Mom still elegant at eighty-nine
Comfort-Filling Your Parents
Despite bringing my parents to a warmer climate in the hope of decreasing the number of serious medical events they would have to endure, those situations actually increased in frequency after they became Californians. Their hospitalizations were beginning to occur so often that they felt commonplace but, never ordinary.
Going to the hospital often had proven debilitating for all concerned. Relentlessly these elderly people I loved had battled pneumonias, undergone serious surgeries, endured the even more difficult anesthesia as well as the postsurgical physical and occupation therapies. I saw how all of that had drained my fragile parents, now in their nineties. Being in the hospital with other sick people often made them sicker, exposing Lillian to Methicillin-resistant Staphylococcus aureus (MRSA) and other complications. I, too, became exhausted, as I tried to balance my life while driving incredible distances between home, work, and my parents’ respective assisted-living facilities (ALFs), skilled nursing facilities (SNFs), and hospitals.
Aside from a few extraordinary events—like my birth, Dad’s hernia operation when I was sixteen, an infamous hurricane in the early 1950s—my parents had been together without interruption. Until Mom moved away permanently to the SNF, each of their hospitalizations and rehabs had required my folks to manage the additional adjustment of living apart from each other. These events emerged as a major life disruption, since, during their six decades of marriage, my parents had arranged it so they spent their days and nights together.
During their early years together, Dad’s lupus skin disorder had made him ineligible for the draft. The resulting alternate service he did was local, allowing him to stay living at home with Mom. Even when he had his office in midtown, Dad would often write songs and conduct his music business from home. After I went off to school, Jack gave up his office and shared all his days and nights in the two-bedroom apartment with his wife.
Their hospitalizations demanded other changes from Mom and Dad as well. They had to wrap their minds and aging bodies around spending their days apart and their nights sleeping alone and in beds that were different from those they were used to. It was easy to see how they could have become sleepless or paranoid in the middle of a dark night in a strange bed, drugged, disoriented, not knowing who was coming to help them. This often led to sleep disruptions and/or to extra medications to calm their disorientation.
Being in the hospital also meant being in a whole new environment and relating to the constantly changing staffs there. That became increasingly challenging, and each hospitalization added more to their stress. Jack and Lillian weren’t only challenged by their cognitive limitations but also by their vision and hearing, which were no longer all that sharp. Similarly, their postoperative rehabilitation process also required spending additional time away from each other in specialized facilities with their own new staffs to deal with, often uncomfortable beds and consistently novel environments to learn.
All this visibly drained my parents’ energies and would have been tough on people years younger and healthier. Their hospitalizations also unsettled my parents’ regular routine back at their facilities. Each time it was more difficult to readjust to life back at home. Now that they were in their nineties, even small changes were getting harder for Mom and Dad to accommodate and incorporate. I wasn’t getting younger or healthier myself, and, at that point in our POPcycle, I was too often ignoring the very advice I gave others about self-care and knew to be right.
It was becoming clear to me just how exhausted Jack had become when I was figuring out where to place him after his last bout with pneumonia. My father was tired of being sick, sick of hospitals, rehab centers, and the revolving-door ritual these institutionalizations had become. Lying in his last hospital bed, Dad’s body looked emaciated. Oddly, being so thin made him look almost like a young boy rather than an old man.
Had I not felt unbearably sad seeing him so vulnerable there, maybe I’d have better appreciated the humor in his point of view.
“Look at these people, Jane. They’re unhealthy. They’re fat and I don’t mean a few pounds overweight but horribly, morbidly obese. Not only that, but they have cigarettes falling out of their pockets. They should know better than to smoke! I’m talking about the doctors here honey, not the patients. How can we trust these people to take care of me when they treat themselves so badly? Get me out of here.”
I knew he was right. I’d forgotten that this now-shrunken old man had once been an outspoken health enthusiast, a daily exerciser, and a state champion athlete in his earlier life. Early on when lots of people smoked, Jack proudly told me that he’d never smoked a single cigarette, hoping to discourage my acquiring an unhealthy practice. I smiled, remembering Dad’s vision for vibrant health back in the day.
When I went away to college and was no longer under his watchful eye, his contribution to my healthy habits was a weekly delivery of a basket of fruit, arriving fresh every Monday. As a youngster, I’d watched Jack’s discipline as he worked out in his bedroom every single morning. No fancy gym, no trainer to keep him on target, Jack just used his good common sense. Now that same man was begging me: “Get me outta here, Jane. I hate the hypocrisy of obesity and smoking by doctors. I’m tired of being here. Plus, it’s always freezing in these hospitals. No amount of blankets ever makes me warm enough. Honey, take me home and please never bring me back!”
Notwithstanding the neurosurgeon’s earlier disparagement of Jack’s brain, Dad revealed he could still articulate his wishes with crystalline clarity. I knew that I should heed his requests. He wanted to be warmer than he’d been in the hospital. Dad understood that he’d been evicted from his original ALF due to their changing rules and could not return there. He also knew that moving would require his adjusting to a new facility, its staff and residents, and different rules.
