My Father Is Dying

my dadSomewhere around 2004 or so—I no longer remember the exact year—my father was diagnosed with Parkinson’s disease. We’d been wondering why his legs had been feeling weak, and at first had thought he might have cervical spinal stenosis (a condition in which the spinal cord becomes compressed in the neck). But when the tell-tale cogwheel rigidity appeared, a neurologist confirmed Parkinson’s was the cause. We weren’t too concerned as even I, with my doctor’s knowledge, considered Parkinson’s primarily a disorder of movement, and a treatable one at that. I’d had many patients with Parkinson’s whom I’d cared for over the years and all seemed to me to have maintained a fairly good quality of life right up until they died.

At first it seemed as if this would be my father’s fate as well. He continued to jog and lift weights, and every year on his birthday continued to do a number of push-ups equal to his age (he’d ceased to be able to do them without stopping when he hit 50, but stopping only once at the age of 70 was something no other person I knew at that age could do).

But then his memory began to falter. We all noticed it before he did, but soon he was noticing it as well. I knew that Parkinson’s disease was sometimes associated with dementia—as well as depression, anxiety, and even hallucinations—and soon it was clear to us that his cognition was being affected by the disease perhaps even more than his movement.

And then he began to develop leg spasms. Intense and unpredictable, they would strike at a moment’s notice and pull him out of whatever conversation he was in. Then one night while lying in bed his calves began to hurt so badly my mother called 911. An ambulance took him to the emergency room where he was diagnosed with Parkinson’s dystonia. He was sent home on narcotics. After that he seemed to deteriorate quickly. (Though, as with many neurodegenerative diseases, that was only how it seemed to us. As more and more neurologic function is lost each subsequent loss becomes more significant—making up a larger percentage of what function is left—and making it appear as if the disease is accelerating when in fact it’s only nearing its end-stages.) A few months later, my mother told us that he was awakening her in the middle of the night and insisting she call 911 on weekly, if not nightly basis. The pain was just too much, he told her.

Around that time we began noticing that his personality had changed as well. No longer the supremely confident patriarch of our family, he freely admitted how often he felt afraid, especially when he would hallucinate in the middle of the night (when getting up to urinate, he would frequently describe “insects crawling around the bathroom rug.”) He became unsure whether things that were happening to him were real or “dreamed.” (Again, all well-recognized symptoms of Parkinson’s.)

One night, then, he again woke my mother and insisted she call an ambulance to take him to the hospital. This time he was admitted for uncontrolled leg pain and given Ativan (a sedative) for his accompanying anxiety. Shortly thereafter he became nearly unresponsive. His pain was controlled, but it took almost a week for his mentation to return to its baseline. After lying in a hospital bed all that time, then, he’d become too weak to stand. So he was discharged to a rehab facility in a nearby suburb.

There he received physical therapy and began to recover his strength. But by this time my mother no longer believed she could care for him by herself at home. We (that is, my brothers and I) agreed, so we told my father he needed to be transferred to the nursing home wing of the rehab facility. To our great surprise, he agreed.

Over the next two years, then, his decline continued to appear to accelerate. He began having difficulty finishing his thoughts. He would begin to speak with a clear purpose in mind, but then his words would taper off, leaving his sentences mostly unfinished. And then a strange symptom appeared: whenever he would become emotionally aroused—even by a pleasant conversation—he would be gripped by intense leg spasms. So we began to truncate our conversations so as not to overly arouse him. I thought this a particularly cruel symptom of the disease, one I’d never observed in any of my own Parkinson’s patients ever before.

And then he lost the ability to read. We were never sure if it was because he could no longer understand what he read or that reading itself would cause dystonia. But as a result of this, he was never able to read my book. He glowed with pride in my accomplishment, I could tell. But he couldn’t understand it.

About six months ago, then, he was found one morning to be unresponsive. He’d been found this way many time before—had, in fact, been taken to the hospital only to wake up spontaneously without any intervention—so we all thought this was most likely due to the same causes as in the past, namely his being over-sedated by narcotics or simply the mysterious workings of the Parkinson’s itself. As a result, we told the nursing home not to send him to the hospital when he was found that way but to observe him for 24 hours as the pattern (of return to his baseline) was the same every time.

This time, however, he remained minimally responsive for two days. When I came to visit him in the nursing home, he looked bad. He hadn’t eaten since he’d become unresponsive, nor had he urinated. The nursing home had given him 2 liters of fluid intravenously, but then stopped. I knew if we didn’t admit him to the hospital, he would die soon, from dehydration if nothing else.

