Yes, I live in Egan now. Again. After not living here since , oh, 1969 (when I went away to college), and only visiting, it’s an adjustment in many ways. Living with someone after all this time has probably been the most challenging adjustment. But not the only one. So many changes occurred over the years. Until 1993, we were a family of five: Dad, Mother, me, Phil and Kay. In the 1980s, though. . . that’s when major changes happened.
Mother’s multiple health issues really emerged in the 1980s, leading to a gradual decline and her death in July 1993. Phil was diagnosed with colon cancer at the age of 26 in 1983, and fought through that, three subsequent rounds of melanoma, and finally died in January 1996. For both of them, Dad was the primary caregiver, and Kay and I pitched in and helped when possible and as he would let us.
But after Phil died, and Dad was living alone, there was yet one change, another shift to be negotiated, one in family dynamics. Dozens of books and essays can be found on birth order of siblings and sibling relationships. In our family, Mother and Dad had lost a son the year before I was born, so in birth order I was both number two and number one. Phil was born in 1956 and Kay in 1958. Typically as we were growing up, I asserted my “#1” status; I even remember writing that on letters to my parents that I wrote from college. My brother and sister were enough younger that I really got to know them as teenagers and then adults only years after I’d gone away to college and set out on my own. By nature I am, I admit, bossy and assertive and too often impatient. And rather hot-tempered, though I’ve had to learn to control that temper over time. That’s within the family, of course. In the work-world, and with my friends, my demeanor is strikingly different. Perhaps being with family means you don’t edit yourself, that you let yourself go — and that’s not always a good or desirable thing.
Phil, as the only son, always seemed to escape any birth-order problems of being the middle child. Kay, though, was always the baby, no matter how you looked at the equation.
Without Phil sandwiched between us, Kay and I were left as a duo, separated by seven years and very different personalities. I’m snarky and too often rude to her, in the way sisters can be. We weren’t close growing up; she was always the little sister. As adults, though, we have a different relationship, and I’m the one who has had to re-learn how to be a sister, not a little mother or a bossy older sister. It’s a work in progress, and I backslide, but I work on it. I can be rude to Kay, and often am — I yell at her as I can yell at no one else. I know I hurt her at times. But I’m learning to apologize.
A great deal of this learning has forced itself upon me in the last couple of years, as Dad’s health has declined and as he has needed more and more help. I may have been the one 45 miles away, but I haven’t been the only one here helping out. She has been there too. That I was closer and had the kind of schedule that goes with teaching at university meant that I was the one who could commute, or be at Dad’s in an hour. She works at a university but doesn’t have the freedom of my former teaching schedule, and she lives about 135 miles away in North Louisiana. Kay was here, though, all the way, physically when and as she could manage, but also in support and by phone and email and text.
Just before Dad had heart surgery in 2004, he signed power of attorney to me and made a living will; she wasn’t left out — it was just that as the oldest, I got to do the heavy stuff. That power of attorney is still in force, luckily, and it allows me to assume bill-paying and to make decisions. But Kay and I work as a team now — a team that tangles and disagrees, as teams do, but a team that comes to agreement and that gets necessary jobs done.
Especially in the last two months, Kay has really made what I do possible. Being a full-time caregiver for an aging parent who isn’t able to even dress himself, or who needs someone to bring him something for pain, or needs assistance to get to the bathroom means that you sleep with a baby monitor and almost never sleep through the night without interruptions. Some nights, in fact, I never slept more than an hour at a time. Add to the mixture getting Dad to dialysis three times a week — for the 6 a.m. shift. (By the way, I am NOT an early morning person by nature, but that 4 a.m. alarm clock rang and I was up and working.) And of course there were also the days I had to get Dad to a doctor’s appointment. My own life in Lake Charles and my friends there, my house and pets? I became a drop-in visitor in that life.
Kay and I have developed tag-team caregiving. Maybe it’s more accurate to say that we are developing it, because it’s a work in progress, and one that changes as necessary. She takes the weekend shift, giving me time to head to Lake Charles and my own house. I get to visit friends, have coffee, get the mail. I usually head over on Friday so that I have time for business if necessary.
Even during the week, though, we are in touch daily — usually texting, since it’s not a good thing for her to use the phone for personal reasons unless absolutely necessary during office hours. Texting is a lovely technology. I think I text on my phone more than I talk on it.
I make a lot of decisions on my own, but mainly little ones. Never the big ones. She and I may not always agree — and I often fall into the exasperated tone of the older sister putting up with a younger baby sister, but I am trying to get over that. She is an adult, and I am grateful that I don’t have to make these decisions alone, and that she is willing to take part. I’ve heard so many sad stories about families where only one child does all of the work, and others just abandon all responsibility. That’s not the case here. It’s just that I’m always battling that older-sister mentality to recognize my baby sister as an adult who is my partner in caring for our father. And to accept that we handle things differently. Very differently.