My Dad stated that he did not want to be placed with Mom in her SNF. Jack explained this in terms of his medical needs, saying that he didn’t need the same level of care Lillian did in the SNF. That was accurate, although less true at that point than it had been previously, since he was weaker than ever. I considered that what he really meant by his comment was far different than what he was saying: my now fatigued father didn’t want to live with Lillian.
It seemed wiser and kinder to comply with his request rather than try to convince him of something he clearly didn’t want in order to simplify my life by having two parents at a single facility. I could see that Dad felt relieved after we’d talked about his not joining Mom at the SNF. He seemed particularly comforted because I’d listened to his hospital-bed requests.
So out I went and found Jack a different, smaller ALF that seemed to provide more supervision than the first had. Fortunately, they had an opening for a male resident when we needed one. This ALF was located a few miles from the old ALF and, significantly, it was near his doctors. If this new ALF fit my POParenting standards for him, Dad could be living there within days and within the deadline that Medicare’s diagnosis-related groups (DRGs) had imposed.
I immediately toured the facility and talked with the proprietors, staff, and their residents at some length. It seemed doable. The ALF passed my “smell test”—that is: it didn’t smell at all bad and the food smelled good. They also had cameras installed at key locations to keep track of their residents and the attendants. I liked the notion of additional equipment to provide extra eyes on Dad and was pleased to learn that the owners of the facility could watch out for Dad from their homes.
After conducting as thorough a “due diligence” as I had time for, I employed my best intuitive skills to conclude the staff at this ALF would (hopefully) be more careful and attentive to Dad than they’d been at his previous facility. I prayed that the people at the new ALF would monitor him better, since I hated the idea that Jack might forget to put thickener into his coffee and contract another aspiration pneumonia. I was especially fearful of that happening after Dad had been so outspoken about never returning to another hospital.
At this point in the POPcycle, when my parents were able to do few things for themselves and were feeling somewhat powerless, it seemed crucial that, at least in their interchanges with me, they feel as respected and heard as possible. Knowing that I understood their concerns and was heeding their wishes, when I could, seemed more important than ever before.
Dad got into my car at the hospital for this unplanned move with characteristic cool. Early on, he’d decided to be a noncomplainer, teaching it to me this way: “Keep your complaints to yourself, honey. Pay attention and you’ll see that nobody really wants to hear them anyway.” In his old age, Jack had become a “triple thank-you” giver as I shared earlier. He repetitively expressed his appreciation for almost anything done on his behalf. Dad’s quiet, easygoing nature and these frequent expressions of gratitude made him relatively simple to place this time, which contrasted with Mom, who often was accompanied by her challenging attitude and her “record” of previous problems.
Driving Dad to his new ALF, I sensed I was bringing him to his last home, quite literally. The man who had picked out my first home was now graciously allowing me to choose his final one. The new facility was clean, warm—Dad was happy about that—and attractive. Most of the residents displayed more severe aging symptoms and disabilities than their counterparts at Dad’s former ALF had. The cameras in the halls, common areas, and at the nursing stations did provide me an odd sense of security, and didn’t feel concerned about the possible intrusions on Dad’s privacy, since he was my responsibility and I wanted him safe, despite knowing there was no ultimate safety from death.
They gave him a large single room rather than the two-room apartment he and Mom had occupied at their original ALF. I’d negotiated with the owners and gotten Dad more caregiver attention in exchange for less living space. Sunlight filled Dad’s room most of his days at his new facility. I arranged his furniture so that he had a separate sitting area, near the entryway, although his guests were few in number. I placed his single bed, where he would spend most of the remaining days, at the far end of the large room, facing the window.
From his bed, Jack could look out onto a beautiful courtyard filled with fruit trees that seemed to be constantly in stages of blooming. I loved to watch my father as he warmed his body with the sun streaming through the window and warmed his spirit with the beauty of the trees and the serenity in his surroundings.
Life went on uneventfully for a while for Dad. I watched him getting used to his new home, and he seemed quietly content. When I’d come to visit, he’d be relishing his peaceful view, reading a newspaper, watching some nighttime television or resting comfortably. I didn’t otherwise know how Dad was reacting to all the changes because, like so many men of his generation, he’d never been one to say a lot about his feelings. Nonetheless, when Jack did want to make his views known—about not returning to the hospital and not moving into Mom’s SNF—he was able to make his point very clearly.
Although he was outgoing and often talkative in his younger days, he’d gotten a bit quieter over time. But now Dad started to become quite “internal” and withdrawn. He was even less forthcoming about himself or his opinions than previously. When he was in the mood for visiting with me, Jack appeared to love talking, but, increasingly, it was he, not busy me, who would be the one to end our visits, claiming fatigue.
Jack was uninterested in a social life with the other people at this latest home and had no need to be entertained by them or the staff. He found no one in the new ALF whom he wished to befriend or particularly even converse with. But that wasn’t so very different from his first California residence. Aside from family, Jack preferred to spend his days and nights in a more solitary fashion, a place that he termed “peaceful.”
