It’s a bad day that starts with the voice on the 6:30 am phone says, “This is the Life Alert operator, is this Andrew?”
I thought about it for a moment and admitted that, yes I was in fact Andrew. The call was to alert me to what might happen – my older brother needed to get to a hospital now as the pain had become unbearable, and the life alert button was the fastest way to get the paramedics to his apartment.
My older brother, “Wild Bill,” has cerebral palsy and for the last fifteen years has been confined to a wheelchair. At one time he was married, drove a car and lived very independently. Independence is a constant theme in his life – that is the struggle to remain independent, live in his own apartment and make his own decisions. However, his medical problems have been slowly eating away at independence and more and more I’ve had to step in.
That call. That Life Alert button are symbols of his loss. It underlines Bill’s failure to tell me sooner of his problem and makes me wonder if we’ll be keeping the appointment with his regular doctor scheduled for next week.
I remember a time when I was nineteen and had bought this old junky car. I kept a tool box in the trunk with a few extra parts. One Saturday afternoon the car’s engine died and I was stuck in a shopping center parking lot miles from home. Walking to a pay phone, the first person I called was Bill and he came out to rescue me. Yes, he could drive back then and had a beat up green station wagon that he and I tried to keep in repair.
On that Saturday, nearly forty years ago, he came to my rescue, with a ride to the parts store, a little cash to help buy a new fuel pump and great sense of humor.
Now, it’s reversal. As the baby brother, I am the care giver, the rescuer, the healthcare agent on the advanced directive and the person Life Alert calls.
“What hospital are they taking him to?”
Flashbacks race into my brain. The day thirty years ago a hospital called saying Wild Bill had been in a minor car accident. The day Bill called after he fell and was bleeding. The day his wife was taken to the hospital.
Memories of times when a younger stronger man would answer the phone and of times when I had the illusion that I could fix things.
Now I sit in the hallway of the county hospital emergency room, waiting for the overworked staff to order tests, get results and find just five minutes to talk to us. We’re near the nurse’s station and I can watch all the activity. A never-ending line of ambulances bring in the victims of accidents, diabetes, heart attacks, alcohol, drugs and life on the street.
A doctor speaks kindly to a handcuffed inmate from the county jail saying, “The methadone clinic can help you. It can give you a second chance.”
Wild Bill stirs in his bed, the morphine they gave him in the ambulance is starting to wear off and he is waking up. An x-ray technician appears and starts asking me questions: “Can he lie still?” “Can he raise this leg?”
Bill tries to answer and his body language tells me he’s annoyed with me as I answer as though he’s not there. His agitation grows as I tell the tech that he’ll jump when they touch him or make a loud noise – it’s the CP and involuntary spasms. As they wheel him away, I tease him with the line he always laughs at, “Dude, remember, I’m here to comfort and support.”
A new patient is parked next to me in the hallway waiting area. The doctor comes by to do an exam and after a few questions turns to a nurse saying, “5150, check when they’ll have a bed available.” The man is given a meal, an aid is sent over to watch him and in due time a hospital police officer arrives, checks the paperwork, and gets a wheel chair. The officer asks the nurse, “Restraints?”
“No, he’s been good.”
Bill returns and the doctor brings the news – x-rays don’t show what is causing the pain in the hip. Now we need a CT scan, and no, he doesn’t know how busy the CT department is today, so it’s back to the waiting game as Bill’s next shot of morphine sends him back to sleep.
And me back to wondering if I still have the strength to wait for the wheels of the hospital to slowly grind on. Our other brother calls again and I still have no news. It doesn’t take long for a page to come over the hospital’s speakers, “Any tech, 1x to CTA.” The doctor smiles at me from the nurse’s station saying, “That’s you.”
It takes 30 minutes and two more pages for the charge nurse to finally find someone to push Bill’s bed to the scanning room. I wait, on a chair that an aide stole for me from the nurse’s station because, “You’re a nice person.”
Watching the other patients flowing in and out, I am convinced that my mere presence is causing the staff to work extra hard for Bill. Few patients have family with them and some patients are greeted by the staff with, “Back again?” Sitting and waiting I notice that there are as many police officers there as there are nurses. Some are unarmed hospital security, there to protect the staff from patients or patient’s families. Some are city cops following up on car accidents or crimes. Some are officers from the county jail transporting inmates.
When Bill comes back from CT, a new wait starts for test results. It’s at this time that I know the ER isn’t going to fix Bill. There will be no cure here. That’s not their job. They are crisis handlers and sorters. They identify, stabilize, categorize, disposition, and disperse elsewhere.
Bill’s lying quietly when the doctor walks up. The news is what I feared, the tests show nothing conclusive. No broken bones, nothing acute that demands immediate admission to the hospital. All they see on the scans is some arthritis and pins, screws and other hardware from his hip replacement eleven years ago. The best explanation is a failing hip replacement coupled with advancing arthritis.
We’re given a script for pain medication and what sympathy an overworked ER doctor has left at the end of a long shift.
So now it begins again – the search for a solution, an adaptation that will take away his pain, but yet leave Bill with independency and some control of his life.
