Allow Natural Death

My mom and I have more than a couple things in common. We are both the kind of women who want things done, but don’t like to wait for others to help us. So we do it ourselves…for her this behavior is mostly a thing of the past…because she really can’t do most of those things herself anymore. But of course there are exceptions. Like climbing under her bed to get all the things that have fallen down there into the great beyond. Well, she did it, and she managed to catch her breath afterwards too. And she didn’t complain too much about the pain in her back either. She felt she had accomplished something good. She was glad to get her stuff back and she was so glad to NOT have to ask for help or to wait for someone to give it. She was proud of performing an important task all by herself…just like she always has.

Of course, we learn loads of stuff from our parents. And some we will want to unlearn later. Today my mom told me that it is that  impatience of insisting that we will do it ourselves that I should avoid. She says that if I do what she did when she was in her forties, I too, will have constant pain from doing things like carrying five gallon drums of tar up the ladder and to the roof. Okay. It’s a deal. Even in my fifties I promise to avoid this or anything even vaguely resembling it. It was the seventies when she was doing this and other equally challenging tasks to be the hyper achieving domestic goddess that she was. But I don’t think it was the influence of the women’s movement that put her onto this way of being a woman in the world. She just liked being busy and taking care of business that needed doing. It made her feel that was of use and she was.

Just because my mom’s body is incredibly de-conditioned and far too weak of heart and skeleton to do the tasks that she wants to do – I won’t be trying to stop her. She feels so good to be accomplishing things that need doing. I know she may get hurt or have a hard time breathing or have a bout of chest pain or the bed could collapse on her…she knows that too. But she puts it on a balance and says I want what I want and I want it now. It isn’t her being old…it’s her being my mom. And someday I will be doing those things others don’t want me to be doing too. Don’t even bother asking me to stop.

Thanks, Mom.

Here is my letter to the editor that was recently printed in my local newspaper:

“As the true costs and savings of Vermont’s single payer experiment are debated, I am certain that there are assumptions galore in the figures put forth both by Mr. Hsiao and Ms. Wilton. I don’t believe that the “truth” of these complex matters is knowable at this time. It is likely that those who don’t support the idea of a single payer system will embrace Ms. Wilton’s figures, while those who do support it will like the looks of Mr. Hsiao’s numbers. Again, these are the details that we can’t know at this time. But, if given a choice, I would choose a hugely expensive system that provides the health care that all Vermonters need and deserve rather than a hugely expensive health care system that causes working people to foregoe care that puts them at risk of losing house and home and maybe even their lives, leaving their survivors to for paying for that expensive care after they are gone. Either way we are living with the outcome of decades of a “fee for service” business model that cares little for the needs of real people while building a system capable of  growing profits for health care insurers. I can’t wait to see what we do next.still stand by my other opinions expressed and absolutely still support our attempt to get single-payer (or whatever we want to call it) insurance for all of us. I believe it is only a matter of time before the whole country does this. We must and we must find a way to do it.”

I was challenged on the stance that I have taken above and this is how I explained my point of view. ( It may seem off topic but the financing of health care for all of us young or old, in Vermont or in the entire US, is one of utmost importance.)

While finance is not my area of health care expertise, I do feel I am an educated observer especially in areas concerning elders. I am proud of work I have done that has a common thread of patient and family centeredness. I often describe myself as a systems thinker with a front line focus. It fascinates me to look, listen, and learn how things really work rather than how they are supposed to work at the point of care where we are touching our patients/clients. I admit that my non-stop patient centered focus has been responsible for occasionally slowing processes while ways are sought to make them work for real people. I have heard from many persons in our community that care of frail elders is exasperating to them…care given that seems excessive in its aggressiveness to prolong life while quality diminishes. This is a complex issue, I know, and has its bases in the many pieces of our system of care that families must struggle with at the end of their loved ones’ life. My heart lies here where so much suffering could be prevented. I know there are communities that have worked to address these challenges and that it has resulted in reduced Medicare spending. I wonder if there will be new interest in this since the threat of loss of revenue from readmissions looms large for hospitals.

Though we may disagree on our state’s future means of paying for the care of Vermonters I wonder if we can agree on some of the ways of saving on the costs? Perhaps, in the future I should keep my comments on that side of the issue where my expertise lies.

Thanks to all of those caring and knowledgeable folks who are working on this because by doing so, they are making the world a better place,

Courage my love.

