Memorial service for Patricia Adair, July 11 @ 11 a.m., Concord, California

Hello everyone. July 3rd is the one-year anniversary of our mother's death, and we're (finally) having a memorial service in her honor. You're all invited, but no one should feel obligated to come. It's short notice and at the height of summer vacation season. I hope you're able to come if you want to. The details are below:

July 11, 2009, 11 a.m.

The Church of Jesus Christ of Latter-Day Saints

1590 Denkinger Rd
Concord, CA 94521

Here it is in Google maps.

A light lunch will be served after a short service. We'll see some of you there!

Love,
Dave (and Mike)

A story about Dad

I apologize for not writing for so long. For all I know some of you appreciate the peace and quiet. It's been three months and 12 days since my Mom died, and we still haven't gotten around to setting a date for a memorial service. I don't think that was all that kind, considering the memorial's not just for us, but for all the people who loved and cared for Patio. I find myself thinking about Mom most days, and I still have the impulse to call her when something's going on that I want to share. Today I have the impulse to call Mom, but I'm almost glad that she's not here to take the call.

My brother Mike and I went to Arizona last weekend to visit our dad. Mike had seen Bud about six months ago, but I'd canceled that trip at the last minute because Mom wasn't doing well, and ended up taking her to the hospital that same weekend. So it was a year since I'd seen my Dad. He was getting some kind of dementia, likely Alzheimer's, and it was noticeably worse since I saw him last. Mike and I spent two exhausting days trying to get his bills and finances in order, but we still had time for some good meals and we enjoyed the time together. The best part of the trip, no doubt, was a drive into a nature reserve around dusk, where we meandered on unpaved roads and managed to not get lost. Bud was in great spirits on that drive, and loved being out in nature - especially when viewed out of the window of a pickup truck.

We were frustrated that Bud refused any kind of help from anyone but us, even though he so clearly needed it. The night before we left he agreed to let our cousin Julie help with his bills and medications, and we thought we'd turned a corner. Today, though, Julie called to say that Dad wasn't answering his phone or his door, and his truck was parked in the garage - so he didn't seem to be gone anywhere. Fearing the worst and hoping it was just an overactive imagination, Julie and her husband Rocky went over to the house, found an open window, and climbed in to find Dad passed away in his bed, apparently from natural causes.

Our Dad was a cantankerous old coot. But he was also one of the smartest people I know, and could be downright charming when he wanted to be. And Mike and I never questioned whether he had our best interest at heart. I remember when Dad and I were tuning up a car when I was in high school, when you had to hold the timing light near the spinning fan belt. He said, "Let me do that. It'd be better for me to lose a finger than for you." I wished he'd been able to enjoy himself more than he did, but part of his "charm" was that he lived by his own rules, and he wasn't all that interested in what anyone else thought about it. Just three weeks ago he came to a red light. After the cars had gone and no one else was coming, he slowly drove on his way, through the red light, until a policeman pulled him over and gave him a ticket. We can't blame that one on Alzheimer's, because he'd been doing that for many years. He'd plug in an electric skillet and place it in the freezer to speed up the defrosting, and he'd stick a hot dog in one side of the toaster and bread in the other - before they sold them that way. When our dog Tigre got old, he took him out into the foothills of Mt. Diablo and shot him in the head. And he LOVED that dog. He was his own man, for sure.

I always figured it would be relatively easy when Dad died. But since Mom died, I just recently realized that I'm not ready for my Dad to be gone, too. Not yet. But I didn't get a vote, apparently, and it happened as it did. This too isn't just about me. Bud made it crystal clear that he wouldn't ever live in a retirement home, and hated the thought of being incapacitated, as he would have been with his disease. So he went out on his own terms, and I hope he's in a better place.

Much love,
Dave

2007

2007

Maybe 1960-ish?

Mike and Dave's last weekend with Dad, 10/11/08

Patricia Johnson Adair, March 31, 1932 - July 3, 2008

Our dear mother Patio passed away this evening, at 11:48 p.m. on Thursday, July 3. After lots of interaction these last eight days in hospice, she started to withdraw yesterday, but she did manage a clear smile for her granddaughter Courtney just hours before she died. Her breath became more and more shallow, until Mike and I could barely tell if she was breathing. We could see the pulse in her neck, and then that, too, faded and stopped. It made me wonder where she went. After a lifetime of identifying her as being in this body, now that the body remains but Mom is nowhere to be found, it just makes me wonder.

I have so many powerful "Mom" memories, of course, but one that always stuck with me goes back to when I was 13. I was sure that I was a young man, by that point, having stepped out from under Mom's wing, and I was going to face the world like a man should - resolute and strong. I was swimming at our neighbor's pool, and when I went down the slide I tried to grab my friend underneath the slide, which drove my head hard into the bottom of the pool. (Yes, that does explain a lot, thanks for noticing.) I stumbled out of the pool and mom was there, with a towel, clutching me to her breast. I was mortified and astounded by how unbelievably comforting that was. The warmth of that embrace washed over me, and for the young stud that I aspired to be (and never achieved) it revealed a powerful truth: there's something special about Mom, and your relationship doesn't just change because you decide it should.

My relationship with Mom has deepened so much over these last months of caring for her, and I'm so glad that I was able to. It made it easier that she was so appreciative. My love for her grew by the day, and I didn't need to turn her into some kind of faultless saint for that to happen. (She happens to be one, but that's a coincidence!)

I'd like to ask you for a favor - write a comment at the bottom of this blog entry, if you want, about Mom. Share some stories or thoughts or just wish her well. It would mean a lot to Mike and I, but also, I think, to others who cared about her.