Till next week,
Andrew
Andrew's View of the Week 
Hi Andrew, You capture the “hurry-up-and-wait” experience of the ER in this piece. The presence of law enforcement in the ER is also notable. Our county sheriff recently said that almost all his overtime is paid to LEOs sitting in the ER with people with mental illness and/or opiate addiction in need of acute care – which is so much more expensive and less effective than providing consistent care for chronic conditions.
Politics aside, this piece reveals a loving brother sitting patiently, bearing witness, remembering, and doing his best to protect his older brother’s dignity in a system that disregards it. At the same time, you’re providing succor and humor to alleviate suffering.
Blessings to both of you.
LikeLike
There were times that I think there were as many officers as ER doctors there. I do what I can for my brother. So far he’s doing much better.
LikeLike
The living generations are the first in which we’ve all started to truly have to face the fact that we’re further and further capable of far outliving our independence, and in many cases, our ability to do anything to assure or improve quality of life in old age. When 60 was “elderly” and the norm was to die shortly thereafter, we didn’t have to think about how to take care of ourselves, let alone each other, with common sense and compassion so far beyond what life among the healthy requires. I admire the strength and kindness with which you’ve supported your brother, and his determination to maintain a semblance of self-reliance, but you should know that I would never fault or question either of you for tiring of those taxing roles. I merely hope and pray that you, and all who share your struggles—including a number in my own circle, of course—will be given the resources needed and the wisdom and fortitude to use them well.
All best to you, my friend.
Kathryn
LikeLike
I do what I can for my brother, but as I age that will be less. Makes me sad sometimes, but I do the best I can.
LikeLike
Praying! I am glad he is improving. You are such a great writer. I really wandered through the description of your phone call and the story of the fuel pump as if I were there living it all with you.
You sure put a great picture in my heart as to how to pray! And helped me realize how to put everything in perspective. My husband’s knew is blown out, he had a cortizone shot and has to walk our daughter down the aisle this Saturday! Hopefully without a walker! But like I said, I needed a shot of perspective. Thank you for sharing!
LikeLike
* His knee not his knew! 😉
LikeLike
Thanks for your kind words. Bill is doing munch better today.
LikeLike
Sorry to hear this. I hope things get better soon.
LikeLike
He is improving.
LikeLiked by 1 person
Glad to know that. Will remember y’all in my prayers.
LikeLike
Hi Andrew. Not so easy to repair a human as a car! Best Wishes to you and your brother.Thank you liking my poem “Forest Park!” The Foureyed Poet.
LikeLike
It’s not easy.
LikeLike
😦 God be with you all!
LikeLike
Thank you.
LikeLike
Boy, do I feel for your brother, Andrew. That excruciating pain that can’t be explained by the best of the medical community. CP has similarities to a stroke (my disability). The nerves in our body just doesn’t work the way they do in everyone else’s body. Some don’t work at all while others do double or triple time on us. We have no other choice but to live with the frustration of it all. Obviously, Wild Bill is a trouper, a surviver-type. Most of us are who battle this garbage day in and day out. He probably is more aware of the smaller things in life that give him pleasure. It’s how we survive all the ugliness we must bear. My heart goes out to him.
LikeLike
CP and stroke are both brain injuries at their core. When my father had his strokes I started noticing a lot of similarities between him and my brother. Wild Bill is a surviver.
LikeLike
i missed this when you first posted and found it tonight when I went to your most recent post. I’m so moved by what you’re sharing, and in some measure relate, as my father has progressive Parkinson’s. I spent a good portion of this week with him at doctor’s, including today as he had another CT scan trying to locate the more severe places of pain in his back. Getting him in and out of the car and then into the medial facility is absolutely scary, and I wonder at what point we won’t be able to do it. I am glad you shared about your brother and your relationship as caregiver on call! I do know the feeling of always wondering what’s next. I also think I understand the value of the time in the workshop! I spent most of my day working in the garden until it was time to pick dad up at 3. I think the caretaker/caregiver role is challenging, but I watch, as you are, the loss of independence in our loved ones and I cannot imagine, or don’t want to, what that feels like. I’m glad you shared.
LikeLike
Being a caregiver is difficult and as I age, it does get more difficult. I’ve already got to the point where I can’t lift my brother anymore and rely transportation services to get him to and from the doctors. The feeling of helplessness is the thing I have the most difficulty with. You father is lucky to have you to help him.
LikeLike
I’m always wondering what’s next that we cannot handle. Honestly, I think a child caring for their parent shouldn’t be in question. To me it says a great deal about your character, as well as your relationship with your brother, that you are as available as you are. I haven’t honestly ever thought about what my role and responsibility would be to my brother. One day at a time takes on a whole new meaning when there is care for another person in decline.
LikeLike
Pingback: Friday Wisdom – The Test | Andrew's View of the Week
I have a younger brother who has a seizure disorder. He had brain surgery when he was 11 years old (he had three brain tumors). Part of his brain was removed. He will be 31 this year and his independence is very important to him. I get the same phone calls when there is an emergency. Our last ER trip was because he fractured his hand when he fell off of his bike. A bike he rides with no helmet mind you!
