Today I met with the hospice nurse, while she looked over Paul's charts, his stats and took in how he looked. Pulse, temp. all that stuff fine. "He could be like this for a little while", she said, "he's only lost one pound this week, now he's 110. So you don't want to stop your life, put it on hold."
"So", I asked, "how do you know when someone is ready to die?" "You don't know", she said. "For him it could be tomorrow or a month from now. He could aspirate on some food and that could turn into pnemonia. If we see that things are very close we will call you. But don't think you have to be in here every day. Go have your life and be with your son."
I was just talking to a friend tonight, Chuck, who lost his mother a year ago. "I was at a Y Indian Guides meeting and I get the call from the nursing home; 'Your mothers dead'. And I had to tell the guys I gotta go my mother just died and they looked at me and said 'Your mother just died and you were here?'
There's this idea I have, maybe from the movies, maybe from reading obituaries of well known people, that they were constantly surrounded by their family and friends.
Who has the time to do that?
Who has the free pay-check?
Here their are elderly spouses that come and see their partners on a daily basis and they are the ones that do that. Otherwise the families are working and come on weekends.
Their was an older man in the nursing home, he'd had a stroke and his family would show up once a week and pull him into the tv room and they'd play music; guitar's, horns.... I sat in with them a few times and the dad played the bongos a bit, and I sang. That was the Sprague family and they are exceptionally gifted musically and quite beloved in the county. Quite a family and they really fit that ideal I had of going out with the family all around.
But a lot of families live far from one another. Paul's family lives in the Bay Area or on the east coast. So when they visit it's a real commitment. This weekend Paul's first wife, Sachiko Kanenobu Williams is coming to visit with her partner and I really look forward to seeing her. She's a singer-songwriter and she and Paul met in Japan right before the release of her debut album in 1969....
Anyways, mostly what I see at the nursing home is aging lonely people with no one visiting them. And that is a fact, though a sad one.
Death is like a birth, in that it seems like you'd want someone to be there to witness the experience. But maybe the witnessing is happening on the other side, (as one is escorted into the new experience ones energy will take).
Paul and I saw many a talk with Buddhist monk, Thich Nhat Hahn in which he talked about death. He said the wave is afraid of not being a wave anymore, and doesn't realize that it is part of the water, a part of the whole sea..and that is us.
One of the deathbed stories that has stuck with me over the years is from a book called Paradise Outlaws: Remembering the Beats by John Tytell with photographs by Mellon.
On February 26m 1994, the day of the World Trade Center bombing, Mellon accompanied Allen Ginsberg on the D train to the Bronx Veterans Hospital to visit Carl (Solomon) on his deathbed. Carl was getting oxygen, Allen took copious notes and some photographs, and encouraged Mellon to use her camera as well. At one point he cleaned Carl's glasses with affectionate warmth.
Then, bending over him, Allen asked Carl's forgiveness for having put him in the spotlight and making him a sensational cipher for universal suffering in "Howl."
Mellon reported that Carl was calmly surrealistic in his last hours, claiming that he was still thinking about sex though he was fading.
I don't know how much time Paul has left in him or what he'll be thinking about on his way out, but he has been enjoying some little things this week: the smell of essential oils like lavender, the familiar chords and chorus' of the Beach Boy's Pet Sounds, and a few times being sat up, propped up, so he can look out the window.
He grows increasingly difficult to communicate with, he's moving further away, but these few lovely things are the last tethers to this world we have all agreed to be in together.
Cindy I love what you are saying. Warm and compassionate.ReplyDelete
I think that no matter how many people are there with you, dying is something that you do alone. But if you are sitting with the dying, then it helps to have people with you, even if they are far away.ReplyDelete
We're with you, Cindy, even if we are far away....
Thank you. And I can feel you, and the other friends, out there Eileen. I really can...That's why I writeReplyDelete
Very gutsy writing on your part. You are facing death square on. I've been through the hospice experience with three relatives and, while it tore me to shreds, it educated me about how we do and don't deal with death in America. I'd say I wish you strength, but you are "plenty strong", as you must realize yourself. I think those of us who show up and are with our loved ones as they go through this perfectly natural process, glean more from it than those that hide, quaking, at home. You can't phone it in.ReplyDelete
I recall reading once about a people in Africa. When a woman was about to give birth, she went to the leader of the group and they composed a song. It was the baby's song, and it would be sung as it was born. It was their song throughout their life, and their family would sing it as they as they slipped away at the end of their life, so it was both the first and last thing they would hear on earth.ReplyDelete
Thinking of you and Paul as he makes his way.
