Do You Want to See God Laugh?
One evening I picked up my folks to take them out to dinner. I’d last seen them only a couple of days earlier and we’d talked on the phone daily since then. Dad had been lucid and I’d not been alerted to any problems. We had an evening of good food and laughter, but afterward, I was troubled by the slowness of Dad’s gait as he walked from our table to the door of the restaurant. Although he was moving at the speed of molasses, my father seemed unaware of anything amiss. When we got to the car, I watched as he slowly and deliberately inched his way onto the seat.
I asked him specific questions about any recent events that might have triggered this particular change. He demurred and seemed confused. I wasn’t sure how reliable his memory might be, so I continued inquiring until he volunteered, “Maybe this has something to do with the fall I took in our bathroom a while back.”
“What fall? You took a fall in the bathroom? How long ago? How come this is the first I’m hearing of it?” I sputtered out, trying to ask four questions at once and sound patient all at the same time. “You know. When I fell and hit my head the other day,” he answered.
Apparently, Jack had slipped and fallen in their bathroom and then “neglected” to mention it to me or to anyone else on the assisted-living facility (ALF) staff. It looked like Dad’s fall had occurred nearly a month before! Upon questioning, he recalled hitting his head on the way down as he tried unsuccessfully to break his fall. He said he’d told Mom right after he’d pulled himself up from the floor in the bathroom. Likely she’d forgotten about the event soon thereafter. Generally speaking, she was no longer a reliable person to prompt Dad to remember things, since she didn’t recall that much herself.
I tried to underreact—that technique described earlier that has worked for me repeatedly. I didn’t want to chide my father, like he was a bad child for not informing a more appropriate person about his fall and head injury, someone with a better memory, than Mom. But I would have appreciated not having to wait a month to hear about and then respond to the potential repercussions of this fall. My being able to react quickly to things like the fall he’d taken was a big part of why I’d brought my parents closer in the first place. Hadn’t I planned on being able to keep more current with their lives here?
What happened to that portion of our POPlan? Now, even with my parents living closer, I still felt out of the information loop. I was beginning to see that neither the short distance between their home and mine nor the small amount of time between visits would ensure I’d always be timely informed about everything POP. What were the implications of that, I wondered?
In the morning I arranged for the earliest possible visit with Dad’s geriatric physician, since I recognized that a blow to the head of an elderly man could be highly problematic. After a brief exam, his doctor had me take Dad directly to the ER to undergo brain scans. Those revealed a cerebral aneurysm, a weak or thin spot on a blood vessel in Dad’s eighty-nine-year-old brain. An aneurysm can put pressure on a nerve or brain tissue and even rupture, spilling blood into the surrounding tissue. This one was growing so rapidly that it now threatened to pressure his brain and push it through the skull. Dad might have had the aneurysm since birth, I was told, but the more likely scenario was that this head trauma occurred during the recent fall. It all sounded unbelievably scary.
Dad’s doctor and I quickly consulted several brain surgeons. They advised that unless we allowed him brain surgery, Dad’s aneurysm would continue to protrude into the skull and end his life. I was told there were three risks associated with Dad’s having brain surgery. The first involved the anesthesia, the second was related to whatever injuries he might suffer from the invasive procedure, and the third involved the challenges of brain surgery and recovery on a man his age. I was told to bring a copy of his do-not-resuscitate (DNR) orders. “Just in case,” the doctors said.
I was told that Jack would also need extensive postoperative rehabilitation so he could relearn how to speak, eat, swallow, and otherwise function. Unfortunately, their postsurgical prognosis wasn’t much brighter. The doctors weren’t certain he could recover successfully, as no one yet knew what his aging brain’s limitations to learn “new things” were, how long it might take him to recover functioning, or if he would he ever “come back.”
I was filled with questions, and there were few definitive answers. No one really knew. There were simply too many unknown factors. What I did know was that I had no other viable choices, since my father needed the surgery to survive and he needed it now. So, with a heavy heart, I authorized the doctors to shave his head in preparation for brain surgery.
I wanted to concentrate completely on Dad at this time, but I couldn’t because, as any parent with more than one child knows, part of us needs to attend to the “other kids,” even during an emergency. In my case, Mom also desperately needed me to be there for her. As might be expected, Lillian too was suffering from shock and filled with her own fears and confusion while we were hearing about Dad’s condition and proposed treatment.
Mom’s reliance on him had been part of their ongoing dynamic—he was the oldest son in his family and she the youngest child—and this reflected how they worked out parts of their relationship. Since Jack’s retirement, they’d done just about everything together. And by this point at the ALF, my parents had been spending most of their waking hours in the same room together. They expected to eat together, take walks together, watch the same television programs and be with each other all the time. If Mom needed something opened, Dad was there to open it for her. Even if Dad were hungry for lunch, he’d wait until she was ready to go with him.
During our endless wait for the surgeon to emerge with news of the operation, the woman who’d loved her husband for over sixty years and their only child agonized, sitting in limbo. Anyone who has had to sit in a hospital while a loved one undergoes a complicated and dangerous procedure can appreciate the agony and the fearful imaginings we were experiencing.
