He hasn’t been able to speak on the phone much the last four months that he’s been in the hospital, so I damn near dropped my phone scrambling to answer it.
For the first time in weeks, his voice was clear as day and he sounded wide awake and lucid. I was so excited!
That’s when he said he needed help. He needed me to “give him the number of his main squeeze Sharon”….
Mind you, my dad has been married for some 25 years and his wife just passed in June.
Dad went on to say that he met her at work. He said he worked downstairs and she worked upstairs…
But Dad hasn’t worked in over three years.
A few days ago, he said he went outside to start his car, but it wouldn’t move and we need to call the finance company ASAP. But Dad hasn’t driven nor seen his car since March.
This is what his recovery looks like right now. A specific diagnosis? We don’t know. One doctor called it “anesthesia fog.” After being on a ventilator for so long and on a cocktail of drugs, apparently this can be pretty common. But how long it will last is a question that the doctors can’t even answer.
But this call came after another devastating blow earlier in the day that Dad’s insurance is dropping his coverage for rehabilitation benefits. He’s not “progressing quickly enough.” Dad has only been in that facility for a month and two of those weeks were spent in forced quarantine. So, two weeks of rehab? Two weeks is all he gets to recover after being hospitalized since April 1st? That’s the best we can do for our senior citizens?
And that’s pretty much how the last four months have gone. Just when there’s a sliver of hope, a setback follows. Just when we get good news, bad news is not far behind.
Now there’s talk of a suspected stroke that he needs testing for. How will that change the recovery plan?
Our conversations with the doctors these days are less about when he will come home and more about if he will come home.
Needless to say, it’s been a roller coaster of emotions the last few months. I can barely keep up with my ever-fluctuating highs and lows. I can only imagine how my boyfriend feels watching it all happen.
It seems my days are filled with constant calls with doctors (a whole gamut of doctors), conversations about insurance, lawyers, red tape, long term care plans.
To say that it’s exhausting would be an understatement. Thank God I have my older sister to help navigate this process. I try not to let it consume me now. It did for a while and I have crawled out of a deep, dark hole of depression.
I am in uncharted territory here. I am being forced to learn the very difficult lesson of relinquishing control. Let go and let God. SO much easier said than done.
I try to remind myself to take it one day at a time, one problem at a time. Don’t worry too much about what happens down the line. Just focus on putting out the fires in front of me. And, loads and loads of self care. Sometimes that means taking out my frustration on cleaning the house. Sometimes it means crying in the bathroom when no one is paying attention. Sometimes it’s sitting under the tiki hut with a glass (or three) of prosecco. Sometimes it’s taking a nap, or going for a walk.
I just have to remember, all storms run out of rain. This situation SUCKS. But, it is temporary. Eventually, everything will be okay.
On June 23, 2017, my dad went to the hospital for an elective surgery. A double bypass. A necessary surgery to get him healthy enough to have his knees replaced and allow him to be more active.
I never could have known that my life would be forever changed after that.
Dad’s surgery went flawlessly. It was a success and he was in recovery. He even took a walk down the hallway of the ICU a few days after the surgery. I didn’t know that would be the last time I’d ever see him walk. Things suddenly took a turn for the worse.
His breathing failed and after a day or two of a breathing mask, he had to be intubated.
Because of the intubation, he had to be sedated.
Not long after, his kidneys started to fail.
He was on the ventilator for months.
Dad’s heart stopped…twice.
The palliative care team started asking us questions like, “Is this really the life he would want for himself?”
Eventually Dad was put on dialysis.
Months went by this way. Dad was essentially in a medically induced coma from the sedation. Hadn’t walked, talked, or eaten in months.
To understand the gravity of this situation, there’s two things you need to know:
My dad and I are very close. Aside from my twin sister, I’d say he’s my best friend. I am so much like him that it’s uncanny. The jokes I make, the way I wear my heart of my sleeve, my outlook on life. We talk about anything and everything and I love our relationship.
The same week my dad went into the hospital, my husband (who I had been with for the last ten years of my life) and I separated. For the first time in my life, I was living on my own. Now navigating a move, a divorce, being a single parent, a new lifestyle.
It was like losing the two people closest to me in my life at the same time.
Months went on like this, visiting the hospital, at least once, if not twice a day.
