Update: Tuesday Nov. 19

The hospital bed arrived around 9 p.m. last night, just after I got back from a lovely meal with David’s and my longtime friend Jeanne. Nothing like a perfectly cooked hamburger with no bun but truffle fries and a glass of white wine to keep my mood up!  It took about 30 minutes for my team of strong, burly men – next door neighbor Jeff,  neighbor and nightime caregiver Lloyd, and David’s late wife’s brother Keith, to help David negotiate our flight of stairs. From where I stood in the kitchen I could hear the laughter as all four made their way down, David shuffling inch by deliberate inch.   David sat down on the hospital bed, put his elbows out, one hand on each side of his chest, flapped his arms like the tough old bird he is and announced in a loud, clear voice, “The eagle has landed. ”

I, personally felt a huge surge of relief about this move. David is safe, comfortable and well cared for so I don’t have to worry during the night.  It’s also, of course, hugely sad. Plus -things do appear to be changing rapidly. At least as I observe it, David has reached the end of this plateau. He can no longer get out of bed. And appears to be on his way very quickly toward whatever will come next. David sleeps most of the time. When he is awake he seems able to focus his eyes and thoughts for briefer and briefer periods.  With longer and longer pauses in between.   But on those rare occasions when David is awake he still retains his sense of humor, delights in making jokes and sings snatches of the silly songs that he makes up.

How am I doing? everyone asks. I find myself comparing what I’m going through now to it was like to go through Stew’s death eight years ago.  I am older, I’ve  been through this; I know more what to expect; familiarity helps. A while back, although that time has now passed, friends who visited David really came seeking his sage advice about issues in their own lives. Same thing with Stew. The community I had in Portland is similar to Berkeley cohousing; except here everyone lives right next door. I can knock on someone’s door at any time, day or night – and they respond or come knocking on my door to volunteer.  A member of the Big Burly Cohouser Women’s and Men’s Brigade will arrive in an instant to assist.  For myself,  I’ve dripped morphine out of a syringe into to the space between two husbands’ teeth and cheeks to counteract pain. I remember feeling that same almost physical relief when the hospital bed arrived for David that I felt for Stew. In Stew’s case, the bed arrived on a Friday; Stew was gone by early Monday. I can only hope my sweet, wonderful husband and lover David can hang on longer than Stew did. I’m just not ready to be a grieving widow yet, for the second time around.

 

 

The hospital bed is coming

And this evening, Tuesday November 18, 2104, David will be helped downstairs for the last time and go into a hospital bed.  He asked that the bed look east. From now on Lloyd, a caregiver who lives in our community will spend nights with him.   David’s body is weak, his short term memory problematic but as far as I can tell his long term memory remains strong.  David’s decline over the last 24 hours has been dramatic. He’s sleeping a lot. Donna’s brother Keith has been a wonderful support today, as was Pat.   It’s very sad and all so bittersweet.

Our mood is upbeat but..

The little losses are revealing.  He chews more slowly when he eats. I had to move our rug from Oaxada with its geometric purple patterns out of the bathroom so David won’t slip.  I drew a line on David’s walker to measure  the height of the bathtub to make sure David can step up high enough to get in & out safely. If not, we’ve both agreed he’ll try to give himself a sponge bath sitting down, if he can’t, I will. (David is a good example of how the Dobkins are an independent & determined people who insist on having their say in everything that affects their lives.)  Still, David said this morning that his brain is slowing down.  I’d noticed that as well; the pauses between his words as he speaks take longer. Initially, I blamed it on the Mango Cannabis Quencher I bought at Berkeley Patient’s Group for $12 where, dammit, I forgot to ask for my 10% senior discount. So this morning I tried an experiment. I  didn’t add any to his juice. And that’s exactly when David noticed his slower brain.

I don’t plan on documenting every little loss, but I wanted you to know this is where we’re at   Some people call this a journey; a better descriptor for me is a forced march,  one that neither David or I chose. But in the meantime we both are doing well. We have  tender moments  and a lot of fun – especially when eating lox & cream cheese on a piece of bagel which at the moment is David’s favorite breakfast.

PS: From late afternoon to evening please e-mail rather than call. Especially if he’s had visitors, David takes a lot of cat naps & the ringing of both cell & land lines wake him up.  I will get back to  you as I can. Thanks!

