I have many retired (as well as non-retired) friends and acquaintances who are and have been caring for aging parents, but my own first-hand experience had been very limited until 2009. Shortly after the beginning of the year, my father-in-law began a series of 33 radiation treatments in an effort to combat his lung cancer. We drove him to the hospital for most of those treatments, and to a variety of other associated medical appointments.
Still, he was, and is, living independently in a senior retirement community, so our responsibilities in caring for him, especially mine, were very limited. A physically imposing former pitcher in the Dodgers’ organization, he remains tough as nails and celebrated his 79th birthday this month.
On the day after Christmas in 1995, my father, who had been mostly unconscious for days, opened his eyes long enough to look at each family member – we were fortunate enough to all be present – and then "slipped the surly bonds of earth to touch the face of God," to borrow John Gillespie Magee, Jr.’s elegant phrase about the experience of flying. Like my father-in-law, my dad had been a heavy cigarette smoker for many years, and although he had given them up 20 years earlier he ultimately developed emphysema.
My folks were living in Colorado Springs at the time, while we were Denver residents and my brother and family lived farther away in the mountains, so my mother provided virtually all of my father’s care until he started receiving home hospice visits.
Near the end of that decade, my mother-in-law appeared to be getting more forgetful. At first we were amused by the fact that she would leave multiple voice mails on the same subject in a day, figuring that, as a multi-tasker before that term came into vogue, she simply had too many things on her plate. However, during her visit to her sister and brother-in-law in Arizona, they became so concerned that they took her to a doctor to have her memory and awareness of current events tested; the results were not encouraging. My wife and I had our own up-close look at the situation shortly thereafter when we accompanied her mother to a doctor’s appointment, during which he asked her a series of questions, such as "Do you know what day it is?" Instead of replying, "It’s Wednesday, May 10th," she attempted to explain to him the meaning of "day," and we knew she was in serious trouble. We were told that she was likely suffering "mini-strokes" and that there were clear signs of dementia.
From then on, the decline of one of the kindest, most considerate people I’ve ever known was astonishingly swift, and within a few months she had to be placed in the locked Alzheimer’s unit of a complex which featured both assisted living and full nursing care. Within months, it became painfully obvious that she no longer knew who we were, and in less than two years she was gone.
Some time on the evening of November 10, 2009, my mother fell in her apartment in Colorado Springs and was found unconscious the next morning. She was rushed by ambulance to a hospital emergency room, where the emergency medical technicians estimated that she had been unconscious for 10-12 hours. Our daughter got there first and advised us to come right home from San Francisco, where we had just arrived on a brief business trip that was scheduled to be followed by a week of R&R in Monterey. By the time we got there, my mom had been transferred to the cardiac unit, due to such symptoms as congestive heart failure and an irregular heartbeat, and they had to keep giving her shots in the stomach to prevent blood clots…OUCH! She was very disoriented and had a variety of other problems consistent with severe dehydration.
Mom recovered sufficiently to be transferred to a residential rehabilitation facility on the night of the 15th, and was there for 22 days, receiving both physical and occupational therapy. She was able to get off oxygen quickly, and, using a walker for the first time in her life, she probably put in more miles going around the inside of the rehabilitation center than any other patient, but it was apparent from talking to the doctors, nurses and therapists that, just short of her 92nd birthday, my mother’s days of living independently were over.
Getting the two-bedroom apartment that she and my dad had moved into more than 25 years ago cleaned out and ready for inspection by the apartment building’s manager was a nightmare. By the time it was over, the effort had involved our daughter, my brother and his wife, our nephew, and one of our oldest friends, in addition to my wife and me. In stark contrast to me, my mother had always been neat and tidy, but it was obvious that this particular characteristic had deserted her in recent years.
My wife and our daughter were the first there and attempted to collect all of the jewelry, paintings, other art objects and important papers. For most of my mother’s stay there she had her extensive jewelry collection stored in a very logical manner, with appraisals, photographs, notations, etc. That was no longer true – one diamond earring could be in her jewelry case in her bedroom and its mate could be on a table in the living room, if it could be located at all. And her important papers were scattered everywhere, buried among literally thousands of unneeded records, such as years-old credit card statements and bills for utilities, phone service, etc. I hadn’t seen that much paperwork since – well, since the last time I was in my study in Denver.
My brother and his wife took the next "tour of duty," packing up virtually everything except mom’s furniture over the course of three days. During their stay, they took something like 47 bags of "stuff" to Goodwill. We jumped in again at that point; we loaded and I drove a 10-foot rental truck full of mom’s furniture and other items to Denver; the same drill took place a few days later, but this time with a 16-foot rental truck.
One of our old friends who still lives in the area came down and helped us load the second rental truck. We found, to our chagrin, that my folks’ eight-foot sofa would not fit in the elevator – we have no idea how they got it into the apartment in the first place. Bill and I (fortunately for me, he was a linebacker in college) horsed the sofa down seven flights of stairs (my folks had lived on the penthouse floor). By the time we got the sofa into the truck, we were sweating profusely, on a day that was freezing cold, and we wished we had simply dropped it off the balcony and swept up the pieces.