My family and I needed only a few minutes to decide we weren’t ready to allow that to happen. We thought that if there were some cause at work here other than the Parkinson’s disease we might be able to reverse it and return him to a better baseline than we’d seen in months, a baseline that might be worth returning to.

At that point, my mother quietly reminded us about the conversations we’d all had with him decades earlier regarding end-of-life care. He’d expressed his desire in those conversations not to have his life continued if continuing meant he wouldn’t be able to live a satisfying existence. I even recalled a specific talk he and I had during my first year of medical school when he’d asked me if I would “prescribe a pill” if he ever got to the point where his life was no longer worth living. My response at that time was bewilderment—not because the idea of providing my father the means to kill himself was so abhorrent to me, but rather because I had no idea how I would be able to make it happen. What pill would I prescribe? How would I know the right dose to give him? What if I was discovered?

As a result of those discussions we all believed we knew what he would want if some acute catastrophe befell him. But we never discussed a scenario in which he slid into an unendurable existence gradually. Though I was never clear on exactly what he meant all those years ago by “a life no longer worth living,” I thought that if he’d been able to look into his future back then and see what was to happen to him that he would have judged the existence he’s living now as the life he most feared.

But prior to this recent decline, when my mother had asked him if he wanted heroic measures applied if his heart stopped beating or he stopped breathing, his answer had been yes. We were all greatly surprised by this as it represented (to our way of thinking, given his current state) a complete reversal of his prior wishes. Yet he seemed to understand exactly what my mother was asking and had been quite insistent and clear, she believed, about his answer. Given this, as well as our reservations about doing nothing when we had the power to do something, we decided to admit him to the hospital.

There doctors discovered he had an empyema (infected fluid around his lungs). They put in a chest tube and placed him on intravenous antibiotics. It took several weeks, but eventually the infection resolved. He came back to the nursing home, mentally more alert, but physically unable to get out of bed.

So over the next several months, he had more physical therapy. Eventually he was able to sit up in a chair and transfer from the bed to his wheelchair with help. His ability to think, however, has continued to decline. It’s now become impossible to have conversations with him. He recognizes everyone, remembers events from his past well—even seems at times to understand our conversation. But he’s unable to complete a single sentence. In fact, most days, he can barely even start one.

When I look back on our decision to admit him to the hospital for what turned out to be an empyema, I feel no regret. None of us, I think, were quite ready to allow him to die by our inaction when our action had the power to save him—and when saving him might have meant a return to a baseline that enabled him to find some small enjoyment in life. We turned out to be wrong, but at the time we had no way of knowing we would be.

For though he may yet experience joy occasionally (when my son hugs him goodbye, for example), the great bulk of the time he no longer seems to. We don’t think he’s suffering physically. But we can’t tell if he’s suffering emotionally because he can’t tell us.

Yet I don’t believe the father I knew would want to live like this. He can’t read anymore. He can’t exercise. He can’t walk. He can’t even talk. How could he not be suffering, no longer being able to do these things he loved so much?

Then again, maybe he isn’t. Maybe the Parkinson’s disease has (mercifully) so impaired his mind that he’s no longer able to perceive the true meaning of these losses, that they don’t impact him the way the would have had he somehow been able to maintain his cognition. Maybe the small joys he gets from seeing us and his other family and friends is enough to make his life still sweet. I simply don’t know. He once started to tell us that “his life isn’t very enjoyable these days” but we never found out where he was going with that thought because he could never complete it.

So I want my father to die. Or I should say: I don’t want him to live. Not, at least, like he is now—and here I will admit many of my reasons for this are selfish—for the longer I see him as he is now, the harder it will be to remember him as he was. I don’t want to dread going to visit him (as I do). I don’t want the rest of my family to see him as he is or be sad about it. I want to be able to start mourning the father I knew, who has been gone for at least a year, but who I cannot yet mourn because some vestige of him still remains. (One thing this experience has shown me is that the notion that there exists an essential essence of who we are, some central core, is a fallacy. We are, rather, the sum of innumerable neurological circuits. And as I’ve watched my father’s circuits slowly be shut down, one by one, I’ve not once come across a point in time, a loss of a particular function, or a statement he’s made that caused me to say, “There! He’s no longer my dad.” Rather, he arrived at the person he is today by an invisible, gradual process of pruning. Whatever it is that makes us us is not a single switch that can be flipped on or off. It’s thousands, if not millions, of little switches, each which contributes only partially to the light we shine.)