From David: Equanimity

(with a little help from Judy)
I ask myself: How come I am taking this so calmly? When I was 28, I contracted bacterial spinal meningitis. I was in a coma for 11 days. I should have died. Since then, I look on every subsequent death-defying event in my life as counting off one more of my 9 lives. I’ve lost track of how many events there were. Now I’m 75 –  I’ve had 47 bonus years.  I’ve had two fantastic wives, and in between I met a woman who helped me transtion out of mourning for Donna to love for Judy.  I am proud to have helped create this  community where I live. I think I’ve been reasonably effective as a teacher in the field of audio for cinema and as a guide to my clients in the field of financial planning.  I have  been surprised since my illness went public –  “Breaking News: Dobkin Dying of Cancer” – at the quality and quantity of people’s concern & offers of assistance.  I don’t think of myself as anyone special. I do have a relative degree of equanimity. I could have  concocted this story out of whole cloth but it’s the story I tell myself.

 

Incremental changes?

At least that’s what I observe. Its like in any one day you don’t notice how much a child has grown until you don’t see him for a while. David is napping more but he still gets up and walks around the house, altho not too much downstairs. His energy is best in the morning & goes up & down during any one day. His weight is on a flat streak – no gain, no loss. He says he’s never hungry but then eats his usual smallish quantities & enjoys his food (especially the Junior’s cheesecake Justin sent us from New York). David talks with animation with those who visit but for a briefer time; his voice is hoarser & a little weaker.  He’s less interested in TV and more in reading & doing crossword puzzles; he’s increased his pain meds but not by a lot. A friend told me that nurses & docs, who refuse to predict longevity, do use amount of activity & engagement in the world as predictors; if so David appears to be doing well at the moment.

Not much change and a shopping trip

Today David’s voice is at about the same level of weakness it was yesterday,  he’s in a bit more pain & as instructed has increased his meds accordingly. He’s also rubbing marijuana salve on his belly. We have two jars; one homemade by friends; the other I bought for $27 at our neighborhood Berkeley Patient’s Group.  David says the salves help.

Going to Berkeley Patient’s Group was, as they say, a trip.  Located on the west of busy San Pablo, but a fifteen minute walk from our house, the clinic is surrounded by tall black metal fencing and patrolled by  guards.  I first arrived late this past Friday afternoon . The parking lot was jammed. As I approach the front door with both David’s & my  ID’s plus a letter from David’s physician authorizing David’s use of medical marijuana, I can smell the pot.  A guard takes my documentation but will not let me in. Ten minutes later the clinic manager comes outside. He has more forms both David & I need to fill out.  “No worries when you do come back,” the manager says.

“It’s healthcare,” I reply.  “Bureaucracy is everywhere.”

I had decided before I left home for my second visit to Berkeley Patient’s Group that I  hadn’t dressed appropriately for my first time out. I’d worn David’s black felt Pendelton fedora which I like because it makes me look macho but some might say makes me look like a drug dealer.  This time I put on  my black sailor’s cap that’s covered with sparkling silver sequins. I draped around my neck a striped multi-colored scarf I’d bought for peanuts at a Babette designer sale. Who says clothes don’t project an image?  I’m a admitted on the spot; whether it was the forms or my hat and scarf I’ll never know.  One of two clinic receptionists (both young, both women, one African-American, one white) took my forms & ID, pointed me toward a small waiting area filled primarily with hulking 30 something, white guys with tatoos that slither their way up and down their arms.   “C’mon guys, David’s really sick and all you want to do is get stoned.”  I say to myself, then chide myself for being uncharitable.

Ten minutes later, new & filled out papers in hand, I choose the Full Service not the Express line, I stand in front of a clean glass display case filled jars of pot and edibles, arranged in those careful focussed rows you can achieve when you’re high. My young buzzista is patient with my numerous questions about strength & side effects. After I point to my hearing aids to get him to speak louder and more slowly, we joke about getting older. “You’re still cool,”  he tells me and I feel flattered. After all, I must be old enough to be his grandmother. And he must be at least 20 years older than Simon.

My purchases come with a 10% senior discount and a rewards card.  David & I especially recommend the Cannabis Quencher Strawberry Lemonade, diluted by 4 times the amount of water.

 

 

 

Written at 2 a.m. & 9:30 a.m.

