On Friday Justine and I met up with Vernon and his two EMTs at Dr. Leiber’s office in Irvine for Vernon’s arm checkup. I didn’t have a babysitter today, but I thought it would be pretty short session so that would be fine—it might even cheer him up a little.
While waiting for an elevator in the lobby, I held her up so they could see each other. He kept saying: “She’s so sweet. She’s so sweet.” I noticed the female EMT got a little teary in her eyes and looked away. They all know him because he takes so many trips weekly and I’ve gotten to know some of them too, just slightly.) I suddenly felt emotional also, and I avoided looking at her very closely the rest of the time, sure that if we connected, we’d both start crying. To see someone well up when she was watching our familial situation reminds me of how sad it is. But I can’t think that very often or I’d give up…anyway, most of the time, I don’t think about it being sad…we just have to get on with it, it’s our normal now.
The plan was for Vernon to have his sutures removed on his arm and hip as well as having x-rays of the arm. Dr. Leiber decided it was pointless to try to cast him up again as he’d likely get out of it and possibly harm his arm even more in the struggle. I’m more relaxed about the idea than I was a couple of weeks ago as obviously, there is nothing I can do to protect his arm if he’s non-compliant anyway. It’s not like there are any more options we haven’t tried. He seemed up for it, a little confused today though. I had to remind him over and over that he’d had a surgery on his arm. He got quite angry about the cast story, denying it all, and then telling us that his doctors in England had disapproved the cast and it had come off on it’s own—he claimed no responsibility. His confusion would be funny (and at times it IS) except that when it came time to remove the sticky bandage over his hip, he writhed in pain, lashing out at the nurse who was trying to do it. He suddenly didn’t trust anyone there, especially the nurse.
“I don’t like her!” he yelled.
The poor young nurse was doing her best to calm him down and get the job done. I told her not to take it personally.
“Don’t take it personally,” he agreed, looking at her. “Its just that you seem like someone who doesn’t knows what she is doing.”
Another admission he made to the growing group around him, trying to hold him down so he wouldn’t get hurt or hurt another: “I don’t like that you think I’m stupid.” That hits the nail on the head, I believe, and is where much of his paranoia comes from. He doesn’t want to seem clueless or be treated like an imbecile. It’s a recurring theme. He also picks up on something he doesn’t like or trust about someone and it can take awhile to reassure him that that person is safe an qualified.
Anyway, it took a very dramatic half hour to get the bandage off alone. I’d taken Justine out of the room. She would have been happy to play games on my phone in the hallway, but eventually, I left her with Dr. Leiber’s assistant in the office. Shannon and I have talked many times over the phone in the planning of surgery and post-op appointments so I felt I had a friend in her and could ask for this favor. I went back in and held his hand, as he wouldn’t let anyone else hold him down. The sutures were all eventually taken out. The whole thing took over an hour. Afterward, he kissed my hand and said: “Thank you for holding my hand. That was awful. You saved my life!”
At this point, I happened to look over at the tender EMT again and saw her eyes welling up again. Of course that made mine a little wet too and I avoided her face completely after that. Still, its nice to see the sensitivity of his carers sometimes. I already liked this girl, from our previous interactions, but now I know that she feels for him, I trust her even more.
Vernon’s x-rays showed that his arm is in the process of healing, but he was sent home with just a bit of tape on his scar. I hope he manages to keep THAT on. If not, it’s out of my hands anyway. We’ve done our best. I asked Dr. Leiber about physical therapy for the arm. He said, “Non compliant people tend to give themselves their own therapy just by moving around a lot.”
.
I made it up to Justine by taking her to a movie afterward. We saw the Secret Life of Pets. Often during the film, I leaned over to kiss and hug her. She was so well behaved today. Also, at the moment, she is my only person at home and summer is just for a few more weeks. I want to slow down time and enjoy her in this season. On days like today (with Vernon) it feels like we are going backward again and it can really affect my mood for awhile. I am working on this, because life does go on regardless of pain and frustration. And I don’t want to miss the wonderful parts because the bad parts put me in a tail spin. On some days, I just feel burnt out on Vernon’s situation and I feel so bad for his endless discomfort, but knowing I still have someone to love and take care of at home helps me with this quite a lot. And I remember I am blessed in other ways.