I thought of every possible concern. How would Dad’s fall impact the rhythm my parents had created in their marriage and now at their facility? What would it be like for Jack to be staying alone in some rehabilitation center after his surgery? Would he be lonely? Disoriented? Would Dad miss his wife and be unable to sleep? Would he ever learn to walk and talk again, or would he spend his remaining days without Mom in continuing decline?
I further worried how Mom would survive her time without him. Would she continue to attend the activities she enjoyed—her chair yoga classes and the bingo games? If Dad remained away long or didn’t live beyond the surgery, how badly would Lillian’s anxiety interfere with her functioning? Would she make new friends? How much additional attention would Mom need during Dad’s rehabilitation? And on and on.
When the surgeon finally emerged hours later, his demeanor was measured and calm. His tone reminded me of Sgt. Friday from the old Dragnet TV show: “Just the facts ma’am.” I listened to him say he’d successfully removed as much as he safely could and that Dad should make a “decent recovery.” I had just begun to breathe more freely when he added: “You know, Jack’s brain has been reduced to the size of a walnut from all his dementia.” His dementia? Oh no! That news really shocked me.
None of Dad’s physicians had ever alluded to his having this dreaded affliction. I was trying to process both the cruel image the brain surgeon had drawn for us as well as the long-term consequences of this news when he dealt a second blow. The surgeon actually took a plastic soda bottle out of my mother’s hand, pointed to the remains of her drink and said: “I had to take that much fluid out of his head.” Unbelievable! Thankfully, I don’t think Mom fully understood him. She’d only heard the part that her man would be okay and returning to her, and that made her very happy.
We were permitted a brief visit with him. Lying there attached to monitoring machines, Dad looked smaller and frailer than I’d ever seen him. I could see that his recovery would be arduous. Dad would need rest and then extensive rehabilitation in order to learn to walk and talk again. And I didn’t know what, if anything, could be done at this point for Dad’s newly reported dementia. I did know that Mom would need me to manage more things for her now that Dad would be unavailable, and I wondered where I’d find the additional time.
According to his surgeon, Dad had a very limited brain, but, according to the hospital’s physical therapy staff, it was a teachable brain. Jack remained remarkably cheerful throughout his rehab. He developed this habit of thanking everyone who took care of him, often three times. People at the rehab facility often stopped me in the hall to share their appreciation of Dad’s inspiring results and his optimistic attitude. He was willing to allow the doctors to probe and push him without complaint. He took his medicines, food, and water voluntarily and as prescribed. He did his rehab as regularly as he’d done his exercises every morning when I’d been a girl. Dad went through the process with the same resolve I’d seen in him in his younger days. Through rehabilitation, he was able to regain most of his strength and all of his speech.
My Mom did as well as she could without having him by her side to help her stay organized and calm. I saw her more often during the weeks Dad was away recovering. She continued going to meals, of course, and to the activities she liked, and she even started making some new friends. She never complained to me, and only once during Dad’s absence was I called in to see the ALF administrator about Lillian’s questionable behaviors. Then Jack came back, they were together again, and things went along pretty ordinarily for a little while.
Frankly there are limitations on how much permanence you will get or can expect from any of your POPlans, no matter how well thought out they are. Similarly, there are limitations on how much you can protect any other human being, especially another adult, something you’ve undoubtedly seen. Even with many sets of eyes watching, a frail elderly person can easily take a fall, forget to take the right medication at the right time, or lose a hearing aid in the sheets. Nearly one in three women who are sixty-five years old today will take a fall. One half of those over age eighty-five will fall whether they live at home or in a senior facility.[1]
The consequences of falling can be potentially life changing. Certainly, they’ll require you to alter your POPlan. Eighty percent of those in California rehabilitation facilities are there because they took a fall. Of those, 65 percent will never return home. Falls are the most common cause of traumatic brain injuries (TBI).
In 2000 TBI accounted for 46 percent of fatal falls among older adults.[2] People who are seventy-five and older who fall are four to five times more likely than those aged sixty-five to seventy-four to be admitted to a long-term care (LTC) facility for a year or more as a result.[3] Hip fractures are particularly concerning because older people often can’t learn to walk again. Thereafter, their prolonged immobility and functional disability put these seniors at even greater risk for additional diseases.
No matter how watchful everyone’s eyes and how attentive you are, it seems impossible to prevent all falls and accidents. One of the dangerous and limiting effects for people who’ve fallen even once is developing the fear of falling. That concern may cause your parents to unduly limit their activities. Ironically, by reducing their mobility, your parents will lose some physical fitness and actually increase their risk of falling.[4] In a moment, on the way back from the bathroom even with a caregiver holding on, your parent can take a fall. No one is immune.
Since I never recommend more oversight of your parents than is necessary, your POP task here, as elsewhere, is determining the right amount of care and oversight. Would more caregiver help have prevented Dad from falling in the bathroom? Probably not, but maybe the caregiver would have walked him to the john? How much oversight might I have needed when Dad’s “silent” aneurysm was growing? Hard to say, and maybe no amount of prevention is perfect.
