Suddenly the world is shifting. I am aware of things starting to tip, hoping to find re-balance. Vernon puts on a few pounds, Joe loses 8. While I am playing scientist, my daughter, who wanted to be a doctor as well as a scientist, now announces she wants to be an actress. Maki spends his winter in New Zealand while we enjoy our summer here. Things are topsy turvy. That’s good.
I went to see Vernon at dialysis today, as I’m still watching his dosage and withdrawal closely. He was asleep when I got there, but when he woke ten minutes later, his eyes were wide open for the rest of the session. He seems to be increasingly alert, which is exciting. He still lashes out at times, but today I noticed that seemed to happen whenever his blood pressure would drop (something to watch?) I’m still so amazed how quickly his turnaround is happening. Long may it continue…or at least into tomorrow!
So I called the head nurse and the social worker over to bring them up to date. I told them how we had got Vernon off the Ativan and how I thought it was killing him, and isn’t it great how well he is doing now? Maybe in my new fighter mode, I seemed to come in with too much attack. I could be wrong, but I think of myself as a pretty easygoing gal, so when I lean in a little, I just assume its a gentle leaning…of course, that may not be how others perceive me. Somehow this morning, we were defensive with each other. I saw a face start to crumple in doubt when I mentioned the Ativan and I got into a heated conversation about things. I panicked. I guess she did too. I don’t want him to go back to a drug that was so clearly hurting him, and she is afraid of the pending discomfort of the staff and other patients. We both see our own side clearly.
I got more frustrated, trying to tell them I was on the right track and they should trust me. But I felt so disrespected. I realized as they spoke to me, that they thought I was the bad guy: “We’ve bent over backward for you,” they said. “You’ve made so many demands and we’ve met them all!” I know when I’m under passive-aggressive attack. They probably felt the same from me.
Wait a minute. I thought I had bent over backward for them! I have had strangers and friends sit with Vernon to keep him safe and quiet for months, some who are even willing to change a dirty diaper, while the staff focuses hard on their job descriptions. I suppose in their minds, we are the bad guys. We make their jobs a lot harder.
It was if they refused to see the recent positive changes in his health because they were so nervous I was going to let him go crazy in their facility for two hours a day. It was a challenge to get my head around that. Everyone at Vernon’s nursing home has been so encouraging so far. But there are different arenas in health care…that do things for different reasons. Obviously there was a clash of interest here. I feel myself becoming a tiger, but I don’t know how to fight gracefully yet.
I wish I had kept my good news to myself.
Ironically, at the awkward “are we still friends?” end of the conversation, Vernon sat up and pointed emphatically at me.
“You are GOOD.” he stated.
“Thanks, Darling. Good at what?”
“Good at being you.”
His eyes were wide open most of the time I was with him, and he looks a little fuller in the face. He was able to say that he does feel better lately, he seems to realize it. We had much longer conversations than we’ve had for a long time, and I read to him a page from this fantastic book I’ve been reading, The Purpose of Boys. I asked him to remember what it felt like when he was sixteen, then I invited him to answer this set of questions as if he was his sixteen-year old self.
He may have gotten a little confused but he answered completely. I always had a hunch that internally, we never graduate High School. It was nice to be able to reach him there.
I played him some Joy Division, asking him to remember what it felt like when he first bought the album (he may have been 12?) brought it home, waited for the house to become empty, and listened to it for the first time. (I’d heard this endearing story a few times in the past.) What did he think of the music?
“It was spooky.”
What did it make you think of?
“Ghosts.”
“Yikes, do you want me to turn it off then?”
“No, I like it.”
(Almost like a day at the beach.)