Mom is going to be cremated, and we'll have a memorial service, but not immediately. Keep an eye on this blog for more information. Thank you to everyone who loved our mother. We learned a lot this last week about how many people were moved by her.

Much love,
Dave (and Mike)

Defying the odds

Patio has defied the odds once again. They said Mike and I would never make it out of high school, but she proved them wrong, and a week ago today we brought her to Bruns House hospice, where she was sure to live for only a day or two - yet she breathes on. We haven't stopped guessing how long Mom will live, but we now accept what a folly it is to believe what we come up with. If we had enough time, we might even come to really surrender, and stop guessing all together. Or not.

When I travel in India, I'm frequently confronted with great poverty and suffering, often in the form of beggars. They range from the irritating nuisance to the unmitigated tragedy, with everything in between, where you're tempted, for your conscience sake, to think that they're not really as bad off as they seem (and sometimes that's true.) In my first travels there I thought had the perfect response: pretend like they're invisible. Don't acknowledge their presence, act like you can't see them, and never respond, because as soon as you say "No" they think you're negotiating. That wasn't very satisfying somehow, and I've made it a practice in recent years to not look away. I try to look them in the eye, engage them in some way, maybe only with eye contact, and then choose to give them some coins or not - usually not. It can make travel a little harder in some ways, but much richer as well. It's tempting to not want to see the suffering, to distance yourself from it, because when you see it and allow yourself to engage with it emotionally, it can be painful.

That practice seems helpful but like little league compared to this: look into your mother's eyes as she's gasping, laying on her deathbed, and appearing like she's suffering and aware of her suffering. (Is it still suffering if you're not aware of it?) She's better right this minute, so it's easier, but last night Mom was agitated and not breathing very easily, and it is so hard to see and be with. Like seeing the beggars, it's tempting to step back a bit emotionally, and not really engage. It's a challenge, but I'm making the effort to not look away.

I've heard a saying, "The thought of your mother is not your mother." I would add, "The thought of your mother dying is not the same as watching your mother dying."

Today is Wednesday, and on Monday afternoon we had more family arrive. Mom's sister Geri came with her husband-the-saint Gordon, daugher Patty, and daughter-in-law Marilyn. They drove up from the L.A. area, and with Geri in a wheelchair and in ill-health, it was a monumental effort. Also, Mom's brother Daniel drove with his wife Bonnie the 720 miles from Salt Lake City. Bonnie was just in the hospital for a week only a couple of weeks ago, so they made a huge effort as well. It was some minor miracle that Mom was still here, after what we originally expected. So we had, if I can count, 18 family members at Mom's bedside to say goodbye to her. And since they averaged about 100 times each saying "I love you," I figure Mom's heard it about 2,000 times this week! I think she's starting to really believe it. I joked about faking my own deathbed/hospice experience so I could find out how many people love me. The more I think about it the better it sounds. (Now when I AM on my deathbed, you may not come, but you won't know if it's real. Shoot, that may have backfired...)

The whole family surrounded Mom's bed and sang a church hymn that Mom likes, "How Great Thou Art," and it was very touching. I told the "crowd" that Mike and I had expected to be facing this just on our own, since it happened so suddenly, so it was such a special treat to be with so many people brimming with warmth and love for Mom.

Yesterday Geri and the gang drove back to L.A., and Dan and Bonnie drove back to Salt Lake City - less than 24 hours after arriving. It was a beautiful and selfless act for them to come. Char's large family needed to go back as well, and after an afternoon trip to North Beach in San Francisco for the day (which I went on, too!), they made the long haul back, only three days after they arrived. My arms are open wide with gratitude.

I will try to post daily to let you know how Mom is doing. Thank you all for your love and support, and I apologize to everyone whose messages I haven't replied to. We really can feel the love for our dear Mums, and she can, too. We don't have to wonder about that - she's told us.

Too much love,
Dave

p.s. As I've been writing this, Mom has been sleeping really soundly, and breathing smoothly and easily. It's such a relief.

Photos (and more are here):

Many more photos are here.

Mom is still with us

Once again, Mom is surprising everyone by not only being alive late Sunday, but being perhaps more communicative today than she's been any day since she was admitted to the hospital, a week ago today. (That was a week ago? If we weren't wearing our watches, we could barely tell what month it is.) Continuing the trend that we were sure would end days ago, Mom is getting more talkative, even as she's starting to hallucinate. She's said so many funny comments that we can't keep track of them. She looks at the ceiling periodically and focuses, and you can tell she's seeing something. Once she said, "Scoot! Scoot!" which is what she says to the cats that come in her yard. When we asked, she said, "I don't know, I think they were turtles or something." We're all on the lookout for roof turtles now. She carried on an animated one-sided conversation tonight, saying, "Oh, really!" ... long pause... "Well I had no idea."

The doctor joked about all the family we have from Utah, saying "It looks like everyone in Salt Lake City is coming to see you." Mom said, "Works for me!"

She intersperses hallucinations with confusion and clarity, and it's hard to know when she's totally clear. Maybe the most surprising thing I saw today was when her friend Charlotte was there and Mom asked if she could talk to her alone, without all the people around. I asked if she wanted us to leave, and Mom said she did. She then reached for Charlotte to pull her close and spoke just to her. I've recorded a bunch of the today's conversations, which I can only imagine we'll really appreciate having in years to come.

If you felt the earth shift off its axis for a second today, it was because Mike called our Dad to give him an update. It was a tearful call, which is shocking enough in its own right, but the stunner came when Dad said to tell Mom that he loved her. I happened to be on CNN at the time, and they were reporting a giant blizzard in Hell. It's probably a coincidence.