In his book Stumbling on Happiness psychologist Daniel Gilbert argues convincingly that most of the time most of us mispredict how we’ll feel about future events, both good and bad. We imagine ourselves to be far more more positively impacted by good events and more negatively impacted by bad events than we actually end up being. So perhaps my father really is finding his current state less awful than he anticipated all those years ago when he and I talked about my “prescribing him a pill.” I fervently hope this is the case.

But I don’t actually know. In fact, I’m not sure he knows. So at times I find myself haunted by the question of whose end-of-life instructions we should follow, the father who spoke to us while in full health, years away from death, or the father who’s now changed those instructions but whose thoughts are so addled I wonder about his ability to understand—or judge—the consequences.

It seems impossible to consider helping him to die now given that his last cogently expressed wish was to live. Even if he’s changed his mind since then, he’s no longer in a place where he could persuade me to do it, for he’d have to argue with a force of will and intellectual conviction he no longer has. Allowing a person to die through inaction is difficult enough—but actively helping someone to die? It may be morally equivalent, but the weight of it feels entirely different.

Yet I believe a patient’s autonomy in situations like my father’s remains the most important thing. When a patient says it’s time to go, it’s time to go. I wrote in a previous post, The Six Reasons People Attempt Suicide, that one basic reason people want to kill themselves is because they have a philosophical desire to die. That is, in the face of a painful life that is soon to end anyway, they want to assert their autonomy, their sense of control over themselves, and be able to decide not only that life is no longer worth living but also how and when they want it to stop. I believe now, as I believed then, that we should do more than respect this; we should support it. For life is limited no matter what we do or want. Suffering, however, modern medicine has given us the power to control. And as modern medicine has also given us lives that are paradoxically more likely to end in suffering by prolonging them beyond what it once could, I believe we’re obligated as a society to muster the courage to make the end of suffering—not the mindless prolonging of life—our principle aim.

Unfortunately, however, my father can no longer tell me about his suffering. I surely wish he could, though. I wish he and I could have a conversation now like the one we did when I was in medical school. Because if he asked me to “prescribe a pill” for him now with the same conviction he did then, I just think I might.

28 comments to My Father Is Dying

  • D. Lane

    I am so sorry to learn of your father’s decline.

    I was very moved by your story, and I hope your father dies peacefully soon.

    I have been following the Brittany Maynard saga, and your story illustrates why she thought it was necessary to act while she still had her mental capacity intact.

    Your post also reminded me that wanting to die rather than experience this or that is one thing when it’s hypothetical; it’s another thing altogether when it’s upon you. Having worked in rest homes for many years, I’ve often heard people say, “I want to die.” Yet, in a crisis, I have seen many of these same people grasp at life—even when their lives seemed very bleak. I guess it’s hardwired into most of us. Yes, I want to die—but not today.

    My father is declining too, though with no specific diagnosis. We have had end-of-life discussions order to help me understand his wishes. He wants to stay at home, of course, and at one point he said he’d want to go on living “as long as he could wipe his own ass.” More recently, when I reminded him of that earlier conversation, he amended it to “as long as I can work the remote” (Hah Hah). But I know when the end is near he is likely to end up in a hospital because as you said, it’s difficult to give up the hope for a better future without knowing for sure that every possible avenue had been explored. And I know my stepmother will want that for my father, just as your family wanted it for yours.

    We can’t know the outcome in advance, so it’s impossible to know if we’re making the right decisions—the human condition in a nutshell.

    I wish you and your family well.

    Diana: Thank you.

    Alex

  • Lisa

    I have not faced this as of yet, but I truly appreciate the open and raw honesty offered here by Alex and Diana. Thank you.

  • This is exquisite, Alex. And heartbreaking!

    Hugs to you and your family,

    Maureen and Darrell

  • This was a wonderful, wrenching post. My mother lived in a vegetative state for over four years because my father, a physician, could not let her go. And I, an only child, could not insist that he disconnect her although I knew that my mother would want him to. Then he became mentally incapacitated by a series of TIAs (following a major stroke some twenty years earlier from which he recovered most of his cognitive abilities). I moved him to a fancy nursing facility near my home, halfway across the United States. He continued to think he was in New Jersey and I didn’t try to dissuade him. He seemed content enough and managed to die following heart failure without any need for me to make any decisions.

