An emergency of flesh, spirit, finances: Falling with Parkinson’s
Just how prepared were we for a middle-of-the-night crisis?
I thought I was prepared for an emergency — until I found myself in an emergency situation and realized how unprepared I actually was.
When I started writing this column, I was sitting next to my husband, Arman, in his hospital room. We arrived at the hospital at about 4:30 a.m. after the worst Parkinson’s-related fall he’s ever had.
I became aware of it when I was awakened in the middle of the night by a loud thud, followed by pain-searing, blood-curdling screams. I raced out of bed, unsure where or what the sounds were coming from. Was there a monster in the house? I found Arman in our den, writhing in pain after he’d just fallen onto the coffee table.
As I approached him, he was delirious, almost as if he were possessed. I immediately froze, feeling completely overwhelmed and having no idea what to do. Who do I call? 911? A family member, a friend, a neighbor? Or do I just curl into the fetal position, cry, and hope that I’m having a nightmare?
Essential actions
My head immediately felt like it was about to burst with my own pain, but I had to get it together and make a plan. I took a few deep breaths and called a few family members and friends, but everyone was asleep since it was still the middle of the night. Arman didn’t want me to call 911, so I managed to get him into the car somehow. I ran back into the house and packed us a bag of essentials and his medication. And we were off to the emergency room at a nearby hospital.
A few minutes into our drive, we realized that we’d forgotten the programmer for his deep-brain stimulator. I made a swift U-turn, and back home we went. When we eventually pulled into the hospital parking lot, we realized we’d forgotten his wallet. Thankfully, Arman’s sister lives nearby and was able to bring it to us. As I said earlier: unprepared.
The emergency room was nearly empty; luck was on our side with that. We were seen by the emergency room’s physician, who ordered diagnostic testing. We soon learned that Arman had multiple broken ribs and several displacements.
The next few days were a blur of long hours, shared hospital rooms, heavy-duty pain medications, visits from family, takeout meals, and overall exhaustion. Adding six broken ribs to the game of Parkinson’s disease felt like a devastating blow.
As I sat in the uncomfortable hospital room chairs for seven long days, my mind was constantly racing. I pondered how I’d get through this time as his caregiver. Was I mentally strong enough to add this boulder to my already heavy load? Would I be physically able to care for him safely at home by myself?
As we approached the time for his release, his physicians and therapists unanimously recommended an acute rehabilitation hospital to help him recover safely. Unfortunately, our health insurance company had other plans. They denied multiple appeals to cover the necessary rehabilitation.
The additional stress that the insurance denials added to my already overflowing plate was almost too much to handle. I’m not one to shed tears often, but feeling so blatantly abandoned by a company that’s supposed to take care of us brought me to tears — actually, more like hyperventilating sobs.
We knew that going home wasn’t an option, as he was simply not ready, nor was I. As per the recommendations of his medical team, we ultimately decided to go to the rehabilitation hospital anyway while we worked on another appeal with the insurance company. We’re hoping it’ll reconsider and cover his stay in rehab.
I’m hopeful that his time there will help; as I write this, he’s now been there a few days. He’ll have three hours of therapy per day, and the goal is to build back some of the strength that he lost during the hospital stay, in addition to learning more about how to keep him safe.
I’m cautiously optimistic about getting him home. I’m doing my best to keep up a positive attitude and continue to look for the bright side.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
About the Author
Rosemary Gander
I’m so sorry you had to experience this. Last December my PWP had a fall after his BP dropped suddenly while he was at the beach. He fell in the parking lot and passed out. Lifeguards called paramedics and he was transported to hospital. He was diagnosed with 2 fractured vertebrae.Like you, his health care provider was in a stand off with the hospital where his MDS has privileges and he was not able to have him be involved. It was a nightmare 10 days before he was discharged. He refused to go to rehab and I took over. Fortunately he us still early in this journey so it was more a matter of fetch and carry for 2 months.
He lives in the USA and I am in Canada so don’t understand a health care system that puts money above care but know how important it is to be an advocate for your loved one. Until I could fly down he would put his phone on speaker so I could ask questions as he was pretty loopy on pain meds. I couldn’t believe some of what I heard like wanting to do a treadmill test to check his heart…. on someone with fractured vertebrae! Put that one to a stop!
No one knows your loved one better than you so you need to be strong for them.
Jamie Askari
Hi Rosemary, thanks for sharing your story. I agree about the importance of advocating, and it sounds like you had a tough time of it. I hope that I can continue to be strong!! Thanks for reading :)
Jana Joy Blay
Jamie, I read your story and my heart sank in recognition. This story might be repeated across the country every day, every week. Your horrifying story happened to us, too, after “a fall”. We do not have the DBS issues, but how unprepared we are for emergencies stimulated me to reply. I found that ER does not know how to treat PD patients, especially PD with dementia and trauma confusion. No one knew how to diagnose the physical damage our fallen one endured effectively. After CT and MRI scans, they found the bone damage, but no one addressed the head injury or the cognitive dismay my husband was experiencing. Perhaps, with the diagnosis of Parkinson’s, they expected to see damage where no amount of mitigation would help. I don’t know. The ER team didn’t know, either. A neurologist was never consulted. Ours does not live here, nor does she serve our local hospital.
They did not know how to prep us for our safe return home. Our fall upended all the history, physical, and cognitive work we’d done over the years, muscle recovery, cognitive stabilizing of years of intensive therapies, and lifestyle to keep the Parkinson’s and Dementia slowed, while the symptoms seemed manageable.
The fall pulled the floor out from under us, and it was like all the reported extreme symptoms were now our symptoms. Round-the-clock care, immediate home equipment, lifestyle changes, where doctors and medical teams were basically clueless on how to proceed. There is no rehab facility in our area, and I have looked into other agencies. Fortunately, our county’s Department of Elder Affairs supplied us with in-home physical, occupational, and other kinds of therapeutic support for the past few months. They got it through the insurance for a few months of care. That support has run its course, and we’re on our own again. Better equipped and educated, but alone. In-home care and support have been the gift of hope, where no other supportive paths forward were possible. But the level of 24/7 care needs and attention has not stopped. We are housebound for as long as we are, due to the fall.
“The Fall” – those dense words. The fall was a split-second moment that carved a line in time, like a “Kennedy” moment on the timeline of our lives. A split second - and now there’s no similarity to the moment before the fall to all the moments after the fall.
The “Bright Side,” however, continues to shine. Living 24/7 care requires the setting aside of past or future worries for what’s right here and now. I liken it to surfing. You ride the waves that come, always learning, always knowing, always insisting that luck is with you; focus in and call on balance, learned skills with optimism, and ride the wave that you’re on.
Jamie Askari
Hi Jana, I am so sorry that you had a similar experience to ours. Although misery does love company! Thanks so much for sharing your story to me and other readers, so helpful to create this awareness in our PD community. Thanks for reading :)