While bagging my groceries, the Trader Joe’s cashier revealed she’d been a young widow for four years and was often challenged with how to get the kids to all their activities. I told her that though I’m not a widow, my husband’s injuries have put us in a similar bind. “How are the kids recovering from the loss,” I asked.
Then she said: “You just have to filter your emotions in front of them.”
I wanted to write it down so I don’t forget. Those words stayed with me the whole drive home. I don’t know exactly what she meant, or where she was personally coming from, but the words seemed right and true. I’m thinking of them today as I start to share Justine’s point of view. The advice works both ways. They kids should be able to filter their emotions too.
I’m hoping that more frequent use of the mat will help Vernon get out some of his pent-up energy so he’ll be able to sit longer at dialysis. The problem is, Mesa Verde and the dialysis center, though both in Costa Mesa, are two separate trips. Maybe next year, when Justine has a longer school day like Maki, I’ll be able to do both in one go. But for now, this means she has to come with me on an extra Tuesday afternoon. Don’t feel too bad for her—she gets to go to fun swimming lessons and have play dates the other afternoons…but she doesn’t like “going too much.”
I know it helps me to write out the thoughts I’m confused over, so I suggested she could write her own post. I only dictated what she told me.
Justine’s Post
I love visiting Dad, but I feel like its too much for me. Dad has been in the nursing home for a long, long time, and I’ve visited him for a long, long time.
I feel like I go there too much and I don’t like to go to there too much. It’s not nice for me, even though I love to visit him.
What don’t you like:
It’s not fun just at a nursing home…there is nothing fun to do there. Because the parents and the grownups think its more fun than children…like me. I just wish it could be more fun at a nursing home for kids.
What do you like:
I like that its fun for children that get to visit their friends or family, because its fun to see them…even when you are children.
Basically, she likes seeing her dad but she hates going to the nursing home. And there you have it…out of the mouth of a babe. She also took some pictures of Vernon and me.
I got some of them too.
Also, it was a two-bird visit yesterday. I finally figured out that I could sign up Joe to know all the medical comings and goings. Now if Vernon goes to the hospital, Joe can know where he is or even when he’s returning, which will give him greater peace of mind.
Here is a painting Vernon made a month or so back. I couldn’t remember if I’d shared it before, but it fits the following poem pretty well, so it’s making an appearance here tonight. What a bird, what a character—drawn purely from subconscious, a brief suggestion, and the motion of his hand. It fascinates me so.
Though the past couple of days with Vernon have been pleasant, something I recently saw disturbed and stayed with me. My friend Nicole joined me from LA on Friday. She’s comfortable around Vernon as she’s visited many times. He was begging for water as usual, but we knew we couldn’t give it to him as his coughing/choking has become worse nor can he sit upright in the dialysis chair. We hesitantly asked for a small cup of water, but we weren’t sure how to administer it. I remembered there was an empty medicine dropper in his bag, so Nicole fed him water, drop by drop. It broke my heart to see him so desperately reaching his mouth for refreshment that never really came. A drop of water isn’t the same as a gulp.
Here’s my rough poem, trying to spit out what I saw and have been carrying with me ever since…
Trapped on his back,
he kicks the blanket off with birdlike legs,
knocked knees and brittle bones,
so thin and stiffly bent,
not meant for walking
running, hiking, biking,
or climbing up and down trees
(though those ghosts of the open road past come upon them
as they swing and twist, around and around.)
And the ground is so far below.
This nest isn’t soft.
A bed of needles and tubes
hard plastic loungers
that he tries to throw himself from
that he keeps sliding, falling out of,
hoping to reach the floor,
as his bird-legs claw out for a limb, scratching his way to some kind of escape.
He opens his mouth,
crying out for a drink.
Someone brings a dropper,
tipped in a dixie cup
a drop on an ocean of thirst.
Again, he looks like a frail little bird,
with beak wide open:
Feed me. Feed me. More. More.
A drop, it’s nothing. Not enough to swallow. And the ground is so far below.
Sundays are especially challenging. So I’m choosing to think of them as important, rather than hard. This is the day of the week that Vernon and the kids can see each other, and its one of the rare days he isn’t in dialysis, so we just hang out in the sunshine. We’ve been busy doing other things as the spring has opened up, and I hadn’t taken the kids with me for a few weeks. It’s only really hard because the kids don’t necessarily want to be there. They get bored easily and don’t want to stay long. They also have both become guarded (each in different ways) about their dad: they don’t want to see him at his worst and they don’t know what they will get. I totally expected this behavior and they rarely complain about going, but before we even arrive, Maki is making his escape plan: “When do you think we’ll be home today?”
But Sundays are important. This is when I can get Vernon out in the sun. The better he’s feeling, the longer he should stay up an out of bed…especially when it is so nice outside. Also, I’m intentionally trying to get him to lay on the PEMF mat more, hoping to alleviate some of his pent energy and physical agitation. So the kids are having to entertain themselves because when I’m looking after Vernon, I can’t look after any once else. It’s not ideal. But its important. And its important that they are a part of it, though they might not prefer it. Eventually/afterward, they’ll be glad they did…and Vernon is certainly glad to see them. I think it reminds him he still has his family, which is where his personal treasure lies. It also reminds the staff that Vernon is actually a young man, though he can seem like a senile geriatric the rest of the time.
Thankfully, he was in a good place when we arrived. He and Joe were up watching TV in the multipurpose room. I’m always happy to see him out of bed. It’s very rare.
