A friend of mine has a relative in the final stages of dying; some of his difficult interactions with this relative (not an immediate family member) have stirred thoughts about our obligations to and expectations of those who are dying. I’d like to talk about two related aspects of the issue: First, to what degree do we conceive of old age/death as a kind of second infancy that changes all the rules?  And second, are people in the final stages of dying exempt from the expectations we usually have for other people — such as consideration, fairness and reciprocity — and do their needs always trump our own?
I’ve known clients with parents who expected them to sacrifice their lives entirely in order to care for them in the final stages of dying. Some of these parents had done reasonably well in their parenting role; others had been entirely deficient and then became infantile and demanding when forced to confront their mortality. What comes to mind is the Biblical commandment to “honor your father and mother.” I’ve always found it relevant that the Bible does not says you should “love” your parents; rather, you should accord them a certain level of respect, given that they brought you into the world and reared you. But what are the limits of “honoring”? Does that mean you must take care of them during their dying months, even to your own detriment, even when they did a miserable job taking care of you when you were small? How does forgiveness come into play, and are some failures unforgivable?
In my own case, I was fairly uninvolved in the deaths of both my parents. My mother died of advanced Alzheimer’s and had lived in a residential facility for several years; it had been a very long time since she’d recognized me. At the time my father began to die of leukemia, my older sister was living with him; my brother lived next door and my two siblings shouldered the burden of his care, along with an old family friend who happened to be a nurse and tended him on his death bed. In a way, I was lucky not to have to confront the really hard choices. If you’ve read my post on the mostly-bad mother, you know I don’t have a lot of respect for my mom’s parenting skills. I honestly don’t understand (that is, on an emotional level) what it would mean to “forgive” her, especially since I don’t believe she did her best (see my post on on the difference between refusal and inability to try). I suppose I haven’t forgiven her and I certainly wouldn’t have made any great sacrifices had I been called upon to do so as she was dying.. My father was hands-off and absent for most of my childhood, but in later years, he was affectionate and took an interest in my life. He has a place in my heart but I didn’t really locate it until years after he died. I don’t know whether I would’ve risen to the occasion had more been demanded of me at his death. To be honest, probably not.
In other cases — particularly when my friend Tom Grant was dying 20 years ago — I have felt the opposite. I wanted to be involved and give to him, to drive him on occasion to a doctor’s appointment, take his two small sons on outings so that Ann, his wife, could be alone with him, help her with the funeral arrangements. My wife was pregnant with our first child at the time and I did give Tom’s needs precedence over my own life. I can’t say that it was a big sacrifice, however. I wanted to be there, and given the amount of family and nursing care available to him, I never felt called upon to undertake anything especially burdensome. Mostly I gave of my time, a lot of it, but those last months were precious to me. Tom was a remarkable person — thoughtful and sensitive; he remained that way until nearly the end, when the morphine began to affect his mind. Our final conversations were deeply meaningful to both of us. Another way of saying it is that, for the most part, Tom made his death easy on those who loved him.
Other people who are dying don’t always behave that way. Because they may feel angry and/or terrified at the prospect of death, they can become irrational and abusive. I’ve seen people who, for most of their lives, were relatively sensitive and considerate people but became entirely selfish, demanding individuals as they began to die. So I wonder — is that more or less appropriate and normal? When confronted with our mortality, is it natural that our own feelings and needs eclipse those of everyone else? Is it natural to expect that other people should put us first and neglect their own needs? Tom didn’t behave that way, but maybe he was an exceptional case.
With one of my clients, her dying mother had ample financial assets but refused to pay for nursing care and instead expected my client and her sister to take an unpaid leave of absence from their jobs to look after her her; it was a financial hardship to both of them but their mother never offered to help them out financially. At first, because they loved her deeply, they felt ready to make the sacrifice; but as time wore on, they began to feel angry and resentful. And because she was dying, they felt guilty about their anger and resentment. On an unconscious level, my client felt that death made her mother a special case, and she (my client) had no right to expect consideration from her, or any recognition of her own needs. I think that anger and resentment make many of us feel guilty in such cases, as if it’s entirely unfair to expect the dying to take us into account.
But is it unfair? Does dying give you a free pass to behave any way you like, as if you’re a baby, and nobody should expect consideration from an infant? Does our sympathy for those who have finally come to face that moment we all dread override everything else? How much can we legitimately expect of those who are dying? Obviously, the answer varies case by case, but the question is still worth asking.
Finding Your Own Way:
This post is so full of questions, I don’t think I need to elaborate on them further in this section, as I usually do. And I obviously have no answers. I’m very curious to hear about your experience with those who are dying, along with your views as to what we can fairly expect of them.
