The sounds of hospice

 

Some of the clearest memories of my childhood don't involve visual scenes at all. They are the sounds, the feelings, the movement around me that created the feeling of family and safety.

 

The sound of our old Ford F150 being started at 2am as we three girls slept in our bunks in our camper, snug in our sleeping bags and secure in the knowledge that our parents were up front, the dog was in the crawl space, and we were off on vacation for another month or six weeks. The sounds of the truck, the sway of the camper on the road as we climbed the Cajon Pass, the feel of my sleeping bag- those sensations will never leave my memory.

 

The sound of my cat Piggy purring in my ear at bedtime and the feel of his paws wrapped around me- that was bedtime. The sound of dad's stereo blasting military marches and the 1812 Overture with full cannon to wake us for church on Sunday morning, or the sound of "Carl Princey and the Gas Company's Two Hour Evening Concert of the World's Finest Music" made bedtime on Sunday complete. I have no memory of my darkened bedroom (ok- I do have memories of shutting my eyes in determination to defeat the cannons blasting through my room. I can now sleep through the Fourth of July!)- but I do have those audio files buried deep. As an adult I don't remember Post Op after surgery- I remember the sounds of monitors and the voices of nurses (fortunately most of the time I knew the nurses as friends and they were kind and gentle voices).

 

And now after years as a hospice social worker, widow, and now wife of a hospice patient once again, I have so many associations of the sounds that come with terminal illness and hospice. Sounds that I was able to externalize as belonging to other families as I provided for their needs as a social worker; sounds that have now come back to our house and are once again personal.

 

I was in four other homes today. All had the sounds that make hospice- baby monitors squawking as they blasted the sounds of the patient's room as the family met in another. People coming and going and trying to ask too many questions all tumbling over one another (yes, I thought about a whistle. No, I didn't act on it). Food being prepared as if anyone had an appetite, because food always makes things better. Except when it doesn't. Food does provide an outlet, however, a focus, a chance to gather together away from a bedside for a bit. The sound of a patient being bathed and not necessarily wanting to be bathed, but needing it. The sound of gentle voices cajoling and coaching into a decision that allowed the bath to happen. The sound of silence as a terminally ill youngster was allowed to finally nap in the midst of too many people trying to do too much. He didn't need to see anyone- he felt their hands, their arms holding him; he fell asleep holding his brother's hand. The inevitable sound, in every home, of the oxygen concentrator. It hums; it breathes; it makes oxygen from room air and delivers it through a nasal cannula or mask to make even the sickest patient just a little more comfortable. As we cope with pain and anxiety all of us naturally pull up our shoulders and breathe just a little bit harder. Meds and oxygen will allow almost anyone to relax enough to sleep.

Then after a longish day I was able to cut a little bit short (yes, I use bribery in therapy to help teens make good choices and learn the lessons that come from rewards) (thank you Sherry Shockey-Pope for finding us an office close to a frozen yogurt shop!), I came home to the same sounds at our house. And this time it was personal. Kerry couldn't help carry dinner in because she was sitting bedside watch for Casper, who was hugely confused and disoriented and was sleeping with her legs off the bed with a look of weird amusement on her face. Kind of like "I have no idea why I am in this weird and uncomfortable position but there isn't a thing I can do about it so I might as well laugh while you try to figure out what to do with me and about this." Casper had already fallen today and hit her head. No injuries yet- waiting for the bruises to show up tomorrow when she won't remember it. I fed her dinner, especially after I found her trying to eat the TV remote rather than her dinner. She wasn't complaining that it had no taste, which proves how little she has left in terms of taste buds. She thought it was normal for her dinner to taste and feel like a TV remote!

And so it was that after dinner she finally fell asleep. She's still asleep hours later as I sit and write this blog. That's when the sounds of hospice arrived- and made my skin just crawl. Kerry and I got Casper back in the hospital bed tonight, and she immediately thought we were back in a hotel. She looked for her grandmother. I reassured her. When she was finally asleep, the guttural sounds started. With PD and LBD the brain forgets to swallow. Truly. So as you sleep the fluid builds up on your vocal chords and air creates a tremendous sound as you breathe. Added to that was the respiratory infection. As I dozed off (no sleep last night) the sound built. I awakened to memories of Linda's last week. Casper got atropine (prescribed to dry up secretions). No results. Then repositioned again. No results. Then I attached a mask to her face with a breathing treatment and she slept through it, but the treatment got into her. With no result. I tired to adjust my thought process. I removed myself from the memories of Linda's last week. And still it rang in...

I did what I advise families to do- I evacuated. Not far. I can still hear her, the oxygen is running, and I will be bedside again soon. But the sounds of hospice are here at home tonight. They are too soon. They are too close. They are not welcome. And there is not a damn thing we can do about them except accept them and take care of Casper. (And have a glass of good Cabernet). Back to bedside now- hand holding is required. For both of us.