Having difficulty — dad died in 2008. I have a basement of things — mostly writing…must be THOUSANDS of poems, started collections, forgotten beginnings, things left undone. Bits and pieces of him, his heart, his spirit, that no one in the world will see. Here they sit. For what? He would tell me to let them go, they are just things, gone as he is. But it seems a betrayal. He’d laugh at that, I know. But still. All his work, his passion. For what? To be tossed in recycling. Doesn’t seem right.
Yesterday I pitched my idea for a new book. I had been excited about it for days – felt alive and alert and looking forward to the writing of it. But, oh well – someone had just recently done a book very similar to what I was proposing. These things happen, and of course I can still write it – perhaps for a different publisher. Because, write it I will – write it I must. It feels like a legacy sort of thing and something I want to do for teachers of young children out there. And as I write this piece now, I realize that at some level I struggle with the feeling that I am entitled to leave a legacy. I mean, who am I after all? Just some teacher educator somewhere. So, where do I get off thinking my legacy is worth anything.
“…what you leave behind is the evidence of the life you lived,” says Jill. “I want people to live fuller, richer lives and the way to do that is to realize that we all hang by a slender thread that could be cut at any time. I believe that we all should have a legacy plan so that we leave behind the gift of good records, the gift of good directions, the gift of family stories and the gift of ourselves. This is different from your traditional estate plan or your financial plan, but, in the end, may prove far more valuable to your family.”
If you are a widely published and/or read writer, your legacy of words is an obvious one. That’s the advantage of blogging — your words and thoughts and values are out there to share with the world even after you are no longer a part of it. As long as someone pays for your domain name, of course.
Apart from this blog, which will disappear when my consciousness does, what is my legacy? My bins of yarn and fabric? My shelves of books? My box of poems, finished and unfinished? Certainly it’s not my money, because I have none left to leave.
In truth, I believe what I left as a comment to my daughter’s Facebook thoughts about her father’s legacy:
You’ve got me thinking about legacies, and what they really are. Your dad’s most important legacies are the differences he made in the lives he touched as a teacher, mentor, father, friend. Those things live on and are paid forward. The stuff that turns to dust and ashes is really not that important in the long run. Pick a few things at random to save when Lex becomes interested. Let the rest go. The best of his legacy is inside you.
And perhaps the best legacies that we can leave our families are our examples of living with passion and purpose — the behaviors and values we model each day as we “Enjoy Every Sandwich.”
Thinking about it. Annoyed by it. Just not yet destroyed by it.
There were times during that icy week without heat that I could imagine just slipping into a frozen sleep and not waking up.
There were times during the week or so after, floundering in a mix of aches and fever and stuffed sinuses and peppery throat, unable to rest or eat or think, that I could imagine dosing myself into a cloudy sleep and not waking up.
Discomforts for the young can become depressing struggles for elders.
And, if it’s more than just discomfort, if it is, indeed, mortality beleaguering your cells — as it is for my first hospice patient with whom I sat for several hours today — how do you wrap your mind around that?
When I got home from that visit, I found an email letting me know that I have three poems accepted for an online poetry site, the new version of which will be up sometime over the winter. Two of the poems I submitted were based on my experiences with my mother during the last stages of her dementia.
Mortality. It’s just the way it is. We are all terminal.
In the meanwhile, I have to come up with a recent photo to go along with my bio that will go along with my poems on Cyclamens and Swords. The photo that they have — and the one that was on this blog for a while — is almost a couple of years old.
So I take a new photo.
Yeah. More reminders of mortality.
But I do my best to look my best — a little blush, a little hair teasing. Only there’s no denying the passage of time, fine-lining it toward the final loosing of that mortal coil.
I have a unique relationship with death. My father was an undertaker, and we lived in an apartment above his business. Contemplating death and dying — my own and others’ — has been a part of my life since childhood. I have sat vigil during the hours and days of the deaths of both of my parents. At the age of 71, I am closing in on my final years. I have no control over when or why I will die; but I am learning about the choices I have about “how”.