But I will say that Tom Grant will always be my model for how a dying person should behave. Within obvious limits, people ought to die in character, not become someone else entirely. Dying does not exempt you from having consideration for others, at least not entirely. I hope one day (but not too soon!) to follow Tom’s example.
Quote…. “I’ve always found it relevant that the Bible does not says you should “love†your parents; rather, you should accord them a certain level of respect, given that they brought you into the world and reared you”.
I really struck a chord with everything else in your post EXCEPT the above line. Why should we accord respect to people that brought us into this world? Reasons why people bring a child into the world cannot be anything else but selfish, and that age old cliche of a teenager stomping up the stairs yelling – “I didn’t ask to be born” – I totally sympathise with. Bringing a life into this world is not some noble selfless act.
I do agree with you. I think that kind of respect needs to be earned; it’s not automatic.
Couldn’t agree more. For me respect has an inverse correlation with demand. Pretty much like trust. The more someone demands it, the less forthcoming it is.
Thank you for reply 🙂
My parents are quite old now – so this is quite immediately relevant to me. They are both 86.
One of the things I’ve learned over the last few years is that old age means fragility. My parents may live for some years, or . . . will they die in a week or a month; probably not but possibly yes. This adds some particular kinds of pressures.
I do think for most people that old age means genuinely inability. Deafness is perhaps the most common. Decline of ability to pay attention and remember too – my parents don’t deliberately forget names or that they put something on to cook. So in some ways it is a return to childhood – less strength and ability. I do think that it is appropriate that these things be taken into account. I don’t think that someone’s needs should completely eclipse another persons’ except in emergencies – and the demand to do this probably leads to resentment and ill feeling.
It is a complex thing and I’m still finding my way with it. Thanks for raising it.
I do wonder what a modern equivalent of the Victorian’s notion of ‘a good death’ would be. It seems to be a long way from our culture’s mainstream agenda.
A woman in my extended family wants to be dying. She believes she suffers from all kinds of cancer and other deadly illnesses, one after the other. Recently, she’s had three “heart attacks”, where her family has rushed her to the hospital (a one hour drive), only to find that she’s perfectly OK. I guess she feels that only by being dying she can get (or feel that she deserves) the attention and care she desperately needs. Maybe in her book, the dying are entitled to certain priveliges or at least very special treatment.
I don’t think dying gives you a free pass, but I guess it just has to do with if you love them?
If it causes bitterness to rise up then possibly you haven’t still forgiven them or possibly feel wronged by them.
I know with my parents I know I won’t be the one to handle it based on the situations.
It does say in the Bible to honor your mother and father, but it does also meantion not to exasperated you children.
I personally think that parents should honor their children as well. Even though parents are the ones taking care of the children, that if a parent is outside of love, then reading that passage may make parents believe that children owe them that.
I haven’t read the bible, yet I do know there are really weird laws and stuff in there including slavery and other stuff that doesn’t sound like it would come from a god, so I’m not sure if the bible is the always gonna have the answers.
It’s challenging to want to help someone who may have neglected you in your time of need.
Was there a healthy relationship established? Were they there for you when you needed it?
Knowing my parents they never thought to ask me if my needs were met. I was even raised to be extremely independent, that they didn’t owe me anything.
A few years ago I finally asserted to them that I didn’t owe them anything back, and as of yet the relationship has repaired back to anything healthy or reciprocal.
I’m still pretty young so anything is possible, but there is some bitterness still there.
I guess my parents trained me that I owed them, yet they weren’t obligated with the same stuff.
Parents should consider if what they are asking of their children is more they are offering.
In a perfect family or world one would hope that everyone would be sensitive and be there for each other in times of hardship, yet families don’t always turn out this way.
I absolutely dread the passing of my father. He was diagnosed with a narcissistic personality disorder and at one time was very wealthy. It appears he may be developing alzheimers and continues to be cruel, as he was during my childhood. I have disowned him as a father and have no contact with him. When he passes I won’t be at his death bed or attend his funeral. My concern is the guilt that comes with my intentions of not wanting to hurt the man. I just no longer choose to be emotionally abused by him any further. Although I won’t be there for him, I know the sense of guilt for abandoning him will need work on my part. He wants to think he was a good father. Thanks for the opportunity to process this issue. Sincerely, Peggy
Dying is a solitary, frightening and probabkt lonely experience and we all do it the one and only time. As human beings I cannot imagine many of us do it well (given our many human frailties and the often extreme physical ill-health which accompanies it). For these reasons I don’t think we can expect ‘dying’ when it touches our lives to be either neat, containable or un-disruptive. Rather a learning experience which enriches our lives by offering us insight into mortality and reminding us life is brief and stay true to our path on the journey. If those who are dying are behaving less than honorable then staying true to ourselves and what is acceptable for us as an person should go a long way in keeping us balanced and whole during what is often an unsettling and in some cases disturbing experience for a multitude of reasons for all parties caught up in it.
