If you saw the last post, you’ll already have a good idea of how Vernon’s holiday outing went. I’ve been trying to process it all ever since he left yesterday afternoon, and I’m still not sure how I felt about the day. For me, it was A LOT.
However, I think it was a success. Nobody was hurt, let alone dropped, nobody choked. Everyone survived. And most of all we overcame a looming milestone the best we were able. It was a success.
Today, I feel more removed and relaxed and can look back fondly, but I must be honest, I also feel quite sad. Bittersweet is maybe a better word, because there was so much love in the air yesterday that I can’t help but feel positive about it in the midst of the ‘reality check’ that this special day’s activity brought on.
Before I tell the whole story, I must say that my parents were incredible. They visit Vernon when I need help but we rarely are around him all at the same time, so it was so wonderful to see the bond that they maintained with him, even though it was a brand new situation for all of us. My dad met me early in the day to pick up the van, but not without having a trial lesson. I was already pretty overwhelmed, just thinking ahead about the upcoming field trip, so I was beyond grateful that my dad stepped in to do all the handiwork. He also drove the van. (AND re-filled it with gas.)
He would have stopped to buy us all our favorite coffee treats once we left the facility, but Vernon didn’t want to stop. He was a man on a mission. In fact, when we first went to pick the guys up, he was notably excited (ie agitated.) When we moved Joe out first, Vernon tried to crawl out of the bed and off the protective mat below his bed, hoping to catch up with us. His eyes were wild and he was rocking back and forth, demanding as ever, obviously worried that we weren’t moving quickly enough (and I expect, worried that we might change our minds and leave him.) Vernon has been looking forward to this day for about a month, though I’m never sure how much he retains as far as the passage of time. His memory is still very vague, but this time, it was obvious he was chomping at the bit. (His jaw was nearly-literally chomping in his wild tension of keeping upright in his chair while moving fast.)
The ride home took forever, even though we opted for the lighter-traffic of PCH. We’d hoped they’d enjoy the view, but Joe was too tall to see out the van windows comfortably, and Vernon looked like he would be sick the whole way home, constantly grabbing for the wet-wipes I’d found in his bag, and dousing his brow. I could see he was overstimulated within ten minutes of the drive. (Remember, when he travels, he usually lies down on a gurney and doesn’t have side window to look out of. Also when he travels, its part of a routine—back and forth to the same place (dialysis) every day.
Since my dad was driving, I was free to sit in the jump-seat next to Vernon. He let me hold his hand some of the way. He kept calling out directions, almost frantic that my dad didn’t know the way to his own house (it was to theirs that we were going.)
I was already concerned that we’d taken on more than we could chew, but when we reached the house, my mom (and the kids) were waiting for us. If I ever forget how amazing my parents are (which I won’t) I just need to look at the following photos.
He seemed thrilled to arrive and said he recognized the place, but he also yelled at the staircase to get out the way. So there was that…
We transferred him onto a more comfortable chair, but he demanded that he wanted to go to bed—”the one in the first room down the hallway,” he remembered.
Justine was hiding around the corner on her pre-committed “best behavior,” ready with little plastic cups of water should her daddy ask for one.
Soon, Vernon’s closest friends began to arrive, and he opted to move back into a chair to visit with them.
They talked and joked around about soccer and music. He was of course, especially interested in connecting with Maki, who lately is comfortable playing guitar around us. Lucky us! 🙂
(Coffee cup, not his—don’t worry. He’s not growing up that fast!)
The odd-couple.
When it was time to eat, Joe of course was a perfect gentleman, but Vernon wanted to dig in. His eyes widened with each dish placed on the table. (Thank you, Mom, for your generous, delicious work in the kitchen.) But of course he couldn’t actually have much. I offered him mashed potatoes with gravy, but he was really interested in the turkey—and the sausage, which wasn’t there.
He did say grace over the meal and told everyone that he was grateful for me,who was “not only good-looking and pretty (his words) but had an open heart toward him.” I do love the way he expresses his love for me, even if he isn’t exactly the same as before. I appreciate every way he tells me he loves me, and it makes me love him more.
Vernon was very demanding and frustrated throughout the dinner. It broke my heart as I knew he was desperate to be there and he was trying his best. But I twas a lot of work to get him through the meal. He requires so much help…and he had been overstimulated for quite some time now. Afterward, Vernon complained about his stomach tube, trying to pull it out, asking for scissors or a knife to cut it off as it was so painful. I figured that was a cue for “time to leave.” Poor Joe never got his desert, but he said Vernon lasted longer than he’d expected. Later that night, I got a call from the care home that Vernon’s tube was indeed clogged and also that he’d lost 2.5 pounds this week a lone (which was more than an alarming 2% of his body weight.) I wondered if he hadn’t been stressed about the big day ahead…in a good, but nervous way. The doctor disagrees.
As I said before, I think it was a success but I don’t think we’ll be rushing to do this regularly. It was a lot of work. But now we have overcome the challenge of the first-time, maybe we can try shorter outings just to get him used to more of life outside the care home. I’m not sure what that means yet. I know it will get easier with practice for all of us.
