Something about ending last night with the reintroduced possibility of Ativan must have triggered a nagging thought in my head all day. I realized that though the mere mention of the drug causes me to react in a beady sweat, the doctor might have been responding to a complaint earlier in the week. It doesn’t mean there is a problem right now, even though I receive a phone call about it. There are a lot of delays within healthcare, all the little steps of paperwork and its changing hands. I’m so glad I didn’t agree to it, though I felt the pressure on the phone. (The nurse did not pressure me, in fact she assured me that I didn’t have to agree with the doctor, but I felt the pressure of the nurses who have to deal with him when he acts up.)
What was nagging at me was the deeper realization of a major truth that has been the problem all along, but never gets dealt with: Vernon is in a skilled nursing home, which is excellent with supporting his functional needs, but no one there, not even the doctor, is expected to know a thing about brain injury recovery. To their credit, even the neurosurgeons I’ve met don’t seem to know much about it. But this is NOT a recovery home. Or a rehab hospital. This is a skilled nursing facility, where basically, he is kept alive and semi-comfortable—and to be completely honest, the whole setup really in place to help the family more than the patient. I’m just a couple of medical pages and some signatures away from being a full-time, live-in caregiver.
You must understand: I’m not complaining. I think Mesa Verde is a very good care home, and I have no current desire to move him and take our chances elsewhere. But last night, when the nurse told me she’d ordered a psych evaluation for Vernon, I just rolled my eyes. I believe Vernon is in there (and in some ways, he’s showing his deeper self more than ever) but I think he’s being treated as a ‘typical’ long-term patient of such a place would be treated when certain issues come up. I think in this case, a ‘typical’ patient would be an elderly person with dementia and fall-risk (ie: the threat of physical breakdown.)
Vernon is a ‘fall risk’…it says so on his armband. We go to dialysis five times a week with him because of his risk of falling. He rests in a geri-chair lounger or (most of the time) in bed because he can’t be risked in a wheel chair When a patient in a nursing home falls, he has to be sent to the hospital to make sure that nothing is broken. A big to-do is made: the fire department shows up, papers are signed, family members are called, bills are sent out, and everyone becomes even more protective over the patient. This makes a lot of sense when someone is elderly, their bodies already broken down with time and likely to deteriorate more rapidly. Though I think the process has aged Vernon’s body, I don’t think a fall is going to kill him or really even set him back much. And yet this is where the big energy goes in a place like this.
My point is this: though this is our best option under our circumstances, is not where a young person with Vernon’s serious brain injury belongs. We are on what is known as medi-medi, in health billing circles. Normally, except for the corner of renal failure (kidney breakdown) this is reserved for Americans 65 years of age or older.
I don’t have any real reason for sharing all this except to get it off my chest. I have no idea how many people read this blog regularly, but I guess I’m ‘putting it out there’ that someone might have a suggestion of a specialist (that I could ask the doctor to recommend) or anything really? I just feel like there is a Square One reality that we keep ignoring. This may be the best that we can do. I’ve been told that it is. But what if there is more? There MUST be more. Connected people, can you help? Praying people, can you?
All that said, Sandra, Vernon’s regular RNA who has been working him out on Tuesdays and Wednesdays for fifteen minutes in the gym, already seems to be brightened by Vernon’s improvements. Remember yesterday’s straighter leg?
Though Vernon wasn’t at his best today, I’ve seen worse. Here are the highlights:
I brought Vernon a present: new shoes! If anyone deserves them, right? The other day, at dialysis, he pointed out the feet of a(n elderly) patient a few chairs down the row. “I’d like shoes like that!” he said. “I used to have some like that.” He was right. Whatever Vernon asks for (that I can possibly deliver) he’ll surely get.
He wasn’t in much the mood to paint. But he still hashed a couple out. That’s discipline.
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I am praying—and I love the shoes, and the painting.
thanks, Annie. Funny thing…both kids got new Chucks, for different reasons, about the same time. We are connected through feet among other things.
I will pray Allison for clear direction, solid answers and a sense of peace.
“I will bless the LORD who has counseled me; Indeed, my mind instructs me in the night. I have set the LORD continually before me; Because He is at my right hand, I will not be shaken.”
Psalm 16:7-8
You are courageous Allison. Don’t give up.
Love you….
ooh good one. I should write it on the wall by me bedside.
I will keep praying. More specifically. Interesting that it seems his art is improving. Also his eyes are much clearer. Little bits, but it is encouraging.
thank you for noticing. these things take time, I guess.
I am reading as always and sorry I have no ideas how to get Vernon some good rehabilitation. It seems to me- sorry to repeat this- that the training he needs is similar to the one stroke patients get. Maybe there are places or programs for young stroke patients- that he could use? If there isn’t any for TBI? But you know the gradual recovery will mean that he will be more and more suited for other training. He is so young! Thinking of you x
Can’t be of any help i’m afraid but think of you all the time and ALWAYS read your updates.
I read your blog. I have no answers to the medical care conundrum but follow your heart…stand your ground. May the moon and stars point their healing light on Vernon.