Despite being in a resting mode most of the time and in bed a lot, fatigue seemed to overcome his body, energy, strength, and even his motivation to move. It seemed like his spirit had even become tired, although not necessarily peaceful. Dad seemed to lack purpose for the first time I could remember. It felt like he was off-balance, and not at all himself.
I watched as weariness overtook Jack’s mental functioning. As with many writers, my father had always been fascinated with life’s details. As he settled into his final home on earth, I witnessed him losing interest in many things. I knew he was slowing down when Dad stopped reading. Books had been a great love for him, a quiet spot in a demanding marriage. Initially, he’d seemed untroubled to find out that he was rereading some books he’d previously borrowed from the ALF’s library. Later, he limited his reading choices to shorter pieces, like magazine or newspaper articles. Finally, he stopped reading altogether.
Then, the news and his favorite television shows lost their appeal, and even Jeopardy’s mental challenges no longer held his attention. Sometimes I thought he was even losing interest in me. When that happened, I tried to not take it personally. Mostly Dad spoke of wanting to rest, even as he was already lying in his bed.
Observing all these changes still hadn’t prepared me for something I didn’t really want to see. One afternoon he called me into his room to have the “Talk” he needed me to hear. It wasn’t expected. He spoke without hesitation, saying things that I had difficulty allowing myself to comprehend. So I just listened. “Jane, you seem to be doing well and you don’t really need me anymore.” I resisted telling him I did need him. I wanted my father to feel vital and strong and for me to be able to lean on him, as I’d done in my youth. The truth was that he seemed tired all the time and no longer available for me to lean on. I tried telling myself I shouldn’t need to lean on my father anymore, that I was the grown-up now. But a part of me wasn’t 100 percent sure about that, the part that still wanted her daddy.
“You know, honey, I’m not going back to the hospital again. Hospitals are cold places with sick people and I don’t see any reason to return there. I’m done with hospitals. And truthfully Jane, I feel kind of done with living. I’m always exhausted. I’m tired of fighting this chronic pneumonia, and I can’t remember the last time I felt well or had any energy. I don’t want any more medication with their gruesome side effects.”
He took a long pause and continued on. “I can see that you’re doing fine, honey. More than fine. You’re a good girl and you’ll be all right. You’ve been taking such good care of your Mom as well as me. I can rest well knowing you’ll continue to look out for your mother. As for me, I’m ready to go. I apologize to you for not having more energy or sticking around longer. I’m sorry. But can it be all right if I’m done fighting and allow whatever happens to me to happen? And if so, what do we do about it?”
I took a breath, realizing I had mostly stopped breathing as he’d been speaking. My father wanted me to understand that he felt his living was complete. He was tired of fighting his illnesses, and, should something lead to his death, he was ready to go and that would be acceptable.
Dad wasn’t hopeless. He wasn’t depressed. He wasn’t suicidal as he’d once been back in New York. He wasn’t simply insulted with the hypocritical doctors who didn’t live the healthy lives they espoused nor merely irritated with being forever cold in hospital beds. He wasn’t ashamed that he could no longer do his work or support others. Jack didn’t seem to mind the thought that neither his daughter nor his wife needed him any longer; if anything, that seemed a relief to him as he faced his current limitations.
My Dad was tired enough to let go of the struggle, willing to release himself. Characteristically, this man of such notable determination considered his death and the process of dying to be his choice. I had just spent the last seven or eight years of my life focused on creating a better life for my folks. I’d tried so hard to make my parents’ world—what? “Safe” from death? And now, one of them wanted to walk right into that abyss and give up fighting. A part of me was momentarily confused, I’d say even incensed. I tried reminding myself that Jack’s decision wasn’t about me. But even though I understood that, I felt profoundly sorry for myself and my “abandonment.”
Dad had apologized to that part of me, the one not yet ready to fully accept what he was going through. Of course, he had no reason to apologize for being worn out at nearly ninety-two, not to me or anyone else. But I needed some time to allow the full implications of his decision into my comprehension. I needed to figure out how to manage my emotions and then how to make it happen for Dad with comfort and grace. It seemed so ironic that, just when I was finally becoming a bit adept at being his POParent, I might not be able to do that much longer.
I reminded myself that this was his life. Dad owed me nothing more. He had given me life, his love, an extraordinary education, and the very best of himself. He’d even left me and the world his legacy of music. My more rational self said there was no more that he needed to do for me, not even stay alive.
I breathed in deeply to access my inner calmness. In my most grown-up voice, I heard myself saying, “It isn’t your job, Dad, to stay alive in order to amuse or please me. I can’t imagine how much I will miss you, but, if you feel ready to go, I will honor that. I’ll speak with your doctors and see if you can be put on hospice. And after that, I’ll do all I can so that your remaining days and nights are as pain free and peace filled as possible.” Somehow, I’d been able to give my father the mature and enlightened POParental response I wanted to offer him.