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GO YOU ALLISON..you keep being that tiger..you are the best tiger for Vern..you know what is best for him (and you) ..keep doing what you are doing …this whole journey is about getting Vern better …( and in the long run yours and the childrens life better too)… their job is to make that happen..they are their to care ..don`t let them forget that..that is why they chose to be a nurse/doctor etc and not an actor/actress!
love, love the video today ..so lovely to hear you two chat together ..just made my morning … and gives me the fight to be a tiger today when i take Aaron to his hospital oppointment (his last one now he has turned 18..so now i guess “we” are out there on our own now too….)
love to you all ..we are having californian sunshine right now .. although living close the beach ..we still never go down there!!
big ,big hugs , say hi to vern , give a big auntie hug to Justine and ofcause a big “sister” hug to you xx
vanessa xx
Allison,
Fight dear tiger. You are there for Vern and him to get better. So stick with them and Vanessa is right they choose their jobs. I am proud of you for sticking up for you Vern. Makes you wonder what they give to patients who have nobody to look out for them.
Still praying for Vern and you. I imagine what you want for Vernon is to come home and be with you again and sometimes you have to fight like a tiger to get there.
Love,
Becky
You are such a great ally for Vernon and learning to fight like a tiger is not like you but I pray that your roar continues. Getting Vernon off Ativan is the best thing you could of done! Praying that you have wisdom and strength as you move forward.
YES! So proud of you Allison…will continue to pray Gods strength for you and the ultimate healing of Vernon….Love Candy
That is a real “U-Turn” Allison. Thank you for sharing that video. His eyes look so clear, white, healthy, open. It really looks like he is moving in the right direction. Sorry the staff saw it differently, I am sure that was a shock to you. As always, I remain in your corner, cheering for you. Always have been, always will be.
You’re doing the right thing…stick to your guns. You’ve been with Vernon throughout the whole journey to date, so these medics need to respect your knowledge of him, and your insights and observations of what is working and what isn’t.
It’s clear to everyone that you have gone above and beyond in your efforts to support both Vernon and the staff, more than many people would do…they should appreciate that, not try to manipulate you. Fight on, friend! x
Never doubt your heart or instinct. It knows best 🙂
This post made me cry. I’m so happy to see a good trend… And trust yourself Allison. You are tuned into Vernon more than anyone else in the world. Be a tiger if that’s what it takes. A lovely, graceful tiger 😉
Allison…..keep fighting….am praying for the Lord to move in the hearts and minds of the “professionals” who see things as numbers, not people…..the Lord has put you there and strengthened you….just keep it up. (I’m having a mental picture of the muscle strain when we keep “hanging in there.” HE will give you the muscle that you have been developing….it is such an inspiration to us all. (I’m also reminded that there are times we wish we didn’t have to be an inspiration…just live a quiet life….then I’m reminded that COULD be boring!) (^_^)
Never feel bad for feeling good about Vernon’s ‘progress.’ No one–not even the nurses–know what you’re going through, what you’ve been through. They think they know what’s going on with Vernon, but they really don’t. Until they are in his shoes, laying in that bed with meds pumped through them, with helplessness flowing in their veins, they do not know. When doubts come, hold your chin up. YOU ARE ON THE RIGHT TRACK. Stay strong, stand firm.
You are amazing, Ali! It is unfathomable to me that they were suggesting that the Ativan was a way to keep Vernon calm during treatments and thus better for them w/o considering the after-effects of a drug like that for him. They are supposed to be helping him! Not making their jobs easier!!! You are doing everything right. What a wonderful advocate Vernon has in you. You have all of us behind you, supporting you! So impressed….xoxoxo
Dear Allison,
I just recently tuned in to facebook and sansoxygen and began to get a glimpse of your life. I’m in awe of your strength and the love that’s fueling that strength. What an advocate and warrior you are for your man! Even though the nurses are doing their jobs, they did not put in the time, the observation, and the research you did that led you to your decision about the Ativan. Thank god that you are listening to that tiger inside you! Thank you for sharing your journey of Vernon’s recovery.
Love,
Jenny
Thank you so much Jenny. Your name came up yesterday…and here you are! I had wanted to send you a link about art classes for kids (since there won’t be anything for the freshmen at SCHS next year. I’ll send it your way. Thanks for checking in! Maki comes back from New Zealand in a week!