@ 2: a.m.  I had read Barbara’s report on the FAFN conference (see previous post) out loud to David earlier this evening.   He was both delighted & moved. But what keeps me up tonight is worry that David appears to be getting weaker. He tires easily and takes more frequent naps than even a day or two ago.  His skin is yellow from jaundice; he’s lost enough  weight that I’ve started to call him my “thin-wristed yellow man. “Up to today, I felt David had reached a plateau; now I’m afraid he’s on a gentle, downward slope toward whatever his next plateau will be.   I am sad.

@ 9:30  a.m. David wakes up pretty much himself; he moves slowly but still without a cane; he reads  his iPhone  & the New York Times and seems settled & present in the world.  He claims there’s no real change in him except for more fatigue.  He also says he has accepted what’s to come. I think it’s true, given how calm he is. Now that it’s daylight, I feel like I have accepted all this too. With still a touch of disbelief at the rapidity of it all .

I once knew an older woman named Betty Schedeen. She lived alone in a musty Victorian farmhouse in Gresham, Oregon, close to the center of town with what I remember as a macaw, although the bird may have been a parrot. Her grown kids ran the family berry farm.  In a town of rural conservatives,  Betty had been the main organizer for JFK’s presidential campaign. She was the first person to  alert me to the phenomenon of night fears when she’d tell me about waking up at night.  “Oh well, ” she’d say, “those are just old lady fears. I won’t pay attention.” David has an indominable will to live. I too need  to label my 2: a.m. fears as “old lady fears” and dismiss them by not keeping them to myself.

From the FAFN Conference

by Barbara Simonetti

George Gay is the CEO of First Affirmative Financial Network, a socially responsible investment firm with whom David was affiliated. David attended 23 of 25 FAFN conferences.

During cocktails, we sat outside by the fire pits at Cheyenne Lodge in Colorado Springs, and looked over the valley as an enormous yellow moon rose. In honor of our 25th anniversary, George asked people  to stand;  first those who had been to 15 conferences, then 16, all the way up to 25. After that came the traditional calling up of top performers with awards given to new reps who have made good progress. Kathy Sutherland and Justin Martello did  their “why we do what we do” speeches.  Justin mentioned David fondly as a mentor and friend.  It was a typical warm, wonderful FAFN family dinner.

Then George invited Laurie McClain up to the microphone. She came  dragging her supply of oxygen on wheels behind her. We could hear the puffing sound as she said her oh so loving goodbyes and thank yous. The waiters brought us all champagne as George took the podium again.  When he told us all David’s sad news, many in the room gasped. As he read David’s letter,George fought and lost to tears. We all raised our glasses in a toast to you both. More people came up to the podium to talk to you via the camera. Many more wanted to but could not control their tears. I was sitting close to Georgette and Linda Jacobs both of whom wept openly as did we all. There was so much love for you both in that room. You must have felt it all the way in Berkeley.
Judy, Charles and I missed having dinner and a bottle of good wine with you and David this year. I am so glad we had our visit in Brookline this past Spring. Last night, as I looked around that room, I thought how extraordinarily lucky both FAFN and our husbands were to have found each other. I do not know of any other business organization, never mind a financial one, that could so thoroughly embrace everything it means to be fully human. It is an extraordinary community and it clearly holds you both very close to it’s heart.

Not that much to report, plus visiting

Hi all: David is at what they call a plateau, for which I’m very grateful. He spends most of the day resting in bed but is steady & energetic enough to walk around the house, read magazines & newspapers in hard copy & on his iPhone, answer a few e-mails, watches a  little TV, enjoy visits from friends & even work  with me to finalize our financial plans. His mood is good,  he’s his usual stoic self, he jokes and will occasionally sing a few of those songs with nonsense words that he makes up, but in a voice that is weaker & hoarser than in the past. He does look gaunt, his skin is clearly yellow  (I call him  Yellow Bear) but his pain meds are working well enough.  He impresses the nurses by logging  everything: daily weight, time & amount of meds, every sigle bite of food he eats.  (Free app: My Fitness Pal).

David’s nephew Rio & his friend Mehta are coming today; tomorrow they, Jessica, Dan & Simon will all have lunch together here.  If you want to visit, I keep our front door open but it’s best to e-mail both David & me first & tell us when.  At this point David can tolderate just two visits of 2 hours each a day. We do keep a schedule  so please don’t take it personally if we have to turn you down.

Thanks to everyone for reading this blog & for your comments, e-mails, cards, gifts, notes & especially for your help with daily tasks. You brighten the days David & I have learned to take one at a time.

Much love, Judy