Hilarity aside, I see it as another gift of this process, of which there have been many. Hearts open, and people get to places they can't normally access. We dread the thought of death, and most of us refuse to think about it, or worse, unconsciously think that it won't happen to us. But we have a choice - don't wait until it's too late to contemplate the changing nature of life, including your own death. Today's a good day to begin, while you have the luxury of ability and time.

OK, I got sidetracked - back to gifts. Mom's illness took this sudden turn so quickly that we didn't think anyone in her family could make it in time to see her. We discouraged my aunt Charlene and her oldest daughter Julie from coming, and thank God they didn't listen. The next day three more of their kids drove all night from Salt Lake City, and that evening two more of their siblings flew in. So we now have 11 people in the hospice for Mom, plus other visitors dropping by. Fortunately there's room for all the love, since it doesn't take much space - but the luggage and sprawling bodies on the sofas are pushing the capacity of the house. And tomorrow - more family is coming. We hope for their sake that Mom is still here when they arrive. For Mom's sake - I'm not sure what I hope. I'm pretty sure I don't get a vote... OK, I just thought about it, and here's what I hope: I hope that everyone is happy, and peaceful, and safe, and is filled with the love of this magical experience, in whatever way that physically comes about. (That was easy - why complicate it with details?)

Lastly, I want to add that when I declared that my "suffering has ended" the other day, I was premature. Because Mom is still so with it, she can communicate when she's in pain or restless or wants to get up, and it pushes all my I-don't-want-Mom-to-suffer buttons. I mean, it REALLY pushes those buttons. Mike and I spent a long time today talking with Mom, and at one point, she said, "I feel really good." We talked about our favorite meals she used to make us growing up, and how caring she was, always worried about us. It was so far beyond anything we could have dreamed about a few days ago that we were both feeling so blessed. Towards the end, though, Mom started getting fidgety and anxious, and then complaining clearly about intense pain in her back, and I just about lost it. It's the one thing that I've always for my mother - that she be happy and not suffer. I've been so motivated by that these last six months, but that's really just been the obvious expression of a lifelong desire for her. Between the supreme exhaustion and sleep deprivation, I was totally overwhelmed and cried, but not like a baby - I cried like an adult who really loves his mother, and is starting to understand that love in a whole new way. That, too, is a gift. A huge, painful, beautiful, mysterious, love-filled gift.

More than ever, I love you Mom.

Dave

An interesting thought

I can go for weeks without having a single interesting thought. This isn't one of those weeks.

Tonight the question I'm pondering is this: Am I seeing the world more clearly now, when everything appears soaked in Love, or is that merely the filter that I happen to be perceiving things through at the moment? There's a beautiful El Salvadoran woman who works here, with a perfect round face, natural brilliant teeth that would make any orthodontist proud, and a dimpled smile that makes me melt. Mike and I chatted with her at length about her grandkids, and she glowed. And we glowed. She looks like the personification of love, and the love for her family oozes from her. (She does, after all, work in a hospice, which tells you something about her character.) My mother looks like a goddess, and I have the impulse to look deeply and at length at each of the people that I meet here. I like people a lot, but this is something else. Am I seeing a beauty that always exists within people, but don't normally see? I don't know the answer - but I like the question. And paradoxically for our Western minds, I think it's more important to ask the question than to settle on an answer. (Well, then what kind of a question is that?! Oh - that's a good question. Add that one to the list.)

We had more magical moments with Mom today, and she's been the most verbal and awake that she's been for maybe three days. For days now, every time she comes to enough to pucker up for a kiss or say a word, we think it may be the last time. We're surprised and overjoyed that it's continued. There's something about knowing that these moments are finite and can't continue for very long that makes them precious beyond words. Mom went for a long spell today where she was speaking in almost whole sentences. Not all of them made sense, but most of them did. Mike said that Mom's sort of boiled down to her essential goodness right now, and I agree. She's still worried about everyone else, and asked that we not make a big fuss over her. When my ex-mother-in-law Barbara came to visit, Mom said, "Well, don't you look nice." (I got a bonus today - Barbara agreed to drop the ex-, and just be my mother-in-law, since I never replaced her with another one. I'm happy about that!) Mom's been as gracious and accommodating on her deathbed as she was as a patient these last six months. When we ask if she's OK, she says, "Oh, yes, I'm fine." How sweet is that.

At one point she asked us to lift her arms. We said, "What should we do with them?" and she said, "Put them in the drawer of the nightstand." That was a good one.

Right now it's 2 a.m., and Mom's breathing is starting to change. She starting the pattern that was described to us, where she pauses for some seconds between breaths periodically. It can happen for as long as 45 seconds, apparently, which I think might kill me to witness. It's hard just to hear her pause for a few seconds then gasp as she catches her breath. Mike is sleeping in the recliner just next to Mom as I type this, and the two of them are doing a pretty good snoring duet.

I realized today that the "cost" of Mom's continued presence during these days is that it will be that much harder for me when she goes. In spite of how I talk about this time, nothing is fixed or static. It is an incredibly beautiful, rich and rewarding time, but if you pay attention, it's changing by the moment. Sometimes I'm very calm and non-emotional, and then something grabs me and I'm crying like a baby. One of those times today was when Mom was talking to me and Mike for some time and it hit me, again, that she's dying. I find that I can forget and remember in a flash. Ouch.

I guess I should go. We're running on fumes here, getting around three or four hours of sleep a night, and I should take this chance to sleep. But like a kid, I don't want to miss anything. And now that Mom's breathing is changing, I'm wondering what's going on.

That's a fair question: what IS going on? Not choppy breath vs. slow breath - but life - it's beginning and it's end. Why is this all so profoundly moving? Now that's a question worth pondering.