Meanwhile, my wife had by far the hardest task – cleaning the apartment. The refrigerator looked as if the food had rioted and had tried unsuccessfully to escape; there were stains that even the crew at CSI wouldn’t have been able to identify. It took her well over two hours to clean that single-door refrigerator, after which she scrubbed both bathrooms, the cook-top, the oven and the dishwasher, all of which looked like they were victims of a fraternity party. My wife then sorted through four closets chock full of very nice clothes, most of them untouched since my mom stopped working (at the youthful age of 85). The end result was another bonanza for Goodwill.
My mother had made jewelry for years, but once her eyesight started deteriorating, she would drop pins, needles, buttons, beads, sequins and similar objects onto the carpet, and then couldn’t see well enough to find them. Our sturdy vacuum cleaner roared into action, but was soon whimpering from the beating it was taking from the metal objects; it then overheated and shut itself off for the first time ever, apparently after having a near-death experience.
Between working on the apartment, visiting my mother at the hospital and at the rehabilitation facility, and picking up responsibility for her medical, financial and legal matters, we spent all or most of 23 out of 26 days in Colorado Springs, which meant canceling all other business and personal plans. The relatively easy part was getting her moved to Denver. Fortunately for us, she "passed" her personal interview and evaluation with the assisted living coordinator, since we had no "Plan B."
She now has breakfast, lunch and dinner in one of the dining rooms, where they have assigned seating, a great idea in an assisted living facility, and she is getting to know the four other women with whom she shares a table. She also has access to snacks on a 24-hour basis, so we know she won’t starve. And there are lots of activities, including exercise programs of various kinds, bus trips to Wal-Mart, Red Lobster, and scenic areas in the nearby mountains. It’s a major change for her from living independently for all of those years, but she seems to be getting more comfortable all the time. Undoubtedly the number one plus for us is that we know she is safe when we are out of town, or even out of the country; the assisted living facility is on a hospital campus, so if any resident has an emergency, they can be taken to the hospital in not much more than a blink of an eye.
My mother’s fall caused us to do a lot of second-guessing about why the family had let her continue to live on her own. There had been clear signs for several years that she was slowing down. We had finally convinced her to get hearing aids, but even with them in she seemed able to hear only if someone was looking right at her, and her personal grooming habits had gone from fastidious to casual, at best. Her apartment was so cluttered and unkempt that there was often no place to sit when we visited her. She was no longer able to cook for herself other than frozen dinners in the microwave, and the housekeeper our daughter hired wound up doing her grocery shopping and taking her to medical appointments. She could be sharp as a tack in the morning when we talked to her, and then hang up on my brother that same evening because she didn’t recognize his voice. There is apparently a term for this phenomenon: "sundowner syndrome."
We had tried on numerous occasions to convince my mother to move from Colorado Springs, her home since 1955, to Denver so that we could be sure she had whatever she needed, but she insisted that she was still able to take care of herself and that all of her friends lived there. In point of fact, she had outlived most of those friends and the few who were left were in no shape to socialize with her. But, understandably, she did not want to give up what she saw as her "independence," so we would have had to get a court order to take over her affairs, and she would never have forgiven us for that.
Before my mother’s fall triggered the series of events which culminated in her move to assisted living, I sympathized with friends and relatives who had taken on the care of aging relatives, but I had no idea how much work and stress was involved. I know people – not all of them retired – who are dealing with such issues with both parents at the same time, and couples who have to care for three or even four elderly parents simultaneously. We admire them greatly but we wonder where they get the energy, since we can’t remember ever being more tired, physically and mentally, than we have been during this period
Thanks largely to ongoing medical advances, people are living longer. That means, particularly for us retirees, taking care of elderly parents and other relatives, sometimes in multiples, is more likely to be the rule than the exception. It is comforting to know that we are by no means alone in going through this process, and it is good, and sometimes vastly entertaining, to share stories with friends about these experiences. Those who are involved in caretaking to one extent or another will have to take even better care of ourselves, and, for some of us, to improve our time management – which for me is like teaching a pig to sing – in order to make time for friends and other family members, work (paid and/or as a volunteer), leisure activities, education, and other aspects of life.
There are, as we discovered, lots of community resources out there to assist caregivers, although the number and variety is probably dependent to a significant degree on whether one lives in a big city or a small town. If your parent or elderly relative continues to live alone, it is often possible to get "Meals on Wheels" and/or groceries delivered, respite care, transportation to medical appointments, and other necessary services.
There is also an increasing number of facilities which provide a range of options from independent living to assisted living, and on to full nursing care, including locked units for persons suffering from Alzheimer’s or dementia. A number of these facilities are located, like my mother’s, on hospital campuses, which provides an extra level of comfort for residents, and for caretakers, in case of an emergency. As for cost, if you are moving a relative from her/his own house/apartment to a facility like this, you may well experience "sticker shock." There is typically a base price for an unfurnished apartment, which includes three meals a day, a variety of activities, and transportation to medical appointments; the cost goes up from there depending on the number of services a resident will need.
Best of luck to everyone who is, or will be, caring for aging parents or other relatives or friends. Helping them may also help prepare us to deal with our own futures.