Of course, we all are getting older day by day. Babies, kids, teenagers, young adults….all those wonderful(or not)  developmental phases that we get to journey through on our way to the end of our days. It is expected that failings of our physical body will make clear to most of us that aging is changing us in ways we may find difficult. We will need to adjust, to modify, and to keep moving forward in new ways. I am grateful that this “aging” is such a slow process, allowing time to wrap my mind around the adjustments that must be made for a body that is changing in some very uncomfortable ways.

The work of  promoting Allowing Natural Death has become a tiny(very) bit more real to me over the past 17 months as my own body has been affected by conditions that mimic some of the maladies that I had assumed would come later …much later. Changes in first one foot then the other foot have progressed to include my hands and many of the joints in my body. The changes have made it impossible for me to do the work that I have been doing for the past 20+ years of my life.  I often feel like an elderly person whose movements have been limited by pain, swelling, and stiffness in various joints. I am doing many things to address these symptoms; trying to adjust, modify and keep moving forward. But really I have to laugh…as I write daily about aging….my body is acting like that of a person who is much older than my 57 years. It is, I suppose, a useful exercise for me.

I am reminded almost daily of what many elders live with constantly. Pain that limits movement and makes daily life difficult. Pain can also rob sufferers of the fun of life. It intrudes on those moments when we are trying to concentrate or lose ourselves in those activities which once took us away from real life as we created art or music or a lovely meal. The list of things that we can no longer do because it hurts too much or because we have lost the strength necessary to do them, grows longer and longer. It is not a good feeling to watch the garden become overgrown because we can no longer squeeze the clippers or grab an invading weed. It is maddening to be unable to open a container when no strong handed person is around to do it for us. It can be depressing to have to “let things go,” but I am convinced that this is the secret of life.

I look forward to eventual relief from what ails me now. And like elders that I have listened to, there are good and bad days. “When you have a good day, use it up,” I have been told. I do. And I learn. I understand better now why after many years of diminishing “fun of life”, an elderly person may feel ready to “let things go” in a final way.  A way that means “let me die now.”  This too is allowing natural death.

As I began this year I decided to write to you (whoever you are) each day as the Grateful Apologist. I was hoping to explain why the concepts of allowing natural death made sense to me and maybe to others who might read what I had written. That’s the apologist part. And it was also my intention to thank those who have helped  me along the way. That’s the grateful part. I have done some of both of those things over the past five months and there is still much to explain and many more to thank.  And I will. But I keep noticing that there is so much more to this than allowing natural death.

Aging and dying being the mystery that it always will be, I was not really ready to include my parents stories here. It has snuck up on all of us slowly but surely, until it has become impossible to deny that my own mom and dad are frail elders. Their diminishing abilities are what tipped us off; with my mom clearly asking for help while my dad continues to believe that he may be able to mow the lawn at some point in the future. And I am reminded of the unknown territory that we are traversing on a daily basis. I am learning…and I always will as I try hard to embrace the  mystery that unfolds as my parents grow further away from me…until memory is all that I have left of them. But I am not ready and each day really is precious.

I am also realizing that the spiritual has grown to be the most significant source of insight into how we all can choose to be better at loving ourselves and our loved ones as we move through those very last phases of our aging and dying. I have seen the ways that many of my elders have chosen to spend that time and I want to do it differently. I will be writing more about this of course because I know that I am not the only one and there is so much more to this story.

She surprised me once again, my mom. I thought sure that when her most favorite of doctors, her cardiologist, suggested she have a cardiac catheterization, that she would say yes without hesitation. I was surprised when she said “no, I think I am ready to let that go.” I was even more surprised when I tried to convince her that, “No Mom, I don’t think you’re ready yet.”

You are not ready to say no more interventions on the road to decreasing function and increasing discomfort and the end of your life even though we have anticipated it for such a long time already.  You are not ready to stop all efforts to keep your body going. You are not ready to stop enjoying those things that you can still enjoy. You are not ready to know the end of the stories of your loved ones because you are deciding to welcome the end of your life. You are not ready to accept that more treatments will make no good difference in the way your days are spent. You are not ready to let go of all that is your life now. And surely you are not ready to stop hoping that things can get better. Mom, you are not ready yet.

But thanks for giving me time to think about this because it may be that I am the one who is not ready yet.

I love you, mom, and neither of us is ready yet.