    Even though this problem of the continuation of life in what are really terrible circumstances of incapacity has existed for some years now, we really are no closer to knowing what to do. And unfortunately, decisions we make while perfectly competent may not hold up when we are no longer competent but unwilling and unable to let go. I think we will have to live for awhile with ambiguity and accept it until we have better means for communicating with people who can’t communicate in ways we currently understand. I also think that we are going to have to learn to distinguish between fear of dying and of death and love of the little life we have left. Still this will be a balancing act. We are not good as a society at dealing with ambiguities.

  • Kerry

    My mother’s years with Parkinson’s disease followed the same decline as your father’s. I mourned her loss long before she died. When my father could no longer care for her at home she spent her nights in a group home and Dad would take her home during the day and care for her with the help of home-health aides. Aspiration pneumonia finally took her life in 2009. In 2012, at the age of 93, and after several unattended falls in his house, my father chose to take his life. After observing my mom’s suffering he chose to dictate the terms of his dying rather than leave his house for a group or nursing home where he could no longer dictate the terms of his living. I have no argument with my dad’s choice.

    After watching my parents struggle in their older age I find it harder to regard aging as any kind of adventure. I know, however, that I am never alone because, as part of humankind, many others are going through the same things I am.

    Thank you for sharing your story.

  • Ariel

    Sorry to hear this, Alex. I went through something similar with my grandmother. The worst part about it was when I got to the point that I was just hoping she would die soon. I had no idea what if anything was happening in her mind when the dementia had fully set in, but I could see and hear how hard it was for her husband, her children and all of her grandchildren (me included). I knew she would never want to be in the state she was in, but there was nothing I could do about it. My mother later made me promise to put her out of her misery if she ever got to that point when she was older. I hope there is an easy way to do that in the future because I’m not sure I’d be able to look myself in the mirror if my only option was putting a pillow over her head.

    I hope things are rested for your family soon.

    Sincerely

    Ariel

    Ariel: Thanks.

    Alex

  • J Manly

    In 1988, my father was the first of his generation to die. Our family was completely unprepared for his death, but we all learned from the experience. Life comes to an end, whether we are prepared or not.

    My sincere sympathy for your family’s journey with your father as his life ebbs. It’s an excellent example of why executing a durable power of attorney for healthcare decisions, naming a decision maker and at least one alternate, is an action all of us should take early on—ideally, once we reach adulthood—and update as our life circumstances change. Advance directives are not enough. They can never cover the myriad circumstances that can—and often do—arise.

    Lacking a properly executed durable POA for health care decisions, families are left to falter, as your has done, even when as a physician you know that recovery to a higher level of functioning is unlikely in the extreme.

    Yet there is a usually a window between the time health begins to decline and decision-making becomes impaired. Perhaps this is the time to begin this discussion with your mother, about the ending she wishes for herself. It’s also certainly wise to think about initiating this conversation with your wife, so that your father’s journey is not repeated.

    Namaste.

  • Linnie Bird

    Dear Dr Lickerman,

    Over time you have made a huge difference to life, to how I see things, and how I react to things. I thank you from my heart, for sharing your wisdom and your words, for being online sharing.

    This that you face with the death of your father is beyond my imagining, beyond advice and instruction. I can only send you my deepest thoughts of kindness and care. Please trust in yourself to be able to cope with this, to find the way to be true to yourself and your family. You will be all right, you will go on to be comfortable and serene again; this will become just one more thing that has formed and shaped you. Your father goes to whence he came, back to the dust that shapes us all, to the chaotic eternity of time and matter.

    I honour your choices and thoughts as a man, as a fellow human being. Be at peace with yourself.

    Yours sincerely,

    Linnie

    Linnie: Thank you.

    Alex

  • SG

    Alex—So sorry to hear about your pain and your dad’s suffering. I sincerely hope and pray he finds a peaceful end soon.

    Pragmatically, what are we trying to preserve when we preserve an ailing, failing mind and body? The “me” in us that we identify with in our day-to-day lives (transaction-wise) is indeed a multi-faceted complex comprising of the body, mind, intellect, all of it, the only utility of this “me” is as long as these equipments are functioning. If a person cannot identify with that “me” in him on a day-to-day basis, and neither can one else around him, there is not much transaction that can happen between the individual and the world. But beyond all of this is also the “basic expression of life common to all” that allows this body-mind complex to express, what about that level of existence, how can we overlook that?

    We say “end-of-life” decisions can only be made by a healthy mind not by a mind in the midst of suffering and if the loved ones were a part of the discussion and decision, the decision should be respected and supported. I have my doubts; the fickle mind that we all have keeps changing all the time on small decisions (starting from what clothes to wear to whom we marry to what our kids should be when they grow up… the list is endless)… what to talk about decision on end of life (of which we have no experience of whatsoever..). So then we are not that pragmatic after all.

