God Only Knows

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....

http://www.youtube.com/watch?v=nQILMW870-w

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.

More Shots From Dennis Andersen

BINGO

Paul gets a new chair, a special recliner brought in by hospice. I wheel him out to the day-room where there are windows and some outdoors to look at. He seemed happy. Then he tried to get out of the chair and I had to holler for help. It all worked out in the end with Paul a little more lively than he's been. 

The photo of the ocean was taken from atop the bluffs earlier today when Alexander and I went 

for a run.

Listening to Ray Charles

The Rhino boxset: Genius & Soul. So much feeling in that voice it brings up strong sensations: memories of childhood and one of the songs I liked on my dads favorite radio station was Ramblin Rose. Driving down the Grapevine on Highway 99 and that voice cracklin over the Bakersfield radio station.

Paul sleeps a lot now. He has the rare "lucid" moments where both his eyes are open and you feel him listening and then sometimes he will smile. Now he mostly wants to be left alone: no shower no shave no washing the face and rarely eating. He is down to 111 pounds. That pretty much says it all.

Yesterday the hospice nurse said to me  "He doesnt want to be here anymore." It is his choice now, to be here or to go.

And the cd plays on, with Ray wailin out of the plastic speaker.."I dont need no doctor! All I need.. baby c'mon home"

Sent from my iPhone

Two Shows: Photos

Dennis Andersen took these photos of our show 

at Lestat's in San Diego.

Paula Luber, Buddy Zapata, clb, Alexander, and Henri (Buddy's son)

Alexander, beautiful boy

Singing Peter Case's "Two Angel's"

I loved seeing all my girlfriendies out there in the crowd

This month wore me out. I loved playin' these shows but with the situation with Paul going on hospice I was tired all the time. By the time I was near the end of a set I thought 

I was gonna keel over. 

Paula Luber and clb backstage: figgerin out the setlist

Me and Kim Fox at Cinema Bar in LA on Valentine's Day. Wish I had pictures from this night with my totally amazing band, which included Renata Bratt on cello, David Schwartz on upright bass, Nelson Bragg on drums and Paula Luber on vibes. You guys were a blast to hang out with and play music with...

(this photo by D.A. Nishimura's phone)

Nothing Gladdens the Heart Like Music

Thurs. Feb 14th Valentine's Day
Cinema Bar
9pm, free
w/Buddy Zapata and Junkshop Republic
3967 Sepulveda Blvd
Culver City/LA, CA

This night will feature a Soiree of cool musical guests:
Long time friend and Garage Orchestra cohort Renata Bratt on cello. 
Composer of cool TV theme songs; Deadwood, Arrested Developement, Northern Exposure and playing bass w me here David Schwartz. 
Dr. Paula Luber moonlighting from her private practice so she can try out her new vibraphone. 
And jumping in with us, with no prior rehearsal, is Brian Wilson's percussionist Nelson Bragg


Sat. Feb 16th
Lestat's 
8pm
w Buddy Zapata
3343 Adams Ave.
Normal Heights/San Diego, CA
http://www.lestats.com/main.htm

Mostly solo for both Buddy and me but I'm gonna talk Paula Luber into bringing up the new vibraphone

******************************

I asked Paul last night how he felt, (he doesn't speak much, but he will answer questions "yes" or "no",  if you ask). It looked like one eye was a bit watery, so I asked "are you sad?", he nodded "yes". I asked if there were any family members he'd like to see and again he nodded "yes". 

I went down the list and got a big nod when I said  the names of his first two wives and so one of them, his second, Donna Grace will be coming in tomorrow, we will meet and pass the baton of Paul-caring (soon too his first wife Sachiko will visit). It is so fortunate this timing. Now I can drive up to the LA show with gladness in my heart and a song of love to share.  

I hope you will join us for one of our shows. Nothing gladdens the heart like music. A communal experience among friends and artistic sojourners. And I could use a little of that...

Good Music Goes Up

Is there anything u want?
Paul: go up in the sky
What do u mean?
Paul: (pointing upward) Good music goes up

A relative asked Paul this in early January , and now it seems so very poignant as he weakens, loses interest in food, and draws into that perpetual ball-shaped position .

************

Brian Wilson and Van Dyke Parks, and the Beach Boys, won their first ever Grammy today for best Historic Album.

