Sunday, March 25, 2012

When You (Sometimes) Secretly Wish A Parent Would Die

In an article in this month's The Atlantic, writer-comedian Sandra Tsing Loh ruefully recounts the moment recently when a friend asked her how she was doing and she stunned them both by bursting out with the long wail "I wish my father would diiiieeeee!"

And, in the article, she proceeds to discuss her famously eccentric ninety-something father's lingering, increasingly frail and expensive life and the toll this is taking on his dignity and on the family. There are both emotional and financial stresses, the pain of an already complicated relationship made more so by the demands of his aging.

Sandra Tsing Loh has a lot of company among fellow Baby Boomers. We've watched our parents age, not always gracefully. We've seen final illnesses, sudden deaths, undignified aging and long lingering goodbyes for some of our most beloved family members. And in the midst of this, there may be moments of wishing it would all be over -- and then feeling horrified that we could think such a thing.

If we haven't been caregivers yet, we see the stress on a caregiving parent and fear the worst -- that stress will claim the life of the healthier spouse first.

Sometimes it happens.

My childhood friend Sue's mother cared for her demented husband for some years, then was stricken with cancer. Sue was devastated for both parents and juggled her job at an insurance company with coordinating treatments, hospitalizations and paid caregiving for both her parents.

One day, she got a call from the hospital that her mother was near death. Her boss insisted that she needed to stay for an afternoon-long meeting to wrap up a project. She protested that her mother might not survive until after the end of the meeting. After another even more urgent call from the hospital, Sue told her boss she needed to leave immediately and barely made it to her mother's side as she breathed her last. Then she went to her parents' home to find that her father's paid caregiver for the afternoon shift had not shown up and her dad had spent the unsupervised time alone smearing feces all over the living room walls and himself.

She called in to work and let her boss know that her mother had died. She told him she would come in early the next day to reschedule the meeting. He told her not to bother, that she no longer had a job.

She screamed soundlessly, tears streaming down her face, as she turned on the shower to bathe her father.

And all the while, Sue told me later, she raged inside: "Why couldn't you have died instead of Mom? When is this going to be over?" And then, filled with love and guilt, she embraced her dad under the running water.

I could empathize. My father suffered from Parkinson's disease and the related dementia as well as out of control diabetes. He didn't know night from day. He flew into rages. When my sister Tai or I would try to help care for him, he would make creepy, distressing sexual overtures. He was totally incontinent. He had an insulin shock at least once a day and seemed to live on a diet of rum and Coke and orange sherbet. He was surly and combative and delusional -- seeing hordes of brown violin spiders that weren't there.

There were times when I just wished my father would die so my mother could live. And one day he did. But it was too late. Mother was so exhausted and stressed that she died of a heart attack four months to the day after his death. We were heartbroken that our mother had not had the time to follow some of her long-deferred dreams. And we felt guilty, both when he was still living and after he was gone, that we had talked of our father's death so casually and, at times, wished for it so fervently. When he died, my anger and frustration melted away as I grieved for the loss of a father both monstrous and dear.

Losing a parent is a profound, life-changing event. And, for many Baby Boomers, there is a long goodbye -- the devastation of dementia, the long and painful road of cancer, the dwindling away of emphysema or COPD or heart failure. In these cases, you lose a parent over time, in heartbreaking increments -- and sometimes you wish -- for their sake and yours -- that it were over.

If you've found yourself in this situation, it doesn't mean you're a bad son or daughter. You may have times when you feel blessed to be able to give back to your parent, to care for the person who once cared for you. But there may be times -- when you see him or her suffering, when the indignities of infirmity are suddenly overwhelming and the stress of balancing your life with these new responsibilities may make you wonder "How long is this going to go on?"

Mixed feelings are normal.

You love your parent but hate the dying process.

You are grieved by the prospect of losing your parent -- and appalled at the prolonged ordeal.

You are distraught watching the suffering of someone you love so much -- and, at the same time, dread letting go and losing him or her.

You suffer through a multitude of losses when a parent descends into dementia, losing the parent and person you've always known and caring for the beloved stranger he or she has become.

And in those moments when you wonder "How much longer?" or "Sometimes I wish he (or she) would die" and feel instant remorse, it's important to remember that you are not alone, that such feelings are common in these stressful and sad situations -- and that no one else can read your mind.

It's important to admit your full range of feelings to yourself,  to forgive yourself, to accept yourself as is and, should you need to seek therapy in order to deal with your tumultuous feelings, get it sooner rather than later in order to have constant, non-judgmental support as you live through this major life transition.

Therapy may be especially important if there is a darker reason for wishing a parent dead: the pain of continuing to deal with a parent who always was and continues to be verbally and emotionally abusive, controlling or relentlessly critical.