To do more for your aging parents than they need can infantilize and weaken them. If you hire too much caregiving too early or hover over your parents day and night, you may encourage a premature loss of confidence that may lead to many unwanted outcomes, including falling. While some parents do need substantial help, others do not. Anyone can get lazy when there’s someone around to do all the lifting. When your aging parents rely on others unnecessarily, their results may include loss of muscle mass, weight gain, diminution of cognitive ability, and of the joy of feeling independent.
How will you know the right amount of attention that your parents need? You won’t
always know. But to get the best estimate, watch your parents carefully and ask as
many of the right questions as possible. Evaluate your parents for something called
the “frailty syndrome,” a condition primarily due to the age-
related loss and dysfunction of muscle and bone. Stay alert to the five most common elements of frailty syndrome: unintentional weight
loss, muscle weakness, unexplained exhaustion, low physical activity level, and a slowed walking speed.
Those seniors rated most frail on this scale have the greatest potential for harm
and need the most attention.
Another thing to do before your parents have accidents or take the kinds of falls mine did is to look at whether there are better ways to prevent such events. There are some simple things you can do to lessen the probability of serious falls, like putting down non-stick mats under area rugs, eliminating unnecessary electrical cords and wires and ridding their halls of the attractive nuisance of clutter.
If you’ve been carefully watching your parents’ decline, it’s likely you’ve seen erratic changes. Part of your difficulty in knowing the correct degree of protection your parents need is that it may vary from day to day, even change for the worse after sunset (called “sundowning”) or over the course of a single day. Even if they’ve been diagnosed with some form of dementia or delirium, parts of your parents’ brain may still be working fairly well, especially at certain times of day. Your parents also may sometimes dissemble, which can confuse you, or hide things from you. They may be very needy on a Wednesday night but by Friday morning, after a refreshing night’s sleep, appear to have changed substantially for the better. Even as you aim to protect them, you’ll need to avoid underestimating your parents’ abilities.
Each parent has his or her own disabilities and declines at a unique pace. That is part of why your seemingly perfect POPlan may fail. Differing aging patterns alter the dynamics of your parents’ lives together, which not only can be stressful in a long marriage with its well-established habits, but may require you to come up with alternative plans you’d never considered.
When one of your parent’s geriatric limitations exceeds the other’s, everyone involved may feel unsettled. Sometimes one of your parents becomes the caregiver to a more disabled or substantially older spouse. Other times, their divergent conditions require placement in different facilities. You, like me, may have several of these events happen over the course of your POPcycle. You will want to be aware that intense feelings—such as abandonment, survivor guilt, shock, betrayal, and even rage—may arise for the spouse left behind by one who no longer functions well or remembers the other. Ironically it may be a relief as well.
Now that you’ve come to the point in your POPcycle where you’ve put in place as many safety measures for your parents’ lives, homes, and property, as you can manage and they will tolerate, many of your remaining tasks will simply involve maintenance. You may even have a lot of time on your hands to watch and wait. Ironically, much of your challenge may involve the fact that there’s little to fix or do.
Sometimes when you’re frustrated because you have nothing POParental to do, you may decide to do something, anything, to “be helpful.” You might even find yourself making up things to do for your parents. You may have their swallowing retested to see if they can eat more interesting foods. You may suggest more physical therapy to see if it will lighten your parents’ depression or give them more physical challenges through exercise. There may be times when your efforts are relatively fruitless, but you may just want to feel you’re doing something useful. To be candid, I did all of those.
When you feel sad that your loved ones are failing in front of your eyes, you may even try to “fix” those things that are already working. You may try to micromanage your parents’ care, unconsciously hoping you can regain control over things that feel uncontrollable. Don’t change things in your POPlan unless they’re not working and you have to. What can you do instead of messing with what’s working? You can focus on your gratitude for their health and longevity.
Often there isn’t a lot you can do but sit by patiently, be grateful for their aliveness, and enjoy your parents as much as possible in the time you have left with them. There are times when listening to your parents may be the most kind and POParental thing to do. Listen to them respectfully. Pay attention to what your parents say they want or need and to what they don’t say. Some days it just plain hurts when the people you looked up to and loved become diminished. But it is all part of the Circle of Life. Does that make it hurt any less? Watching and waiting can be oppressive or joy filled. It’s up to you.
See “Falls and the Elderly,” Netwellness, http://www.netwellness.org/healthtopics/aging/faq9.cfm.
J. A. Stevens, “Fatalities and Injuries from Falls among Older Adults—United States, 1993–2003 and 2001–2005,” Morbidity and Mortality Weekly Report 55, no. 45 (2006): 1221‒24.
I. P. Donald and C. J. Bulpitt, “The Prognosis of Falls in Elderly People Living at Home,” Age and Ageing 28 (1999): 121–25.
B. J. Vellas, S. J. Wayne, L. J. Romero, R. N. Baumgartner, and P. J. Garry, “Fear of Falling and Restriction of Mobility in Elderly Fallers,” Age and Aging 26 (1997): 189–93.