Years ago, Kay and I watched a movie with Bette Davis and Lillian Gish, “The Whales of August” (1987). Two elderly widowed sisters live together; one is blind and really kind of bitchy and the other is gentler and a little ditzy. We immediately laughed and saw ourselves: I would be the Bette Davis sister — blind (I had horrible vision until cataracts and lens replacement) and bitchy. She would be the gentler kind of ditzy Lillian Gish sister. Well, I’m not blind, and we’re not really living together, but we are having to co-parent our father and share the same house. And share the responsibilities of decisions. “The Whales of August” pops up from time to time in my head, reminding me that Kay and I can and have laughed together. Reminding me to enjoy our relationship and differences, not fight them all the time.
Oh, we argue lately about where to move what piece of furniture, and I get angry and snarky and then apologize. I act as though I expect her to be here all the time, which she can’t be. I act as though I expect her to work in the same way I do. She doesn’t. Daily I am learning to apologize and to be grateful daily for the sister I have. She has gifts I don’t: she is gentler and softer. I have edges. She has the financial/business skills honed by years of financial statements she produced at various car dealerships and now at a university. I handle my finances with ease, yet find it challenging (if honest, near-impossible) to balance my checkbook. And now I have to handle Dad’s finances too — but not alone. I may sign off on things, but she has the knowledge and skills that our mother did and I have never managed, or wanted to learn.
A few days ago I found myself yelling over the phone about something, something I can’t even remember now. I pulled back almost immediately and told her I was just panicking and that I was working under a (self-imposed) 20-day schedule. At a minimum, Dad is in Southwind Nursing Home for rehab for 20 days; then Medicare requires that staff re-evaluate whether he’s making progress. He is allowed to stay as long as 100 days as long as he makes progress and cooperates with physical therapy, but Medicare requires constant evaluation. Consequently, we don’t really know how long Dad is going to be there.
Thus my sense of having to get the house ready in 20 days. Yesterday was Day 14. Amazing progress so far — the wheelchair ramp and porch were done in two days. I fully expect the bathrooms to be done by the end of next week and the new vinyl flooring down. I will have thrown out the detritus of years and moved furniture back in place (I hope). We’ve decided to put Dad’s bedroom in the living room, and use his bedroom as a sitting room/office with a daybed. What furniture and where the furniture goes in his new bedroom — that’s been what we disagree about. Take-charge do-it-myself Cheryl: I don’t want to run around three rooms getting everything I need; I want it there. Equal-partner Kay: leave certain pieces that I was determined to move. Final decision: I compromised; so did she. I will put Dad’s chest of drawers in the living room. I will leave the library table with photos. I will leave the handmade chest from Sweden. I will move my computer and bookcase.
If Day 21 comes and Southwind and Medicare decide to send Dad home, then the house will be ready. If on the other hand Dad stays on in Southwind for more rehab (which Kay reminds me is likely), then the house will be done and we can relax. In the meantime, I am more hyper and frantic at times as I look at the chores/tasks yet to do — and often feel absolutely hopeless. But that feeling generally passes, and I simply pick out one task to focus on and manage — rather than fall into the trap of paralysis.
No one “loses” in this — that’s not the point of renovating and reorganizing. The point is that Dad’s needs are met, in a way that is functional for us to be caregivers but that also leaves him a sense of familiarity, as well as a sense of dignity and independence. He’s already remarked that he wants to recognize the house he comes home to! Of course, once he is home, we have to re-assess what works and what needs changing. My friend Charles, who lives across the street and cares for his mother, has done this longer than we have and he is our touchstone here: he reminds us to be flexible and to expect to change things as needed.
And that’s why I am schlepping bags of trash to the dumpster and organizing the construction work, living in a house that looks like an episode of “Hoarders” is about to be filmed. When Kay comes in on Saturday, she will have other tasks that I’ve neglected. Having to juggle two bank accounts in the midst of all the medical issues and doctor’s visits and hospital stays and caregiving . . . somehow not all bills got paid on time, and I recorded checks but haven’t subtracted anything. I must learn to record all the monthly bills, not just the checks. I manage it with my own checking account, though not in the business fashion that Mother did and Kay does. I didn’t get that bookkeeping gene, and Kay has it super-strength. That’s why she will come in on Saturday and take the checkbook that I’ve faithfully recorded all checks in, use the bank statements, and reconcile Dad’s account.
My journey here has humbled me often, and learning to share has not been easy. It is, however, richly rewarding. My baby sister is an adult. I’m learning to share and to apologize. I’m learning I don’t have to do it all alone, and that’s comforting. I have Kay and my dear friends and neighbors here in Egan who make daily life possible when I have to juggle things and be two places and once, and I have friends and relatives elsewhere who are incredibly generous with their hearts and willingly put up with me.
Tag-team sisters may bicker and fight, but love makes it all possible.