I can’t describe the loneliness I felt during that time. At that point, it wasn’t public knowledge that my dad was still in the hospital, and only a handful of people knew about my impending divorce.
I felt…alone, in every sense of the word. I felt like I was bursting at the seams. I remember sitting in Dad’s ICU room by myself on the 4th of July. He was asleep. And I just sobbed. And sobbed. And sobbed. This was my existence, and his, for months.
And the complications didn’t stop there.
Eventually, Dad had to get a trache and was taken off sedation, but it took a while for him to come around.
Dialysis continued, twice a day.
There was a suspected stroke.
Suddenly, he was paralyzed on the entire right side of his body.
Then, there was a brain bleed and a craniotomy followed by a few month period of Dad hallucinating and still unable to talk due to multiple trache procedures.
Once he was more stable, he was moved to an acute care facility. And then a skilled nursing facility.
Dad finally came home a year later. Not because he was healthy and ready, but because his insurance benefits ran out.
At the point, he had lost 110 pounds, was bound to a wheelchair for the first time in his life, and lost his job.
Life was changed forever. For all of us.
I don’t have the words to describe how hard that year was. The loss. The pain. The loneliness. The fear. It was always one step forward and two steps back.
I vowed that I would never take my dad for granted again. And I haven’t. I have enjoyed every minute, every opportunity I’ve had since then to share a meal, share a joke, or even just sit in silence together.
I find myself in a very familiar place now.
Dad was hospitalized on April 1st with pneumonia. Three and a half months later, he is still in the hospital.
“Fucking Groundhog’s Day,” I tell myself sometimes. I can’t actually believe we are going through this all over again.
Dad was on a ventilator for three weeks or so, which, of course, required sedation. He had edema and fluid in his lungs, so he was on medication for that. Only, that medication made his kidney function dip.
Then, he had a fever, for days. And they couldn’t figure out what it was. They tested for COVID-19 four times, each time the test coming back negative.
A CT scan showed an irregularity in his intestines and he was rushed to surgery just hours later. They ended up having to remove a 1/3 of his colon.
The doctor (God bless him) very sympathetically, but very clearly explained that Dad’s body may not be strong enough to make it out of that surgery.
I thought he was going to die that day.
And every day for the last 3 ½ months, when my phone rings, I unconsciously hold my breath, praying that I’m not about to receive bad news.
This particular stint in the hospital has been complicated by COVID. I haven’t seen my dad since March 27th. I haven’t been able to have a meaningful conversation with him, or eat dinner with him, or laugh with him. I miss him so much.
While I am thankful for the technology we have today, there is just something different about seeing your sick loved one through a computer screen rather than in person.
About a month ago, on June 11th, my stepmom, his wife of twenty-something-odd years, passed away, somewhat unexpectedly. They never got to see each other since he was admitted to the hospital. They never got to say goodbye.
The saddest part was that my 3 siblings and I had to deliver the news to my father through a fucking Zoom call. The hospital wouldn’t allow even one of us to go tell him in person.
Dad has since been moved from an acute care facility to a skilled nursing facility. He is stable as far as vitals are concerned. The trache is out. He is breathing on his own. He is able to have pureed foods and liquids with a thickening agent. He is having a lot of trouble learning how to talk again. And, due to weeks of sedation and cocktail of medication for months at a time, Dad has what one of the docs call “anesthesia fog.” His lucidity comes and goes, and he is confused often.
Now the focus is on rehab. He has to at least be able to transfer from the wheelchair to bed/toilet/recliner and back in order to go home. Oh, and if he doesn’t progress quickly enough, the insurance company will kick him out. And if he is unable to get strong enough, he won’t be coming home at all. He will have to live in a nursing home. My dad? 67 years old.. in a nursing home?
I have to be honest with you guys..I’m really concerned. We had a Zoom call with my dad today and he seems…like a shell of the person he used to be. His eyes were vacant. Unable to really communicate, he mostly just stared off into space.
It feels like he is giving up.
And so, I’m right back on that rollercoaster I was on three years ago. Just when we think he’s getting better, there’s a set back. Just when I let my guard down, the phone rings.
And I’m not ready to lose him yet. There are still so many more conversations I need to have with him. There are so many questions I need to ask him. And he deserves better than this. He deserves more than to go out like this.
Jaclyn Knight 