I took a break for myself a few hours ago, coming back to the hotel room for a nap, a salad, ten minutes on the elliptical, twenty laps in an empty pool, and a jacuzzi. I intend to head back to Vernon’s room soon. Some days I’m more tired than others, so I’m so thankful for this hotel. Every night, its been paid for by a different friend. Every day, my bed gets made and my towels get hung to dry. Every morning I can have eggs for breakfast. And I can stretch out on a queen sized bed of my own every night by myself without a little girl marking her territory with kicks and cuddles. I miss her though. I miss Maki too. But they are both entertained and happy where they are with lots of love and distractions around them. I’m still happy to be staying close to Vernon. Today I just happened to take a longer me-break than I have taken this week. So I must be feeling content about his medication…for now.
Every day has been different. Every day has been a chance to work through the bugs of hospice care. “To train the carers,” as the hospice nurse said when I complained how rough some of the transitions have been. I have no fault with the care home, not enough to complain about. They have been great for us for a long time. BUT hospice care is different—or “Comfort Care” as I believe it will soon more commonly be called. The care home staff runs on a different rhythm and routine than end-of-life care nurses do…so it has been confusing and frustrating when I expect certain things and don’t get them right away, having to explain, ask questions, track someone down, etc… But though Joe and I get to bond in our venting about these issues together, it hasn’t been bad. We are getting there.
I believe as of today (though it changes everyday, so why shouldn’t it continue?) we are on top of his morphine intake for now. It’s been easier with him sleeping, though of course I’m happy to see him come to the surface here and there.
Here is lovely picture of Vernon holding onto my leg yesterday. (Good thing I got my toes done the day before! Not that his closed eyes would notice…but better for a photo!) 🙂
But it’s been good. My sister Cambria has been in town and at my service, helping with Justine-pickup, laundry, coffee, lunches. Here she was this morning, getting to know Joe, my constant companion at Mesa Verde these days.
I especially like this picture I took of them yesterday:
Cambria has always been the kind of person who shows up in the difficult times. It was special to be the recipient of her unusual (but important) gifts.
The Logies also came yesterday. I knew they were aching to be with Vernon, especially being with him every time he’s had a crisis or special event in the past year. Even last week, they were at Hoag every single day. He wasn’t awake for much yesterday, but I know he heard the music. His foot was tapping. His antennae is still going strong. It helps us know he is still present.
Andrea took me out to dinner the other night at the most amazing restaurant that I’ve passed every time I’ve visited Mesa Verde. The kind of place that specializes in Manhattans. It’s sort of sad because I really liked that place, but can’t envision myself returning to the neighborhood in the near future. At least I got to experience it. Thanks, Andrea!
My dear friend Sandy stayed over last night. It meant a lot to have her near as I met her shortly after her husband went to Heaven at 59 years old. We’ve been close ever since. She let Vernon stay at her home when he first visited me that fateful 🙂 Christmas, and a few years prior to that, I was blessed to be her company as her own mother passed away. (The only other time I’ve witnessed a death. It’s a privilege I’ve never forgotten. And its important to share some of this time with her now.) We went to go see a wonderful movie last night: Florence Foster Jenkins. It was absolutely the perfect movie to watch in this time. I cried because of the love in the relationships in this movie. I’ve become a Hugh Grant fan again—I related so much with his character, and he played him wonderfully.
It has been hard for me, honestly, that this is taking so long. He may have a lot of life in him yet. It’s hard for me to not have him as present, but it’s easier to see him resting peacefully. I’d rather see more of that than his fighting to be alive. I know we aren’t extending his life…so I don’t want to extend his death more than necessary. It’s a very akward thing, to be honest. I’ve cried a lot tears these few days. It’s so damn sad. But it’s more sad to see him in pain and fighting than it is for him to look rested. I must say he looks like a young man without the stress on his face. And he has hardly any grey in his hair. And he has hair. He looks great for 49, don’t you think? Almost angelic.