    Difficulty in such situation arises when the burden of that decision is on loved ones, because ending a loved one’s life at will is the toughest call one can make and not ending it causes the unbearable pain partially at the condition of the person and partly due to our own helplessness. It is painful no matter which way you go. Wish there was an easy answer…but there isn’t… human condition (intellect and emotions in one package) causes such dilemma for us. All I can say is hope you all get to a decision point that the family can live with without an iota of guilt or regret…

    Hope you find all the love, strength, and courage you need to get through this phase of life!

  • Alex,

    Thank you for the insightful and heartfelt post. I am sorry for your father’s situation, and hope he is able to be content and at peace if not completely happy.

    My dad had a cerebral hemorrhage which nearly killed him, but then I authorized brain surgery (!) to relieve the pressure. After about 2 weeks of near coma, he began to recover. But he was left with aphasia, the inability to recognize or verbalize common objects.

    I read about the condition, and about some miraculous recoveries by other (younger) people (my dad was 81 at the time of his stroke). So I tried to help him retrain his brain. At one point—the first (and really only) self-reflective moment since his hemorrhage—he asked me if he was ever going to get any better. I just about lost it there. Of course I thought (hoped) I could fix it. But that was never to be.

    My dad live five more years in that not-fully-cogent state. He generally recognized me, but not my wife of 25 years, whom he had known since high school, or our grown children. He didn’t seem unhappy, but I was surprized to learn occasional reports of him being belligerent or somewhat physically violent (something that was very unlike his previous self).

    Since that time, my wife and I have “made a pact,” that neither of us ever want to live like that, and we want the other (healthy) one to help us end our life if we end up in that situation. I worry that if you had a hard time rationalizing how to do that, how am I or my wife to deal with that? We are crystal clear now that is now how we wish to live (and die). Do you have any advice for us on how to make these wishes known, and able to be followed by our loved ones or the doctors who end up caring for us?

    Thanks for any advice, Alex, and again, my best wishes to you and your dad.

    Steven Crisp

    Steven: I don’t know that I do have good advice. It’s impossible to anticipate all the specific ways that future medical tragedies might unfold, but it’s those very same specifics that we use to determine what we want done (and not done). It seems to me there is no way around a loved one having to use his or her own interpretation of past discussions with us about end-of-life care. Because we can only discuss our wishes in broad strokes, it’s up to our loved ones to apply those broad strokes to specific situations when we can’t. The problem, then, of course, is that our loved ones feel perhaps more responsibility for whatever decision they make than they might want—so much, in fact, that they might not make the decision they think they should. Maybe the best answer is for us all to tell our loved ones that we trust their judgment, acknowledging that they may not be certain in their decision-making, but that it’s okay with us if they aren’t. Perhaps also that they should feel free to decide for us based on what they would want for themselves if they were in our place (presuming, of course, when we have these discussions we feel our ideas about end-of-life care are the same as theirs).

    Alex

  • morag

    Why not chant for him to have a peaceful, dignified end? In his sleep perhaps. Dill your prayer with love and gratitude for his life and have confidence the Law will be compassionate. NMRK.

  • Ann

    My father was 82 when he suffered his first of several strokes until he died 10 years later (three years ago) of a heart attack. Before that first stroke, he had loved life, still worked on paying projects, and told us (quite seriously) that he wanted to live to 100 years old. After his strokes, his wish for living to 100 remained—even though he was physically a shadow of his former self (he had been a strong swimmer and qualified lifeguard), and mentally much slower. But he seemed happy enough. Except that he he had hankered to be taken swimming, and I still regret I did not organise a swimming trip for him, the way he had taken me swimming when I was little. It would’ve been possible—he wasn’t incontinent and there are lots of public swimming pools here in Singapore.

    I, too, had momentarily wished, a couple of times, that he would die, for selfish reasons: I dreaded visiting him. Now I regret not having taking the opportunity to connect with him (never did in the past due to unhealthy family circumstances) in little ways and gestures that people can, and do, with their loved ones, no matter how awkward the feeling. If I could do it all over…

    I’m sad to read about your situation, Dr. Lickerman, and I hope things will be resolved naturally soon.

    All the best.

  • Helen

    My heart goes out to you. May I offer a small bit of comfort: when my own father died after suffering from Alzheimer’s for two years, I was surprised to feel that I got my “real” father back. His death allowed me to mourn and the memories of his suffering faded with time but, paradoxically, I was able, almost immediately, to enjoy old memories and photographs of the man who was slowly lost over the two years prior to his actual death. Such comfort and such relief!