I drove home and read up about hospice and the requirements of getting Dad into Medicare’s hospice program. I learned that Dad would be eligible for hospice services after his physician certified that he was suffering from a terminal condition and unlikely to live longer than six months. Hospice services could be given him in a separate hospice residence or in his ALF. Finally, Jack would not need to return to those cold hospitals nor move again. No, he was home for good.
My next steps involved requesting that Dad’s doctor certify him for hospice, which he did, and then choosing one agency from among many that contracted with Medicare to provide him the services allowed under federal regulation. Hospice’s palliative care involved rest, water treatments, pain relief for the coughing or discomfort if he wished it, and counseling for any emotional and spiritual concerns.
Once on hospice, Dad would no longer be given treatments to cure any illnesses that might become opportunistic, just treatments that comforted him. Should he get another case of pneumonia, for example, he would not be prescribed antibiotics or other medications to fight it. If Jack wanted to taste his favorite coffee without thickener or eat rich foods again, he could now indulge those cravings.
I was referred to a few good hospices in Dad’s neighborhood from other POParents and from my geriatric colleagues. I contacted them, checked out what I could about them online and then went to interview the hospice providers in person, just as I’d earlier done with Mom and Dad’s residential facilities.
Hospice workers are generally known in the medical and geriatric communities as unusually kind and caring people. I particularly liked the compassion I saw and heard from the staff at one agency and opted for them. Their people came out to meet with Dad and assess his needs and desires. They offered him warm baths, nutritional services, visits from social workers, conversation with spiritual people, and lots of information. I stepped back to watch how they would do their work—I knew a lot about aging but little about the process of dying.
After that, I went online and ordered every book I could find on “death and . . . humor” and asked that they be shipped ASAP. I wanted to find a way to laugh when life was at its most challenging. Or maybe I needed to. But, either way, my instincts said: “this is part of life, too. You might as well enjoy the ride and see the humor.” That perspective was something I’d learned from my daddy. I could now honor my mentor by finding and utilizing the funny side of dying.
One evening during hospice when I went by to visit him, I saw a business card on Dad’s nightstand. It belonged to the hospice minister who, I learned, had been by to see Dad several times, as it turned out. Jack’s parents had not been believers in a religion, and so he had been given no formal religious education. We’d never talked much about his point of view regarding an afterlife. But months before “meeting his Maker,” apparently Jack was seeking a spiritual perspective from this hospice minister.
I asked Dad if I might talk to the minister, although I’m unsure exactly why I did that. I think I hoped to somehow reassure myself that Dad was resolving any remaining questions he had, in preparation for his demise. I was pleased when the minister told me they’d talked extensively. It seemed that Jack’s comfort was arriving in a variety of palliative packages. I felt very grateful my father had found someone to talk to, maybe as part of his final healing.
Dad had been kind as usual when we talked after he was put on hospice. He wanted to clarify that his decision to go on hospice didn’t mean he was “tired of me.” Even before his move to California, he’d told me of his excitement to spend more time than we’d had all those years when I’d only visited.
When he became a Californian, Dad delighted in discovering the little things that he felt he could only learn by our spending time together. He’d ask all about me, my work, my ways of being in the world, and how I thought about things. I loved hearing how proud he was of my accomplishments and, more importantly, of how I treated people. Both Dad and I treasured those times together. Now that he was on hospice and our days together were numbered, I tried to make sure to remember it all. I still think about those loving conversations periodically. I bring them out to savor them and they still make my heart sing. But I’m getting ahead of myself.
During hospice Dad seemed to particularly enjoy our just being together quietly until he faded, which was sooner and sooner. It didn’t matter whether we talked about anything or not. Sometimes we just held hands as we watched television. I’d already begun working on this book and showed Jack my earliest drafts. As with Mom, I had a hint of trepidation, wondering how he’d respond to the book, to the intrusion it might be on his privacy and also to the notion that I was POParenting him.
I should have known him better and had more faith in him. Dad grinned with fully relished pleasure. Not only did he love the concept of POP, but he also got how much help my work could be. He was joyous about what POP could do for other families. Moreover, he was proud of my blossoming third career. “Imagine, Jane, you’re a writer, too! Finally, you’re joining the Wolf family business! Your grandmother would have loved your having that potential to influence the world for good, honey!”
Long ago Jack had figured out how to earn his livelihood, as had other Wolf family members, doing work he loved, writing. Several years after Dad left the planet, I got to experience the power of being a writer. It was the morning after Barack Obama was elected president and I was reading his autobiography, Dreams of My Father.[1] At that point in the story our new president was chronicling some of the disheartening days he’d had doing community organizing. He had resorted to listening to music for encouragement, and there, on page 91, were the lyrics of Dad’s song “I’m a Fool to Want You,” which, sung by Billie Holiday, had comforted the future leader of the free world. I swelled with pride.[2]
Like Jack’s influence on the young American president, others in our family had been gifted with being able to make a difference in the world through their words. My paternal grandmother as a teenage girl living in Eastern Europe had helped many families escape to the United States from oppressive conditions there. Later, after giving birth to my Dad and his siblings, she’d written a daily column for a political newspaper, advocating for better conditions for workers and the poor. It was virtually unheard of at that time for a woman to be a writer, have her opinions published, and be actively discussed in the community.
