I have a friend who quit her job and moved to the Midwest to take care of her mother, who has dementia. I have a second friend whose mother is sick and whose father is frail, and she chose to help them move into an assisted care facility rather than give up her work and disrupt her family.
Both of these people agonized profoundly and for a long time over their choices.
One said she owed it to her mother to be with her and care for her, even if it meant upending her life, upending her family’s lifestyle, leaving her friends, and ending her successful career as an office manager.
I have a third friend – an acquaintance yet really – who grew weary of the nasty and angry strain – a pandemic of its own – ripping apart the political and social fabric of the country. He has sold his house, quit his job, and moved to eastern Mexico, where he can live comfortably on his savings and a few small investments.
We live in a world of choices.
In a sense, I think, life is all about the choices we make.
We live in an exciting and prosperous country, but it is also cruel. People continuously vote to reject the idea of government making life more accessible.
The corporate culture tells us we must have at least a million dollars in savings to retire or change our lives as we grow older.
More and more, there is this feeling that we are alone, which makes our choices even more important. I’ve been a hospice volunteer on and off for some years, and the importance of options was driven home to me.
Some families chose to deny death and portray dying as a character fight – “my dad is tough, he’s not a quitter.” I was warned not to introduce myself as a hospice volunteer; many family members took that to surrender.
(BTW, hospice is not about killing people or letting them die. It’s about making very ill people comfortable and giving them the right to choose how they wish to die in dignity and with little pain, or how they want to be sick.)
Some people, I saw, thought about dying and made significant choices about the treatment they wanted, how they wished to spend their last days preparing to leave their friends and loved ones, and how they tried to control their death.
Their deaths were often beautiful and gave their families natural closure.
Others – most people – chose to hide from death.
They didn’t want to talk about it, face it, or acknowledge it by preparing for it. In my experience, they died hard and painful deaths.
Death is taboo in our media unless it comes from a bullet. The health care universe makes a lot of money keeping people alive beyond all reason and with little consideration for pain or comfort.
I know a 94-year-old woman whose doctors and family have decided she must get every available surgery and procedure to keep her alive as long as possible, even as she suffers more and more day by day.
She is rushed from one hospital to another, even as her body sharply declines, and her children fight to keep her alive as long as possible.
It’s their choice, and I can’t make it for them. But it’s not what I want for me, and certainly not for Maria.
We start making choices from the moment we can think or speak.
I made a lot of bad ones and am now making some good ones. One of the good ones I’m making is how I want to end my life.
Moving to the country was a good choice.
So was ending a struggling marriage and looking for love.
So was leaving the corporate world. So was deciding to buy a farm, live with animals, be close to nature, become a writer, then a blogger, then a photographer. And marrying again.
My later life is marked by many more good choices than my early years.
I suspect that is not uncommon. The best thing about growing older is that I’ve learned stuff. My choices have some reason to them and some thought.
I’m not planning on dying any time soon, but I have learned in hospice that the people who think about their deaths and talk about death and plan for it have what I call “good deaths.”
In hospice, I saw many families fighting desperately to fend off death, even when it made no sense to fight with it. I want to accept it.
I want to end my life well. I want to be proud of how I chose to die. Isn’t that one of the most important choices I’ll ever make? And what an opportunity to learn and grow for the last time.
That means celebrating a life, not just mourning it, bringing closure to the family and loved ones, and making sure my leaving this world is in my hands, not the hands of doctors or hospitals or nursing homes or my family.
In America, that requires thought, openness, and planning, which many people are most reluctant to.
Having a good death means facing death well before it’s upon me. It means making my feelings and preferences known, writing them down, and accepting death as an integral part of life.
And for me, it means making sure that the people I love don’t have to give up their lives because I’m ending mine.
I will never forget Connie, one of the first Mansion residents I know well.
She was frail and in great pain, but I remember her telling me that the minute she used a wheelchair, she insisted on moving to assisted care.
“I’ve had my good life,” she said, “I want my children to have theirs.”
I’m loving my life and am in no rush to end it, but I want to do it in the best way for Maria and me when it comes.
I will call in hospice the second I begin to fail severely. I won’t have my life extended by artificial machines and medicines beyond the point of reason.
When I can no longer live naturally (with the help of some medicine and doctors), then I want to leave in comfort, clarity, and dignity.
And of equal importance, I do not want Maria to spend her life or any significant part of it caretaking me or nursing me. For me, love is about caring for other people, not myself.
She has worked hard for her life and suffered for it, and it would break my heart if she surrendered her art or energy to be my caretaker.
I don’t make this choice for anyone else.
Everyone has to find their way, but my preference is clear, and I feel as good or better about this choice as any I’ve ever made.
I’ve had my good life. I want Maria (and my daughter and granddaughter) to have theirs.
Very smart. I’m a retired nurse who completely agrees with you. Having thought about how you wish to die and discussing it with family makes the transition easier for everyone in the end. In this day and age, dying can be a complex process fraught with agonizing decisions, invasive procedures, battles with insurance companies – the list goes on. Death can still be simple and dignified if you plan ahead and make your wishes known as you’ve done.