  • Eve

    Dear Dr. Likerman

    I was very moved by your post, which took great courage. I am sorry for your father’s suffering and for the suffering it is causing you and your family.

    My mother suffered from Alzheimer’s disease for over five years. Sometimes I could put my finger on the tiny steps she took into oblivion, but I was never sure, not even to the end, what remnant of memory remained. I always made sure to greet her with a hug and a kiss and speak to her as if she could understand me.

    During the last six months of her life (she died at age 93 having been in perfect health until the onset of the disease) she was hospitalized several times for unexplained fevers. Her hospital stays were very painful, with endless blood tests and a strange environment which disturbed her greatly. We had copies of her living will (which I wonder why you don’t mention) and I always showed it to her doctors and explained that she had requested that no extreme measures be taken to keep her alive. But time after time the doctors ignored her requests. I found myself conducting a campaign for her “right to die.”

    She passed away in a nursing home after still another prolonged and useless hospital stay. It took me several years before I could remember her as the vibrant opinionated loving woman she had been before her illness. The experience has left me terrified of Alzheimer’s and dementia.

    My thoughts are with you and your family.

    Eve

  • Peter Campbell

    Dear Alex,

    So sorry to hear your description of Len’s life and the impact it has on you. All I can offer is that you, he, and family remain in our thoughts and my private prayers.

    I have a clear memory of Len as a vital, interesting, gracious man of just a few years ago.

    Keep strong!

    Peter

    Pete: Thanks. It’s great being surrounded by you and others in the Campbell clan.

    Alex

  • Jane

    Alex,
    I am so sorry to read that you are going through this struggle. If only there was a “die in one’s sleep” card that could be played, and a big sign to declare when the time is right. I had to accept that life was over for my husband several years ago. Now I watch my mother’s slow decline with dementia and wonder daily about her quality of life and the actions or inaction I would choose in a crisis. She no longer recognizes me, though I have visited her daily for years. Formerly dignified, independent and productive, Mom slips between dreams and reality and cannot care for herself. She is often fearful and confused and can’t be consoled because she can’t hold on to words of comfort. In spite of two small strokes, however, her physical health is stable and she is in no pain—except for always being cold and sometimes being hypersensitive to touch. She exists, but does she want to?

    I have read that humans are capable of adjusting their expectations so that the seemingly intolerable is tolerable. Even as I ask what I would want for myself, I wonder if, like your father, I would want to hold onto a new reality. The process of dying is as mysterious as death. The miracles of modern medicine have handed a heavy responsibility to families as they try to make the best decisions.

    Lengthy, I know, but your words spoke to me. Thank you for sharing that you don’t have the answer. That helps too. I wish strength and peace to you and your family.

  • Ruthanne Wong

    Dear Alex,

    I have lost both my parents and so has my husband; we have therefore lived through the unpredictable and complex end of life chapter in four entirely unique ways.

    First, I want to say that our use of the word “suffering” does not serve our understanding very well. Intractable physical pain is separate altogether from emotional suffering that accompanies diminished physical and mental capacity. We suffer, grievously, when we observe our parents live such circumscribed lives. Yet it does not surprise me that your father asked for his life to be prolonged long after he passed the point he previously viewed as “not worth living.” I believe we must allow for the possibility that the final chapter—in the absence of unrelieved physical pain—may have value to the heart and spirit that is nearly impossible to perceive from the outside and by the able-bodied.

    It’s helpful to realize that you have already lost your father in most meaningful ways. The grieving started a long time ago. And, in my experience, the long goodbyes are the hardest. However, you have not yet had to let go of your father’s person, and I want you to know I would give a great deal to squeeze my own father’s hand or kiss my mother’s cheek once more. It takes a great deal of distress tolerance to open oneself up to this intimacy in the face of certain loss, but perhaps this is a challenge you might want to consider.

    Finally, I wish for you and yours to adhere to the ability to embrace life in the face of death, and to discover the deep reservoir of endurance it takes to create value at this difficult time. . .

    Ruthanne Wong
    R

    Ruthanne: Thank you.

    Alex

  • As my father continues to slowly deteriorate, my siblings and I are faced with many of the same decisions you and your family face. We ask ourselves the same questions; we too are “haunted by the question of whose end-of-life instructions we should follow, the father who spoke to us while in full health, years away from death, or the father who’s now changed those instructions but whose thoughts are so addled I wonder about his ability to understand—or judge—the consequences.” My heart goes out to you and your family, Alex.

