For centuries, one of the primary roles of children – a fundamental reason for having any – was caring for their spouses or parents when they got old and died.
Because I write about illness and aging often, I hear from people who upend their lives and decide to care for their parents, often at the cost of great sacrifice.
This is considered a noble and saintly sacrifice, whether it’s for an older spouse or an ill or aging parent. I’ve heard many people talk about it as an imperative of life that couldn’t ever be denied.
I’ve heard from hundreds of people, primarily women, who give up their work, homes, ambitions, and dreams to care for their parents when they can’t care for themselves. I feel for them.
Some love doing it, and some are exhausted, broke, and regretful.
It is noble and admirable – and exhausting – work.
I am 17 years older than Maria, my wife, and I have heart disease and diabetes, and I want to say upfront that the caretaker’s life is not the life I want for her, and I am planning even now to make sure it doesn’t happen. That doesn’t mean we won’t help each other, but we need to consider some boundaries around that.
She has a right to her life, also.
I believe in her thoughtful and honest moments that she doesn’t want the caretaker’s life either. We love one another a great deal, but that life is founded on our respect for the lives and work of each other. Losing that would be a tragedy in our lives.
Modern medical science has profoundly altered the course of human life, writes Atul Gawande in his essential book Being Mortal. Our healthcare system has taken significant steps to keep older people, parents, and spouses alive, but we don’t, as a culture, accept any responsibility for their care.
That is left to loving partners and often guilty children, who undertake enormous sacrifices to care for our older loved ones.
Two hundred years ago, writes Gawande, it took people about 15 days to die after they got sick. Now, it takes six years, at great expense, and often inhuman suffering. Just because we can do it, it doesn’t mean we should.
Doctors are trained to keep people alive no matter what, not to consider the quality of their lives. Machines are their natural morality.
For most of human history, dying was an intimate personal experience shared by families. As recently as 1945, writes Gawande, most people died in their homes. By the 1980s, only 17 percent of people did.
The aging experience has been shifted to hospitals, nurses, and children. Hardly anyone can afford home health care for older people, even if they want it, and most insurance companies won’t pay for much of it, if any.
The horrible choice many people feel today – I hear from them often – is to give up their lives and become overwhelmed nurses or let their parents die cruelly and alone. It’s an impossible choice. I know from my Mansion work what it means to care for the extreme elderly. It isn’t pretty or easy.
Most of these caretakers are women.
Women’s lives have changed radically, as we all know. Fewer and fewer women are ready to give up their careers and live to become caretakers, as so many feel they have to do.
I know many parents who expect their children to be their caretakers, no matter the disruption. This is what they have come to expect.
I’m not one of those people. I didn’t do it for my parents, I don’t want anyone I love to do it for me. But that’s just me.
Maria is not my child, but I would never want Emma or Maria to give up their lives to care for me when I can’t care for myself.
We will have to figure out something else. We are thinking about it and working on it. It’s something we will need to talk about – a lot. This is not a morbid or depressing issue for me. It’s about leaving the world with dignity and compassion.
I have two chronic diseases – heart disease and diabetes. I have a ways to go, but it’s almost certain I will get seriously ill and die before my wife.
We often talk about the difficult choices of caretaking, and I have told Maria many times I don’t want her ever to become my primary caretaker. That would be an abandonment of our work together throughout our marriage – supporting one another in the life and work we choose.
I do hope she will help me, or if the tables were turned, I would help her.It’s a timely issue for us, especially in the face of looming surgery. And it isn’t straightforward.
We support each other’s work but feel obligated to help one another during sickness and emergency. It just isn’t simple. I want to be there for Maria if she needs me; she wants to do the same thing.
In two weeks, I’m having my left big toe removed. It sounds grisly and foreboding, but the truth is, it’s become a fairly common outpatient proceeding.
Hospitals don’t permit people to stay too long these days, even if they can’t walk; I will go home with a numbed leg I can’t walk or stand on.