Stephanie, I like your description and explanation of the dying process.
My husband lost a 10-month battle with cancer this year (in 2015) and of course there were moments when he was short-fused and impatient but when we pointed it out he immediately calmed down. He never wanted to be a bother to anyone around him and always worried about me before he worried about himself. It was rather frustrating at times because he needed to focus more on himself!
When he was given 6 months to live, he made peace with that (I still have not, long after he’s been gone) and lived each moment he had to the fullest and tried to be as independent as he could. If I could count the number of times he said “sorry” or apologized for asking for help, even in the emergency room at the hospital, I’d be rich…
So many questions … but I will share my experience with just one question …. ‘How does forgiveness come into play, and are some failures unforgivable?’.
My Tom is Joe. He called me from his deathbed and we had such a meaninful deep conversation. He wanted forgiveness. But what I felt in that moment was compassion. Forgiveness was then not necessary.
For me forgiveness has such heavy connotations of apportioning blame. Whilst compassion for me is accepting the reality of that person without judgement. I am not sure if that is healthy but that is my experience.
i dont think people should take abuse and mistreatment from anyone who is dying,
but i dont think there can be an “ought” about how we “should act” when death happens upon us,
i wonder if when people realise they are dying then subconsciously all the stuff they have repressed starts to come out, cos the shit really has hit the fan and they have nothing to lose? cos they are at the start of the process of letting go completely if that makes sense, only a thought
ive never been in that position so i really dont know how i would be if i was dying, but i think there should be some compassion, but not to the point of taking abuse, or being emotionally blackmailed into things like signing over your own property to step children etc, which i have had friends experience.
its easy to look in on it and say what ought to happen, but perhaps those that stay in good humour with themselves and others whilst dying are very lucky that they have that in them,
cos im sure noone really wants to act in a horrible way when they are in their last days of their life, im sure if they felt they had the ability to choose, they would choose to be happy and peaceful in their death, thats what i really believe,
about being there for parents, for me its about what you can live with? cos you cant change your mind once they have gone, about being with a parent etc when dying, and i would choose to do whatever i could easier live with after they had gone, a short painful time visiting and enduring stuff, for me would be better than being tormented by guilt for years after, and being able to do nothing about it, and that decision would be nothing about forgiveness necessarily but about my psychological well being, selfish eh!
wow, brave subjects, it makes you think, cheers
I think that, when it comes to facing death, the defenses we’ve used throughout life to ward off painful experiences begin to break down. The pain and the fear are often so great we can’t effectively defend against them. So I’d agree with you that as these defenses fail, what has been repressed starts to come out.
When I attended a class in theology we learned that honoring your father and mother was a law in the old Israel about taking care of the family’s property, the land, so that it continued to be owned by the family.
That is so interesting, and completely unsentimental. Just about preserving the estate.
I have to say that I don’t think dying gives you a free pass to be rude and selfish. I don’t think anything does.
However, I haven’t been dying yet, so maybe I’ll change my mind when I get there. It really is one of those things that can only be empirically verified.
Words, definitions, thought,ideas and belief systems. My experience is that we are more than these, but this how we define ourselves. The value that we have for the aforementioned. How they are woven into our lives. What we owe to ourselves we owe to those around us. Whether we are in direct contact with them or not. Understand that this is an opinion and not a fact for anyone else except those who live in the same vacuum of my existence and there may not be so many that I would want to make that an issue.
What do we owe anyone for anything? Is it not the responsibility of parenthood that we provide for children? I’m asking and not drawing a conclusion. Whether we address that issue or realize that fact or not, we have to step up and say something about responsibility.
I have next door neighbors who are the same age as my father who passed away a year or so ago. I chose not to be with my father in his last days on this earth. Not because of much else except the dynamics of our family situation. He will always be dear to my heart with what he knew and did not know about life. I said goodbye to him years before he died. I had the opportunity to work travel and room with him on this occasion saw him transition from being “tight lipped” with little to say to becoming a fountain of information. Fortunately I was able to appreciate the distance he traveled to get to that point in his life.
