What will today bring? It was a night from hell.
We were alone in the house and had a quiet evening watching a Hallmark movie. A friend came over at 9 and helped me get him into bed. We fell asleep around 10:30. At midnight he woke me with gurgling gasping breathing.
Breathing treatments. Gurgling, gasping. Morphine. Gurgling, gasping. Meditating and praying. Gurgling and gasping. More morphine. More breathing treatments. I thought perhaps this was going to be the end. I wasn’t in panic. I just wanted him more comfortable. I held his hand and leaned my head against his. He was hot.
I thought of calling a friend. But what could they do? I didn’t worry about disturbing them. I didn’t call because I wanted to just be quietly alone with Larry in the intimacy of the night.
At 2:00 AM I called the emergency hospice line to see if they could offer any other treatment ideas. I was calm. I got a recorded message and was put on hold for 2 minutes. I hung up. I wanted to just text my questions.
I put Larry’s Bi-pap mask back on him and brought the dog to cuddle under his hands. The breathing problems had escalated by now to moaning in between gasping and gurgling. I called hospice again. More recorded music on 2 more minutes on hold. I hung up. I sang to him. I played music on my phone.
Finally I called hospice again and reached a person who apologized that they were having phone problems. Asked questions. Suggested I crush a Xanax and put it under his tongue. Said they’d call the triage nurse.
I crushed the Xanax. I got a tiny funnel – I have two and had the presence of mind not to use the glass one even though it was a better shape because of the possibility he’d bite it. I brought the crumbled pill and funnel into the room and took off his bi-pap and just stood there feeling helpless.
His body was restless, his teeth clenched. It would have taken several people to get the crumbs under his tongue. I should have asked how the hell I was supposed to accomplish this task? What other ways might I do it. I wanted to text back and ask. I didn’t want to call and be put on hold again.
As I waited the 30 minutes for the triage nurse to call, his breathing finally slowed and his body calmed. I figured the morphine was finally kicking in.
I told her we were okay and she started to ask questions to understand what might have happened to start the episode. Had I just given him liquids? Had he aspirated? She clearly didn’t understand that it was just his Multiple System Atrophy.
So what will today bring? We have a nurse coming soon to check his pressure sores. A new nurse who is replacing the nurse we met last week and told our story to and explained Multiple System Atrophy. This nurse is brand new to hospice. Any hospice. Hmmmm.
I’m glad the pressure wounds will be checked. They are awful now that he’s sleeping so much. At this point, it’s not their medical answers I need. I ordered a medical grade sheepskin to see if it would help. We’ll try that today. But I want not to have to change bandages on his butt. At all!
So many of the caregivers who remain active in the discussion group after their loved ones die talk about the PTSD they experience before and/or after the deaths. What was interesting to me was how many mentioned the pressure sores as a trigger.
Why does treating pressure sores stand out for these caregivers in the long list of horrors we deal with? Is it the intimacy of it? Perhaps. Is it the ugliness, the odors? Is it how painful they are for the patient? Perhaps. Maybe it is also the absolutely tangible visceral evidence of the the deterioration of the body.
Someone asked me whether I was dealing with my emotions. Which ones? Should I be grieving his impending death? But according to the Multiple System Atrophy discussion groups, these symptoms could go on for months. And months.
I can only stay in the present. I’m calm. I’m accepting. I’m exhausted. I’m grateful for my family and friends. To everyone of you who is reaching out by text or message or phone or cards.
In a few minutes I’ll go wake him up and figure out what will today bring.