Dad’s younger brother George had gone in a different writing direction, creating advertising copy and minting phrases that would become America’s household names, like the characters in Mad Men. My first cousin Dick Wolf, George’s son, created, wrote, and produced the Law and Order series and more, having emerged as a world-renowned writing icon and almost anyone with a TV can attest to the sway of his written words.
Now, I too might be joining the family business, and it felt right and very good to have Dad welcome me so warmly into it. He called the family’s ethos “writing with the intent to make a difference.” Up until then, I hadn’t seen myself as any part of that or any other tradition. Starting this book had seemed like adding to my psychotherapy and POP Family Coaching practices, not embarking on another career with ancestral roots. But Dad was right, as usual: it was my intention then and has remained my goal to have this book be of service to the world, to make a difference.
Dad and I decided not to tell Mom that he’d gone on hospice. Attempting to explain the concept of hospice to Lillian would have been wasted on her by that time. Nor did we share with her how soon he might pass. Dad and I agreed there’d be no benefit to that, especially since there was no certainty about the time. Having vague and incomprehensible information would likely have caused Mom unnecessary distress, and there seemed little upside, since there was no way she was equipped to understand or prepare herself.
When Lillian’s conditions had required her placement in a different geriatric setting from Dad’s, many things changed in the dynamic of our threesome. For a couple that had previously spent so little time apart, this separation dramatically altered their relationship. Mom was unable to operate a cell phone and the SNF didn’t encourage phoning on their line unless there was an emergency. Hearing on the phone was also a problem for Mom. As a result, in-person visits became my parents’ way of communicating with each other, and I was responsible for making the arrangements.
Once they began living separately, my parents needed me to be the connection between them. Mom got carsick on the mountain roads and had greater disabilities, both physically and mentally, so Dad became the logical candidate to be the traveling spouse. That was always the way, except for once at the very end of his life, when I brought Mom to tell him “goodbye.”
The frequency and length of their visits together were determined by how much time I could stay, and eventually imposing my time limitations didn’t seem fair to do to them. I decided to hire someone to drive him for these visits, which then allowed Jack to dictate how long he’d stay with her. The time they spent together became shorter and shorter, and although Dad would blame his short visits on his driver to Mom, I felt he was purposefully disconnecting from her.
Another consequence of my parents’ living apart was that I got to have time with each of them separately. That had rarely occurred since I’d left high school. Back then, Mom had been a bit proprietary, some might say controlling, in insisting that all three of us share as much time together as possible. Even talking on the phone together long distance, Mom aimed for three-way conversations. I missed the intimacy of one-on-one talks with each parent, but these “conference calls” made her less anxious, so Dad and I accommodated her wishes.
My father and I had now gotten into a new routine of talking every day by phone. Now that there was no Lillian on the other phone, it was just the two of us. We would catch up on our respective days. Our end-of-life conversations were filled with sweet words and abundant affection. I’d tell him I loved him. Dad would insist that he loved me more. I would tell him I doubted that possibility. He’d persist, offering proof of his greater love: “after all, I’m older and wiser.” It was hard to rebut that evidence.
Until you’ve actually been through it, it’s hard to fathom how debilitating it can be to watch your loved one, especially a parent, become weaker, thinner, and increasingly removed from everything around him. In those concluding months Dad became painfully thin, skinnier every day it seemed. It hurt me to look at his shoulder bones sticking out through his pajama tops. It’s still hard to erase the memory of Dad’s head sitting on top of a body as thin as any concentration camp survivor.
On some visits I’d bring along my dog to cheer everyone up. I knew from my residency work at the Veterans’ Administration how healing a domesticated animal can be, especially for elderly folks. My fourteen-pound rescue dog had a magnetic personality, and I watched how the residents at Dad’s facility would perk up when he came on the scene. Although the dog and Jack hadn’t developed a significant bond earlier, as Dad’s days were dwindling down, my puppy would nuzzle him sweetly with unconditional affection. I’d found another way to provide the comfort care of hospice to my Dad.
By the end, I was making nearly daily visits to Dad just to be around him. I would go by before work to check up on him or after work to feed him, although I wasn’t really needed for either. Dad seemed to be eating the ALF’s food and reported that he even liked it, but he was still somehow losing weight rapidly.
In spite of his cheerful demeanor and peacefulness, something about his physical essence reminded me of something I’d seen before—in deprived infants. In those cases, it was clinically referred to as a “failure to thrive.” I sometimes wondered if Jack had willed himself into that condition after making his hospice decision. Earlier in life he’d seemed capable of creating whatever he’d wanted: a marriage to a woman he adored; a daughter he was proud of (thanks, Dad!); work that he loved and felt meaningful, and a dream home that “Jack built.” If that man put his intention into leaving, maybe he was now ready to die by “failing to thrive.”