“Now cracks a noble heart. Good-night, sweet prince; And flights of angels sing thee to thy rest.” —William Shakespeare.
The hotel I’m staying in is just a short block from Newport Subacute, the first convalescent home Vernon stayed in. Vernon only stayed there for a couple of months before we moved him to Mesa Verde. I walked over there this morning because there’s a Starbucks on the corner. While waiting for my black americano, I strolled the parking-lot one last time.
Those who have been following the story for a long time might remember the quirky antique store I used to frequent as well. There was never much I wanted to buy but lots to look at. I could spend an hour at a time in there.
Vernon did buy me a ring there though. Remember? (I picked it out and paid for it as wives are good at doing. I’m not alone in this, am I, ladies?) I’m still wearing it regularly.
Pretty, right?
I’m really only writing about this this morning because I’ve been meaning to comment more on all the closures I’m seeing around me. I’ve been seeing them for some time. They were really strong last week at the hospital. Now I’m more used to the signs and connective memories popping up everywhere. I notice them, but I’m no longer startled by them. I just don’t want to forget.
Last week, when everything was intense and active with so much change, important choices, people to talk to, going back and forth from home to the hospital, it felt to me as if I was witnessing the forming of a bracelet clasp, mirroring the clasp that was formed at the onset of our journey. Everything in between was the bracelet, but it’s the beginning and end of the circle that complete it, make it into a piece of jewelry rather than just an ongoing strand of beadwork or metal. It’s the clasping of the thing that gives it a name, a purpose. It’s the closure of the clasps that we are experiencing: the circling around, the solidifying.
So many mirrored things. Too many to list here. So many faces showing up at the end that showed up at the beginning. I try to capture them all as I see them, but I know I will forget. People bringing food, coffee, wine…they did this in the beginning. People providing fun distractions and care for the kids. Even the hotel shampoos and lotions have a message for us.
From Ecclesiastes 7:
A good name is better than fine perfume,
and the day of death better than the day of birth.
It is better to go to a house of mourning
than to go to a house of feasting,
for death is the destiny of everyone;
the living should take this to heart.
The end of a matter is better than its beginning,
and patience is better than pride.
Also from Solomon, that old Wise Guy:
“you have captivated my heart with one glance of your eyes, with one jewel of your necklace.” (Song of Songs 4:9)
I just took this photo of Vernon…the first time I’ve seen his eye open since last night. It may be the last picture of him looking at me that I will get. I felt lucky to get it now.
“Myth is much more important and true than history. History is just journalism and you know how reliable that is.” —Joseph Campbell
I took this picture yesterday in the golden hour at the care home. It’s me and some mythical creature, a nymph perhaps, caught in stone…and shadow. Caught between both worlds, I can relate with her.
Here’s a definition of Mythical Creature that I found online: ” A mystical, mythical, or legendary creature is a creature from mythology or folklore (often known as “fabulous creatures” in historical literature)” In other words, a FABULOUS being. I’ve been seeing a lot of them lately.
One friend recently wrote me to say that its a privilege to walk someone into death. She said these people get to see things, “like in Harry Potter, when they got to see the Thestrals.” I smilled…sort of knowing what she meant. Things have been happening around here for awhile.
My mom brought Justine up for a swim and some cuddles last night. Even this little mortal has taken on Mermaid form.
And I heard a beaming report of Maki from the mother of his best friends ( THE TWINS). She told me she wasn’t used to someone opening doors for her and carrying her groceries. Here’s a picture she sent from their school supply run to Target, while the kids were in Water Polo practice. ALL of Maki’s parents would be proud! I know I am.
Here are some more mythic people I’m having the pleasure of knowing…people living and working in this alternate universe of a convalescent hospital:
Dr. Hong popped by this morning, agreeing with our request that Vernon be on 24 hour morphine now. Even Vernon is no longer resisting. For the past couple of days, he resisted medication till it got too bad. He knew it kept him form the clarity of communication—the surge he knew he’d been having. It was confusing yesterday for me…until I spoke to a Hospice nurse about it. She told me it’s more important to keep him comfortable and pain free than anything else right now. As of this morning, he’s taking morphine frequently, and gratefully.
