seek treatment for himself. By the time his wife noticed just how badly he was doing, he was already very seriously ill. His death shocked everyone who knew him. He'd looked a bit haggard for some time. But he'd never said a word. I remember asking my mom, why? Why didn't he ever mention just how hard it was? Why didn't he say something? Ask for help?
She had no answer.
I've already mentioned how my reluctance to ask, or simply demand a little help resulted in my spending over a week in the telemetry unit at the hospital with pneumonia. And many more weeks recovering at home. My reluctance to speak up on my own behalf didn't do a single good thing for my grandmother. But on that occasion it could easily have lead to my death. As it is, other injuries I sustained while caregiving have permanently weakened my lower back and knees. I'm absolutely 100% certain that other family caregivers have similar experiences. Similar stories.
If I had it to do all over again I'd have been much more vocal about needing help. I would have told Grandma's Kingdom Hall girlfriends to put up or shut up. (They had plenty to say about how I took care of their dear friend Sister Eileen, but never once offered so much as a ride to Sunday service.) I wouldn't have been deterred by my mother's complaining about my dad taking time away from paying constant attention to her. (Which had been going on as far back as I can remember.) At the time she wasn't ill herself. She just didn't like anyone else getting her husband's attention. For the sake of family harmony I stopped asking. Until the night I collapsed in the shower and my daughter, eleven years old at the time, had to call 911. Don't be like me. Don't wait until you're collapsing to say something.
Bottom line: We simply must find our voice. We must speak up. This is too important to brush off. We don't do our loved ones any favors by running ourselves into the ground. We can't be there for someone else if we can't take the time to take care of ourselves. Sure, you can try to. Lots of us do. But there will be consequences. Count on it. And those consequences can be devastating.
Advice and links to help in locating and accessing respite care- archrespite.org/…
Possibly useful info from HHS- www.hhs.gov/…
Thank you for reading. This is an open thread, all topics are welcome.