In that case, it's best to seek counseling to work out your own feelings about your parent and endeavor to change the dynamic while you still can, while the parent is still living. Once a parent is gone, the hope that the relationship can change for the better dies with them. Perhaps changing the dynamics of your relationship will never be possible. But you can work through and resolve some of your own feelings so that you can feel more at peace with yourself and your parent at the end of his or her life.

Letting bitterness and anger linger unresolved through a parent's last years and death can erode the soul and lead to continuing unhappiness long after the parent is gone.

When our parents are in decline, there is so much that comes up as past, present and future converge. We mourn the loss of their youth and vitality, even as we feel our own beginning to wane. We may feel a mixture of fear and tenderness as our roles begin to reverse and we become the caregivers of those who took such loving care of us -- or not -- all those years ago.  And, in their decline, we catch a glimpse of our own future -- and feel the temptation to flinch and look away.

But perhaps we can best cope with a parent's decline by admitting our pain and frustration to ourselves and then accepting our ailing parent on his or her own terms, sharing the moment and entering their reality with a loving and generous heart.

It can be a challenge.

It isn't always possible.

But when we can manage,  even briefly, to be fully present with an ailing parent, it can mean lovely moments shared in the midst of sadness and decline.

Alzheimer's is slowly taking my dear friend Tim's mother away. But, in the meantime, when their hearts meet in the here and now, life still can have its good moments. When he visited her at her assisted living facility recently, she was beaming with pride and cradling imaginary twin babies in her arms, to the consternation of staff who were trying to get her to eat lunch. She frowned when one told her that there were no babies.

Tim smiled gently at his mother, imagining a time when she had held him and his twin brother Tom so tenderly. And he said "Those are such beautiful babies. You must be so proud. I'm so happy for you. Why don't we make a special bed in that bureau drawer over there for them so that you can get some rest and eat lunch? You need to keep up your strength to take care of those beautiful babies."

She passed the imaginary babies to him and he pulled out the drawer, softly smoothing the linens in there so the babies would be comfortable.

Then he turned to his mother, took her hand, and they looked at each other with love that transcended years and infirmity, a love that made the moment poignant, memorable and ever-lasting.

21 comments:

  1. Oh Kathy....How I loved this post and how much I can relate to it. My mother lives with me and my husband. My mother is 92yrs. I am her only child. Ever since I was a little girl I have taken care of her in one capacity or another.
    I cared for her during increasing depression from age 5 to 18. Telling things to me that a young girl should not hear at that age. Even much later in her life when I said to her that it was wrong for her to tell me those things, she would say, well I had no one else to talk to.
    I have been there for her for so many things that I would have a list longer than I could ever type. She has criticized me to family over the years, even to my own children. Every vacation I had when working I would fly out to her, spend money on her. Nothing would ever satisfy her. She is almost deaf these days now. I write notes to her or speak real loud. Mostly though when she could hear me, she would only think of herself and all of her needs. She was in a nursing home for awhile but she was always sick. The food was not to her liking. She would call it the jail house to me. Or they would play around with her medications and she would become very agitated. I was forever trying to right the upside down apple cart! With mom here with me and my hubby she has not been sick. I cook the things she likes to eat. Mom watches her favorite things on tv. She basically has a great life.
    As for me...I am 55yrs. Struggling with the pain of Fibromyalgia, Arthritis, terrible bursitis in my right hip, a bad lower back, do not sleep well. Eye problems.
    Sometimes I feel my mom will outlive me! I'm drained and tired and feel like I have walked a million miles for my mother and I'm still walking, but the going is getting slower and more burdensome all the time.
    My mom and I have our quality moments together...and that's a good thing.

    I feel like I could go on and on...but I won't. I will close now and thank you for this post and for allowing me to vent if just a little.

    Love, Blessings and Happiness,

    Susan

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  2. Oh, so many things here resonate with me since we are going through this with my mother in law. Thank you for the validation and wisdom.

    I was so touched by your story at the end. It was as if Tim had gone back in time to see a real time picture of himself as a baby, and how loving his mom was with them when they were babies.

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  3. The hardest job in the world is caregiver which you so aptly explained the double edged sword. I was so impressed with Tim's understanding and caring. Sometimes the daily struggles dull compassion. I think a caregiver support group would be very valuable. There, no one would judge and all could relate.

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  4. Kathy, what a great public service you provide here!
    These are the critical issues for our generation, and yet, we have received so little training or background to face them.
    Thank you for laying out the problem, the emotional toll it will take, the reactions and skills we need to cultivate.

    Many blessings.

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  5. Dear Kathy, . . . your postings help all your readers. I do so hope that this one will become part of the social media--the ethernet--and will reach many, many people. My mother died from a heart attack when she was 58. My father died of a heart attack when he was 68. So I did not watch them grow old. I did not watch their minds slowly move away from reality. And yet, so many of my friends have lived through and with what you describe here.