The nurses tell me they will provide me with a walker and show me how to use it, but I am reasonably certain that I will not be able to function for several days without almost constant help of Maria. That makes me uneasy.
We have an understanding. She will care for me as long she feels it’s necessary if I need help after the surgery. We don’t have a time limit. It just can’t be for good. She will need some time in her studio, or she will go bonkers.
As I age and face the music of being old in America. I can promise you it will not take six years for me to die when the time comes.
Maria and I go back and forth about this, but we talk about it.
We understand one another.
Like me, she is also troubled when she hears the stories of so many women – some friends – who have spent crucial years performing the often complex and disturbing work of caring for their elderly parents.
It’s not about love for me but life.
I have a good friend who left a job and a life she loved in Boston to care for her mother in Ohio; her husband had died years earlier.
“I gave up everything to care for her,” she said. ” I neglected my two teenage daughters, blew up a beautiful relationship, and never recovered my career. My brother was never asked or expected to do this; my mother always assumed it would be me and told me she expected it. She is gone; bless her, so is a lot of the life I worked so hard to build.”
We have to think about this; it will not happen by magic.
The amputation offers Maria and me a good opportunity to consider how this might work. But it’s my surgery, my toe, my recovery. It’s my responsibility.
I understand this is difficult and painful for people. It isn’t easy for me, and the system offers us a few easy solutions. We aren’t sure what I will need or if I will die suddenly, become invalid, or be healthy for years.
The core idea is that Maria doesn’t lose her life to help me end mine. That’s the point for me.
I like the idea of asserting the importance of boundaries. I can’t always meet these goals, but they get me thinking about them.
Now is the time to start.
My toe will be helpful for once.
Jon, this is one of the most poignant postings I’ve found you to make and I’ve followed your blog for years, from Canada. I am eighty-five myself, managing to cope, so far, living in the country, stacking and heating by wood as you both do but I know, like you, I am only as good as my health allows me to be in regard to my independence. You would do for Maria, I feel, as she would do for you, in caring for your medical needs but therein lies the challenge…how long, how serious, how much can be devoted to an issue such as this. Your toe amputation is a troubling thought, your other medical issues hanging around like a blanket over your life which you wonder if it will enfold you entirely one day..yet you keep going, as do many others facing aging and medical issues. Your work and assessing the elderly at the Mansion brings forth the reality of aging in society today. Without your support and that of your many readers, the Mansion would be less than it is today. What is hard about life and about aging is not knowing what tomorrow will bring. Thank you for your openness and your spiritual work in inspiring your readers.
Sandy Small Proudfoot
After my mother’s big toe amputation she spent 90 days in rehab as per her insurance allowance. She healed and received physical therapy there. It was a godsend for me, her only daughter.
Jon, this post touched that button inside of me that weeps for the women of this world (and some men, too) who, in the name of love, give up all to care for another. As you said, some believe this is noble, that this is the normal path for a child of elderly parents, or a spouse of an ill or dying spouse. Atul said that traditionally, the entire family would take care of the sick and dying person. Families all lived closer together, and took turns and shouldered the work together. We don’t live that way anymore. Children move far away, or the parents have moved away from the children. Not many stay in close-knit groups anymore. I think that you and Maria are so wise to talk openly about each of your wishes, and pave the ways to make them happen. I watched my Mom lose her entire life to caregiving, first her own siblings, then to all of us kids, and then to my Dad at the end of his life. It crushed her. No one deserves that life.
I loved this book by Atul Gawande, I read it in a few days. He described my experience with my husband’s death 7 years ago to a T. This wasn’t an experience of long term caretaking, but rather the inability of the medical community to coordinate anything or to have an honest conversation about his condition. His few early symptoms were not interfering with his life and he suddenly landed in the ED and was diagnosed with metastatic lung cancer, tumors everywhere including 4 in his brain. the doctors immediately jumped into brain radiation and planning for chemo.. none of the doctors talked to each other and no one said anything to us about his life expectancy. I spent a maddening 7 weeks trying to get someone to give me an honest answer and hours on the phone trying to get anyone contact me at all. they just said they were going to extend his life and make it a good life. It was me who finally said he’s dying and needs hospice.