I think the heartbreak of it all for me is that I clearly realize how un-ready we are to bring Vernon home, and how un-ready he is. But I also see how much he wants to be here. So yes, bittersweet. But a great day was had…and overcome.
PS. Here is the post-it-note wisdom on the dashboard of the rented van. Words to live by? I think yes.
I’m just sitting down to recollect my thoughts over yesterday’s Big Event, not that I haven’t been thinking about it constantly ever since. It was just that…as Big Event Click HERE for my dad’s experience of the day.
I’ll follow up with my version later, but I thought it might be interesting to hear another side of the story.
It’s Thanksgiving! Well, it is tomorrow, but from the traffic and the shopping lines, you’d think it was all week. And it a way, it is. The nursing home has been filled with new (to me) faces: grandchildren and nieces and nephews who have come into town for the holiday are coming in for visits to their elderly loved ones. It’s quite touching, actually…but it makes me wish we had more special holidays all year long, just so these sweet people could get their favorite people coming to see them more often.
Growing up, Thanksgiving wasn’t a terribly significant event. It was Christmas that we kids lived for…which was chock-full of sentimental traditions and PRESENTS. But my mom’s family was faithful about celebrating Turkey Day together. We’d meet up in Laguna Beach and for a pot-luck on a picnic table. I remember there being lots of adult-foods like pâté and tomato bisque. (This was the 70’s, before kids were raised to like those kinds of things.) I think one year the kids were treated by something special like a big tub of Kentucky Fried Chicken, but for me it was never about the feast. It was about seeing the cousins from that side of the family and exploring on the rocks and the sand below. (This was the 70s, before kids were told to be fearful of those things, unless an adult was watching.)
As I grew older, it seemed we spent a lot of Thanksgivings abroad or in a new town with new people, and we lost our attachment to the semblance of tradition that even those beach picnics had brought. Don’t get me wrong; I’ve had plenty of fine Thanksgiving feasts at other’s homes over the years. My aunt Sue, who has a wonderful hospitality ministry (and blog) of her own throws a big feast nearly every year and invites everyone she meets. So it’s in the family somewhere! But I’ve never prepared or cooked a turkey in my 44 years and I am hoping I can get through the next 44 without ever touching a naked bird once.
But this year…this year, I get it. We are having special people come home for Thanksgiving, and I feel like we should roll out the red carpet, as if Joe and Vernon are wounded warriors coming home from some war they fight every day. We only get them for a handful of hours, but it’s a BIG DEAL. We have been making arrangements for this handful of hours for a month, at least. I haven’t recorded all the details of the planning, because some of them are too personal (ie biological) to share. But here and there, I’ve been transferring Vernon from chair to bed by myself, watching tutorials on how to attach a wheelchair to a van, getting doctor’s and nurse’s approval, making sure the kids are prepared, asking my parent’s for endless favors, finding the van to rent for the day. And that’s just on my end. I think Joe and Vernon are looking forward to their outing more than everyone else. I wasn’t even sure we would make it to tomorrow, what with Vernon’s up and down reactions to surgeries over the past month. There has been a lot of planning and hoping to get us to tomorrow, and now we are almost there!
I sat down this afternoon, in the middle of tidying my house (at long last) and realized I’d been feeling strung-out all day. I guess that’s how I deal with things that scare me. I don’t have the energy to spend a week or two being afraid of things, so I just commit my calendar and then deal with the fear the day before or the morning of. It can come on in a surprising intensity if do it that way: waiting till the last minute to realize what you’ve got yourself into. (I give myself 24 hours to work it out, if I have to. But at least, this way, I’m too far in to change my mind no matter how nervous I get.)
I’m not really afraid of how the day itself will go. It’s just the fact that tomorrow will be the first time that I’m in charge of Vernon’s safety (and Joe’s as well) since the journey began. This is an even bigger deal than prepping a turkey from scratch, I think. And it’s another thing I’ve never done. I imagine Joe and Vernon rolling around on their chairs in the back of the van all the way down PCH, falling left or right depending on the lane I change into.I told Vernon earlier today to promise that no matter what, he wouldn’t let me kill him accidentally. I promised me he wouldn’t.
So here we are. A year and a half in…and Vernon’s coming home tomorrow (for the day.) It will be the first time in a year and a half. Suddenly a year and a half seems doable. Maybe we can do another year and a half if we have to. Maybe when the two year mark comes, we will know we can do another two if we have to. And then on, and then on, and then on…
So this Thanksgiving means more than just being thankful for what we have. It’s a marker for getting through this last long season. Maybe we will celebrate again next year together and laugh at how naive we were then. But we will celebrate, regardless, somehow. Thanksgiving is a beautiful tradition because as far as I know, the country has collectively been celebrating it every year since that first historic meal 394 years ago. And in my memory of the story, it was a bunch of survivors saying: “Thank God we made it through the hard year and we are still standing, if barely. Here’s to making it through another! No matter what, we’re in it together. Let’s celebrate.”