    As our population ages, your posting is going to become even more important. I'm glad it will be available to all who looks for help.

    Peace.

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  6. Wow, Kathy! What a heart-wrenching, poignant piece that took such courage and honesty to right. But, a piece that resonates with so many.

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  7. Tim's response to his mother was beautifully full of understanding. She is lucky to have him to visit her.

    A frank, compassionate and helpful post. Resonates with me, as with other commenters.

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  8. Kathy being a caregiver is the hardest thing to do. Making decisions for someone else's life, second guessing that you made the right decision whether it is your parent, your spouse,or whoever. I have been there with my mother-in-law until she passed away and a caregiver going on 13 years with my spouse. Somebody asked me why I still worked. I said I had to have something else to think about besides what is going on with my hubby. God gives us strength to do things that we never thought possible even when they aren't aware of what is going on around them. You do have some thoughts as why me, but you know that is part of life. A learning part of life to be able to handle what ever we are given. I do belong to a caregiver group that we all take care of somebody which has really helped because they understand as you understand what each other is going through. We all cry together. When my parents was sick before they passed away, I relied on my brothers and sisters, because my hubby was sick at the same time. You always wished you could do more, but you couldn't be in two places at once. Thank you for your post. Your Missouri Friend.

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  9. Writing this is such a service, Kathy. My situation was never so dire, but when my dad died, after years of being in pain and so unhappy, I was sad, yes. Sad for what he had become -- angry. Distressed. But the dad I had loved died years before and when he actually passed, there was sadness mixed with relief and the sense of "what do I do, now that I don't have to look after him." It's a real adjustment. There's a song in a Little Night Music called "Everyday a Little Death." When my dad died, he gave me back my life -- and that is a gift.

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  10. I also went through this with my Mom.Parkinsons and alzheimers.
    My Dad a diabetic, was stubborn and didn't ask for help until it cost him his life.I was angry at him for so long for dying because had he been a different person, we could have still had him.
    My Mom,never slept and didn't let him sleep either.
    We took care of her for 4 years and it is a family job. One person can't do it alone. but I was glad to have my Mom those 4 years. She kept me company in the house while I did my own things and it felt good to have her there.She wasn't much trouble after the toilet part and was a happy soul till the end. The end is not a joyful one and yes you wish for death. I am sure she did as well.
    I am a believer in keeping ones parents and in strong family traditions as they keep people close to what matters.
    Life birth death... this is all a process one must experience in the journey we all partake in as people.
    God Bless all families who take care of their own.
    They are sure good people.

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  11. I am glad that you ended on a happy note.

    Otherwise all I would wish to say is, that there is absolutely no shame or guilt attached to wishing that a life, which has become a burden, meaningless and distressing, should not be prolonged at all. I wish there was something we could do that equates to the easy death of a much-loved pet.

    Why can't be be humane when it comes to humanity?

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  12. Oh honey what this must of taken out of you to write such a powerful post. I can only imagine how many lives you will touch by sharing this.
    I know it brought back my memories of loosing my parents.
    I just pray I want be a burden on my children.
    Thanks honey for asking about Clint and Christi. They are doing okay. Both trying their best to be strong.
    As always I am so glad I came by tonight.
    Been wondering how you are doing? You have been through a lot yourself in the past months
    Love ya
    Maggie

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  13. You know, there is so much happiness and sadness about life. I felt the hopelessness in Sue's story, and wondered how her boss could give her the sack over racing off to see her dying mother. I have cared for a father dying with C.A.
    A mother-in-law with Alzheimers and a second mother-in-law with C.A. When you care 24/7 for someone. it is just too much physical and mental strain. Yet the strange thing is, often they don't realise. If they are in their right mind, they even expect more. Usually this is because they have never been a total carer. They don't know what its like to carry the load without time out.I pray that I go before I am too old, and I am now sixty seven and don't wish to be a burden on my children.

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  14. I've been pondering the weight of this post and am left with a nagging question.How do we keep our children from wishing us dead? We have been discussing this and think we have a plan. As usual, you take us to places we weren't eager to visit but needed to consider. You're a gem!

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  15. When my mother was failing, I thought it would last forever.

    It didn't. I was with her when she took her last breath. She looked surprised and peaceful after a lifetime of fear and worry. And I, the daughter who could never make her mother happy, was freed. And glad to have seen the surprise and peace at the very end.

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  16. i haven't been able to read your posts for a while, mainly for the reasons of YOUR article! Thank you for your insight!