I tried to let that be okay with me if that was what he wanted, but it was hard nonetheless. I kept my focus on Jack and making sure his remaining time on Earth would be special by being as loving as I could and doing things that were full of comfort. I even tried to add some pounds onto him. I’d buy the largest box of Dad’s favorite snack, Nilla Wafers, and warm them in water until they reached pudding consistency. Gently I would feed him with a spoon, simultaneously setting my intention to remain calm. Feeding my father, as he’d once fed me, was eerie.
Watching Jack’s life clock run down, I wished I could hold back the hands of time. But that wasn’t in my power. I was beginning to see that such a desire might be rooted in my own selfishness. Was it I who wasn’t ready, maybe? Despite my own pain and grieving the impending loss, I aimed to be unconditionally loving. Sometimes it felt good to know I’d done so much for him and that the rest was out of my hands. At other times I felt horribly frustrated by my lack of control as I watched my childhood hero fade away. I wondered repeatedly whether there wasn’t something more I could do but there was really nothing more. The only thing left was to make my father as comfortable as possible and then let him feel peace on his path toward whatever might await him on “the other side.”
I waited for some sign to tell me what, if anything, I was to do next. Would Dad develop another case of pneumonia, this time fatal? Would I be strong enough to withhold his medication? As it turns out, I didn’t need a sign.
In the very room where he’d told me he was ready to leave, and within six months of the “Talk,” Jack’s expressed request was fulfilled. There would be no more cold hospital beds, no more adjusting to new facilities with new rules, no more “forgotten” thickener, and no more struggling for Jack Wolf.
I was always very honest with Jane. I thought that was important as a Father. But I’d never told her all my thoughts and feelings. Heck, I hadn’t even done that with my wife, my brothers, or anyone else. Men of my generation were never all that comfortable doing the sharing that women seem to thrive on. I’d kept my own counsel quite a bit. That meant I left some things unexpressed and kept a lot to myself. At ninety-one, I wasn’t about to start changing all that just because I was living alone or getting old.
Nonetheless, after she’d begun doing all that caring for Lillian and me, I’d really noticed how well Jane was able to listen to me and get what I was saying and feeling, and I appreciated it to no end. I felt that her ability to be fully present and really get what was being said must have served her very well in her legal and psychological counseling. I noticed that, whenever she could, Jane produced whatever I asked for. When I was in the hospital that last time, I was miserable. I was tired of the doctors and endless medication that didn’t seem to do any good. I wanted to be warm, get out of there, and go home. Jane listened again and she responded to my requests.
I knew I didn’t need to have one or two aides carrying me around from the bed to a chair to the toilet and back, as Lillian did. And I didn’t want to go to an SNF, like she had to. What I wanted was to stay in my home where I could rest and have some peace. I know it would have been easier on her to not have the two of us living so far apart, since Jane had taken on the responsibility of visiting and monitoring the care for both of us.
Jane seemed to notice that I was no longer keen to live with Lillian and even our visits together had become pretty short. It was hard because we couldn’t really talk anymore, my wife and I. There was so little left we could talk about, most of the time, although occasionally she rallied and I could see the woman I’d married and loved my whole life. She was becoming less and less present. It was as if she wasn’t quite there anymore.
Sometimes Lillian was even confused about who I was or why we didn’t just go home together. It hurt me to watch her become a shadow of the vibrant woman I’d known. I finally did talk to Jane about some of my feelings, and she was more understanding than I’d expected. I knew if I moved in just to be with Lillian at the SNF, which I didn’t need medically, I’d be sad all the time, upset at seeing her as she was but unable to do anything about it.
I was already continually frustrated when I saw how little I could help the woman I loved and had promised to be with ’til death did us part. Her state caused me to hurry off nearly each time I saw her, and I found myself making up excuses to get out of there as soon as I could. All the while, I felt helpless and decidedly unhusbandlike. Again, I tried talking with Jane, and, surprisingly, felt freer for having told her. She listened mostly, and offered a few reassuring remarks, inviting me to assuage my guilt. She said Lillian and I had schooled her well that guilt about the past that couldn’t be changed was a waste of energy; now, she wanted to remind me of my teachings.
As a result of all of this, I decided not to spend much time with Lillian in that hospital-like place she lived, and Jane did not fight me at all. My visits became shorter and shorter, as I knew I couldn’t peaceably watch the woman I’d so cherished disappear in front of my eyes. I needed to get away and live apart to protect myself from the pain.
Eventually, there came a time when I felt I needed to let her go. She was still alive but only recognizable on the outside. I was still alive but always tired. I wasn’t interested in finding another woman or another anything. What I was interested in was finding a way to begin to detach emotionally from Lillian and maybe more. I put up those mental barriers we men do—those compartments—and began thinking of myself as a widower, not a husband. I continued to visit Lillian and stayed as long as I could, but mostly my sweetheart had already gone. And I was allowing that to be all right. I let these changes process through my system, and then I looked around me. My daughter was doing fine. My wife was beyond my grasp and effectively gone. I was tired. Maybe I wasn’t much needed here anymore.