Much love to you, Cindy, and to Paul and Alex. Thanks for sharing your observations and thoughts and bringing us into the journey. Love you bunches, pattiReplyDelete
This is a fine and moving meditation on important things. It is my sincere hope that Paul lasts until I can afford to visit in May, but I am with you in spirit when you are there, and when you are not.ReplyDelete
Broken link to donation page -- somebody just needs to add a colon after httpReplyDelete
so it reads http://www.paulwilliams.com
Have Paul's sons come to visit? I recall Paul and his boys visiting my house, and his boys had great fun gently bouncing my cat up and down on my waterbed by pushing up and down on the mattress a foot away from the cat. Amazingly, the cat stayed put for a long time!ReplyDelete
Rachel, Yes his sons have both come to visit. It's always a pleasure seeing them, even under these circumstances...ReplyDelete
The link on the top of the page works, I'll have a look at the link on the bottom. Thanks for heads up...
Thank you Cindy for sharing so much with those who have known and admired and loved Paul in this life. And especially for those of us who have been there during a loved one's exit. All I can say from experience is that at the very end it seems those I've known have chosen whether they wanted to be alone or with someone else in the room.ReplyDelete
I don't have nearly half the heart or wisdom that you clearly do, Cindy, so I really wouldn't even attempt to tell you what the "right" thing(s) to do would be. So...I'll just promise to keep Paul, you and Alexander in my prayers. God will make certain whatever happens is just right. You were spot on from the beginning - "God Only Knows". Trust... <3ReplyDelete
Sending love and prayers, as always, Cindy Lee. Let me know if you need anything locally.ReplyDelete
There are not many people who have had a greater effect on my and Teresa's lives than Paul Williams. It's entirely possible that without him, we would not have been science fiction editors for the last 25 years. He was a great friend and advisor to us both. We love him, we miss him, and we wish him Godspeed on his journey.ReplyDelete
Dear Patrick, and Teresa,Delete
Yesterday I read your blog-comment to Paul before lunch. He got a huge smile on his face, said "wow" and shook his head in disbelief. He really enjoyed hearing from you. He still remembers most everyone from his way-back past. And he really was touched hearing the message from you.
I remember the Doonesbury strip. You are doing what you can, Cindy!ReplyDelete
We're all with you Cindy (and Alex). Please give Paul a big hug for us all and please take solace from your friends at this difficult time.ReplyDelete
I am deeply touched by all the comments left here for Paul and our family. You all, readers and commenters alike,ReplyDelete
have made this long difficult passage bearable.
I thank you from the heart,
Dear Cindy Lee: I sorrow to learn that I will probably never achieve my longtime goal of meeting Paul, and thanking him for what he did for both Phil Dick and sainted Theodore Sturgeon. I am very glad you are there for him. I lost my own wife of 35 years (a Zen priest) to cancer 3 years ago, and I empathize sharply with what you are going through. Paul is lucky to have you, and so are we all. I'll be looking for your music.ReplyDelete
While my Jeanne was dying, people would often remind me to be sure to take care of MYSELF. Sadly, they never had any suggestions how I might DO that. I recommend indulging yourself on silly little creature comforts: for the next little while, pay the extra for the Haagen-Daaz, go for the CD instead of the mp3 download, and buy the book when it comes out in hardcover instead of waiting for the paperback. That was some small sllly comfort to me.
For what it's worth, I recommend to you my daughter Terri's remarkable blog about her battle with Stage 4 breast cancer, at www.gracefulwomanwarrior.com . Terri has taught me a lot about courage, and acceptance, and strength. Good luck to you.
Thank you for writing, and yes, just as you said, I have had friends advising that I take good care of myself. (In fact, I had the pleasure of Patti Smith telling me that just last weekend. From her it sounded so specific and masterful). Alas, I've asked myself the same question: What is it to 'take care of myself'. So far it is: making sure I go for a run most every day, don't stifle a good cry when it commences, figure out a way to have a laugh now and then, go hang out w other musicians, and yeah, buy a few creature comforts here and there...
I'm sorry you weren't able to meet Paul. And he would so appreciate your thanking him for his Philip K Dick and Theodore Sturgeon work. He was very passionate about their work. And when first we dated he said, "Phil is smiling down at us right now".
It must be so hard to go through the kind of loss you did. With Paul, in some ways, because of the dementia, he has been gone a very long time, since about 2005. Now I'm preparing for the finality of it. Everytime I think I've reached a plateau of resolution and said my goodbyes, a new feeling pops up. For now, I'm content in handling it a day at a time.....
I will have a look at Terri's blogsite...
Thank you again Spider, for your kind and compassionate note,
I have no medical training, but I pass on the advice a palliative care nurse gave us: if Paul is ever given a choice of treatment options, and one carries risk of kidney failure...go for that one. This nurse had helped hundreds of people check out, from every possible cause, and she said there is no more gentle, merciful death than kidney failure. It happened to be what finally got Jeanne, and she just went out like a candle, without pain or distress.Delete
Wow. That is a very good piece of information to know (ie kidney failure). Paul so far has not had any pain. Mostly what he has is lack of appetite and with that comes very very little eating. He's not on any medication, aside from a little bit of anti-anxiety meds to help with the agitation that comes with deepening dementia.Delete
The hospice nurse thinks that either his systems will begin to fail at some point, or pneumonia due to aspirating food is most likely. It's scary being in this time of: holding pattern, waiting, but it's comforting to know that he is not in any pain and, aside from when he is taken to the shower, not in any distress.