I think you’re 100% spot on – he needs the kind of rehabilitation care suited to a younger person, rather than just maintenance care which is typically the focus for an elderly person at the end of their life. Not sure what to suggest, but praying that there will be some leads…there must be something.
The progress in his paintings is truly amazing. I’m also excited to see the improvements in how he’s holding his ankle/ leg!
“I just feel like there is a Square One reality that we keep ignoring. This may be the best that we can do. I’ve been told that it is. But what if there is more? There MUST be more. Connected people, can you help? Praying people, can you?”
Allison, there is more and the Lord will guide you! ‘Square One reality’ has been called out. We will all press in hard to the best of our abilities, connections and prayers. We are with you and best of all He is with you.
Love you deeply. Shalom
Thank you, Jeanne. He can’t be the only person in all of southern California that has been put in this predicament. There must be other people who know things.
Allison,
Is Atlanta, GA to far to come for help? I know it would be expensive but there is a hospital/rehab place there that might help him.
I can see in his paintings that he is improving. I like his new shoes also.
Becky
I believe he would have to stay in California. He can’t really travel, for one thing, due to his kidney problems.
I anticipate and read every post. I’m not much of a practical help but I do pray. And your journaling informs my prayers. And reading it comforts me in knowing that you are not alone.
Also, I love your writing and literary quotes.
I oversaw my mother’s care for her final years. In and out of Rehab and skilled nursing facilities.
So you have my admiration, Big Time. Love, Janet
Allison, we read your post. You have our hearts. When you said “I do” to those words that included “for better, or worse” you meant it. Of course you could have no idea what worse meant. But you are a beacon for the word faithful. Vernon has a worthy advocate in you.
I wish we knew someone in the traumatic brain injury field. We keep our antenna up. We also pray, we hope, and we love you, Vernon, Maki, and Justine.
Your gift of communication is helping you sort through this all. I can see the benefits of talking out a situation. And your vulnerable transparency is one of the bravest things I ever seen, anywhere.
Allison, I have had the very same thoughts
as yours, even wondering if there isn’t some
place outside of CA, that he could get help
…….that would be a huge stretch, I know!!
I am so glad he is getting to use the bike! I
really believe he could do more and more with
the correct therapy….
Yes, I will continually pray!!!!….I hear your voice & heart here, “Is there more?” “THERE MUST BE MORE”….So I beseech God with…….Is there more????” Come Holy Spirit!……give insight & direction!
Allison i have read your post and all the comments above ..i have to say i agree with every ones thoughts and your own..Vern needs “care” that will help him improve and geared towards the needs of a younger man with children …Vern has always been a “busy” person ..and he still needs to be busy ..no wonder he is getting frustrated ..who wouldn`t ??
xx love to you all xx
ps did the package arrive for Vern???
Dear Allison,
I read your posts every day. I don’t have anything to offer but concern and love and prayers. And I do pray for you every time I read a post. Today I was praying that you and your family would stay strong in your faith and know that the Lord is with you regardless of the circumstances around you. Someday this will all be over and Vernon will be fully alive and awake and walking and talking with you and probably dancing with you – ha! And your joy will be great in the Lord and what He has done. Until that day we are here, caring, loving and aching for you as you travel this long road. May God bless you with his guidance and provision and peace.
As I read this entry, I was thinking of a woman who spoke at a meeting I was at yesterday. It sounds like she works with people in similar situations. She has a Neurobehavior practice that specializes in brain injuries. Unfortunately, she’s in Bozeman, Montana. But maybe she could help connect you with someone similar nearer you? Cathy Fisher is the woman who spoke; here is a link to her website: http://neurorehab.publishpath.com (The testimonials might be encouraging to you.)
Cottage Hospital in Santa Barbara has a recovery center and they deal with brain injury patients. They may have an affiliate or recommend someone similar in your area.
I’m so happy you just put this ‘out there.’ Something will come of it, surely. This is not my area of expertise in any way, but have you explored reaching out to researchers and specialist physicians who would like to work with him? Have you talked with Affinity Treatment Center for advice? (In Vista, CA) Additionally, I keep thinking about Vernon often and nutrition continues to pop into those thoughts. Is he receiving the supplements and nutrition his body will need to repair the damage to the nervous system? And finally — kind of out in left field, this: http://tibetanacademy.org — This man seems to do miracles. He’s stopped a friend’s breast cancer twice, and her son who has been in a wheelchair (quad) 30 years now due to an injury has had no deterioration of his body and Drs. are shocked. He follows The tibetan physicians nutrition regimen. (Which, of course, would be a challenge for Vernon, but who knows? Thought I’d throw this out there.
Yes, I do read your blogs regularly…….thanks for being honest in your evaluations and frustrations……I’m sure I’m not the only one praying faithfully and regularly….and I’m sure the Lord is giving you insight……don’t be afraid to voice it to the right people (and to us!).
The Lord is using you so much more than you can imagine in all of us who are seeing what God is doing in and through you.