Paul loved, loved (!) Brian's music. He wrote about Smile in 1993, for the restart of Crawdaddy Magazine, (some of Smile was included in the newly released Good Vibrations boxset):

"Putting aside the myth (which David Anderle and I certainly helped create, in our published conversation way back a long time ago) of the genius artist frustrated on the brink of his greatest masterwork, these tracks are clearly the work of someone very stoned, a powerful creative artist very much under the influence of marijuana and amphetamines. He was also stoned on power, the power of having the money and the reputation, the intelligence and the talent and the fear/respect of the people around you, that allows you to do whatever you feel like, whatever you think of. And of course the people around him, the witnesses to his "genius", David Anderle, Van Dyke Parks, Derek Taylor, the journalists like myself, were also very stoned.

There are moments of great sensitivity and deep feeling on the Smile tracks (notably Brian's vocal performances on "Wonderful" and "Surf's Up"), but in it's overall character it is not at all a heart album ( as Pet Sounds certainly is); rather it is, and was clearly meant to be, a sort of three-ring circus of flashy musical ideas and avant-garde entertainment. Many of the tracks contain brief segments of truly extraordinary beauty and musical originality (it was hearing some of these tracks as acetates, that got me and other visitors so excited)."

And from pg 149 of How Deep Is The Ocean: Brian Wilson and the Beach Boys, Paul writes about the magnificent Surf's Up the penultimate song on Smile:

"....Am I babbling? This song does that to me, reduces me to pure feelings with millions of specific images loosely attached, floating by, all contradictory and all true at the moment that I see and feel them."

*************

Today when I told Paul that Brian had won his first Grammy, and for Smile, he opened his eyes for a second,  looked up at me and said "good."

Hospice

Today we started Paul on hospice.

(who is Paul Williams...? 
http://www.paulwilliams.com/  ) 

After many days of consulting with a dear friend of Paul's who works in the hospice industry and has seen Paul through his various stages of life (they once were girlfriend and boyfriend when they were teens in the 1960s), and after much deliberating and  wringing of hands, it seems like the right thing to do. 

Not that we have given up entirely on Paul's possible return to strength as the extra help from the kind people of hospice will oversee his care in a way that the nursing home doesn't have staff or training for (he will continue to live at the same nursing home and maybe with a little luck a new one soon). 

It's a 50/50 thing, maybe with the extra care Paul will rally and gain some weight and return to a baseline he lived at a month or two ago (he's lost over 20 pounds in the past month). Or, maybe this will ease his way into that next passage of life.

No he is not on a morphine drip or anything like that. I know I thought that was what hospice was all about, (give them drugs and let them go out on a cloud), but this is not the case, at present with Paul, and is only advised when all else has failed. He is on an anti anxiety medication to help him with the fear and agitation he has when he is being dressed or helped. 

It's a very hard time for us his family, extended and otherwise. It was a hard decision to make, putting him on hospice. But it's equally hard to see him withering and not getting any extra help, at least hospice can help him with some comfort. And maybe with some luck, he will get stronger, and start eating and gaining weight. Right now it is all in Paul's and in Gods hands...

Paul and Alexander 2002

Crank Bed: Part 2

The crank at the foot of Paul's bed with floor mats to either side, because the bed does not have rails and he could fall out and if he did then the floor mats would ease the fall. 

WTF? It's so steam-punk....

The good news is he is getting fluids and his sodium numbers today prove that. 

Today I spoke with two nearby nursing homes, one of them is just fabulous, a place I'd wanted him to go to 4 years ago when I was hunting for a place that would take a 60 year old man. Now that Paul is MediCare/Medi-Cal it may go a little easier. 

The second place pretty much flatly said no and had a bunch of reasons for it. Sadly, most nursing homes don't want men, they prefer frail older women, and/or someone that can walk (flight or fall risk). I explained that with Paul he is no longer walking, is quite frail and nearing the end of his life. 

Geez, I hate to say that. I want to be all chipper for everyone and say that he's over this ordeal and things are getting better. The reality is that he hasn't returned to the way he was two weeks ago when I posted the pictures Alexander took of me and Paul, along with his musings about his dad. 

Paul is quite frail now, 122 pounds curled up in a perpetual fetal position, and he handles most encounters with other humans with an emphatic "No" to nearly every question. 

