This is part six of a series about Carolyn who was admitted to hospice with Parkinson’s disease. In part one I wrote that Carolyn and her husband, Charlie, could have survived and thrived in Alaska, “The Last Frontier”. Charlie stated, “I married one tough cookie. She is tougher than a pine knot.” But Charlie is a pretty tough character himself. He reminisced, “When we were kids we would have fist fights just to see who could win. And in my previous life I wasn’t a troublemaker, but I would oblige anyone the best I could if they came looking for it. I came home many a time with my nose as flat as a saucer. I had two surgeries on my nose and Dr. White held up his fist and said, ‘you’ve had too many of these stop at the end of your nose.’” Carolyn interjected, “That’s because he put his nose in too many places where it didn’t belong”. I love Carolyn’s barbed wit followed by her self-satisfied grin; priceless!
But we all have human limitations don’t we? That’s why the Medicare Hospice Benefit provides five nights of “respite” every month. Patients can be admitted into our Hospice Inpatient Center just to give the caregivers a vacation from caregiving. Charlie admitted, “Before I used a respite the first time I was ready for the fork. I was done. I was done for. There’s no way I could have taken care of Momma at home this long if it wasn’t for the respites.”
But even with the monthly respites, the wear and tear of eight years of progressively demanding caregiving is taking its toll. Charlie admitted, “I don’t know how much longer I can take care of Momma at home, but I’ll do the best I can by her for as long as I can.” What makes it even more challenging is that Charlie has a plethora of medical problems of his own; kidney disease, a pacemaker, his ankle needs fused, both knees have been replaced and he was told he desperately needs back surgery. But he told the orthopedic surgeon, ‘There’s not going to be any surgery doc’, who will take care of Momma?
Caregiving and chronic illness also exact an emotional toll. Charlie admitted, “We’ve grumbled more at each other over the past two years than we have during the first forty-seven years of our marriage. We never had a cross word until about two years ago. I get really impatient with Momma and say things I shouldn’t say; and I feel terrible afterwards.”
I shared the following story with Charlie about one of my coworkers who will remain anonymous. I admired her; and her calm even temperament made me want to be a better person. But one day she lost it and was ventilating to me about one of her patients. She exclaimed, “They drive me crazy!” She became upset with me because I was smiling; and then I suggested, “I bet you thought you were a better person than that didn’t you? Well, you’re not.” She replied, “Gee thanks”. I explained, “Just accept it; you’re just a human being like the rest of us.”
I came to this same harsh reality about myself when I repeatedly ‘lost it’ during the thirteen years of shared caregiving of my father-in-law. So I suggested to Charlie, “I bet you thought you were a better person than that too; but you’re not.” We talked about how we can unrealistically and unfairly expect more from those close to us, and from ourselves, than we do a human being.
John Bunyan (1628 – 1688), the author of “Pilgrim’s Progress” who was imprisoned in England for twelve years for preaching the gospel wrote, “Oh, It is a goodly thing to be on our knees with Christ in our arms before God. I hope I know something of these things.” (“Grace Abounding to the Chief of Sinners”). The guilt and shame of our human inadequacies and failures can drive us to vindicate and defend ourselves; drive us away from God and others or drive us to our knees. But like John Bunyan I’ve found that, “It is a goodly thing to be on our knees with Christ in our arms before God”, crying “Lord, I thought I was a better man than that, but I’m not. So please have mercy on me; help me”.
After my open-heart surgery, my coworker, Sheila visited me in the hospital and gave me a piece of good advice, “Loren you are going to be mean and grouchy to Susie (my wife) and when you are just say ‘I’m sorry’”. I responded, “I’m not going to be mean to Susie!” But it wasn’t long before I found myself saying, “I’m sorry”. I mistakenly thought I was a better man than that, but I wasn’t.
“We pour out our miseries, God just hears a melody; beautiful the mess we are the honest cries of breaking hearts are better than a hallelujah. Woman holding on for life, a dying man giving up the fight… Tears of shame for what’s been done the silence when the words won’t come are better than a hallelujah sometimes. (“Better than a hallelujah”, Amy Grant)
Loren Hardin is a hospice social worker at Southern Ohio Medical Center and can be reached at firstname.lastname@example.org or at 740-356-2525