One of the phrases you’re going to hear a lot as a caregiver is “significant gains.” It’s a phrase that the doctors will use in terms of progress and it’s a term that the insurance company will use in order to gauge whether they’re going to keep paying for treatment (a.k.a. Rehab).
By the way…
…doctors or the insurance company will NEVER tell you what constitutes a significant gain. The fact is, they don’t know. Significant gains fall under the category of “we’ll know it when we see it.” Fuck that.
It’s widely known that, after a year, a person shouldn’t see any significant gains. What they’ve gotten back after a year is what they’ve gotten back. Period.
Typically, doctors are pretty full of gloom and doom though. The optimistic ones of the bunch will extend that year out to two. After two, that’s it… No more significant gains.
BUT, as a caregiver to someone who is apparently on her own timeline, I can honestly tell you, without zero doubt…those guys? Can go fuck themselves in the ear. Hard.
Why? You may ask?
Cause they’re wrong.We were told after day 35, by doctors, that Cheryl would never walk our talk again and we should just get used to that.
I wish I was making that up, but that’s what we were told.
And by the way, that was BEFORE she even had any type of therapy.
They didn’t even give her a chance. For the record, the doctor that told me that, got a new asshole verbally drilled into her by me. She avoided me after that altercation. She was scared of me and for good reason. A story I talk about in my book, BURST!
Anyway, Cheryl obviously walked and talked again. A week after that incident with the doctor, she was not only walking again, but walking on her own. A fact that I sarcastically pointed out to said doctor every chance I could get.
What can I say, I’m an asshole, but in this business, you kind of have to be.
As for the whole “year” thing, well Cheryl didn’t even wake up and come back to us until a year later. Almost to the minute from the time she got out of surgery to fix the hemorrhage in her brain. She came out of surgery at 11:30 am on March 2, 2014 and on March 2, 2015…at around 11:40 am, I woke her up and she was just…back.
It’s hard to explain, but it was as if she just woke up. She was completely lucid, couldn’tremember the past year but she could talk and could retain information.
I’d say that was a significant gain.
Throughout that second year, Cheryl struggled to get back what she lost. Now that she was awake, we discovered that she was half blind in each eye and couldn’t hear. Two things that really suck when, you know, you’re trying to live life. That and you’ve spent the first 50 years of your life being able to do both.
So here we are, approaching the tail end of year three. There’s no way that Cheryl should be seeing any type of significant gain.
Wanna take a guess where this is going?
That’s right. We have significant gains, people! Specifically with Cheryl’s hearing.
Before I give you the updates, I should paint the scene a little. Cheryl’s hearing has been a conundrum to every doctor she’s come across. First, they can’t fully get a successful hearing test done because Cheryl’s brain works against her. The normal test is you wear the headphones and press a button when you hear the beep. The thing is, Cheryl’s brain confuses her and she “hears” a beep constantly. So she’s always pressing the button.
Because of this, no accurate test of her hearing can be given.
Then there’s the other thing… Cheryl can read lips. Which super confuses the doctors. The abilityto read lips is a higher brain function. Hearing is a lower one. So, going the math, Cheryl should be able to hear before she can read lips. Alas, that’s not the case.
No doctor has opted to take the time to figure out why this is. We’ve gone to top doctors in the field, we’ve gone to specialists, we’ve gone to universities for her to be studied. None of them have panned out in the area of what we want… getting her to hear again.
As I said before though, Cheryl is on Cheryl time.
She’s gonna hear when she wants to hear.
A few months ago, Cheryl woke up and, according to her, could hear clearly. It was a, dare I say, miracle. In those hours she wanted to do EVERYTHING. Listen to music, call everyone to hear their voices and talk all day. I accommodated every request. In the early afternoon, she got tired and her hearing started to slip. It went from being clear to being muffled to gone again. By 2 O’Clock it was gone again and never came back.
That is until the other day.
Cheryl woke up and could “hear.” Sort of. She told me that voices sounded like the adults in a Peanuts cartoon. Lots of “waa waa wah’s.” Her hearing never came back to being crystal clear but still a huge gain over being able to hear absolutely nothing.It’s been about a week now and unfortunately, she has reverted back to being deaf, unable to hear anything. Which sucks, because even at the “waa waa” level, she can hear her own voice and thus her speech greatly improves. Almost to the point that it’s clear enough that the idea of jumping back into the podcast again is on the table.
It will come back. We have complete confidence that it will. I mean, how can it not when she has these “moments.”
It’s not just the hearing. Cheryl’s left arm is moving more than it ever has before. She has control over it. She still doesn’t have control of her hand, but it’s coming. It’s just going to take time…Cheryl time.
Before I end this…
I want to leave you with another story of success. Several months after we got home, we went to a support group. In that group a woman told the story of her son who had suffered a stroke. He too, was told that he would never walk again. Ten years later, not only did he walk again, but he did so without the use of a walker or a cane.
The point of all of this, is that if you’re reading this and you’re maudlin because some doctor told you to “forget it,” I’m here to tell you: don’t!
They’re job is to put it in your head to accept your circumstances. To set the bar low so that ANY gain is a significant one. One that they can boast about. Don’t let them get to you. There’s always hope, no matter how long it takes.
I promise you.
And if you’re even in the position after you read this, where you hear, “they’re probably never gonna…” You stand your ground, tighten your chin and tell them to go fuck themselves.
Tell ’em Manny, a fellow caregiver, said so.