The husband of the neighbors next door is a retired math school teacher. He was a pilot for a number of years and a veteran of WWII and a participant of a recent tribute to the Veterans of that war. If he suffered at all it probably was from what I like to call the “Frank Sinatra Syndrome.” He did it his way or( it was the highway for people around him). Some people attach the title of being a “hard ass”. I suspicion that maybe he was in his day. But now at 86 life is different. After ulcers and a pace maker and a mild stoke as recent as last year, he faces the reality of his mortality as we all do. He is financially set for life but finds himself in such poor health that he cannot enjoy his financial gains. Out of all he’s been thru he still has his pride. And now I come to what we owe him for that. The word is respect. Until you face that time of your own demise, it’s difficult to own the right to be judgmental or critical beyond observation of whatever he chooses to do or how he chooses to behave.
Some say that the life process encompasses also what we know to be death. And that death as we know it encompasses what we know to be the life process. Even if we see these to be two different processes, respect and understanding is the challenge. Whether it’s with someone we are related to and think we know or someone that we consider to be a stranger. Understanding the definition of respect and how it applies to our world makes us a more valuable tool when it comes to processing the events of another persons life choices. What we understand and accept in our lives, we have those same things to offer others.
I lost my husband first then within weeks my father, and most recently at 92 my mother. I learned something about death and about myself from every experience. None of the people in my life were very demanding ….but their physical needs and fear was demanding of itself. I read about how to talk about death so I was useful to all of them; in that way with less fear everything was softer and more natural. If you are loosing someone too soon it changes everything because you are not ready to let them go. I think to die is sometimes easier than being left to greive. The experience I always find the most meanigful is to let people know how much you care NOW …or forgive them NOW. The peace I experienced upon my mom’s death was due to the fact that I showered her with love and attention for many years before that. We lived 1000 miles apart but calls and gifts and tools that helped her manage diminished eyesight or mobility made life better for her, and that in turn has comforted me.
When someone we know is dying, everything changes, including obviously the relationship. A dying person may be cruel or calm, demanding or isolating, and we can only balance their needs with ours (too often caregivers do not take proper care of themselves). But I do think we need to acknowledge the different circumstances. I recently spent time with my father and grandmother (who is almost 90 and in poor health) and confess I was dismayed to see their interactions. He has decided to (or feel he has to) be her caregiver. She has always been a difficult woman and has treated my father unkindly. However, the truth is he has not changed his reactions to her at all. She bullies him about the house, making him do chores she thinks need doing and he grumbles and does them begrudgingly. She is pleased when they are finished, but as a bit of an outsider, I saw some basic issues (such as her safety or ability to make financial decisions) that he was ignoring. I did not want to make my father feel bad as I think a lot of this has to do with his fear of dying, but at the same time, I did feel like saying if you are going to be her primary support, you have to recognise that the rules of the game have now changed.
I also wanted to add a slightly different thought on this topic. Essentially, we are all dying, whether we have a disease or have been giving a “time left” estimate from our doctors. As Lee said above, we can do something now. Some of the questions asked here could be asked about anyone in any stage of their lives: do our mothers deserve respect just because they’re our mothers; if someone is going through a bad time, do their needs trump ours? Or maybe more importantly, what’s the best way to show compassion and support for people we care about?
I write about depression–for many this is a terminal disease. But often people with depression are not given the same thoughtfulness or consideration as someone with a purely physical terminal disease. They may be acutely aware of their limited time left, but others are not and therefore don’t think about issues raised here.
I think these are good questions to ask–about those we love who are near death and about those we love who may still have a way to go before the end.
Excellent points, all around. I especially like what you have to say about how, in a way, we’re all dying, and the questions raised really apply to all the life stages. Thanks for your comment.
As an oncology and ICU nurse, I have been with a lot of patients and their families, as they died. Often the patient has an easier “time of it” than their families and friends do. It is difficult and scary to watch someone you love die. Fear and pain and discomfort do not bring out the best in us (both families and the patients), and the patient needs to be made as comfortable as he wishes to be. (Our society is not big on this part: doctors underprescribing pain meds and sedation etc…I feel the patient should have more say in his meds at the end of life)
I also feel honored to be part of this process, and was able to help with my mom and dad in an undramatic manner when they were elderly and dying. I feel lucky to have the experience in this that I do, because it enables me to talk with my two grown children (one receptive, one not) about what I want when I die.
I think the human fear of loss and pain are what keep us entangled in our own thoughts and fears at the prospect of a loved one’s death. About what it means to care for a parent who was terrible to us, I don’t know how I feel about that. I totally agree with the statement earlier about parents honoring the children- I wish more people felt that way. Thanks.
What’s the problem, to give dying all they want, to listen them for the hundredth time or change diapers, for example? We don’t need to bring them good, or build a special relationship. Pamper them – that’s all we can, and this is an exclusive benefit. In the end no matter what we do, we’re doing it for ourselves, aren’t we?