I’m sorry if this post is too self indulgent. you brought this book to me and I I was so excited to read a book by a doctor who gets it. it was a gift.
The post is great and important, Penny, nothing self-indulgent about it and thanks..
I am in that situation with my mother right now. It’s very hard. Thank you for understanding.
Thank you Ann, and good luck with this…
You and Maria will be fine. You have a computer, love to write, love to take photographs and to read, and now have a recovering dog, Fate, to keep you company. Maria will get her time while keeping an eye on you, don’t worry. I’m 81 so I know whereof I speak. Getting older is an adventure!
yes, we will be fine, in part because we are talking about it and thinking about it..
And it’s not an either/or situation: You can “love doing it” and still be “exhausted, broke and regretful.”
You can, of course, love doing it and be tired, but many women (and some men) are also finding and exploring ways to be loving and also keep their own lives …like getting help a couple of days a week and reserving some time for themselves.It is, as I said, a complicated situation but an important one. Many people are struggling with how to do it, accepting it isn’t helping them although it’s a perfected valid solution for some.
I was actually speaking from my own experience. *I* loved doing it, but *I* was still exhausted, broke and regretful. It’s hurtful to have one’s own experience dismissed by someone in a hurry to make his own points, express his own opinions.
Except for some of your political posts, this (in my opinion) is one of your most important posts. My Mom expected that I would drop-out of college and come to live with her. I didn’t. I was a non-traditional student (meaning older student) and this was my only chance to receive a degree. I felt selfish and torn and I still live with a lot of guilt about my decision. Mom lived almost 5 hours away and I was financially challenged and had and have serious health problems myself. Mom had a very active social life and got around till around the last year of her live, but she couldn’t adjust to living alone after my dad died. There are no easy answers. Thank you for writing about this.
I am 76 and single, in good health, knock on wood. I live with a sweet standard poodle, aged 5. I have had no regrets and live as if life is forever. My biggest concern is my dog Charley if I should pass before him. Not many visitors these days, many of my friends have already walked the rainbow bridge. So concerns about his future keep me up at night. Its something I do not talk about. Thanks Jon, for allowing space for our comments!
Quote by George Bernard Shaw. (The actor Jeff Goldblum shares it often as a raison d’etre.)
“This is the true joy in life, the being used for a purpose recognized by yourself as a mighty one; the being a force of nature instead of a feverish, selfish little clod of ailments and grievances complaining that the world will not devote itself to making you happy.
I am of the opinion that my life belongs to the whole community, and as long as I live it is my privilege to do for it whatever I can.
I want to be thoroughly used up when I die, for the harder I work the more I live. I rejoice in life for its own sake. Life is no “brief candle” for me. It is a sort of splendid torch which I have got hold of for the moment, and I want to make it burn as brightly as possible before handing it on to future generations.”
You are being forward thinking and caring about the years ahead. This will make a world of difference for you and Maria as you cope with changes/challenges in your lives. For eight years I functioned as my mom’s care manager as she progressed through Alzheimer’s. Being childless and single at the time, I was able to continue working at intervals in mostly part time employment. Between hospice services and a small, independent ALF, well run and about half the cost of the chain ALFs, she experienced excellent care, dying there in 2007 in her peaceful little room in the presence of a hospice nurse. It was still challenging to experience the hills and valleys of the medical world and her various stages and health issues. Early on I felt I’d made an inner spiritual and practical agreement to serve my mom through those years, and have a MA in Gerontology, which helped me navigate more easily and locate the services we needed along the way. I still had my moments of wanting to change my name and run off to Paris! But I found the strength to stay the course. Met so many wonderful folks along the way out there in the trenches. One spell she spent in a nursing home was rough, but our hospice team helped us sort that out. Just some thoughts to add to your discussion. Best wishes everyone…
Well said Jon. Too many families don’t have the dialogue that you and Maria have. It’s such an important topic. God bless you and Maria.