    Candace: Thank you. And mine goes out to you and yours.

    Alex

  • Alex,

    My sympathies are with you.

    My mother told me when I was younger, “Don’t cry when I die. People are feeling sorry for themselves and their loss when they mourn. If you have something to share with me, do so while I am alive, for when I am in my dotage, I will nevermore be aware.”

    True to her word, she is leaving on her own terms, and I can do naught but respect her decision.

  • Tara C

    My mother has Parkinson’s and I know her path will likely be similar to your father’s. She is still doing very well at 74, but I know that down the road things will get much worse and I am bracing myself for it mentally. Sending you warm thoughts and peaceful journey vibes for your beloved father.

    Tara: Thank you.

    Alex

  • Sam

    I really feel for you Alex and know exactly what you’re going through. I lost my 80-year-old father 6 months ago to lung cancer. He was in denial that the 60+ years of heavy smoking had anything to do with his cancer, arguing that you only get lung cancer from smoking.

    He was also in denial about end-of-life preparations and would refuse to discuss it whenever it was delicately brought up. To him just speaking about death was inviting it in and he would never discuss it.

    It was a long and hard 2.5 years seeing the strong man who was such a presence in my life slowly wither, grow smaller and weaker in front of my eyes. He is at peace now and his struggles are over.

    There are dark times ahead of you but I can guarantee that one day there will be light at the end of the tunnel for you and your family.

    My deepest sympathies to you and your family at this time.

    Sam: Thanks.

    Alex

  • Ruby

    Your words resonated with me even more than usual today. I often turn to your posts for comfort, advice, and words to ground me or to make me think deeply.

    My mother is also dying. Of what was originally diagnosed as Parkinson’s disease, now thought to be Progressive Supranuclear Palsy of the parkinsonian subtype.

    I’m also a physician and have seen dementia many times before, which doesn’t make it any easier to deal with this gradual leaching away of my mother’s personality, mind and body. Over the past 3 years, since first having symptoms at age 65, she went from completely healthy to almost mute, incontinent, barely walking, dysphagic.

    I feel like I could have written much of this myself! I also wonder, as you do, if she’s “no longer able to perceive the true meaning of these losses.” At least she doesn’t appear to be suffering.

    I try to find comfort where I can, knowing that she’s still here for me to touch, kiss, talk to. The mourning process is hard and there is no closure, as she continues to slip away and yet is still here. Ruthanne Wong, your comments are incredibly helpful as well—thank you!

    After all this preamble—my actual dilemma is regarding organ donation. My mother left no end-of-life wishes (actively refusing to discuss this issue) but my father has thankfully been very clear on his goal of only focusing on her comfort. I think I would find some solace in this tragedy if at least other lives could be saved through organ donation when the time comes. But for most organs—it requires CPR and ventilators at least temporarily, which I fear would be traumatic both for my mother physically and for the family psychologically (to then have to “pull the plug”). As the doctor in the family, I’m looked to for guidance but I’m very conflicted about this isse. I’d appreciate your thoughts or suggestions.

    Alex, I hope your father and your family find peace.

    Ruby: Thanks for bringing this issue up. I think if the entire family can find the same comfort as you do in the thought of making your mother’s life even more meaningful by donating her organs then the psychological trauma of maintaining her on a ventilator to harvest the organs (a terrible phrase) could be managed. No need, for example, for any of you to see her on the ventilator, it seems to me. If the rest of the family doesn’t feel that way, however, this might not be a battle worth fighting. I will say that both my wife and I are strong proponents of organ donation. We both keep ours in tip-top shape and if we die out of turn, it would be so nice to think of others benefiting from all the work we put in to maintaining them! I hope you and your family find peace as well.

    Alex

  • I. and J. Marcus

    Dear Alex and family—as friends of your father, we have watched a thoughtful, inquisitive man, who loves his family and is proud of all of your accomplishments, arrive at this stage in his life. We no longer visit him as we worry that we tire him out; small talk was something he couldn’t abide in his prime, and he is unable to follow more complex thought patterns. We feel for your Mom, too, who has lost the man she married and lived her adult years with, and for you and your brothers, and your children, in whom he was so proud. We try to keep in touch with your Mom, but we’re not sure if we simply “remind” her of her loss as well.

