a wave and saying “hi,” because Joe seemed busy with his life and I had a young family. But now? How could a neighbor not offer to help?
Back then, my children were young. Over time, we grew to love Joe, but, as I crossed our yards that first day to see if I could do anything to comfort this seemingly vulnerable older man, I had no way of knowing that I was entering into an unspoken contract to be Joe’s caregiver for the next five years. Still, I don’t see that I could have done things differently, and I wouldn’t have wanted to miss those years, even if I’d had the chance to do it over.
During my “Joe years,” as I call them, my aunt and uncle, who had no children, moved from the Washington, DC, area to be near my family. They even moved into the same apartment complex as my parents. We were all close, and my siblings and I were my aunt and uncle’s substitute kids, so this was the natural progression of life.
For a few years, life was good for all of my family elders. They even took a couple of cruises together. Meanwhile, I was busy with young children and Joe’s needs. We visited my parents, aunt and uncle, and in-laws regularly and did an occasional favor, as any adult child would do, but I wasn’t needed then as a caregiver.
Then, shortly after Joe’s death, my uncle had his first stroke, which seemed to trigger a chain reaction when it came to my family’s elder health. My trips to emergency rooms, doctors’ offices, and even the occasional hospital room rapidly increased as one by one each elder entered what was, for them, going to be years of poor health. Looking back, I can see that this was the beginning of the end for them all, even though life as such would go on for most of them for more than a decade.
This is what I call the sneak-up effect of caregiving. I handled each crisis as a unique occurrence that I needed to deal with. Yet, with each health emergency, my overall involvement grew. I was deeply involved before I understood that there was no going back, even if I’d chosen to do so. My uncle’s strokes introduced us to in-home health care. My mom’s less than stellar second hip replacement offered me one of my first experiences of personally providing daily care for an elder. It was, however, my dad’s disastrous brain surgery that truly changed all of their lives and made me the caregiver that I would become.
Dad had suffered a brain injury in the service during World War II. Still, after weeks in a coma and much therapy, he went on to lead a successful life in public health. Decades later, the injury came back to haunt him, and fluid began to build up behind the scar tissue in his brain. There were few signs of any cognitive issues when Dad saw the doctor, but still, he rightly recommended surgery to place a shunt in Dad’s brain in order to drain what would eventually become increasing amounts of built-up brain fluid into his abdominal cavity. This is a common procedure that’s often used for people who have suffered brain injuries, or who develop fluid as they age. It’s most often safe and effective. Until it isn’t.
Dad’s situation, sadly, was one of those times where the surgery, while technically “successful,” was a disaster. He came out of that operation with severe dementia, something that he’d live with for the final decade of his life.
Meanwhile, my other elders were beginning to experience health emergencies. My uncle continued having strokes. My aunt collapsed, was hospitalized, was found to be full of cancer and, within weeks, was dead. My father-in-law began to grow frail and suffer small strokes. Eventually, he had one major stroke that hospitalized him, and then kept having strokes until he died.
My mother-in-law, who at the time of her husband’s illnesses was having some cognitive issues, grew much worse. Over the course of time, I went to her condo daily and helped with meals, grooming, and other care, and kept her company. Eventually, she moved across the avenue from her condo into the nursing home where, at that time, my dad and uncle lived.
Meanwhile, my mother began falling regularly. At least once a week I would be summoned by an operator managing her emergency alert service. I’d race to Mom’s apartment, where I’d just been a couple of hours before, in order to handle the newest emergency, often by calling 911. Additionally, Mom’s overall pain worsened, and she began to show dementia symptoms.
After a few years of this routine, she too would join the others in the nursing home.
Some ask why I didn’t take one or another of my elders into my home. My answer to this question, which no one should ever ask, is this: I had five elders to care for at one time. Not only didn’t I have the type of home to accommodate the needs of that many people, but I was also trying to care for a chronically ill son who was often home from school. When I wasn’t with him, I was running from location to location to help my other elders who needed me. No one would have benefited from being shoehorned into my home when there were other choices.
The nursing home that we used, Rosewood on Broadway, was an excellent facility and near all of my elders when they needed it the most. Perhaps even more importantly, it was only two blocks from my home, as well, since I became the chauffeur for those who still lived in their own homes. Since I was still raising children, convenience was paramount. From the beginning, I was well aware that not everyone can find a conveniently located, wonderful facility for their multiple elders, so this stroke of good fortune was something for which I’ve always been grateful.
Taking into account the six weeks that Joe spent at Rosewood after breaking his hip, I spent a total of fifteen years as a daily visitor at the facility, and the staff became nearly as close as family. To this day, on the rare occasion that I run into one of the nurses or aides while out shopping, tears will flow on both sides as memories are recalled.
One by one, over the course of those fifteen years, my elders grew extremely ill and, one by one, they left us to go to a better place. I still feel them all with me, only now they are strong, free, and once again happy.
During all of those years, there was little help for caregivers. What we did was simply expected of women, and we received as much respect as a piece of old furniture. So, from just becoming a caregiver to avoiding caregiver burnout—a completely foreign concept to me—to dementia care, which the medical community had all wrong at the time, to navigating in-home care, nursing homes, and legal issues, I truly was on my own.
Now, fortunately, there are resources galore. Books, such as the one that you are about to read, are invaluable. There are online support groups, disease-specific websites, and caregiver forums. Take advantage of them all for information, as well as companionship, as you travel down your own caregiving path.
I want to leave you with a few suggestions gleaned from my time in the trenches:
•Educate yourself about your older adult or spouse’s specific condition. Disease-specific sites, as suggested above, are a godsend.
•Join a caregiver support group in person if you can, online for certain. Ideally, both. You can’t have too much support.
•Do your personal best, whether that means caring for your vulnerable friend, relative, or loved one in their home, taking them into yours, or using the services of a care facility. One caregiver’s best may be to hire people to provide all hands-on care while they coordinate things from the office, or even from a distance. Another caregiver’s best may be providing around-the-clock care in their own home. Each situation is unique.
•Don’t criticize other caregivers and don’t accept criticism from them. Most of us do what we can with what circumstances allow.
•There’s no such thing as a perfect caregiver, so do not let guilt eat at you. Most caregiver guilt is unearned. Let it go. If you can improve, find out how. If it’s too late to improve, accept that you did your best with what you had at the time. Either way, let go. Let go. Let go. Your feeling guilty won’t help anyone.
•Give