Hospice is an alternative type of health care offered in the United States under the Medicare program to eligible people, including perhaps your parents. The requirements include having a diagnosis of a terminal illness with an expectation of no more than six months to live. Hospice care focuses on offering the palliation or relief of the person’s symptoms, rather than on curing any underlying disease.
Some think of hospice as being limited to pain relief or that it has to be provided in an institution, but neither of those is true. Since the symptoms your parents may be experiencing during this time in their POPcycle might be physical, emotional, spiritual, and even social in nature, hospice offers relief from all of these. The services provided by hospice agencies can be given in your parents’ own home, their residential facility, or in a specially designated hospice facility.
The idea of hospice care has been around for many centuries, long before there was Medicare or a United States of America, but hospice care in twenty-first-century America is designed to permit patients like your mom and dad to be kept as comfortable as possible without having to undergo more rigorous treatments aimed at curing their illnesses.
Once your parents request to be put on hospice, meet the qualifications, and get certified by a physician, you and your parents can choose a particular hospice agency from a list of such agencies that have a contractual relationship with Medicare. The agency will provide your parents the following services, and Medicare will pay the costs in all or nearly all the following categories:[3]
Doctor services
Nursing care
Medical equipment (such as wheelchairs or walkers)
Medical supplies (such as bandages and catheters)
Drugs for symptom control and pain relief
Short-term care in a hospital
Home health aide and homemaker services including respite care for caregivers
Physical and occupational therapy
Speech therapy
Social worker services
Dietary counseling
Spiritual and other counseling for your parents and family
Your parents’ out-of-pocket charges will be very limited, if any. While on hospice, your parents are entitled to have a person help care for them. That person can be a family member. Medicare even offers respite care to your parents’ designated helper and, during that time, a supplemental caregiver is provided to them.
The decision to go on hospice will be made by your POP family and your parents, if they are competent to do so, in conjunction with your parents’ physician. You needn’t be concerned that being on hospice means your parents will be medically neglected or overlooked. Quite the opposite, the hospice staff will provide medical and nonmedical services for your parents, just different types of services than traditional Western medicine. They will receive comfort care without the expectation of recovery. It may be very calming, relieving your parents of burdens you didn’t even imagine they were bearing.
Hospice care is provided in increments of time. Your parent can receive it for as long as the doctor certifies that less than six months probably remain for the patient’s life. If the patient lives longer than six months, hospice care will be continued, provided the doctor recertifies it. Under current Medicare regulations, your parents are eligible to get hospice care for two ninety-day periods, followed by an unlimited number of sixty-day periods.
Hospice certification is not an irreversible one-way street. That is, should your parent unexpectedly begin to recover from whatever illness the doctor had thought terminal or, simply, if your Mom gets a change of heart, a decision can always be reversed. She can go off hospice care at any time and fight that illness.
After counseling families who had embraced hospice when the time was right, I came to truly appreciate the many benefits POP families can derive from hospice care. In addition to granting your aging and sick folks some physical and spiritual comfort, this choice can benefit them and the POParents, psychologically as well. Making the hospice decision has restored a sense of control to many a senior parent, newly confident because they feel more in charge of their treatment and their remaining time. That may be particularly true for seniors if they’ve felt at all disempowered by the POPcycle or if their dealings with Medicare, the health system, or insurance sectors have left them feeling somewhat impotent.
Your parents may be oddly relieved that they’ll no longer have to “perform” medically. Surviving difficult chemotherapy treatments or putting up with painful procedures may just require more of your aging relatives than they feel they have, at their advanced age. If your parent tells you: “I’ve had enough” or “I want to be at peace: let us talk to the priest,” you need to get that.
Perhaps you will need to acknowledge your own mixed feelings in the decision. You may have complicated beliefs about “putting your parents on hospice.” To become more comfortable with this complicated choice, this would be a good time to employ the POParenting tool of reframing what you’ve learned in order to think differently and more productively. Notice that you are actually being the best parent and friend your father could want by listening to his request for no more cold hospitals or medicines with their intrusive effects.
Your parent’s decision to go on hospice can trigger many different emotional reactions. You may feel frustrated, relieved, and upset that they will soon leave you all at the same time. You may feel disappointed, since you invested so much into POParenting them for years and now they’re just giving up. If you listen carefully, you may also discover that what your parent wants most is what he’s going to get from hospice care—peacefulness, comfort, eating what he wants, and resting. Letting your dying parent know you hear him and respect him is wise POParenting, at this stage as at others. It is also kind. It probably took your parent a whole lot of thinking and courage to have the “Talk” with you.
Sometimes your parent’s physician may initiate the conversation about hospice with you and your siblings or with your parent directly. Or you might ask the doctor to raise the issue with your mom or dad, should it be on your mind. Had it been left up to me, I probably would have continued along as we’d been doing, with Dad going in and out of cold hospital rooms more and more often until his eventual demise. But by his raising the topic of hospice, Dad actually made it easier for me to hear him and then to empathically contemplate what this magnificent, creative, loving, and generous man’s life had become. Ever my teacher, he remained so until the end.