Love,
Dave

‘Learn how to die, and you learn how to live.’

This post is from Brooke, Mike and Mary's 15 year-old daugher. She's been with Mom for most of the last two days. (She's on the left in the photo.)

---------------

Brooke: While my father and my sister were out getting us food since all we’ve really eaten today is bits and pieces and scraps of food, and my uncle was taking his first shower in days, I utilized the scarce alone time I did have with my grandmother. Right as I walked in the room I saw her big blue eyes, and the doctor told me how well she did with being bathed and I walked over to her and she scanned me up and down with those gorgeous shining eyes of her. She gave me the biggest smile I think she physically could. I told her how beautiful she looked, and how amazing she was. I told her how she’s my biggest hero and how she taught me how to really live. I literally poured myself out, every little thing that popped into my head was vocalized. I then told her that I knew she loved to read so I grabbed a Tuesday With Morrie copy, which belongs to the Bruns House and read her some excerpts that I had dog-eared because they reminded me so much of Grandma, who she is, and the situation at hand. I told her I knew how she was an avid reader and would appreciate what I was about to read to her. She looked at me and gave me a look only she could give, reassuring me I was very right about that, and I felt my heart leap at how clearly I could read all the faces and eyes she was giving me. I read to her a paragraph about how people don’t appreciate life as much as they should, and how death seems to truly put our lives into perspective and as I read this passage she truly comprehended it and just looked at me like she knew exactly what I was saying.

“‘Because’ Morrie continued, ‘most of us all walk around as if we’re sleepwalking. We really don’t experience the world fully because we’re half-asleep, doing things we automatically think we have to do.’
And facing death changes all that?
‘Oh yes, you strip away all that stuff and you focus on the essentials, when you realize you are going to die you see everything much differently.’ He sighed. ‘Learn how to die, and you learn how to live.’”

And then I explained to Grandma how this reminded me so much of her, that she taught me to appreciate the little things and that’s why I love her. I told her I appreciated standing there right with her and holding her hand, I appreciated kissing her cheek and stroking her beautiful gray hair. I appreciated her blue eyes and the sound of her rhythmic breathing. I’d never seen Grandma so responsive these past two days, and especially towards me. The closest I’d gotten to this was her saying she loved me too and squeezing my hand. To be completely honest, I was terrified that I’d never have a real chance to say goodbye, that my frustration and trouble with communicating how much I loved someone in front of others would get in the way of telling her how much I love her. That my shyness towards letting my guard down, even with the ones who know me best, would forever give me a shadow hanging over my head, a black cloud of rain, constantly reminding me and scolding me for never breaking down that wall and opening up because having my grandmother pass never knowing the huge amount of love I shared for her existed. I can’t explain the relief that completely washed over me after I had spilled myself onto my grandma’s peaceful spirit and presence.

This moment has a 999 in 1000 chance of being the most beautiful, inspirational, healing, incredible, love-filled moment in my life. It truly felt like it was out of a movie, her lying there, soaking in everything I’m saying like a gorgeous sponge. I can’t explain to anyone truly what a sparkling moment that was, and I think the fact that it was perfectly just between us two girls, Grandmother and Granddaughter that it was so wonderful. We felt our connection spark and we bonded on such a level only two people could when one was on their deathbed. I’ve never fully grasped a death of a loved member, nor have I have found it so beautiful in the strangest way. I know I will take so much from this experience and this moment, probably finding another aspect to take away everyday. I know I will begin to fully dedicate every new characteristic I obtain to Grandma, without whom I don’t know who I’d be.

Love,
Brooke

Peaceful

Mom is breathing easily, and looks so peaceful. It's midnight on Thursday night/Friday morning, and she hasn't eaten since a small breakfast Tuesday morning. She's had a few sips of water, maybe a couple of teaspoons worth, since she arrived here in hospice yesterday. The nurse told us earlier tonight that Mom was moving into the "active dying" phase, where she'll start getting kind of a rasp in her breathing. That may have been premature, because Mom looks pretty good, and in spite of some minimal coughing, she doesn't have the "death rattle" and she looks way too comfortable to be dying. That makes us so happy I can't tell you - nor do I imagine I need to.

For most of the day Mom's been sleeping and non-responsive, but she comes out for some brief moments that fill us all with such joy. She saw Courtney and lifted her arm to try to give her a hug. She puckers for a kiss, and when Brooke said, "I love you, grandma" she said, "I love you, too." I wish I could convey what an incredibly sweet and precious time these moments of alertness are for us. I hope you can imagine.

At one point she was alert long enough for me to get some people on speakerphone and say goodbye to her. Her brother Daniel came out of a business meeting to speak to Mom. Her sister Geri talked to her, and so did her friend Karen Utz, who Mom loves like a daughter. (I told her that makes her our sister. Welcome to the family!) It was such an emotional and beautiful time, and I can't imagine how anyone could not be touched deeply by it. Mom was surprisingly alert, and though she couldn't really express it, it was obvious that she knew who was calling.

Mom's sister-in-law Charlene was on speaker, and it was especially hard for her. She married Mom's brother Bob, and Mike, Mom and I were with their large family two years ago as Bob died. That was a fantastically rich and moving experience, and one that prepared all of us to such a large degree for what we're going through now. Charlene decided at the last minute to fly out with her daughter Julie to see Mom tonight. We almost tried to discourage it, thinking that Mom would be gone by the time they arrive. But they just called from San Francisco airport, and I think it's going to work out perfectly.