This is the last week that the family who hit Vernon has to legally respond to our letters ( delivered three weeks ago, at long last). They still haven’t. And though I know I told myself many times I didn’t expect anything (and believed it at the time)…yesterday, I recognized an anger inside. I’ve waited a long time, taking as high a road as I know to take, and being this close to the end of this part of the saga, the feelings are definitely ready for an outlet. I could barely focus on my drawing class last night, distracted by this trapped energy of sorts. I can see how people displace latent anger very easily. It’s hard to forgive when people don’t give you space to. (I thought forgiveness would be easier…I think it IS easier when people admit their error and responsibility.)
Today, however, someone took Vernon’s session at dialysis off my hands. (Thank you Sharon!) And Justine and I spend the day together, just doing things like shopping for clothes she can fit into (she’s growing so fast) and then swimming in a friends pool together. Justine is a little fish this summer, swimming in the deep end as well as the shallow. It’s so fun to enjoy it together without her clinging on like years past. I can feel the wonderful difference the water made to my body and peace of mind. And tonight I feel more able to take the high road for a few more days. H20 therapy is GOOD! I’ve been in the pool more this summer than usual and I’d say its a revelation! Water is one of God’s greatest gifts. Use it if you got it! It’s remarkable how much better I feel after submerging and swimming…and playing with my daughter.
PS I believe in strongly in the power of forgiveness. I want it to be a major theme in my life. I also believe forgiveness is a journey you move toward. It doesn’t always happen overnight, even for people of faith, like myself. For me…I move toward it, but understand it may never be a finished thing. I hope it will be though…that hope keeps me going toward it.
My brother Hyatt and his family dropped by for a visit to Vernon on their drive back up to Monterrey yesterday. Vernon was not up to seeing anyone at first…not even me. I worried that by the time we got him outside with everyone, he might start yelling or swearing at the kids, just because. Hyatt and I must have convinced him not to swear (he said he’d try) because though he did grumpily shout out rudely to them a few times, he didn’t actually swear at them (that I noticed.) I felt bad because this is the same family that enjoyed Christmas with him a year and a half ago, and he was so pleasant and engaging then. But the kids seemed to take it in stride.
Here is a cute photo of all of them huddling together in the shade.
But what seemed to calm him down was being asked to sign his last form (I think) for his naturalization application. He used his right hand as his left is still so cumbersome. His signature looked pretty good, actually, though I know he couldn’t see the line to sign on very clearly. He also liked being asked for some logo/typography advice from Hyatt. He loves being asked for his expertise.
He said a few times: “I like Hyatt a lot.” The truth is, it’s very rare that he has visitors who aren’t female. I know Hyatt being there and talking to him like he had something to offer was really nice for him. Maybe he felt he had a buddy again. Sometimes, Vernon asks to be sat in the smoking section outside, not because he’s a smoker, but because that is where the more active (and smoking) patients sit…most of them men, and those who are younger than the rest of the people who live there.
Here is a picture of my lovely sister in law, Nicole. It was so fun hanging out with her and the brood last week.
Though still a little high strung by the end of our visit, Vernon had calmed down enough to enjoy some snuggles from his daughter. Looks like she enjoyed them too.
Here she is trying to show him some video of the play she was in the night before…The Lion King. Theatre doesn’t translate well on an iPhone, but I know he wanted to make sense of it.
The hardest thing about yesterday for me was when he said: “Don’t keep going away. When you go, you are gone for such a long time.” I don’t know if he meant my going away for a few munites to ask the nurses a question or to tend to something right there…or if he meant when I go home after a visit. I have a feeling they are all starting to mix up a little but that he has an increased understanding that I do go away for long periods of time. Maybe it’s best that I don’t know what he’s thinking sometimes.
Lois and Marcia went to sit with Vernon today. I got a text from Lois letting me know Vernon was out of his cast. Yes, the brand new fiberglass cast just put on yesterday. Don’t those things usually have to be CUT off? I have no idea how he did it.
But Lois told me not to worry about infection—good thing too as it looks like there is no way to keep his arm covered. She also sent this photo, with a note she’d found his old “splint” on the floor by his chair.
I asked him over the phone about it. “I squeezed my arm out,” he said. Simples.