When your parent’s discomfort or prognosis warrants it, you or your sibling may be the one who needs the courage to bring up hospice. That’s especially true if your mom or dad can’t. If that falls to you, one suggestion is this. Try talking to your parent about what he’d want for you if these were your sunset days and you were actually in his shoes and he in yours. He is still your parent and that question’s odd reversal might provoke some useful communications, including about hospice. It’s likely you will also wish to inform him of what you’ve learned about its many benefits and possibly disabuse him of the assumption that he’d need to leave home.
When conversations about hospice are going on, you may find you’re feeling increasingly anxious. You may be concerned about how little time is left in your parents’ lives or become worried—about how little time you have left with them, your own death, or how to process their upcoming departures. You may even be dismayed by your parent’s’ end-of-life choice. If that’s the case for you, try to keep in mind, it’s you who has this problem—your parent is fine with the choices. As a loving POParent, it’s unnecessary and maybe even unkind to lay these feelings on your parent, especially once he or she has made the hospice decision.
Perhaps you still have unresolved issues with your parents and doubt those can be resolved in only six months. Consulting a qualified professional therapist or POP Family Coach, even for a few sessions at this particular time, has helped many, and it’s likely to help you. You will want to release the feelings that seem to result in negativity or conflict and doing some work on yourself can provide renewed energy and better ways to help you complete the POPcycle with grace. Giving yourself some short-term help during challenging points in your POPcycle, like this one, often produces unexpectedly useful and profound results. On the other hand, not resolving your concerns may further stretch already-strained relations between you and your parents.
Please note that I didn’t say you needed to involve your aging parents in your own resolution process. If you still feel the need to resolve your issues directly with your parent(s), before confronting them, stop. Ask yourself this: “Do my mom and dad really need to know now how I feel about something that may have happened fifty years ago?” Probably not. “Is there anything my parents could do that would change the past?” If answering those doesn’t dissuade you from raising unnecessary historical material with people who may not recall what they ate for breakfast, ask yourself: “How would discussing my issues help my mom or dad?”
Frankly, your parents have bigger things to deal with at this time than your difficulties with the long-ago past. You would be wise to find a different person to air your old hurts or missed opportunities to than your mom and dad. Given the limited time you have left with them, wouldn’t the time be better spent focusing on joy that is currently available than sadness from the past?
If you and your siblings are upset with your parents’ imminent death or other end-of-life choices, that lack of acceptance may engender a problem of its own. During hospice what your parent needs most is comfort in its various physical, psychological, and spiritual forms. That means this time is as stress free as possible. Conflicts between you, your siblings, and others on your TEAM POP may bring much stress to your parents, and that helps no one. You must be wary to see that dissent doesn’t happen especially in front of your parents and to do your best to get along.
For example, if your mother chooses hospice, your POP job is to acquiesce and align those on TEAM POP to be on the same page, helping your beloved, ailing mother toward a serene transition. As you become more comfortable with the choice and more accepting of your mom’s decision, she will be able to rest better. If going on hospice or working with a particular hospice agency feels right to your mother, it could be the very best choice. After all, it is her life.
In a very helpful book called Companioning the Dying: A Soulful Guide for Counselors and Caregivers the authors report that the dying are most often and best comforted by those unafraid to stand with them and their decisions without judgment, advice, or expectation. As they move through this extraordinary passage, your parents want your companionship in this courageous way. Even in their final journey, it seems your parents still long to be connected to you and derive comfort from that connection. It may be a small consolation to you that the only thing left to do is to become as calm and compassionate as you can, but that may be the best way to support your parents at this time.
But then again, maybe not. It’s also possible there may still be some important or cutting-edge interventions you can try in your parents’ situations that I was unable to do in mine. For example, my instincts about Jack’s failure to thrive led me to do further research after his passing about what was then a relatively new syndrome. Adult failure to thrive (AFTT) may be caused by multiple chronic conditions and/or the losses associated with limited and decreased functioning. Your mom and dad may be experiencing one or all four AFTT syndromes that are predictors of adverse outcomes: impaired physical functioning, malnutrition, depression, and cognitive impairment. If your senior parents are showing significant decline and weight loss and their physicians are unable to attribute it to any medical condition, ask them to check for AFTT. Many interventions by the medical and hospice communities have resulted in positive changes and a lifting of the AFTT symptoms. It’s certainly worth your inquiring.
Barack Obama, Dreams of My Father (New York: Crown, 2007).
For more information about Jack Wolf’s music, go to http://mpcamusicpublishing.com/catalog/artists-songwriters/jack-wolf-integrity-music.
You will want to check that regulations and offerings have not changed in the interim, since this book’s publication. You can contact Medicare directly or go online to: www.medicare.gov/Publications/Pubs/pdf/11386.pdf.