After Mom had a sponge bath tonight she's been laying in bed like she's a princess. Not a care in the world, relaxed and content, and I'm not making this up - she looked younger. When I asked if she was happy to be here, she said she was. I don't think you can ask for much more than that on your deathbed. And as her family that wants so much for her to be comfortable, it is truly wonderful to hear. I said, "Mom, are you OK?" "Oh, yeah," she answered. May we all be so lucky - peaceful, comfortable, relaxed, and surrounded by a loving family.

Of all the gifts we've received during this process, the one that stands out for me is this conduit tapping in a deep reservoir of love. I didn't know I could love my mother this much, and it grows by the day. Better still, it's not just the love of a son for his mother - it's just Love. Love that doesn't see an opposite, that doesn't require anything, that isn't based on an exchange. Not this Hollywood non-love love: I love you because you love me and if you stop I'll hunt you down like a dog. We're tapping into something much deeper in this temporary sacred temple of hospice. Love that doesn't recognize that there is other. Just Love. As a spiritual teacher said, the highest love is directed to none and denied to none.

I think I'm the happiest I've been in a very long time.

love, love, and Love,
Dave


Update: It's now 4 a.m., and Charlene and Julie arrived in time to see Mom. Patio recognized them, and we're having a wonderful time, reminiscing about two years ago when Bob died, and telling stories about the long history of shared Christmases and familial love. Beautiful!

Your essence

Please feel free to come visit Mom here at the hospice house. Visitors are welcome are welcome day and night here, although Mike and I are getting a little punchy, so reasonable hours are helpful. The facility is beautiful and peaceful, as you can see from the images on their website here.

Mom has been quite peaceful, and comes to for the briefest of moments where she responds to prompts. She puckered up for a kiss, which might be the most wonderful kiss I've ever had. Tracey Panek from church came by this morning, and I said, "Mom - Tracey's here. Can you see her?" Mom said, "I have my eyes closed," then quickly went back to snoring.

When she comes to for those moments it's so delicious and touching that it hurts - it's physically painful. I just can't get enough contact, and these brief moments are a reminder of what we're losing. I was telling my good friend Lauren, who's spending the weekend with her Mom, about how precious that time is, and how none of us can really appreciate it until it's too late. All we can do is try - and sometimes we'll be successful. Make the effort to enjoy this precious moment, the one you're living right now. It's fleeting. And if you have a Mom, give her a kiss for me. Love is your very essence, and sometimes you know it.

Much love,
Dave (and Mike and Mary and Courtney and Brooke)

Mom is moving to hospice Wednesday evening

Mom has been mostly out of it today, with limited communication, until old friends came by, and she greeted them by name. She smiled and made hand gestures, then slipped under the waves just as quickly. One of the nurses aids that Mom likes came to look in on her, and Mom got a big smile of recognition, and quietly mouthed his name, "Mark." The two of them hugged and Mark broke down in tears. Not a dry eye in the house, to be sure.

We're waiting for Mom's last ambulance ride, and she visibly grimmaced when I told her about it. We're moving her to Bruns House, a small hospice house in Alamo, only six beds, that we've heard rave reviews about. Mom and I had talked about it over the last few months, and Mike and I think it justifies the dreaded ambulance trip.

Here's the address: 2849 Miranda Avenue, Alamo (Google Maps)

Check the blog or call me or to see the latest status: 510-282-1133.

Love,
Dave

Overflowing with love

The roller coaster continues, but maybe not for much longer. On Monday night Mom was super agitated, and having tons of pain, which was being managed with morphine injections every two hours. She also got another medicine for the agitation, which enhances the effect of the morphine.

By late this morning, Tuesday, the oncologist was saying that nothing that was happening would prevent the hip replacement surgery Friday. It's a horrible situation to be in, but the hip pain is so bad that it made life intolerable. Since then she's been non-responsive, and incredibly, hasn't had any pain meds since 9 a.m., and it's now 10 p.m. How could that be?

Mom opens her eyes sometimes, and sometimes tries to say something, but we don't have the feeling that she understands, even when it makes sense. I can't even remember all the ups and downs of today. Mike and I were thinking that maybe this was the end, while the docs and nurses were mostly saying it was the meds. Then the oncologist said she seemed to have internal bleeding, which would account for the red blood cells dropping.

Around nine o'clock one of the doctors who we like a lot and who'd seen Mom twice before in ER, including on Sunday, came by. She looked at Mom's distended belly, heard about the lack of pain meds, saw the unresponsiveness, and went on to describe the laundry list of the ways that Mom's body seems to be shutting down. She then summed it up by saying we might want to spend the night tonight if we'd be really disappointed to not be here when she passes away. That just hit Mike and I like a ton of bricks. We knew that was a possibility, but hours before we were still planning on a hip replacement on Friday. Now we don't know that she'll be alive Friday.

This evening Mom woke up and kind of came to, for the first time today. She got a little agitated again, kind of wrestling with us and trying to pull off her covers so she could make a run for it when no one was looking. But after a time she got very still, even looking serene, and though she mostly doesn't know who we are, she looks right into our eyes. Her eyes are bright blue, and even now they're as clear as a bell, and she really looks beautiful. Something startled her and she said, "Oh!" and smiled. She's holding onto both of our hands, and her skin is cool and soft. It's always been nice to sit with her, but I'm sure I've never appreciated it the way I do right now. I am really cherishing this moment, appreciating it more knowing that it won't be available for much longer. It actually makes me gasp to write that.

Mike and I are crying like babies, and I can't speak for him, but I feel like my suffering has ended, because I've stopped fighting. I'm surrendering to this inevitable moment, and this hospital room, our home away from home, is just swimming with love.

If you're in the area and want to see dear Patio, knowing that you may not get another chance, please feel free to come by the hospital. We have no way of knowing what is happening, or even if this is really the end. But please come by if you want. She won't recognize you, if she's like she was today, but she's still here, and her blue eyes are still beautiful.