Above is a picture taken last week with his evening CNA, Judy. She’ll miss him.
Here is a picture of Ramona, his daytime CNA. She finally posed for a picture. She was too distraught when I asked her for one last week.
But she was up for one today. It’s very important that he says clean and shaved for visitors (me!)
Here I am with Carlos, one of the first residents I met here. He had stopped by our door the other day after hearing the news, offering his condolences and prayers. These patients live closer to life’s veil than most of us. Maybe we are all close, but they are more aware of it. They live with dying everyday…in themselves and in their neighbors.
Speaking of mythical creatures, here is sweet Anita, our siren and flower-whisperer. Today she asked me to cut her a rose as she was no longer able to do that. I managed to get one to her, cut from the front garden with scissors from the reception desk. De-thorned, of course.
And here is our epic hero, Joe, a steadfast friend till the end.
Mere mortals? I think not. They are “fantastic beings” all and we are privileged to see them.
My sister Cambria flew in from San Francisco to just be around, be of service, etc. As Vernon finally asked for stronger medication, we left him to sleep and wandered around nearby Balboa Island, looking for lunch. It was a beautiful afternoon. We walked around the pier and caught some fresh sea air for a bit of change.
She’s now gone back to the hotel to meet up with my mom, who is bringing Justine up to hang out in the pool for a couple of hours. I’ll be heading over there soon. I miss that kiddo. I checked in with Maki earlier. He says he’s fine if I need to stay up here a few more days.
Vernon woke up long enough to feed himself ice cream.
And even this dripping it all over his blanket worked out…as someone just walked in with a gift from some of the people at my church: a prayer-knot blanket. He’s sleeping soundly again with fresh covering.
“This is becoming a time of withdrawing from everything outside of one’s self and going inside. Inside where there is sorting out, evaluating one’s self and one’s life. But inside there is only room for one. This processing of one’s life is usually done with the eyes closed, so sleep increases. A morning nap is added to the usual afternoon nap. Staying in bed all day and spending more time asleep than awake becomes the norm. This appears to be just sleep but know that important work is going on inside on a level of which “outsiders” aren’t aware. With this withdrawal comes less of a need to communicate with others. Words are seen as being connected with the physical life that is being left behind. Words are seen as being connected with the physical life that is being left behind. Words lose their importance: touch and wordlessness take on more meaning.”
FOOD:
“It’s okay not to eat. A different kind of energy is needed now. A spiritual energy, not a physical one, will sustain from here on.”
DISORIENTATION:
“Focus is changing from this world to the next: they are losing their grounding to earth.”
ONE TO TWO DAYS, TO HOURS PRIOR TO DEATH:
“Sometimes there is a surge of energy. A person may talk clearly and alertly when before there had been disorientation. ….THe spiritual energy for transition from this world to the next has arrived and it is used for a time of physical expression before moving on. The surge of energy is not always noticeable, but in hindsight, it can usually be recognized.”
“How we approach death is going to depend upon our fear of life, how much we participated in that life, and how willing we are to let go of this known expression to venture into a new one. Fear and unfinished business are two big factors in determining how much resistance we put into meeting death. The separation becomes complete when breathing stops. What appears to be the last breath is often followed by one or two long spaced breaths and then the physical body is empty. The owner is no longer in need of a heavy, nonfunctioning vehicle. They have entered a new city, a new life.”
We have definitely seen a mental surge in Vernon over the past week. When it seemed Vernon was slowing down again into more sleep and confusion, it seemed to me that it was just a matter of time. But even last night, I saw a different alertness that alarmed me. He was agitated and seemed strong. Even in the dark light of the room, his left arm looked more functional, stretching across his body by holding the bedrail, just like all those times on the dialysis chair. He doesn’t want pain killers because he knows they make him groggy. He seems to understand that quality time is short, even if he only emerges from sleep less frequently.