When I called the care home later, I was told that the nurse there had tried to wrap Vernon’s arm in the old bandages this morning. It was off before his dialysis session even started. I asked her how he got out of the blue cast. She just said: “Vernon has a lot more time on his hands than the rest of us. The only thing he has to occupy himself with is getting out of that cast.”
Hmmm…interesting. It gave him something to do. Well, I guess the cast proved to be valuable in that way. As long as they’ll be watching closely for infection and open sutures, I won’t worry. After all, there is something to be said for the brain of an escape artist. Vernon reminds me of my favorite animal of all, the Octopus. Another brilliant creature.
Just a quick post tonight. I met Vernon for a check-up on his arm at Newport Orthopedic Institute in Irvine. Dr. Leiber couldn’t be there this morning, so we met with his partner, Dr. Adler. Vernon’s brace and bandages have been off for two days in a row—I only assume he finally managed to twist his own way out of them. And his arm looked awful, still swollen and dark with stitches. But the x-ray showed all to be fine and the doctor said his arm looked like it’s healing as expected. (I’d taken a photo but now I don’t have the heart to show it. It looks pretty ghastly.)
I did ask the doctor if he’d be willing to cast it to keep it safe until next week’s check-up, where they are expected to remove the sutures. He obliged, as long as we promised that Vernon wouldn’t be sticking anything down his cast in order to itch it. I couldn’t imagine him getting ahold of anything long and/or sharp, so I assured him he’d be safe. I’m so glad we have it protected for another week. This is a relief indeed. Vernon picked his own color.
It’s kind of a big deal to switch dialysis centers/doctors. Even though we started the process from the hospital last week, I spent Friday and Monday taking lots of phone calls from various people at the previous center, first wondering why we were leaving, then trying to talk us into staying. We had been there since late autumn 2014, so I guess we had become a fixture—Vernon and his attendant friends and family. But my mind was made up, and I could tell many of them didn’t want to know the real reasons for the change. In the end, the main reason I expressed is that I think the new nephrologist and internist will be able to provide Vernon with more connective care, since they actually know one another. Also, the new center is only four miles from where he lives so his travel will be much easier, and he’ll less likely be late to his sessions.
So yesterday was our big first day at the new center. It’s with a different company as well, so I didn’t know what to expect. Location wise, it’s amazing,right off of PCH—you can see the cars whizzing by through a glass door to the street. And the building/parking-lot backs up to a marina. So at least Vernon might get a nice view for a a minute or two each day.
It’s an older facility, not as slick as what we were used to. It’s a different company as well. But the staff was immediately warm and friendly, with everyone introducing themselves and looking us in the eye. It felt better right away. I asked Vernon what he though. He looked around and smirked: “It’s not really very nice, is it?”
I told him this: “If you had a choice of living in a big new house in the suburbs or an old apartment in a vibrant city, which would you pick?” He said he’d choose the apartment—the old Vernon emerging. “Well, that’s kind of what is happening here, Vernon…the place might not look great, but it’s a better situation.” He seemed to understand.
He was set to do three hours a week (I’d hoped for shorter sessions, but they didn’t add up to enough.) Though he was able to lay pretty still and seemed comfortable for most of the session, I knew within an hour that three hours would be too long, not just for him…but for me and most likely, his sitters. Three hours is a big jump from two. We decided to add another day (Wednesdays at noon) to the three days a week already scheduled.
The nephrologist came in and checked on him. She suggested that the upper arm swelling might actually be caused by a venous blockage—apparently more likely to occur when the dialysis catheter and the shunt in the arm are on the same side of the body. Really? Why couldn’t his previous nephrologist pick up on that? I wonder how many other things we missed out on under his advice. I know there are a few.
But Vernon sat well and seemed comfortable. It was tough but we managed three hours. I took the coast home that beautiful afternoon, even stopping for a coffee and a bit of reading in the sunshine on my way home. (Justine not getting out of rehearsals for her play until 3:00) It’s a little longer drive now, but sometimes a change of driving scenery makes all the difference.
Today (Wednesday) I went again for our new afternoon time. It will be a challenge making this time work, but I’m still grateful for the opportunity to change things up. He did well again today (of course he started asking about going home within the first hour, as usual.) We managed to share the headphones and listen to an entire TED Talk about Brexit together. He seemed to enjoy it till the end, when he started getting tired. So far, so good…
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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