Maki took Justine aside with a pack of UNO cards from the game cart. I admire and am grateful for his big-brothering. Vernon wanted to paint. He was on a roll, one after the other. He must have painted for an hour and a half straight, my choosing a different color for him every time he emptied the brush. For the most part, I didn’t know what he was painting or where he got his ideas, but he was in the flow. He didn’t want to stop. But what I noticed most was that over time, he became more relaxed. Of course he demanded water, even trying to drink the colored paint water at one point, but over time. The activity became the therapy, not just for his mind, but his body.
He started by drawing Justine. And then…
Though Maki was ready to leave when the painting was finished, he helped me out by playing music for Vernon while he lay on the mat. I was finally able to tend to give Justine some attention and clean up our mess. I hope through this, he is learning that playing music, even at his early level, is a powerful thing to give away. He can see how much it relaxes and uplifts his dad. He’s seen other musicians do the same thing in the past, but hasn’t felt up to par to bust out the guitar in front of them. We’ve had many friends that are musicians who have been too uncomfortable to play for Vernon. Though they’ve said they want to, they’ve never come. I can understand why: who wants to look at mortality and sickness that close up if you don’t have to? But Maki has an in. He doesn’t have a choice to but overcome his discomfort, and the guitar is a tool that can help him…as it also helps the listener. There is power in his hands…and he is learning to use it for good.
Vernon’s water obsession has returned. This isn’t brand new, its been building for awhile. I did call the doctor about it today though, so hopefully there will be some sort of solution, even if it’s short-term. When I offered him the usual piece of chocolate to cover up the taste of his medicinal oil, he still insisted he preferred water. Nothing brand new here, either. Since we were at Mesa Verde, instead of dialysis, I was able to fetch him a cup of ice chips, something they seem to approve of. If I’ve not mentioned it yet, his speech therapy was discontinued about two weeks ago as he wasn’t able to be revived fully in time for pre-dialysis sessions, nor was he retaining enough of the activity memory to make the sessions worthwhile. (His therapy benefits/hours are limited, so it seemed best not to squander them—in the words of the therapist.)
He has now decided that he must not be given water because he is ‘in prison.’ This is slightly more dramatic than the ‘school for naughties’ that just the other day he was convinced he’d been put in. He does try to make sense of things, and surely at times this is what he feels like. But he still shows his survival smarts. He took the cup of ice chips and stirred it with the green watercolor stick he’d been given to make artwork until the ice had slightly melted. He was making water! Who care’s if its green, right?
Of course he choked badly even on that little drop. Days like these, he’s so agitated and angry that he can’t be guided, and giving him a little ice is just as dangerous as a full cup of water. It’s heartbreaking, but that little freedom, that little rebellion, seems to provide more comfort to him than my visiting presence does.
Vernon did agree to do a little artwork, regardless. I’d brought him a new medium, watercolor sticks (a glorified colored pencil.) He took to them pretty well, once he got himself in the mood. Here is a peek (complete with coughing and other background banter.)
The following was even more interesting as Vernon started with a fish in it’s environment and then added ‘our home.’ My therapist will have a lot to say on this one, I’m sure. (She’s suggested I ask Vernon to draw a house…so now I’m extra fascinated.) It looks more like a shark to me, but what do I know what was going through his head. That’s art for you!
Today’s post doesn’t feel very fresh, this is all so much what we’ve seen before. I suppose that is the nature of this kind of condition…it goes on and on in ever decreasing/increasing cycles. That’s why I like involving artwork. At least the output will be new.
He made one new (to me) statement that I thought was worth sharing. When it was time to leave, and I had to put Vernon back to bed (if only temporarily) I told him he could just take a little rest, he said: “It’s not resting. It’s being left alone. And that’s against the law.”
Well, its not illegal. But I get his point.
Hopefully the doctor and nurses will help him get on top of his thirst. Like with everything, its little steps. Little shuffling steps.
One can get a little nonchalant by medical stuff after awhile. Even to the point of not even noticing things happening. I guess this is the result of trying to ‘pace myself.’ Hmmm….
Today, Vernon was pretty good. He didn’t squirm too much at first. And he recognized me by name when I arrived at his dialysis station. “Hi Ali!” He may have smiled behind his paper mask. Then to the attendants: “That’s my girlfriend and I love her.”
After that, he forgot my name again, and when asked, would start a list of hopefuls: “Julie? Juice?”
He sat pretty still as we chatted off and on for a bit. Then I noticed his g- tube was missing. It was the strangest thing: I was with him the whole time, but I hadn’t noticed him pulling it out. He must have just yanked it when I was reading to him or something. He didn’t seem bothered, nor did he remember it coming out. (He’s pulled it out many times before, but I always assumed it was intentional because it irritated him.)
I knew he’d have to be sent back to the ER to have a new one placed, so I went to phone Mesa Verde for further instructions. “Should I have the pick-up ambulance drivers change their route and take him straight to Hoag?”
But as I went to dial, I saw a missed call and voice mail from the care home from 1.30am last night. I had totally missed it (thankfully.) The message informed me that Vernon had been sent to ER just LAST NIGHT because his g-tube had to be replaced. This was a brand new tube! Another thing I’d missed.
I noticed numbers on his crisp white wristband: Hoag Hospital Newport, April 12, 2016. So this would be his second visit in 12 hours, that has to be a record…for him, anyway.
And that was it. They took him off to get fixed up. I know for sure this is one procedure nobody needs me around for, so I went home.
I got a call from Mesa Verde about 5;00, saying he’d returned, and that whilst at the ER, he had fallen out of the bed. There was no broken skin, I was assured. I guess if you are going to fall some distance, best to do it in the ER. I did momentarily second guess my nonchalance about attending every ER visit with him. Perhaps he does need someone there with him each time.
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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