I agree. I arranged for hospice care for my dad and thank God I did. I lived 5 hours away and went to visit as often as I could. It wasn’t awful. There was a lot of laughter, good nature kidding and a lot of love. And he had his 3 dogs right by his side. The hospice workers knew how to handle the situation. Everyone has to choose how and where they want to die. My mom wouldn’t talk about death and this made everything harder. When she did pass, it was a mess. The situation was so stressful and so unlike when my dad passed.
It is SO important to open the conversation about end of life before it is imminent. My husband and I took a 10-week course on planning our end of life which included wills, power of attorney, advanced care planning, hospice care, Medical Assistance in Dying (MAID) if appropriate, and so much more. In our grief-illiterate, death-denying culture, we have tried to make it as easy for each other to face and go through this time of life. We have had conversations with our daughter and she knows our wishes too. It is such a relief to have a binder with much of the necessary paperwork and information at hand.
I agree. Death is a part of life. If one is in the habit of seeking out information and doing research of choices available, one will die as they lived. In acceptance, not denial, of the inevitable.
I worked for hospice for several years as a social worker. It was a lovely job and I felt good about it every day. Sadly many times I found that families desperate to keep someone alive did it not out of love, but out of a desire to keep their income stream. It was heartbreaking to see and I suspect it happens more often than we’d like to admit.
You are so right – there is such a thing as a “good death”. I worked for hospice as a software trainer before I became a nurse. I then worked for several years in LTC. I watched many people suffer as they went thru endless procedures and medications to cure major illnesses even as they were so cognitively impaired that they were forced to live in a place that managed every aspect of their lives (at a substantial profit).
My own father was irrationally terrified of hospice until the last several days of his life when his skilled nursing facility would not treat his unbearable pain because it was the weekend. Even though he had been at that facility for almost a week, his assigned Dr had not met him so he would not prescribe anything beyond Tylenol.
My Dad and I had many, many conversations about hospice but in the end it was only pain that pushed him to consent to moving to hospice. (I really wonder what his 1st FT caregiver told him about hospice while I was attending school. I know that she was against hospice. I am fairly certain it is because she felt it would affect her job. I wish I had gotten hospice involved much soon so that my Dad would have suffered less but I always told him that I would respect his wishes – which I did.
As one who spent many years in the death care industry after my husband died, please consider pre-planning. Go to the funeral home or have someone come to your home to discuss your options, whether that be internment or cremation. Do you want to become an artificial reef, diamond for your loved one’s to wear, thrown into pottery, fireworks,or sent into space, ? Perhaps, you prefer to become an anatomical donation
( plz consider the cost here, to be transported to a medical, educational, facility, they charge, by the mile or flown by plane ) or maybe you want to become pencils or a paperweight. Lots of choices for your cremated remain. Much I could say here regarding the topic of our death. Yes, It’s Happening to All.
Preplan and save your loved ones the agony of making hard, heartfelt decisions about your demise.
I have recently used the Family Leave Act to care for aging parents. I’ve had time to spend with them, to discuss what THEIR wishes are, and to assist them in ensuring that those wishes will be carried out. We’ve set up Meals on Wheels, got them Life Slert buttons, and helped them update legal paperwork regarding their own medical and estate preferences. I am so grateful that I’ve had this time to be a part of this. I don’t want regrets when they are gone and I will be able to say that I did my best for them, as I love them very much. Your piece is accurate- I truly wish that more would find that freedom – that of making your own choices and not waiting until it’s too late for your wishes to be heard. Thank you, Jon. As always, you hit the mark!!!
Thank you so much for this beautiful writing! I am in the process of getting everything in order currently. It feels good to have things arranged in advance, even though I will probably be around for some years yet…but who knows?
Both you and your wife are true inspirations and your writing inspires me always.
Jon, I loved this post, as it hit home for me. I want to choose how and when my life ends (so many say you don’t know when it’s your time, you have no control over it, blahblahblah) I want to be happyhealthyhappyhealthyhappyhealthy – dead. No lingering for ages in a nursing home or in pain, watching my family watching ME. I don’t want them to suffer the trauma of watching the medical system trying to keep me alive by any means. My desires are for me and for them, as it should be. My gift to my family will be that I die the way I choose to die, and they don’t have to make any of those decisions and carry that weight with them. I still have lingering grief and shame over the way my parents died, and the decisions we had to make for them, wondering if the decisions were right.
I have had facial melanoma surgeries over many years, including a skin graft. I’ve also had skin peel several times in order to reduce the need for surgery. My face has major scarring as a result. I know that eventually a melanoma will escape control and cause my death. The idea does not control my life. As a senior I have no fear of death. My family knows my wishes with regard to cremation. I hate the idea of staying alive when all pleasure in life is gone. My family will let me go to hospice so that death can be peaceful.
I, too, miss Connie and smile when I think of her. I guess that is what we all want. Someone to smile when they think of us.