We are struggling to make an appropriate care choice for Larry’s labored breathing. He say it feels like he’s choking. It sounds like he’s drowning. It’s painful to us both.
I feel the same visceral agitation I felt when my kids were young and crying and I couldn’t find a way to sooth them.
I feel such a physical sense of adrenalin pushing me to action. I’m sure it’s important to the human race for us to have an automatically triggered response to kids crying (and people choking) – otherwise, the human race would die off. But it’s exhausting to feel that way day after day. I feel so helpless.
So I keep pushing toward more action and agonizing over the right action. Specialist? Emergency Room? Hospice?
After trying the primary care doc, getting a referral to a pulmonologist, then finding we had to wait three weeks to see him, my body started to panic.
I had even less resilience because I was also experiencing technology frustrations from a phone that fell in the toilet. The touch screen would only react to one out of every three or four touches. Yes, it is kind of funny in a sick sort of way. My phone is drowning and my husband sounds like he’s drowning.
My mind went into overdrive. Fix the phone. Fix my husband’s breathing. What to do? Who to call? What if we did this? What would happen if we did that? What’s the right choice here? I wanted some minimal level of control somewhere.
If it were possible, smoke would have been puffing from my ears with all the gears in my head spinning and grinding at warp speed, and an MRI of my brain would have looked like a jungle of twisted vines.
In that moment, the specialist called back. We could be seen on Thursday. Momentary relief. A care choice had been made. Then I thought of two more days of this, and worse, two more nights without sleep.
I went back to whirling through other care choices. What about the ER? Hospice?
In a moment of relative calm, when my husband’s breathing was softer, I took a deep breath and remembered my coaching advice to my clients.
I’ve told leaders who are struggling with a decision that there is no way they can know absolutely what the right choice is. Just gather as much information as you can, make your best guess, take appropriate action to maximize success, continue to monitor the environment and be prepared to change course if something changs.
I recognized that each care choice was reasonable. The specialist looked like the best first step. I also made an appointment for an informational interview with hospice for next week, after we see the specialist and see whether any intervention he might suggest has a positive benefit.
I decided that if the night was too unbearable we would go to the ER and enlisted the help of a friend willing to go with us if we needed to go in the middle of the night.
I thought about what we wanted to say to the specialist about our desired outcome. Multiple System Atrophy is a rare disease. He may not have seen it. I want him to know that we are looking for symptom relief for Larry’s breathing, not a cause or a cure.
I even found some help for my phone. I had no rice to bury it in (a suggested solution for a damp phone.) I tried popcorn kernels. Didn’t help. I bought Damp Rid, a product used to take dampness out of the air in basements and mobile homes. I buried my phone in it for hours and it’s working!!! I can only hear if the phone’s on speaker but the touch screen works and it smells nice.
I am calmer. I know we have no way of knowing the best care choice, so I don’t have to worry about doing the wrong thing. I can’t control what comes, just pay attention, and make the best next care choice.
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