Overflowing with love and gratitude,
Dave (and Mike)

We suffer less if...

I'm sitting in Mom's hospital room, and things seem to have taken a turn for the worse. (Not that I really know.) Last night in the ER, around 10 p.m., she had a couple of bites of a sandwich and then threw up. She complained about her stomach hurting, but that seemed natural. But in the night she had intense pain in her stomach that is now being treated with morphine. If you can believe it, this new pain seems worse than her hip pain. She's sleeping now and I'm waiting to hear from the oncologist. Maybe she has some ideas on what's going on with Mom's cancer.

I stumbled across this paragraph on a website as I'm sitting here, and it strikes me as, oh, perfect:

Sylvia Boorstein’s fifth book, "Happiness Is an Inside Job: Practicing for a Joyful Life", is dedicated to her dear friend who died of cancer. The message of Sylvia’s book is one that anyone can access: we suffer less if we stop struggling against what happens to us and begin to accept things as they are - when we acknowledge that ‘this isn't what I wanted but it's what I got.’

I have my work cut out for me. It doesn't sort of describe the suffering that I'm going through during this time - it completely describes it. I attended a one-month silent meditation retreat where Sylvia was one of the teachers, and she's a peach. I found another quote of hers on the same topic:

I've discovered there are only two modes of the heart. We can struggle, or we can surrender. Surrender is a frightening word for some people, because it might be interpreted as passivity, or timidity. Surrender means wisely accommodating ourselves to what is beyond our control. Getting old, getting sick, dying, losing what is dear to us, what the Buddha taught as the first Noble Truth or life's unsatisfactoriness-- is beyond our control. I can either be frightened of life and mad at life-- or not. I can be disappointed and still not be mad. Stopping being mad -- when I can, -- translates for me as being compassionate -- to myself as well as to other people.

Sometimes I know this, but I don't always know this...

Love,
Dave

Where everybody knows your name

It's almost 1 a.m., and I just got back from John Muir Hospital, where I had to take Mom this afternoon at four. After my last message she slept like a rock for three hours, but was just as confused when she woke up as she'd been before the nap. A few months ago she'd had an episode like that but had recovered from it after a sleep, so I was hoping for the same. But in spite of not having any temperature, she was very confused and antsy. After talking to the doctor who gave her the shot earlier in the day, I decided it was best to take her in, and if they just monitored her for a while and let her go, that would be fine.

I was able to get her into the car, so I didn't have to call an ambulance. On the way, though, she was really fidgety, and tried to open the door several times while we were driving. For a lot of the day she had kind of a nervous energy that was looking for something to do, but didn't know what to do with it. (In a funny and nice coincidence, the nurse that admitted us was a former neighbor of mine in Walnut Creek, and someone I hadn't seen in 15 years.)

We had the usual treatment in the emergency room: once they decide you're not going to die suddenly, you move way down the list and are lucky to get any attention. It actually makes sense, but it's frustrating. In past trips, Mom's confusion has gone away as soon as her temperature returned to normal. This time she didn't have a temperature, and her confusion just wasn't going away - and still hadn't by the time I left. She was feeling more calm, but still wasn't sure what year it was. The initial battery of tests all came back normal, except for a slightly elevated white blood count. That could indicate early stages of infection, but it was only 11,000, where normal is 10,000, and last time it was 20,000. The only plausible explanation, so far, is that it's a build-up of the pain meds. The problem with that explanation is that I can pinpoint the time she became confused within a few minutes. She just turned a corner somehow right after she got the injection this morning. That injection shouldn't cause that, and if it did have a reaction, it couldn't happen with minutes of receiving it. Could it? Oh, that's right - I don't know. And neither do the doctors.

Mom eventually got moved up to her favorite ward - 3 North. Where everybody knows your name, and they're always glad you came. Sort of.

I'm beat, so I'm going to bed. I'll keep you posted. Thanks everyone, for your love and good wishes, sent and unsent. I appreciate them all, although I do have a bias for the sent ones....

Love,
Dave

A close race

Today it feels like a close race between me and Mom for who is more miserable. A little while ago Mom thought it was 2009, and I'm praying that it's just the effect of the pain meds and not another infection coming on.

Last Thursday we had a flurry of activity so we could get Mom scheduled for hip replacement surgery this coming Friday, 6/27, at 6:30 p.m. (That's an odd time for surgery, we all think.) A lot of things had to fall into place, including blood tests, doctor's visits, daily injections at the doctor's office this week. Mike came down for day with his youngest daughter, Brooke, and took Mom to a one-hour seminar about the surgery and recovery. She should be in the hospital for three or four days, then in a rehab facility for maybe two weeks. One of the rehab choices is to be at John Muir, which I'm going to request, since we've had such good experiences with them.

Mom is really scared of the surgery, and even talked about not going through with it. She's afraid of not making it through the surgery itself, even though the doctor's have told her that the real risks aren't in the surgery but in the recovery. She seemed like she felt a little bit better after an injection today, Sunday, including a little pep talk from the doctor.

It's kind of impossible to tell why Patio is having such a hard time right now, but the two obvious things are the pain in her hip and the pain meds she's taking for that. The cancer itself doesn't seem to be giving her obvious problems. She can't keep things straight, can't find words, and is moving as slow as a turtle. She seemed like she was feeling a little better this morning, so we decided to have breakfast out after her injection. We got seated outside at the Buttercup Grill in Walnut Creek, with some difficulty, and she started talking nonsensically about how to get her sugar in her coffee, when she doesn't take sugar. Then she wanted to stand up - I'm not sure why - then she wanted to switch chairs. I ended up leaving $20 on the table for the breakfast we'd ordered but couldn't wait for, and we came home. I took her temperature while she was still in the car in the driveway, because I thought there was a good chance I'd be taking her to emergency. She didn't have a fever, but she's definitely loopy in a way that she wasn't yesterday. She collapsed in bed just after she had something to eat, and with these meds she hardly moves a muscle. That was two hours ago.