    Your Dad is/was a passionate thinker and inquisitive man whose thirst for knowledge and learning was admirable. He was always concerned about “passing” the exceptional Lickerman genes forward; he has nothing to worry about, in that all of his descendants have turned out to be so accomplished.

    Our best thoughts for a peaceful end to this ongoing nightmare.

  • Eva

    20 years ago my mother contacted her local medical school and asked if they wanted her body. They gladly said yes.
    An option to consider if organs are “too old” or life support prior to donation to difficult.

  • Zahra

    Dear Alex,

    Thank you for putting into words much of what I’ve been feeling and experiencing the past few years—and doing so with tremendous sensitivity, honesty, and heart.

    My father passed away last Thursday—Parkinsonism from suspected Progressive Supranuclear Palsy. I now find myself trying unsuccessfully to organize the events of the past 18 months into some manageable construct—so I was particularly struck by your statement that, with this disease, it’s impossible come across a point in time, a loss of a particular function, or a statement my dad made that caused me to say, “There! He’s no longer my dad.”

    This week has brought an outpouring of love for my dad from his family, friends, menthes—each sharing a story or two about how he’s touched their lives. With each story, I feel like my dad—my vibrant, kind, brilliant, compassionate dad—is back, replacing the man whose condition was so heartbreaking to me, particularly in the past three months. At the same time, I find that it is his sheer physicality that I miss the most—and, as Ruthanne said above, I would give anything to sit by him and hold his hand or lay my head on his chest. Up until the end, I know he did experience the sweetness of these times: while it was difficult for him to speak or express emotion, he would touch my face in wonder or squeeze my mom’s hand before drifting off again. I only wish I had been more mindful of those moments instead of losing myself in the never-ending project-management aspects of his care.

    I”m grateful, however, that I did have various “conversations” with him in the past year where I acknowledged the frustration that he may have been feeling at his condition, and told him what a wonderful father he’s been. His responsiveness varied in the past months, and I can only hope that those words resonated with him in some way.

    I hope you, your family and your father are able to find such moments—albeit fleeting ones—and to find comfort in whatever choices you have to make.

    Zahra: Thank you so much for posting this. The line about wanting to lay your head on your father’s chest choked me up. And my condolences for your loss.

    Alex

  • LJ

    Hi, I forget how I wandered here, but what a lovely essay. I wanted to offer this: with each of my parents, who lived to 86 and 98, I found that as disease took over, I shifted into the role of a sort of loving parent with a pre-verbal infant. As their minds ebbed and bodies weakened, I had a lot less to say to them with words, and more than ever before in my life, with touch. And sound.

    I’d sit quietly with richly soothing classical music playing, and do things like gently rub small circles on their back. Or warm lotion in a microwave and do slow, gentle hand massage. I’d keep up a little patter if I felt the need to speak but as soon as we both relaxed, we connected through touch. I just slowed it all down a lot. I’d ring out a very-warm washcloth and use that pre-massages. I think a lot of old sick people feel cold.

    Just suggesting that if you’ve had not much physical closeness to your dad, you could try discovering how comforting it can be to soothe him a lot more than you ever would have before, with touch. In my experience, it soothed me too.

  • Deanne

    Dear Alex,
    I linked to your post from your comments today on Slate.com. My father passed away in December after a long, complicated illness. My father was an athlete and phys. ed. teacher for his entire healthy life and to see him bedridden for the most of the last three years was heartbreaking. I live many hours away from where my father and step-mother were living. My step-mother was pretty firm in her belief that discussing the end of his life would only depress and upset my father. Because I couldn’t be there with him much of the time, I felt it wasn’t my place to have these end of life discussions with him … and then leave him depressed for my step-mother to deal with. For the last couple of years it was difficult for him to carry on a conversation due to the poorly titrated pain meds he was on. This was another factor in me not initiating these difficult discussions. As it turns out, he had discussed dying with his best friend and felt that he was protecting us, his family, by not discussing his wishes. And we thought we were protecting him. I wish this hadn’t been the case, but hindsight is 20/20.

    I am just starting the process of realizing that he’s no longer here. I hope in time my memories of him bedridden and so ill will fade and the happy memories of my childhood with an awesome father will come to the surface.

    I hope that you are able to find peace with the decisions you have made and that you have some lovely final moments with your dear father.

    Deanne: My condolences on your loss. I too am just figuring out what life is like without my father here. It feels mostly just strange.

    Alex

  • I am so sorry for the loss of your father. He clearly had such a large, positive influence on your life, and the life of your family members. May your memories of him give you peace and comfort.

    Louise: Thank you.

    Alex

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