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  17. I am so far behind in reading blogs, I almost decided to not even try and catch up. Thankfully, I didn't. Thankfully, I read this post. You provided great comfort and insight for me. I was especially comforted by your words when you said, "...the pain of an already complicated relationship made more so by the demands of his aging." This describe exactly how I feel about my mother. She really is not able to make any demands because she lives about 600 miles away. She will be 96 next month and is still living on her own. She stubbornly refuses to get help from caregivers, though she really doesn't need it, and refuses to move closer to her children, although that would probably be impossible to do now. Still it puts a burden on me especially because I am her designated 'caregiver' should she need it. My own health is not good at this time. It is a worry. She remains in denial that she can just go on as she always has until the end comes. Knowing her, she will. She is in good (excellent even) health, but she is really not up to managing the house any longer. I hope I have the wisdom to make my aging easier on my children before they have to make decisions for me.

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  18. As a long time Caregiver I can say that seeing someone you Love die in layers, slowly and often undignified and painfully, being able to do nothing, is worse than the actual Death. You also Grieve for the loss of what was and what will never be as this "Process" is taking place, because it doesn't just affect the infirm and aging person, it affect the entire family and particularly the primary Caregivers. The Caregiver's Life is put in suspended animation... and you might as well be afflicted yourself because you're living it too, but in a different way, and without the support that those being Cared for are often receiving by Agencies and Doctors, etc... When they finally pass from Time into Eternity it is a Welcome Relief and that can leave you with a Host of Conflicted Emotions. If you are caring for the Mentally Ill or a Disabled Child that may never live Independantly there is the knowledge that it could last all of your Life... and what if they outlive YOU, who will care enough to care for them with Love? And that too can be a sobering and tormenting Reality. Dawn... The Bohemian

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  19. There's another aspect to this. My father - sole surviving parent - is someone I barely know, who had next to no useful interaction with me when I was a child, and who has had little or no interest or understanding of anything I did since. That is partly down to a very insular attiude of his, he is marginally literate at best and utterly uninterested in anything except what he used to do for work. We have nothing in common. Nothing. He isn't particularly bad healthwise, but requires attention and housekeeping (he has no idea how to cook or run a house). I spend hours a day with him and its massively boring and sometimes actually disruptive - I'm so drained by spending time with him I find it hard to get on with anything else. I don't actually dislike him or wish him ill - I just hope he will die peacefully of a nice sudden heart attack or stroke really soon. Preferably several years ago. I do all this out of duty rather than love, as he did in fact provide financial support when I was a child, of course. Its a bloody pain. I'm in my early 60s now and he is 96. How much longer. I often feel like my own life is almost over, and that too damned much of it is taken up with something that is a complete dead loss.

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  20. I have come to feel that institutionalization is fairest. Early.

    Why should the young be punished -- economically, psychically (on top of the oldest, most painful wounds many of the elders have inflicted, yes, unknowingly, for the most part, but still)? For what? A rare moment of connection, twisted into something vaguely (not quite!) redemptive? Not worth it, quantitatively or qualitatively. Lost income, lost careers, lost prospects. Anguish. Nothing more than a waste of the lives of those who are still capable of joy. How can it be right for two, three, four lives, to suffer for the sake of one? To be worn into their own old age early?

    Are these elders better served by their tormented children than by trained professionals? Elder abuse happens I think only occasionally from sheer maliciousness, and more often at the hands of overwhelmed, long-suffering children. Daughters, most often.

    The degeneration and diseases of age are a matter of brain matter. The delusional person smearing feces is not your father, in those and most moments.

    It is neurology and pharmacology that will eventually make bearable the horror of too many people's last days, and the middle of their children's best years.

    Until then, frankly, everyone's interests would be protected by putting afflicted elders in the hands of people who know to care for them. If it were up to me, I'd have an army of neuropsychologists and lawyers ready for a GP's referral. I'd have a settlement of homes, paid for by taxes (because in fact the rest of society suffers for the 50 something daughter's forced unemployment), staffed by rotating shifts of people who are well-renumerated for their professional toil (because, even with training, who can take it?).

    No, it's not their fault; no, it's not fair. But all this could be managed better.

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  21. "How do we keep our children from wishing us dead?"

    Take responsibility for your health now. Exercise, eat well, maintain relationships with people outside your family, pursue hobbies and interests, stay as active and connected with the world as you can.

    I don't begrudge older people wanting to stay in familiar and beloved surroundings. This supports cognitive and emotional health in oldest age. However, if you currently live in a highly taxed three-storey property surrounded by several acres of land, it is going to be a tremendous burden for your children to help maintain you in the comfort you'd prefer (unless they are wealthy and you have planned your finances well). Consider moving to a home that's simpler to maintain while you are in good health and relatively young, so that you build a new sense of place and memories that can buffer you later.

    Plan your finances well. Write a living will, too. If you think your children might struggle to come to agreement in the worst case, this will help preserve their relationships after you go.

    Be honest about your needs, and stay flexible in terms of how they can be met. Think realistically about who can do what. Be willing to compromise around who you will let help you. Recognize limitations when they occur.

    All that said, a person who asks such a question is unlikely to be a burden.

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