gender roles in caregiving

I always do my best thinking in the shower. I never want anyone to interrupt me—even with the most critical news—while I’m in there. It would sort of curse the space. I told Steve long ago “Don’t ever give me bad news when I’m in the shower.” I always feel closer to the spirit world (if it exists) when water is pouring down over me, as if keeping me from the distractions of the real world. News of someone dying could wait until I had dried off. The dead can wait while I’m having my most creative moments.

I’m out at the beach and I had a hard time falling asleep last night. That’s not usually the case here. I actually needed to take a smidgen of an Ambien, which makes it hard for me to wake up clear-headed. So, getting up was no small feat, and when I finally headed to the outdoor shower, the very best place to think, I was in a near dream state. I began to realize that the old traditional female role as wife and mother has yet to be replaced by a new model to reflect the world we live in. I know as well as any of my peers that it just doesn’t seem fair to us (women). So it’s wife, mother, career woman, bread-winner—perfect profile for a “caregiver in waiting.”

Woman-Approved-1024x358How much does gender determine where caregiving responsibilities fall?

I was having lunch with a colleague this past spring and when I walked over to the table, I knew something was not quite right. Caregiver that I am, I asked him if that was in fact the case. He told me, “My ninety-four year old father woke up the other day and he just wasn’t the same person. He was quite mad, actually. I saw him one day ago and today it’s like he’s hallucinating and fearful and the guy I knew is gone. He knows me and all, but now I’m the only one he trusts.” So overnight, his father had vanished and there was a new person living in his shell. I asked if he had siblings to help him and whether or not a man of his father’s age had already needed someone to live with him. He told me “I’m the daughter.” I knew exactly what that meant.

He had always been his father’s favorite child and he’d always lived closest to him, making it easy for him to stop by every day to see how things were going. His brothers and sisters were not really that far away, but my friend had always shouldered the responsibility which overnight had become a burden. He had postured himself as “the daughter.” He was the “go to” child in an emergency; the one who got the calls whenever something was needed or went wrong. He knew he had placed himself in this role and admitted that he had not prepared himself for this development. He told me “He’s in good health. I never had to worry about him. When my mom died three years ago he went through a hard time, but things were going so well. I hired this woman to take care of him, but made sure she gave him his privacy. Now this.” Was it a mini-stroke or acute onset dementia? Or delirium? It didn’t matter—the conversation wasn’t about how to fix his father, it was about himself.

There are many stories about the amazing things mothers do for her children. Things she’d never thought herself capable of just come to her naturally in “fight or flight” situations. Children leave the nest, but they’re always someone’s child and their mothers don’t stop being their mothers when they grow to become parents themselves. The stereotypical Jewish mother is a cliché for the optimal caregiver. The thing that gets in her way, however, is that her fear and worry outweigh real need and cause. I’m an expert here. I’ve known far too many overly emotional Jewish mothers who are victims of self-sabotage. One of them was my mother-in-law; the one who lived with me while she was going through chemo at ninety for Lymphoma.

Her husband had a heart attack when he was forty-two and she was thirty-nine. She had a son who was born with an eye condition, strabismus, who until her husband became ill, had been the total focus of her care—read fear and worry. She schlepped him from one surgeon to another to find the best ophthalmic surgeon she could. No stone was left unturned. The eye condition is also known as wandering eye or cross-eyed, and the stigma of his appearance among his peers was what she feared most. Long story short, after years of surgeries she had to approve, he came of age and it was his own responsibility when at the age of twenty-one, he had his last surgery that left him blind in one eye. Her worst fears had come to pass. She was now taking care of a heart patient who had many other problems as well, and the son she had cared for so devotedly was no longer under her roof. More to worry about. Control issues galore.

Her husband suffered another heart attack a few years later and survived that one too. I met him when he was sixty-four and he died just a year after his sixty-sixth birthday of lung cancer. But Sylvia (my M-I-L) just kept wailing on. She was an unstoppable force. A year after her husband passed away, her younger son was diagnosed with Non-Hodgkins Lymphoma. Steve, his mom and myself all made the trip for the surgery. Going into the surgery, this diagnosis was thought to be most unlikely. Immediately after the surgery, the verdict was in—definitely NHL. Until the next day, when they changed the diagnosis again to some orphan disease I had never heard of then or since. Two years passed and the condition remained untreated until they decided it was in fact NHL, but now it was Stage IV. Throughout her younger son’s ordeal, Sylvia’s focus was as fine as a laser beam. She was in New York, he was in Texas—unmarried and alone. Her distress was palpable; her son weathered the treatments like a champ and has been in remission to this day. But I saw the terror for her of long-distance caregiving. Add to her distress the fact that there was no “daughter figure” in place to care for him.

Fifties-housewife-624x1024In my circumstances, I’ve been the daughter, the wife, the daughter-in-law, the significant other, the friend. My comfort level in such instances is remarkable. I haven’t decided yet whether I’m fortunate or unfortunate in that regard. It’s just the way it is. I am all woman, but I am by no means, a delicate flower. I had mother and son battling cancer under one roof for over two years. I think there were two real fights that had to do with Steve’s way of doing things vs. how Sylvia would liked to have seen them done . She’d been uprooted from her home and transplanted into mine, which was a great situation for someone in her position to be in. But, of course, she longed to be at home with her comforts and her “stuff.” Had she returned to her own home, she would have returned, too, to the more controlled posture of wife/widow vs. patient/care receiver. She might have found herself alone again, but she would have been in “her” place. I know she’s not alone in her reticence to give up her own identity, no matter how dysfunctional it might be. She was a gracious and comfortable giver. Taking was hard.

Bear in mind, when you find yourself in a caregiving role, just how role assignment has worked before and how it works now. It is a very helpful tool when tailoring how to best serve your patients. Steve’s mom wanted to be part of the solution at all times, though I know she would have liked to play a more prominent role in Steve’s recovery than she was allowed to. She was, however, fairly vocal in letting Steve know that he needed to be part of his own recovery. He, however, just wanted to be taken care of and shown what to do. Once he knew how to help himself, he’d do his best, but his best was still a little lazy for my taste. But, I knew who he was all along; there were no surprises.

This is all hindsight now and food for speculation. I am, however, very much still here, alive and doing duty as my own daughter. I keep hearing about how strong I am, and how well I’m doing. I need to remember that.

Written by Adrienne Gruberg
Adrienne Gruberg is a former family caregiver and founder of The Caregiver Space. After six years of caring for her late husband and mother-in-law she conceived of an online support space all caregivers could come to. Adrienne holds a BFA from Boston University. She founded AYA Creative in 1982, an award winning graphic design, marketing and advertising company. Her design training has helped shape the website and her personal and professional experience continues to inform and influence the caregiver centric support experience she has created at The Caregiver Space.

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