"Do you want some real milk-shake with ice cream" 

"No"

"Do you want to get up and go outside with me"

"No"

"Can I sit on the bed"

"Noooo"

"Can I get you dressed"

"Nooo!"

Tonight, after work/school,  we dropped in and saw Paul for a few minutes. The sweetest thing was the smile Alexander got from his dad when he came up close enough for Paul to recognize him. He is still in there, it's just that you feel like he's fallen into deeper darker waters, he's harder to reach.*

Could it be that the severe dehydration caused further brain damage? Could it be that he is ready to let go?  Could it be that in recent weeks, before the dehydration, the dementia had caused him to forget how to chew and swallow and drink? Could it be that he may ease back into his previous baseline given enough liquids and nutrients and sit in a wheelchair and interact with us in that present but wordless way that he did? Time will tell.

The good news is his numbers indicate he is hydrated. 

*brings to mind a song on an album Paul and I loved listening to, the first Negro Problem album and the song Submarine Down with it's ecstatic chorus. "Submarine dow-ouun, submarine down..." You might be going down into murky waters and the great unknown but you will be doing it with great swirling chords and a happy descending of tones. And the dark unknown is not such a scary place after all, maybe like the Great Fool, of the Waite Tarot deck,  stepping off the high cliff with a smile on the face...

Submarine Down   by The Negro Problem
http://www.youtube.com/watch?v=K1055YHAGmg

CRANK BED

"....and this is supposed to be one of the best nursing homes in the country? Five stars and everything. And this old bed is what they do?" the doctor said rather aghast, as he looked at the old fashioned hospital bed with the crank on it. A crank nearly underneath the bed, you wind around so to lift up the head and shoulders of the patient, so he can eat and drink. 

"I had to really work them yesterday to get him into this one" I told him, "the one he had before was broken and it wouldn't go up or down at all, this apparently was the best they could come up with."

At another nearby nursing home I interviewed this morning with the idea of moving Paul, and in response to my telling them about Paul's bed they said "Wow, they don't even have a modern hospital bed to put him in?"

It was a tough weekend waiting for a work day so I could talk to Paul's regular Kaiser doctor and looking into a new nursing home and calling the Ombudsman (state advocate for nursing home issues). 

Lucky me that the Kaiser doctor came into the nursing home today. They aren't in there all that often. So I pounced on him and had him look at the chart from the hospital, where the doctor had promised me he'd make special requests for measuring the liquid in and out, and rehabilitation. But apparently no where on there was a request to be sure to get Paul a bed so he can sit up and eat and drink. Right now he is too weak, due to a week in bed at a hospital, to sit himself up. 

I think it's time to move him. I've had it with the home not brushing and caring for Paul's teeth and so he lost all the front ones, and then letting him become lethally dehydrated and now not measuring his fluids or getting him a proper bed. It's time to go somewhere else me thinks. 

I'm taking everything about 10 minutes at a time right now, so we'll see how it all comes out in the wash. I feel like a right ol' crank myself.

Leaving the Room With A View

Paul and his room with a view at nightfall

The hospital lobby at night

Alexander visits his dad's room

Today Paul will be leaving the luxurious hospital/hotel room he's been in for the past 3 days. This place looks like a f'n Hilton. Check out that lobby up there, and a splendid view of the surrounding mountains (and local industrial park). 

Today Paul's sodium levels are nearly normal, 147 (normal range is 135-145) so he will be shipped back to the nursing home from which he came. I'm working on the hospital doctor and staff to make he sure he gets sent to the rehabilitation side of the nursing home (Aviara Health Care) and not the side he normally lives on (Long term chronic care-everyone is Medi-Cal).

 Since Paul was in the hospital for more than 3 days his Medicare Insurance allows him time in a rehabilitation center. I think he needs the time to get his physical strength back and also, the nursing home can get used to the idea of overseeing his fluids. The staff on the rehab side is consistently good, with more nurses on staff and CNA's (certified nurses assistants) that seem to stick around for awhile and get to know the patients names.

The latest word from the hospital doc about the possibility of an underlying condition,  Diabetes Insipidus http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001415/ ...is that Paul's urine output in the past 15 hours has been in the normal range, so it doesn't look like that was the cause. We'll know for sure after he consults with the specialist today. 

So that brings it down to this: the nursing home was not overseeing his care properly, was not monitoring what he was drinking, and they let him drift into a life threatening, critical dehydration.   

Now, what to do....