During the intense training that I had to undergo, I learned about my role and responsibilities as part of a hospice team and examined my reasons for choosing this kind of volunteer service. I found that the experiences that Keyssar shares in her book take whatever personal motivations I have for becoming — in her words –“a midwife to the dying” and draws them into an even greater context of compassionate and cosmic significance. As part of her stories, Keyssar reiterates the point that it doesn’t matter what one believe about an “after-life;” the focus of her message is to live fully while embracing the fact that we, after all, are all “terminal.”
At the end of her book, she provides a list definitions, internet links, and bibliographical references if the reader chooses to further explore the range of information available about compassionate care during the final stages of life.
The final chapter in Keyssar’s book is a poetic Epilogue (see below) that captures the intent and the spirit of the mission of those who choose to honor and celebrate the final, fleeting days (and sometimes months and years) of a human life by becoming part of a palliative care and/or hospice team.
Job description For Any Member of a Palliative Care Team
I am here to witness
the sacred hearts
whose loved ones die in their arms,
in the homes, in their beds, in hospitals or other places.
Peacefully, nor not.
I am her to witness
the sanctity of human life
as the spirit is released from the temple
to join once again, with the invisible cellular infinity
of the Universe,
the mitochondria of the Milky Way,
becoming energy to light the stars,
since we know —
the energy we manifest as a particular human being,
like any other,
can neither be created
God, by any other name by any name, by many names,
by no name,
I am here to witness
as it enters the body
and exits for the last time.
The miracle of birth.
The miracle of death.
The miracle of each moment in between:
the infusing of consciousness
into each and every cell
enduring every moment
we are here
I am here to witness
to know that Love is eternal.
to share this blessing
and to perform any other duties
Last Acts of Kindness is a book that should be read by everyone who expects some day to die.
There was a terrible earthquake in Pacific Ocean today, and Japan is being hit with 30 foot waves. Tsunamis of various sizes are headed toward both North and South America. Untold lives are being destroyed even as I write this.
Rebellion and unrest in the Middle East and Africa continues to escalate, as untold lives are being destroyed even as I write this.
The state of Wisconsin is leading the way toward an America I’m not going to want to live in, and untold lives are being destroyed even as I write this.
It is my 71st birthday today, and, as I watch and listen to the devastating events going on all around me, I am grateful for the life I have right now, uneventful ‘tho it often is.
And that’s why today, on my 71st birthday, I am filling out forms to be a hospice volunteer — because I am used to doing useful things and need to do something useful with the time I have left.
When I moved here to be with my daughter and family two years ago — after almost a decade of care-giving and 40 years of various other “useful” jobs — I thought that I would be happy hanging-out, relaxing, reading, doing my crafts, gabbing with my daughter, playing with my grandson.
Well, I’ve been doing that for two years, and now I’m ready to get on with some kind of more useful life.
There are about five nursing homes in my immediate area, all of which have hospice units. I’ve been on the receiving end of hospice services as a family member through both my dad’s and mom’s illnesses. I know, from experience, what kind of support people in that situation need. And, since I was an undertaker’s daughter, death has been a part of my life since I was born. It is as though I am coming full circle.
I’m not doing this for altruistic reasons. My reasons are rather selfish. I need to interact with and meet other people (and I discovered that the gym and senior citizen center are just not my style); I need to do something useful.
So, at 71 I’m shifting gears yet another time so that my time here has meaning for me. My mother lived until she was 94. I don’t know if I’ll last that long, but, while I’m here, I want to be engaged with the world in a more meaningful way.
For my birthday dinner, my daughter is making my favorites: shrimp scampi and key lime cheesecake.
It’s my 71st birthday, and, even as I write this, my life is good. But as I watch the news on CNN, I wonder — for how long?
Your eight-year old can’t go to sleep because he’s crying so hard. He’s crying so hard because, he says, he doesn’t want to ever die and he doesn’t want anyone he knows to ever die because he doesn’t want to be alone.