The Hospice nurse thinks his heart is strong, that he could go on another week or so. I’m not sure where I want to be if it goes on that long. Do I stay here or go home for a bit? Fortunately, I don’t have to make that decision today. I do like being nearby at the moment…with freedom to come and go.
It is confusing though: sometimes elements of his “surge” make me doubt certain decisions. I have to remind myself there is no turning back from this path now, that it is happening regardless of how Vernon is responding. That’s hard. Derek, our chaplain (and friend) has talked through it with me. Or at least he listens while I talk through it.
I asked Vernon earlier if he felt confused. He said he did.
“What are you confused about?”
“Everything.”
(a pause.)
“And nothing.”
Here’s one more excerpt from the booklet:
“Death comes in its own time, in its own way. Death is as unique as the individual who is experiencing it.”
I sent the kids off to school this morning with plans to go elsewhere for a couple of nights, then I put my own suitcase in the car and headed up to Costa Mesa. My friend Nicole booked a hotel room for me (she plans to come down and keep me company tonight. I just asked that there be a swimming pool. Here’s a picture of the kids from yesterday, first day back to school. I think it is turning out to be a good distraction for them.
Maki seems fine. He seems more grown up. He understands what I need. He understands what he needs. Justine, on the other hand, is struggling to know how she is supposed to feel. She seems confused and is acting out on me a little. This, I was told by her school counsellor over the phone this morning, is very normal. Its also part of the reason it feels good to get away for a few days. Sometimes getting distracted attention is worse for her than getting no attention from me at all. She’s staying with my mom and dad, while Maki stays with his best buddies (the twins!) from school.
It was strange leaving this morning, planning not to come back until Vernon passes away. It was even stranger, turning the car off my street and over the exact site of the original accident, the night that started it all. We had since moved to the very street…by a bizarre stroke of fate. It’s where this journey started and now, part of its ending. I’ve seen lots of circling elements like that. I hope to write more of them down soon. But I’m tired and its been hard to keep up.
I actually just woke from a needed nap at the hotel. I feel better and will go back to Mesa Verde as soon as I’ve finished this entry. I would have liked to stick around with him more today, but I hit my wall about noon, and had to start pacing myself. He’s sleeping so much now, and though I love our connected visits and ice-cream-filled moments, they are becoming shorter and shorter. I want to pace myself for the time when he slows down considerably and I am there all the time.
He’s more dreamy, more sleepy, and very sweet. This is certainly a very peaceful way to go, as I was told it would be.
Here’s one more full-circle story before I go back over there:
The night of the accident, when my dad and I had first gone over to check on him, before his surgeries, before they knew he would make it through the night, the surgeon on hand handed me Vernon’s wedding ring. I wore it with my single engagement band/wedding ring because I’d often thought it would be nice to have two bands, but hadn’t really cared back at the time we got married. So I wore his ring with mine until it broke at it’s weakest spot around 9 months ago, I’d guess. It was pretty sad to have it break—granted it was a $20 silver Navaho ring he’d bought at the San Juan Capistrano Mission ten years ago, and it wasn’t the first time it had broken. But this time, I never got around to fixing it. I put it in a little bag with Justine’s baby teeth instead, and I’ve been back to wearing my single band. When Dave pointed out his new wedding ring to Vernon the other day, Vernon looked to his hand: “Yes, I have one as well,” he said. Of course there wasn’t one there, so I got the idea to bring it back and put it on him today.
Because it was broken (and because it was cheap), I was able to stretch it over his swollen ring finger. He wore it proudly for a couple of hours before asking me to take it off again for discomfort. I had been so sad when it broke, but if it hadn’t broken, there is no way he could wear it now.
Ok, I’m on my way back now. I’ve had enough me time for a couple of hours. I’ll make sure I get some later. Anyway, I’m pretty sure it’s about ice-cream o’clock.
A special cover of Vernon's fav song 'Waterloo Sunset' by friend and singer/song-writer Ian McGlynn. All proceeds support Vernon's recovery! Donate what you can and download a beautiful song in return.
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