Last Words
“Don’t do that!”
These will quite possibly be the last words my father in law will utter. As his caregiver and I changed him after a quite interesting morning, he was clearly not interested in the extreme rolling, wiping, and donning of an adult diaper that we were orchestrating. As we turned him to the other side to complete the task, he whispered again: “Don’t do that.”
Sunday was a whirlwind. As I hit the track at Sports Backers stadium to complete the last mile or so of my 20 mile run, adding on to a planned 18 mile supported route with the team, I received a text from my daughter.
“Can you check on Grandpa after your run? His breathing didn’t seem right.”
I called to check on things first. Most of my family was going to the annual family reunion in town, and my father in law was in good hands with his caregiver. It was agreed that I would stop by on my way home.
He seemed ok, but not great. Per the pulse oximeter, his oxygen levels were fine, but his heart rate was elevated. But with his tremors from Parkinson’s, I didn’t trust the device. I asked him if he was hungry, and his facial expression changed for the better. I assumed that meant he was hungry. His caregiver fixed him something to eat, and he gladly accepted it. Satisfied that all was alright for now, I went home to shower and eat, letting his caregiver know that she could call me if she needed me.
I received a call about 45 minutes later.
“Miss Anne, something doesn’t seem right. Can you come over?”
I did the best I could to finish what I needed to do and head over there. I took my stethoscope with me.
I needed my stethoscope to check his apical heart rate. This is what you call it when you check someone’s pulse by directly listening to their heart. It was 124, which is very high. His respirations were over 30, also very high. And he looked at me in desperation, as if he were saying, “Please help me” with his eyes. I’ll never forget his expression.
We use a faces scale in healthcare for non-verbal patients. On this, I would give his expression a 7 or 8 out of 10. That is not a comfortable place to be. And whether it was just anxiety or pain, either way, we needed help.
I called my good friend and fellow coach Kelly, who is a hospice nurse, and asked for her feedback. I wanted to make sure I wasn’t overreacting to my observations. She assured me that I wasn’t, and also explained what would likely happen next when I called his hospice team. She was right. Word for word.
As the on call hospice nurse gave me instructions to find the emergency medicine kit, I felt the tears beginning. I never imagined that I would find myself in the position to give my father in law his first doses of morphine and lorazepam.
I texted my husband to let him know what was going on, as they were on their way home from the reunion. All the family were rerouted to Grandma’s house.
It was after the first dose that his caregiver and I were blessed with what will likely be his last words.
By the time everyone was there, I had received a follow up call from the hospice nurse. No, the first dose didn’t completely alleviate his agitation, but it did take the edge off. He was still using all of his accessory muscles to breathe. The doctor was called. The dosage was increased. The meds were given again. And finally, he was comfortable.
It’s interesting how someone chooses who their person will be. I think he wanted me to be the one to make the choice. He didn’t want my mother in law or my husband to be burdened with this task, this decision to start the morphine.
It’s a bit of an awkward place to be both a healthcare provider and a family member. Professional me is fighting to stay objective to avoid the grief. Sometimes you know too much about all the things. And sometimes you feel like you don’t know enough. And at this point, my skills as a physical therapist are not exactly needed. But part of the art of healthcare is in helping family members understand what is happening and how to bring comfort. I’ve had lots of practice with this, too.
Now, nearly a week out from Sunday’s chaos, I’m having second guesses as to whether I did the right thing. Everyone was on the way. They could have seen him with his eyes open and talked to him before the morphine robbed him of his conciousness. But then again, I don’t know if they wanted to see the expression I saw.
At some point, this will all hit me as a daughter in law, and I will have to decompress. I find myself pretty irritable when running errands. I nearly lost it when the card reader at the grocery store wouldn’t read my chip the other day. But I must give myself some grace. It’s funny how much something so small can be the straw that breaks it.
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We now have daily visits from a hospice nurse.
Grief is a strange experience, indeed. In many ways, this process began at the beginning of his symptoms. We are now choosing photos for his funeral and making arrangements.
As always, I hope you all are safe and healthy.