You don’t really believe in “God,” and don’t believe in heaven. You’re not religious, and the Golden Rule is about the closest you come to embracing any doctrine, although you try to pass along a moral and ethical code that you hope he understands and continues to live by.
But what about “after?” What about after this life? What do you tell your eight-year old that will calm his fears without outright lying?
What you do is write a book that explains who and what we are in a way that will address his fears yet still be in the realm of what might actually and scientifically happen. ( After all, Carl Sagan thought so.)
Pain. We all feel pain. We all would rather not feel pain, and those in pain usually can let you know where it hurts and how badly it hurts.
Except if they have dementia.
There is a false assumption that those with dementia don’t feel pain because they often can’t articulate that fact in ways that are obvious — especially with words.
From “Pain and Dementia,” referenced above:
Over time your family member may lose the ability to speak or may not make sense when they do. Therefore, it is very important to be able to recognize behaviours or actions that indicate pain. Some of these pain-related behaviours include the following:
* frowning, grimacing, crying
* swearing, moaning, calling out, noisy breathing
* fidgeting, pacing, rigid posture
* guarding an area of their body, not wanting to move
* hitting or striking out
* withdrawing or resisting when someone is helping with personal care
* refusing food
* change in appetite, rest periods, or sleep patterns
* increased confusion, crankiness, or distress
* Sudden changes in behaviour are important to recognize as these are often the only clue that an older person is sick, getting worse in their dementia, becoming depressed, or having a side effect from a new medication.
* Attention to your family member’s behavioural and psychological symptoms are key to improving and maintaining their quality of life.
A recent PBS Frontline program, “Facing Death,” documented the pain suffered by both family (emotional pain) and those dying from dementia and other illnesses (both emotional and physical pain.) You can watch the program at the above link. Also of great insight are the comments left by viewers.
…fewer than one in five people can have a peaceful end, since ‘dying is a messy business’ for which relatives are unprepared. He continues: ‘Too often, patients and their families cherish expectations that cannot be met, with the result that death is made all the more difficult by frustration and disappointment with a medical community that may be able to do no better.’
Relatives who expect aware deaths may become angry and turn their anger onto doctors and nurses when death takes other forms. Dying people often need psychosocial support, but the potential for introducing this occurs only when the dying phase is identified. This is not always possible in trajectories 2 and 3….. [2) long-term disability with periodic exacerbations and unpredictable timing of death that characterize dying with chronic organ or system failures (some cancers that respond to treatment and then relapse come into this category); (3) self-care deficits and a slowly dwindling course to death from dementia.]
After watching the Frontline program and hearing how the doctors explain the options to the families of dying patients, it seems to me that there needs to be more honesty from the medical profession about the dying process, its inevitability, and the benefits to the dying of making those patients as pain-free as possible.
Maybe, because I grew up above a funeral parlor operated by my father, a funeral director – maybe, because I sat at my father’s bedside while it took days for him to die of cancer (his mind was alert and he chose to die at home with a certain amount of pain) – maybe because I survived the excruciating pain of a breech birth and thought I had died and now I’m not afraid to die – I feel strongly that, when death is close at hand, it should be welcomed as a relief from pain and that pain (for example, of old organs failing, of agitated dementia) should be aided by pain-relief medication.
On my bookshelf is “Final Exit,” which I bought a long time ago out of curiosity about peaceful “self-deliverance” when my time comes, especially if that time comes riddled with pain.
But it becomes a lot more complicated if a form of dementia has stolen my ability to communicate my pain and my wishes. My daughter knows that I’d rather die in peace than die in pain.
In the story of the Garden of Olives, even Jesus pleaded for the chalice of pain to be taken from him. No one wants pain, although we often are willing to bear with a certain amount of it if it’s going to get better. But the pain of dying does not get better.
Somehow we need to be educated about that fact so that we hold the best pain-free interests of our dying relatives in mind.