…I think this question isn’t so thrilling because of death or special privileges for anyone, but because of the fact that, when somebody is dying, there are no other rights in the world than our own, and justice no longer protect us from our own vulnerability and severity.
I think when a person is dying your life really changes. My dad is suffering from cancer and he just (today) went to hospital because his health is deteriorating. And little old me is going overseas for a holiday in 16 days. I am really depressed and don’t know what to do. I’m scared that while I’m over there having fun he will pass away and I won’t be able to come quickly to see him when he needs me the most. I spoke to my dad about it and he told me to go but as his daughter, I myself want to be there for him until the end.
That’s a terrible dilemma. I’m not telling you anything you haven’t already thought if I say you’ll probably regret it for the rest of your life if he dies while you’re away.
When my mother was diagnosed with pancreatic cancer and surgery and chemo failed to control it, I had to face her mortality and the limitations of my father to care for her. I had to decide how much I could give her. At the time, I was struggling with the challenges of being a fulltime graduate student in my 50s, the emergence of issues related to some childhood trauma, and the onset of depression.
With the help of an excellent psychologist, I realized that the regret I would feel if I chose not to do everything I could would have a profound effect on me. My sister and I spent the next several months traveling hundreds of miles to our hometown to help out as much and as often as we could. My other two siblings chose not to be involved in her care. While I harbor some resentment toward them for their lack of involvement, I also understand that they have to battle their own demons about it.
My mother died early last week. I was holding her hand. I think I owed her that.
And you know you won’t look back with regret and guilt. Lucky for you that you were able to realize what you felt was owed and to give it to her in time. Your other siblings will eventually have their own remorse to deal with.
I think, at the least, and perhaps the most, we do owe gratitude to our parents for our being alive.
However thoughtful or thoughtless our conception might have been, it seems to me that we do indeed owe this debt of gratitude, no matter how good or not good their parenting circumstances or skills might have been after our birth. My existence is important to me, and I’m glad it happened, however pleasant or unpleasant my family experiences became after I was created.
Dr Bob
As long as we acknowledge that there are limits to that gratitude. I’m grateful for my existence, too, but also aware of how difficult my parents made it for me.
Hey
Thanks for such a relevant and well written article.
Keep it up.
Love over intellectualizing.
“Listen” to the situation and “do” something about it, acting compassionately, letting go of the past, the expectations, and as has been said, use your memories, don’t let them use you.
I’m currently in year 3 of dealing with dying liars. My abusing, alcoholic father has already passed, now it’s Mommy Dearest’s time. She’s been on hospice, weakening every day. She’s a snake in the grass and i’m convinced she will be that way until her last breath. She’s proven that “once a liar, always a liar”. I’m at the end of my rope of sanity dealing with her. I’m trying to get her placed in a facility (unfortunately she has no money) and I can’t afford to pay. I’ve done all I can do for her…will I be sad when she’s gone…NO, HELL NO…I can only say that relief will be the only feeling that I will have. I’ve gone through the motions too long.
And all this for a woman who once remarked…”if I had known about birth control, she (pointing at me) wouldn’t be here”. Yes, this was said to her mother in front of me and my then 15 month old son. Really???
No wonder you’ll be relieved when she’s gone. You owe her nothing.
This has been so useful to read. Thank you everyone. I am going through many feelings at present, and it’s useful to have guidance. My brother died just over a month ago after 2 and a half years of cancer. My father is an old man dying and really struggling with his own health issues. I live abroad and was able to take time to be with my dear brother before his final death, and although I miss him terribly, I feel only sadness about him. My father has been in part accountable for my brother’s life-struggles and mine too. My brother was my main male role-model growing up. My dad was very involved in his new life. I feel a mixture of sadness as I’ve never been able to really resolve these issues with my dad as I would get stone-walled, and some disappointment in him because of his lack of compassion for my brother. I feel anger too. I am unable to feel much compassion for my dad – I do feel compassion for him as a human being and I’m truly sorry as life is so complex, but I’m a very emotional person, who feels cold at present. I’m aware that when he goes, I will be left with my own child related feelings. But I don’t actually think that leaving my job here, which provides me with stability and a new life away from unhealthy family issues, by being by his bedside for him would help. I am considering going back to help my step-mother on a practical level. But I can’t do this for a few months and it may be too late. My father has other support from my sisters as well as his wife but I’m torn between feeling guilty, sad, compassion and angered disappointment. It’s not a great space all round. I will be seeking therapy in due course as this will help. Thanks for this opportunity to share…