As hard as it is to think of my mother dying, that's so much easier than it is to be with her when she's in so much pain. It's wrenching in a way I wasn't prepared for, and I'm not sure it's getting any better. I'm reminded of that Woody Allen line: "I'm not afraid to die - I just don't want to be there when it happens." That's about it with respect to Mom's suffering - it's just so hard to be with. It's amplified when I'm the caregiver, because I feel like I need to making decisions about her care that I'm not qualified to make. I'm not having fun.

Mom keeps asking me, "Are you getting tired of taking care of me, yet?" I told her that it's like when I was a kid and needed some care or attention. She didn't sit back and think, do I feel like doing this? Is this convenient? No - you just do it. So that's what I'm doing.

I love you, Mom.

Dave

p.s. Almost forgot - I'm having eye surgery three days after Mom has her hip surgery! I have pretty advanced glaucoma, and I'm getting a tiny little valve implanted in each eye - in my left eye first. It's a straight-forward surgery that ought to be simple. Except it's your eye. It does stress me out a bit, because it will limit what I can do to take care of Mom for a while. I'm not supposed to lift more than 30 pounds for a month or something...

Out of the hospital, and more drama on the horizon

I'm sorry I didn't post this earlier like I should have. Patio got out of the hospital last Thursday. It went pretty much like we thought it might - they couldn't determine the source of the infection, so they treated it with a broad antibiotic (several, actually) and sent her home once she was well enough. She's been lacking in energy, which could come from any or all of these factors: infection, antibiotics, cancer, or hospital food.

Once again, her hip has been her biggest issue, and that is totally unrelated to the cancer. Her hip went from fine to terrible last fall, and now it's just excruciating. When she was first diagnosed with cancer in January, her oncologist said that hip replacment surgery was a possibility if she handled the chemotherapy well and looked like it would be worth the pain and discomfort it would cause. At the time we couldn't have imagined it, but I believe we're at that point now. I hadn't written it before, but there's a good chance that Mom doesn't actually have pancreatic cancer, but rather a close cousin - cholangio carcinoma. The end result is the same, as is the treatment, but patients typically live longer, but not by much. Maybe a couple of months or so on average.

Anyway, Dr. Johl suggested that if Mom was with us for another five or six months (he was quick to say that he didn't know if that was accurate) then the six week recovery with hip replacement would be worth it. There is some risk, but as he put it, no more risk than if she'd had it before she had cancer. Joint replacement increases one's risk of infection, so an undetermined source like Mom has isn't a good thing. But the pain she's had has just made her miserable.

We're trying new forms of opiate-based pain relievers, and although they do help with the pain, she ends up confused. If that's all that happens, that's fine, but the risk is that she'll make a bad decision when she's in that state, like trying to walk without her walker or she'll lose her balance and fall. Tonight, for the first time, her caregiver Alice will be staying overnight with her. Last night she took Oxycontin for the first time and it made her pretty loopy. Tonight we're trying a lower dose of the same type of medicine - called Oxycodone. We'll see what happens.

Thanks for all your good wishes...

Love,
Dave

Four weeks, two days, and we're no longer counting

For the last three weeks or so Mom has had the neighbor from across the street, Alice, helping her weekdays from about 9 a.m. until 8 p.m. Mike and I have been coming on the weekends. Things have been going swimmingly, without the swimming, and Mom's biggest problem has been the pain in her hip. A few days ago she got another cortisone/lidocaine shot that was so effective last time. It's taking longer this time to work and we're not sure it's doing the trick.

I got up this morning and Mom wasn't in in her front room, which isn't unusual. When I peeked into her room, I had the same feeling I do virtually every time I peek into her room: I hope she's OK and hasn't fallen or anything. My heart sank when I couldn't see her in her bed. She was sitting on the floor, leaning against the bed, looking comfortable, at least, but totally disoriented. She can't get up off the floor because her knees won't bend, and when I asked what happened or how she got there, she didn't know. She wears a medi-alert button around her neck, but as usual doesn't know to press it when she gets in this state. She couldn't even hazard a guess at to what year it was. I had the thought to take her temperature, which was the problem the prior two times I had to call an ambulance. Sure enough, it was elevated, so I called 911. Like last time, she was coherent enough to know that she didn't want to go to the hospital.

There wasn't much drama at the hospital, really. All of her vitals are good except she had a fever and elevated white blood cells, indicative of an infection. She spent about five hours in the emergency room before being transferred to a regular room, but shared with one other person. She gradually got more coherent as the day went on. At one point, I said, "Do you know what year it is?" She answered confidently, "Oh, yeah." She said it with such certainty that I thought it was dumb to pursue it, but when I said, "OK, what year is it?" she replied, "1986." About two minutes later she pulled off that little gizmo that clips to your finger, and I said, "Mom! You have to leave that on." She looked puzzled and said, "Why?!" And I had to admit that I didn't really know and it probably did something that was probably important.

She's taking antibiotics, and it could easily go the way it did on her last visit. She'll feel much better when the infection gets treated, and be ready to come home in a couple of days. Not that I know - anything. Saturday, the day before she got sick, we had a really nice day, going out for breakfast, taking a long drive through the hills, going out for dinner, and watching a movie about a parent getting dementia and dying - OK, that wasn't a great choice. But she'd been feeling well enough that I was trying to talk her into going to a family reunion in Star Valley, Wyoming, that she'd really like to go to. And she felt well enough to have some enthusiasm about it, too. But that was Saturday...

