This post is part of our series in honor of ADA Awareness Month. While on a national level the focus is disability employment awareness, CKP is focusing on artists.
In this raw essay, Jackie Guttman, a member of the CKP ADA Advisory Board, writes with searing honesty about the change from being taken care of by her husband to becoming his caregiver. I’m grateful to her for daring to speak about the resentment associated with caregiving.
-Teresa Carson, Associate Publisher
WHEN THE CAREGIVEE BECOMES THE CAREGIVER
By Jackie Guttman
A sentiment I’ve heard a lot from friends – and which I share – is “this is not the life I expected.” One friend did not expect her very sociable husband to develop dementia; one did not expect her always healthy husband to die at 69 of pancreatic cancer; one did not expect her young up-and-coming husband to make bad decisions that left them having to watch their pennies in retirement. One even had her lover of three decades dump her when he became widowed; she was married and he no longer wanted a clandestine girl friend. It’s a loss of equilibrium. For better and worse, people evolve as they mature, inevitably changing the rules of the marital game. The scales tip.
In my own case, my husband was my caregiver by the time I was 30. My rheumatoid arthritis, in addition to affecting my hands, shoulders, knees and other joints, caused enormous fatigue. Howard never complained. He did the laundry; he took us for rides when walking was difficult; he did the bulk of the shopping; he didn’t cook, but neither did he expect me to produce meals. (We sent out a lot.) When necessary, he helped me dress – and still does on occasion. Over the past 25 years he has seen me through four major knee surgeries. All this enabled me to attend graduate school and work, albeit part-time. There was nothing he would not do for me, and to this day he opens bottles, jars, cans, medicine containers and recalcitrant fruit and vegetable packages.
About 20 years ago he was diagnosed with breast cancer. A mastectomy and Tamoxifen took care of it until it returned 11 years later. This time he had surgery, chemo and radiation, all of which left him somewhat damaged. A robust and big guy at 6’3” and 215 pounds, he lost 30 pounds and turned into this bald, skinny, pale-faced man. After both of his surgeries I dealt with his drains, pinning them to his undershirts so they would not pull. I sat with him as he slept through chemotherapy. Together, we laughed at post-op instructions that told him not to shave under his arms or wear an underwire bra. He gained back much of the weight, his color improved and his gorgeous white hair grew back, but since that time he has had more than his share of medical problems. He has had a hip replaced and had three spinal surgeries with extensive rehab. He has severe neuropathy of his hands and feet. Despite having normal cholesterol levels and blood pressure, he had a very mild and initially misdiagnosed stroke two years ago. At 79 he is bent over and walks with a cane or walker at the speed of a slow snail. With a diminished appetite he has lost additional weight and we are struggling to deal with that before frailty sets in. He drives, but far less than he used to. And just today, in another bitter blow, he was given a diagnosis of probable oral cancer – he who never smoked.
I, thanks to superb medical care and luck, have held my own and even improved. In many ways, and despite limitations, I am in better shape than I was 20 years ago. I do not appear ill so I am perceived as my husband’s designated caregiver. I do much of the driving, though my joints regret it if I exceed 90 minutes. When we go to our vacation home, I bring most things to and from the car. I sometimes help him with buttons, a frustrating challenge. Loading and unloading the dishwasher has been his purview for years; now I often do it. Though I’m fairly tall, he always reached the things in high places; now that has become my job, when I can do it, or we have to ask others. I drop him off and park the car, as he used to for me. I pave the way. I advocate. He is still quite strong, but everything takes him so long that I do more than I need to out of sheer impatience. We rented a scooter for him on a recent cruise. It was a godsend for him, but as I trotted alongside it I felt like it was my pace car. Doors on ships are extremely heavy and not always automatic; I became the doorwoman, pulling them open with both hands and slithering around to lean on and hold them.
Though I can and do offer emotional support, I am not a natural nurturer; he is. This is not a role I relish. I see one friend cater to her husband’s dietary needs and another one tenderly feed her husband meals. She also changes his diapers and keeps him clean. I don’t think I could do that. After over 40 years with RA, while I’m grateful that I can do what I do, I admit I resent the caregiving. As I see my husband begin to need more, I find I cannot be his keeper. That sounds heartless even to me, but I know that when I do extra lifting, carrying and driving, it takes me three days of rest and painkillers to recover. I must protect myself. I see my friend drive to Albany and back in one day for her husband’s medical needs; one way would be too much for me.
Our retirement plans included travel but it’s become complicated; we used to take long auto trips with our kids and I’d hoped to do more. Not gonna happen. Flying involves wheelchairs and, again, careful planning. Cruising ditto. We do it, but… this is not the life I expected. Ironically, I thought that I’d be in a wheelchair by now and am grateful that I’m still on my feet, but why-oh-why can’t we both be more able?
We don’t laugh like we used to; there’s too much bad stuff. However, we often tell each other how fortunate we feel, and we really do. We do not have financial problems. We do have each other, for however long. Our minds are intact, mostly. We have our kids and grandchildren. We have love.
Ah, but I do miss the old Howard. My protector is gone.