I know it is not the same as CP but I do empathize with the feeling of helplessness. I do what I can to keep him safe but he is a grown man and he is going to do what he wants to do. I will sit in the ER for hours cracking jokes and trying to take his mind off of whatever issue he is having at that moment. All we can do is what we can do. Your brother is blessed to have you!
Lynette
LikeLike
And sounds like your brother is blessed to have you too. Not easy trying to do a 6 hour standup comedy routine in and ER is it?
LikeLike
No it is not easy! It’s our coping strategy. You do whatever will get you through. I like to think of it as my super power. I can’t heal him but I can be there and I can make him laugh.
LikeLiked by 1 person
The alternative to being in pain appears to be being unconscious, Andrew. Not much of a choice, is it? Sorry for your troubles. You must feel quite helpless in the face of all this.
LikeLike
Not much of a choice. It difficult when you have no answers and only more pills to buy a little more time.
LikeLiked by 1 person
My sympathies are with you and your brother Andrew. Hoping the regular doctor can give some relief.
LikeLike
We’re hopeful, but likely what we’ll get tomorrow is more pain meds and a referral to a specialist – which isn’t all that bad, but just adds another delay.
LikeLike
A dear friend is dealing with rheumatoid arthritis and the pain and change in lifestyle is dramatic. I wish your brother all the best life can offer him and applaud you for support.
LikeLike
I’ve had a few friends with rheumatoid arthritis, not good. We’re still trying to get a good diagnosis so everything is up in the air at the moment.
LikeLiked by 1 person
a sad situation, he is lucky to have you in his corner
LikeLike
It’s a tough one for sure.
LikeLiked by 1 person
Sorry you both had to go through this. It’s difficult to be the one helping our loved ones through times like these. We wish we could lessen their pain and solve the problem. It’s good your brother has you there to help him. Navigating that world alone is scary. Best of luck with things.
LikeLike
It’s not easy – just has to be done.
LikeLiked by 1 person
Hey, stranger. I see you over here. Totally busted!
LikeLike
I’m realizing that this is not the appropriate post to be goofy on. My apologies, Andrew!
LikeLike
No worries, a little goofy helps.
LikeLiked by 1 person
Well, I wanted to stop by and show my support for Andrew. 🙂
LikeLike
Fine. I guess that’s allowed. 🙂
LikeLike
🙂
LikeLike
A very poignant post, Andrew. Having a life that includes hospitals and healthcare facilities is a way of life that is so different than ‘normal’ . The life with a chronic condition forces you to find patience and time slows for the process of medicine. Having spent years in hospital beds, I know that feeling of time and reflection. It is distressing in some ways, but freeing in others. Thank you for being that good brother who knows both worlds.
LikeLike
It can be difficult, but life goes on and learning to adapt is the key.
LikeLiked by 1 person
That pain–it slowly crumbles you. I am so sorry for both you and your brother. I hope the pain meds help without knocking him out (like morphine does).
LikeLike
So far the pain meds haven’t done as well as we would have hoped. We’re hoping the doctor has some answers tomorrow.
LikeLike
I am on your side as you try to find your adaptations that will take away his pain, and leave you with independency and control of your life. You can do it….I just know you can. Stay well, Harlon
LikeLike
We’re hopeful, but it’s difficult to maintain sometimes.
LikeLiked by 1 person
What a gift to be at your brother’s side in his time of need. Peace, Stacy
LikeLike
Thanks for your kind words. Peace.
LikeLike
One of the lest desirable features of growing old is the realisation that you can’t fix things any more. When I was seven, the doctor would come round to visit us in our home, and he would always cure me. But when my mother collapsed in her care home forty years later, there was nothing could do. It was just the same when my Dad became ill. All I could do was to sit and watch him fade away. I couldn’t get my Dad back as he used to be. Nobody could.
LikeLike
It the frustration point and the most difficult thing – looking at a loved one and having to admit, “This is the best we can do.”
LikeLike
I just hope you can find a solution that help you both cope with the situation.
You’ll be in my prays tonight
LikeLike
We see his regular doctor tomorrow. We’re hoping for a referral to a specialist who can help.
LikeLike
A very vivid description. Sorry for your brother and for the whole situation…it’s tough. The anecdote of your car break down is especially poignant .
LikeLike
It’s a difficult situation.
LikeLike
Thank you, I have become the full time care giver for my mom. She in the later stages of dementia. Life flows like the water in a creek. changing course !!!
LikeLike
I was caregiver for my father and for my mother in her last months. It’s never easy and always a new something to deal with. Hang in there and take care of yourself.
LikeLike
A sad situation and yes independency is important for everybody even though some do not enjoy independency It is not a pleasant scenerio to have an illness that is debilating. It is formidable and kind of you to take care of him so.
LikeLike
It’s a difficult situation, but we move forward the best way we can.
LikeLike
You’re a good man. You deserve a place to sit.
LikeLiked by 1 person
Thanks, that I think they knew I wasn’t going away.
LikeLike