Tuesday, September 13, 2016

When a caregiver says, "I can't do this anymore!"

The New York Times has a “Modern Loveseries of weekly reader-submitted essays that “explore the joys and tribulations of  love”. This isn't exactly what I would call a love story, but more of an essay on the sometimes fragile bonds between caregiver and the one cared for.  “When Love Isn’t as Simple as Standing by your Man”, 9/9/16, is written by Eirek Gumeny who has endured a lifetime of health crises. For much of his adult life, his spouse has also been his caregiver.

Gumeny has cystic fibrosis, a progressive genetic disorder that  causes lung infections and limits the ability to breathe. He and his wife were proud of how they managed every health and life crisis that came along, believing that their love was indestructible. As Eirik’s health deteriorated to the point where he needed a double lung transplant, he and his wife faced this latest crisis with their usual grit and determination.

Then she threatened to leave him six weeks after a double lung transplant.  

As a parent of two profoundly mentally and physically disabled sons, I can relate to the spouse holding herself together until her husband was at least on his way to recovery and a better quality of life.  Holding in reserve the energy it takes for a full-blown meltdown until it can be done to full effect is not unfamiliar to me and other parents who have been through hell and high water with their disabled children. The demands on caregivers for people with complex and severe disabilities often leave the caregiver with no alternative than to seemingly do more than is humanly possible until he or she just can't do it anymore. 

Gumeny’s examination of the effects of his care on himself and his spouse provides insights into the loving relationship they had and why it was suddenly falling apart. After his initial shock and smoldering resentment for his wife’s seeming to abandon him and his ongoing need for her, he comes to realize how the bad effects on him of his double lung transplant were muted by his treatment and hospitalization. For his wife, the effects spiraled out of control:

“None of the pamphlets mention the psychological toll of waiting to die or of waiting for (even grimly rooting for) someone else to die so that you can get that person’s lungs. They don’t explain how not to feel like a monster about that. No one tells you that the physical scars are the easy ones.

“My wife, Monica, knows this all intimately now, better even than I do. While I was high on anti-anxiety medications and cannabis-based appetite stimulants, she was the one who had to remain clearheaded enough to clean up after me and keep us rolling in buckets of expensive prescriptions.

“She didn’t have the luxury of mentally checking out, the way I did. She would spend her mornings dealing with the gruesome symptoms of my death spiral, and then spend the afternoons trying to do her day job from my hospital room.”

"Every problem my waning health presented Monica had to handle twice over, worrying about me and worrying about her life after me if it all went sideways. Every time someone told me I was going to die, she had to sit there silently, taking it in.

“I could petulantly shrug off all the dire news and flip to the Cartoon Network, but she didn’t have that option. She had to deal with the information, the issues and the repercussions, acting as nursemaid, housekeeper, chauffeur and lawyer for me — the man who was supposed to share her life, not consume it.”

Monica did return, but, says Eirik, “Our love may be indestructible, but we sure as hell aren’t.”


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