Recently, I’ve decided that there’s a club no one invites you to join, but that you join without realizing: the caregiver’s club. Even though you intuit that one exists, there’s no real way to anticipate how it operates, not exactly, nor how it changes your life.
Most of my life, I think, I knew that I would end up being the primary caregiver. I was, after all, the eldest. I wasn’t married. My career teaching at university meant that I lived closest to our parents. My brother lived in Florida. My sister lived in Natchitoches, in north Louisiana. I also had the most flexible job. I didn’t feel trapped. I didn’t question it. I was happy to fill that role.
Mother was ill for a long time; Dad retired early, at 60, and took care of her. They had some good years before she became an invalid, with a wheelchair, and on dialysis. For her, I was the fill-in, for the times when Dad and Phil went hunting out in West Texas. Of course, I was also there many other times, and by the 90s it felt as though I began every semester with Mother in the hospital in Lafayette. I learned how to read her blood sugar, how to get her into and out of the wheelchair, how to tell when she was probably having a small stroke, etc. My knowledge of medicine grew around her. Now I realize that her health really became problematic when she was only in her 40s, while I was teaching at Lamar University in Beaumont. First was the blood pressure, then the brittle diabetes, then the congestive heart failure, then dialysis. After a while, her medicines cost about $1500 a month — in the early 90s. Yes, I learned a lot, especially to be grateful for solid insurance. I was the helper, the one who asked questions and took more notes.
But I knew I was only second-best; that was clear. It was Dad she wanted, and he wanted to be there with her. I don’t think I really knew just how close they were until then. Somehow you don’t see your parents as anything other than, say, your parents. Yet there was that one time in the hospital in Lafayette when I saw them look at each other and realized that they were still the young couple who’d fallen in love despite the odds of different religions and married in 1948. I could help Dad out, and did. But the job was his, and not mine, other than temporarily. When Mother died on July 30, 1993, Dad and Phil were with her at the hospital, and I was in Egan; Phil had come in from Florida only the day before, and I remain convinced that Mother waited for him. She hadn’t talked in several days at that point, but she was aware of us with her, and she wouldn’t leave without Phil being there.
I watched Mother and Dad take care of Phil, my brother, when he had cancer the first time, at 26. He recovered, eventually moved to Florida, and was later diagnosed with a melanoma on his arm; that traveled to his brain, and then his spine. By the time he was terminal, Mother had died. Dad was once more the primary caregiver while Phil was in M.D. Anderson Hospital in Houston in fall 1995. I was there every weekend, from Friday afternoon to Sunday evening, and on every holiday. My sister, Kay, was there when she could be. Again, I was closer and when my last class was over, I was on the road every Friday. Dad slept in the pull-out chair; I slept on the floor. If I could convince Dad to take a weekend off and go to Egan, I got the chair. Occasionally I stayed in my cousin Jim’s condo; that was a real treat at Thanksgiving and Christmas. Phil was released two days after Christmas and came home to Egan, where we had hospice. He died on January 4, 1996, with Dad and me and Phil’s fiancé, Darcie, at his side.
While he was at M.D. Anderson, I became familiar with yet more medical jargon and helped daily when I was there as nurses and Phil’s primary oncologist cared for him through one procedure after another. For the first time since he was a little boy, he called me “Cheryl Lynn,” and I had to be there right at the bedside holding his hand most of the time. Together, Dad and I helped take care of him, but during those weekdays while I was teaching, it was Dad who bore the heaviest load, because he had to be there alone.
Dad was such a vital person, independent and stubborn (I get my stubbornness honestly). He went on dialysis when he was 80 or 81, and drove himself there 3 days a week. Well into his 80s he drove to East Texas almost every other week to meet his sister, Mildred (she’s 18 months older) so that they could mow the large yard and part of the pasture at the family farm. I worried, but there wasn’t much I could do, frankly.
He was determined not to give up driving, and that was difficult for him. Yet his family practitioner took that chore out of my hands, and when she put Dad on oxygen, that effectively ended his driving. While I was still working, I relied on a close family friend to drive him to dialysis. I spent a lot of weekends there, and eventually did more commuting to work than commuting to Dad’s. Kay came in too on weekends, and spent time helping out.
We were fortunate, really, that we enjoyed each other. We really liked each other. Spending time together wasn’t a chore. And I needed to remember that, because there were still times when I was so tired and exhausted that I was snappy and bitchy. (Just ask Kay! We were each other’s “safe place,” and could unload with each other, then apologize, and it was all okay.)