I hope his passing, is as gentle as your Jeanne's...
Having someone to talk to about the passing of a partner is unique and I appreciate very much your sharing your story and your insights
Oh my girl, you are in my heart. Been through this most recently and yes, give yourself the gift of knowing that you have given Paul so much love from your soul and you have fought a long fight with guts, courage, hope and beauty..ReplyDelete
Listen to the hospice nurse. They KNOW. I drove myself crazy trying to run to the hospice at lunch, after work until 3 a.m., etc. FINALLY one nurse told me it was okay to take a little break and that often, patients wait for everyone to go home and that's when they make their journey home. She said it was very common and that she didn't want us to feel bad if we were not there at the moment.
Above all, know that Paul has had the BEST advocate in the world in you. You, my dear are one HELL of a woman. Love and light to you, Paul and Alexander.
Dear Cindy Lee:ReplyDelete
We don't know each other. Your blog was shared with me by a friend who is moved by your experience.
This is what I'd like to share with you: My father entered hospice on Feb 4th after the hospital to which he'd been admitted days earlier had determined his kidney's were shutting down and he was, in effect, in multisystem failure. We had to make a decision and we chose hospice although we hadn't had time to get used to the idea that we were really about to lose him.
As you have learned, the hospice caregivers are very special people and they also suggested to me that I didn't need to stay with Dad 24-7, although I had traveled cross country to be there for him - in any event. I considered the suggestion that some patients wait for their loved-ones to leave so they can make their final passage alone, and I made a couple of conscious decisions to leave the room, though not the facility, for short periods of time. In my heart and knowing my father, I felt he wouldn't want to be alone and in the end, he was not.
My mother (his wife of nearly 64 years) and I were hunkering down during the blizzard of Feb 8th, and there was a ban on driving, so mom and I both spent the night with dad. The next day around 2:00 pm, I went outside to dig out the car which had been buried under a couple of feet of snow. I returned to Dad's room and about 3 pm, he passed away. Even in death, so considerate: the storm had ended, the driving ban was lifted at 4 PM and we were able to leave and go home after the funeral home came and took him away.
Did he know when we were there and when we were gone? Did he make the choice of dying at the time he did? It feels that way, but who really knows....as others have said, there is no right or wrong choice - things seem to happen as they should.
I do agree that the "taking care of yourself" advice is a bit nebulous, but whatever that means for you -running, music, laughing, crying - you should continue to make time in your life for all of it. Your journey has already been a long one, but the final days will possibly feel like they are taking place in slow-motion. Stay strong, stay loving, stay kind to yourself as well as to others. Wishing all of you a peaceful passage....
mar 14th 2013, solidaridad, qu. roo, mexicoReplyDelete
I found this site on the bob dylan newspage - www.expectingrain.com - 2 days ago,
I'm so glad I did.
I knew that your husband had the accident years ago, but hadn't heard much else
over the years.
thank you for givin' the webworld some inside & updates about paul's health.
by what I've been readin' in your last couple of updates, you seem to have found a
balance of makin' sure, that you don't drain yourself & bein' there for him.
don't ever feel guilty for takin' some time to reload your energy & strength.
one can only stay strong by allowin' oneself to rest in times of weakness & despair.
thank you Bruce,Delete
I asked Paul today if he remembered the expectingrain.com site and he nodded yes, that he did.
Yeah, I'm pacing myself now, taking the level down a hitch, and letting Paul and his God call the shots...
all the very best to you...
my deepest condolences.
sendin' you positive energy, be strong.
from my fbook page:ReplyDelete
'this morning I learned that paul williams,the best music critic I ever came across, died. it took a few hours for my memory to come back to what follows:
paul had started writing the 4th volume of his series of books entitled: ‘ bob dylan – performing artist’ at some point in the late 90’s, ( if my memory serves me right) & in july 2006 I got my hands on the first 55 pages of the then & still unfinished book. I decided to not read it back then, but wait for the release, hoping it to be in the near future.
a few minutes ago, I went through my harddrive & found these 55 pages. so today as paul has left, I’ll start to read his last work, expecting it to be as much of a masterpiece in observing the performer, the art & all that plays into the performance, in the most unique way anybody ever put this mysterious & in it’s best moments miraculous glimpse of oneness with the universe on paper.
sad to know that paul wasn’t given the time to finish this last chapter, but glad to have these pages that will now move me even more.
thank you, paul, for understanding the art of performing & taking the endless hours to put this understanding into writing.
Could you email me at email@example.com
Or write me on Facebook..id like to talk to you about those
last Bob Dylan writings of Pauls.
And thank you for your well wishes, everyone has been leaving such kind regrds for Paul and the family it really has carried me the past few days
hi cindy lee,ReplyDelete
I sent you a message on fbook.
it should go to you 'others' folder.
befriend me on fb.