It just so happens I have been going through the photo library on this very blog site, hoping to update the cover page with some pictures of Vernon’s recovery year-and-a-half-so-far. In the spirit of gratitude and remembrance, I’ll post some of my favorites here before deciding which ones I like best.
Happy Thanksgiving, everyone! I am grateful for your friendship and support beyond words. Enjoy your families and/or memories. Most of us are still standing, after all. I send extra love to those who are missing their loved ones at this time. I’m still thankful for you, and I’m glad you are with us.
.
Some old ones I found of Vernon and the kids—pre-accident, obviously.
Mission Hospital
Kindred Rehab Hospital, Brea
Newport Subacute
Some of the many hospitals between….
Mesa Verde
I wish I could say it was a straightforward journey. But then Vernon has always been a lateral thinking guy…guess his family is now, too.
Regardless, we are thankful. Look how far he has come!
I just watched I’ll Be Me tonight on Netflix. The film documents Glen Campbell’s farewell tour after being diagnosed with Alzheimer’s disease. He carries on with his big happy personality and is mostly able to perform his music to large loving audiences, despite the degeneration of his memory. It’s remarkable and affirming to see how doing the thing he loves most (playing music and performing) keeps him ‘himself’ much longer than the doctors estimated he would. But it is also sad to know that his beloved family members are watching the man they love disappear before their eyes even as they tour with him. Of course, anytime there is a wife in a story like this, I pay close attention to see how she copes with her challenges. (Of course, everyone does it differently, which is exactly the best they are able.) Regardless, she shone brightly.
(Glen Campbell’s music made up a big part of Vernon’s childhood soundtrack, as his parents were fans and played his records in their 1970s living-room, along with the Carpenters and John Denver.)
I felt for this beautifully vulnerable family, knowing they are aware of what lies ahead: perhaps years and years of his not remembering their history, let alone being able to recognize them.
And I realized at this point in our own story, though we don’t know the path that lies ahead for Vernon. we are on the opposite side of the spectrum. In the last week alone, I would say Vernon has been very stable—not only is he less agitated in general, but I’ve noticed he is beginning to remember things more.
He still forgets my name, for example, and will try a list of names he has on his tongue. “Vanessa…Valentine…, etc.”
If I tell him it starts with an “A,” he finds it immediately. So we are getting closer to some consistency here.
Vernon calls Joe “Lee” for some reason we don’t know. This morning he kept telling me that Lee had to go to a meeting. Sure enough, when I visited the care home later in the day, I found Joe was on his way to facilitate some important resident’s meeting. (“These people. They complain about the wrong things,” he told me afterward.)
Besides his memory, the thing I’ve noticed most about Vernon’s mental recovery lately is his impatience. And his focus on the thing he wants. If I am trying to conduct business on my phone while I’m with him, he gets very frustrated. “Why are you ignoring me?!”
You know who he reminds me of the most right now? JUSTINE. She is forever thirsty for my attention, and I think she dreams all night long about new ways to get it. She is relentless. A chip off the old block, apparently!
So I see now, if this improvement continues with Vernon, my five-year old has actually been preparing me for a time such as this. (I know mothers of multiple young ones go through this every day…and have since human beginnings.)
No—I have no room to complain, not really. I am blessed indeed. This is just another adjustment. Sometimes the stronger one gets, the more difficult it is for their carers. And I’m thankful to believe we are moving TOWARD memory and independence again, while every day people watch their loved ones drift away from it.. I don’t know how long it will last but I appreciate the difficulties as they come. I just ask they come in a rhythm we can handle—or that we CAN’T. (Its not like this has made a little bit of difference so far…)
Here’s a little video of Glen Campbell’s last song, with loving thoughts toward his family and everyone else that goes through losing a loved one (as they know him or her) to neurological unravelling. I recognize already that this is likely going to be a part of Vernon’s future as well. But for now, we celebrate the ability to embrace what we have.
Today is November 23rd…and its about to pass like any other day.
My friend Jen came over a little while ago to help me with some fundraiser stuff. She is my go-to graphic designer, but also a rock of a friend who has been with us for many years. She shared an office with Vernon, after all…so she was deeply affected by his removal from life-as-we-knew-it. I suddenly remembered in the middle of our meeting that we should at least open a bottle of wine to celebrate the passage of this day. It’s the 18 month anniversary since the accident. I’m a big fan of the unbirthday, and a half year of anything has got to be marked.
What happens at 18 months? Well, the plan is still on for him to come visit on Thanksgiving. I’m mentally preparing for a whole new adventure of the wheelchair van. Eep! Its the first time his safety has been in my hands…but I’m trying not to be afraid and instead just feel excited!
After a phone call to the care home today, I was assured that yesterday’s news from the new ‘social worker’ was nothing to be worried over. Even the administrator didn’t know she was there, and the home had been receiving all sorts of complaints from family members after the weekend. So that was weird. But good now, I guess?
Anyway, thank you for sticking with our story for a whole year and a half. For all I know, one day we’ll look back and say these were merely the early days…
Here’s to another 18 months! If I know one thing is that I DON’T know where we will be then.
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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