So as Dad’s ability to live alone ended, I “lived” with him much of the time and commuted to Lake Charles, spending weekends at my own home when Kay came down. She and I laugh about tag-teaming, but that’s exactly what we did. My last semester and a half of teaching was spent doing a lot of driving, but it was no hardship. I got tired at times, and learned to treasure sleep, but was so grateful that I was able to work out the responsibilities that way.
When I retired in May 2011, I spent most of the time in Egan. Dad was still pretty mobile and relatively stable. He was losing weight. He was more unsteady on his feet. While I was gone on a trip in December 2011, he got tangled in his oxygen cord and fell, and that was truly, I think, the beginning of the final slide. By the end of December, he couldn’t really walk without a walker AND someone helping, but that was only for a few steps.
I bought all new clothes for him so that I could dress him — sweatpants and pullover sweaters. I fed him too. By the time we finally got a diagnosis for his problem — an L1 compression fracture — he was dependent. His surgery seemed to help, but he went to a nursing home for rehabilitation care. In the two months he was there, I got the house renovated for him.
He came home and had a good first week. The second week? Not very good, and he died at home just about two weeks after he’d returned.
He had been such a role model for Phil and Kay and me all of our lives, and was such a generous, loving man. His own role as caregiver for Mother and Phil was unstinting and without complaint. He gave joyfully of himself. I think that by the time it was my turn for that full-time role, I had the way made easy. I only hope that I lived up to my role model’s example.
Caregiving requires attention. It demands much. I don’t know when I’ve ever been so tired and exhausted. Yet it can also be a blessing. Time together, laughter, talks about so many things. I would do it all again, even knowing the outcome. While I was living with Dad, I spent time online looking for stories by other caregivers, looking for articles about others like myself. There are a lot of us out there, and not everyone has the flexibility I had in my teaching. Not everyone has the support group. The club is huge, my friends. Some of you are in it too, and we’ve talked about it. Just as caregiving became my life, it continues to be part of me even though Dad has died. It remains part of the way I live, defines how I see things. How I appreciate things — family, friends, home, pets. Even — maybe especially — time.
It’s been over a year since Dad died. For the rest of the year afterwards till 2013 began, I think I hibernated. Sometime in December 2012 I seemed to wake up. The next six months have been a gradual recovery of my own life — or maybe a rediscovery, a re-invention, even.
At times, I’ve felt absolutely lost, without purpose. So much of my life had been focused on teaching, a career I cherished and loved. And then my life centered on taking care of Dad. The second focus overlapped so much with the last months of teaching that I didn’t really have a transition period. I simply moved into caregiving full-time. But after? Neither focus was there; I was cut adrift and felt it.
I am slowly finding myself again, learning to make a life again. Rediscovering my own home and finding the pleasures of it once more. I’ve realized that I have never simply lived in this house without working. Now I live here in a way that I never did before. Schedule? No, I don’t have one, but I’m setting one for myself. Defined not by someone else (not most of the time) but by me and my interests.
In January 2013 I began (finally) the renovations on my home in Lake Charles. For far too long I’d not been able to do what needed to be done. But suddenly, it seemed, it was my time — and the kitchen project took off. Progress there made me feel as though I hadn’t simply abandoned it to fall apart. I got the porch and brickwork repaired. The kitchen’s not complete yet, but will be before too long. And I don’t need to feel frustrated when it doesn’t happen immediately.
When I left for Greece in late April, I took a break. Friends came to visit there. I spent a lot of time reading and simply taking care of my apartment. I went to London for a long weekend. I went to Istanbul for a few days with a friend. I visited with friends in Greece, had coffee, went to the movies, did the shopping. And the last three weeks I was there I participated in a poetry workshop. The companionship, the daily writing — what a treat. The last dam of the writer’s block that has characterized my life for a year has (fingers crossed) been broken.
I know I’ve written about this before, but I am reminded of it all at the oddest times. My cousin Mike sent Kay and me some photos he and his wife had of a few days of a trip to Lake Sam Rayburn; I’m not in either photo. But what a treat to see Mother and Dad and Phil and Kay (and Mike and Sis) enjoying themselves. Even now, I get a bit teary thinking of the photos. Mother is there sitting with Dad; they’re laughing. Phil is clearly telling a story in the photo of him in the boat — he’s grinning and has his arms stretched out as though to say “it was THIS big!”
To see them healthy and happy and laughing is to remind me that the caregiving has only been a blessing, truly.