Novelist | Singer
This is the first part of a multipart series on caretaking for a loved one. I will delve into several aspects of caretaking and why it is one of the most important things you will ever do in your life.
Caretaking is both a blessing and a curse. It sets up the potential for a relationship to either flourish or fester. Success or failure depends on both parties—both the caretaker and the one being cared for.
Caretaking can be a roller coaster experience. It is exhausting. It is rewarding. It is sometimes scary, sometimes tender, sometimes seemingly never-ending, depending on the situation. For context, I want to share a little about the caretaking I have been part of. I will never compare my experience with that of someone else. Our caretaking episodes did not last for years—only months. Everyone’s situation is unique. Some caretakers are trapped along with their patients at home. Some have much more freedom. Some people have help. Some do not. My current situation with my husband is relatively easy—I can leave to go shopping, walk the dog, work out, see friends, etc. It is mostly he who is homebound. This isn’t a chance to brag or lament about our situation. I want to talk about how I approach caretaking to avoid the exhaustion, resentment, and depression that can occur, and to help you be the best caretaker you can be, and positive and nurturing in your situation. Obviously, more difficult and myriad situations do exist—there are also examples of elder and spousal abuse due to resentment and inadequate support in a caretaking situation.
Mostly, I want other caretakers to know they are not alone and to reach out—there are options for you, both in the regulation of your time and in professional assistance available to you. I would love to open a discussion among caretakers.
To set the scene, a little about myself and the caretaking experience I have had on both ends of the spectrum.
My Story
My experience with caretaking started with me as patient. When I was 51 years old, I herniated a disk in my lower back—L4/L5, the classic weak point of the human spine. The pain I endured from the start to the “end” (I say end, because I’ll never be the person I was before herniation or surgery) of my more than 3 years of chronic pain is something I would wish for no one. We ( I say we instead of me because all parties are affected by this and should function as a team) avoided surgery for almost a year, until both my husband and I surrendered to the knife, as all other options, steroid shots, physical therapy, opioid drugs (terrifying in their effect) all failed to provide a solution. The pain continued well beyond the surgery—debilitating pain forced me to take Oxycodone that dulled my brain and destroyed desire for social connection. That was 12 years ago, and today, I am “good.” I know what I can and can’t do or I’ll pay for it. Most days, I am “pain-free,” although if I concentrate, I realize that I’m always in pain. Miraculously, that kind of underlying pain is something that the brain in all its power is able to mask. As one of my friends who has gone through numerous back surgeries says, “It’s amazing what you can get used to.”
If not for my heroic husband Al, this problem may never have been solved. Due to the pain, I was incapable on my own to research options, set up appointments, shop, cook, eat correctly or even shower on any kind of schedule. He systematically dragged me from doctor to doctor, comforted me through horrendous crying jags that left me exhausted and miserable, fed me, helped me get dressed, in and out of the shower, and stroked my hair until I was finally able to fall asleep from utter exhaustion. I shuffled from the bed to the sofa to the toilet to the sofa and back to the bed. He hovered over me with steady conviction, but I was unable at that time to fully recognize his dedication. I credit him to this day for my recovery and return to a normal life. I can even ride a horse. I will pay for it the following day, but, I can ride a horse.
Only four months after my spinal fusion surgery, my mother, who lived in Indiana at the time, went through hip replacement surgery. She was 88 years old. I wasn’t able to travel, but kept in touch with her rehab unit on the phone. I also talked to Mom, and she sounded okay, if but a bit confused about what was going on. After a couple of weeks, they dropped the bomb shell that she could no longer live alone, so on Labor Day weekend, two months after her surgery and six months after mine, I flew to Indiana to assess the situation. I could tell within 20 minutes that they were right—she could no longer live alone. Whether it was the anesthetic or whether it had been in motion prior to the surgery, she had gone right over the cliff of cognition into what was eventually diagnosed as Alzheimer’s. Her apartment was disheveled—the normally organized household was a jumble of supermarket flyers, bills, and junk mail. She was still her cheery, happy self, and looked exactly like my mother, but her new demeanor was tentative and confused. She hallucinated about people who weren’t there, some of whom had died years before.
We brought her home to live with us, and I agonized constantly about how long this could go on. Everyone in her family lived well into their 90s, and she was only 88. As it turns out, she was with us only five months. Those were the best five months I ever spent with Mom.
Fast-forward to 2024. My now-84-year-old husband gets a serious infection caused by a mere blister on the ball of his foot that went unnoticed for who knows how long. I am 64, 20 years his junior, and once again, I am in the caretaking roll.
I’m the one driving him to doctor’s appointments, getting him into a shower boot and Saran wrapping his arm to protect the PICC line–that blasted catheter into which I plunge saline flushes and plug antibiotics to kill whatever strain of bacteria has haunted us for 3 months now. He is frustrated and tired of inactivity, which is a blessing in the end if you think about it. At least he isn’t enjoying being a slug. His temper is short and I understand why. Thankfully, he is not in pain, just trapped in a Darco off-loading boot which may reduce the load on the ball of the foot, but it is a tripping hazard as far as I can tell. I guess if it were comfortable to walk, he’d be walking a lot more. We’re administering IV antibiotics twice a day at 12 hour intervals. The visiting nurses are tremendous. One said the IV antibiotics was easy, and she was right, once you get used to plunging stuff into your loved one’s arm. But it was pretty intimidating at first.
So I have been in both lanes—the caretaker and the patient. Neither is desirable. Given the choice, I would rather be the caretaker than the patient, as would most of us given the option. But let’s face it—caretaking—no matter how long it lasts, is a challenging role. Senior Care in Gloucester came to my aid when I brought my mother into my home, and they sent me to an Alzheimer’s conference, which was a profound experience. There, I learned that 30-40% of caretakers die before the people they are caring for. While it is true that many patients are being cared for by spouses in approximately their same age range, it also speaks volumes about the stress incurred by the caretaker.
The patient becomes the focus out of necessity. The caretaker’s needs assume a secondary role, and life becomes a dull repetitive program of life’s most basic functions—waking, toileting, showering or bathing, eating and if possible, socializing with others outside the walls of the house. The caretaker battles frustration and resentment, tethered to home by their charge, depending on the mobility of the patient. The caretaker can slip into power mode, demanding complete compliance from the patient. There is the possibility of neglect or cruelty, in which the patient becomes a victim.
I have no particular expertise in the arena of caretaking—no degrees or licensing, no specialized training or research, though I have been in both roles as patient and caretaker. I only hope to share my stories: about my experiences as caretaker and patient, the challenges, successes, failures. I want to connect with caretakers and patients to tell them they are not alone, though their role often leads to isolation and loneliness.
Thank you for joining me. And remember, if you find yourself entering this caretaking role, think of it as a wonderful opportunity, because it is.
Look for my next submission: It’s not about Me, but I’m Important as well.
I am a caretaker as well. We have a mere 14 years age difference. I can’t leave John alone overnight. He’s had a few falls when I wasn’t home(two required a hospital stay after). And several when I am home. I do ALOT. Luckily we can still get out and that helps a lot.
I will wait and see how this “group” develops.