My practice these days is to be vigilant, on a day-to-day basis, about the nature of Mom's condition. Her spells of good health and her visits to the hospital have the same characteristic - they're temporary. There's no benefit from wishing it was other than it is just now, but there's a great cost to clinging to a condition that will, inevitably, change. That's not something that I can just learn and be done with it - I have to be vigilant. I'm trying. What else can I do?

Love,
Dave

Pat's back in the hospital

Mom's back in the hospital with a fever and disorientation. Hopefully it will be a short stay. The ambulance came for her an hour ago. I'm on my way there now. More later...

Nine days, 23 hours - but who's counting?

Today's post was written by Dave's good friend Whitney:

Hello friends and family of Pat,

I spent a warm evening with Pat and Dave on Friday night, and Dave asked me to write a word or two about it. Pat is looking extremely well and is having a great week since leaving the hospital. I think she must be tired of hearing people say, “You look GREAT!” when what they’re really thinking is, “You sure don’t look like a person with cancer.” And she doesn’t. It’s confusing. And a relief. Lets dare to believe things might just work out fine.

Dave and Whitney in Mexico, 1996.

Ten years ago, Dave and I had several long, meandering conversations with Pat’s Mom, Elgin, when we were passing through Orange County on our way to Mexico (and Central America, though we didn’t know at the time that we were headed that far). I come back to these conversations often, because she taught me so much about how life is long and how much love and life comes after even the most unbearable losses.

Friday’s conversation with Pat started there with stories of her Mom, and then we ranged over the history of the Johnsons and the Woods. She got out the wonderful book of Crook family history (what a deeply generous gift to future generations!) and Pat shared recollections of uncles, aunts, grand uncles, grand aunts and cousins. We pieced together Pat’s own early chronology, which isn’t as easy as you might think because she and her immediate family moved pretty much every year until they landed in Southern California, bought some land and built a house (garage first, with the whole family of 6 living in one room, until there was a mudroom, then a bedroom to share with her sister and eventually a kitchen).

I have an abiding interest in what it means to have a sense of place, and Pat and Elgin’s lives have strong place-based themes, beginning of course with Star Valley and ranging over the years to family centers in California and Utah. Friday happened to be one of those sharp blue early summer days, contrasting sprawling and green Walnut Creek against the sparse browning hills of Mt Diablo, so typically California. This is where Dave, Pat and Mike and his family have made their place for a long time now. We talked about what California means to both Dave and Pat, and what it means to be “from” somewhere.

We got to talking about how much the various family reunions have meant to her over the years. She related how brother Bob sent out the invitation to bring the Wood clan together one year and pretty much left the details to Pat and Char, lots of work but so very rewarding and memorable. She described the color-coded t-shirts that helped everyone remember who belonged to what part of the extended family. I asked her if she felt deeply connected to people she perhaps didn’t know or hadn’t seen in a while, and she responded urgently, eyes widening, “Oh yes! Absolutely!”

It is so helpful to be reminded that we are part of a long chain reaching backwards and ahead. We three talked quite openly and easily about death on Friday night, but it was in a sense-making way, not heavy or tearful, gently sharing how losing a grandmother or a parent ties us more meaningfully into that web through shared experience.

The extended Adair/Wood/Johnson/Crook family history continues to instruct me, and I am so grateful to be connected in a small way your big loving web of life, even if we have never met.

Love,

Whitney

Whitney and Dave (on the far right) last weekend
with friends at Tassajara Zen Center.

Happy Mothers Day

Mom came home from the hospital on Friday afternoon, and has been getting a little stronger every day. She is restricted to 1 liter of fluids per day, and is continuing with the  diuretics. In combination with her low sodium diet, it seems to be slowly working to rid her of excess water.

Brooke, Courtney, and Mary came down today and we celebrated Mom with a nice lunch. To cap it all off, Mom took a walk up to the end of block and back when we got home. She took a couple of brief rests, but it was at least 3X as fas as she walked yesterday.

Everybody tell your Mom you love her today (and every other day too!).

Lots of love,

Mike

No news is good news? Maybe.

Not much to report on Mom's first day back at the hospital. Her fever is gone, but the edema in her legs is trying to stage a comeback. She's really exhausted but managed to take a short walk down the hall. When she got back into bed she looked like she'd run a marathon. She was in good spirits most of the day, and laughed at my jokes, which brings into question her sense of humor. I was adjusting her pillows and said, "Are you comfortable?" And she said, "Yeah." I said, "Are you glad to be here?" And she gave a deadpan "Thrilled." Mom managed to stay up long enough to watch "Dancing With the Stars" and cheer when what's-his-face got the boot. When the show was over she summarily gave me the boot, and was practically asleep by the time the door shut behind me.

The cardiologist came by earlier and ordered some more tests, but didn't have any solid opinions about what's going on. So we're back to square one. Or maybe it's not square one - but it feels like a square. And we're on it - waiting, again, for that elusive period of "relative health" that I keep talking and dreaming about. While we're waiting, here's a quote about the journey:


On the Fear of Death, from Rabindranath Tagore (1861 - 1941)

Let me not pray to be sheltered from dangers
but to be fearless in facing them.

Let me not beg for the stilling of my pain
but for the heart to conquer it.

Let me not look for allies in life's battlefield
but to my own strength.

Let me not crave in anxious fear to be saved
but hope for the patience to win my freedom.

Grant me that I may not be a coward,
feeling your mercy in my success alone;
but let me find the grasp of your hand in my failure.

Much love,
Dave