The strangest things blow me away.
I opened the refrigerator and there are leftovers of food he took a few bites of. Today it will be five days since he’s eaten anything.
I went to make coffee for Cody and me and there was cold coffee there from yesterday. I looked at it for probably two minutes. Normally I would have poured it in the carafe in the refrigerator to save for Larry’s iced coffee. I couldn’t pour it down the drain. That seemed like giving up. I couldn’t put it in the refrigerator. That seemed like relentless hope. So I left it there and walked away.
The laundry can blow me away. I did a wash and folded his shirts and shorts and wanted to cry. It’s not that I haven’t cried.
I finally slept til 6 am this morning after many nights of giving up sleep at 4 or 3 or 1:30 AM. I rolled over to put my hand on his heart and hold him. I didn’t realize I was crying but the tears rolled down my cheeks. I took a deep breath and tried to hold us both with quiet loving energy.
The hospice nurse came yesterday at our request. He gently examined Larry. He seemed sad. He confirmed what Cody and I had been talking about. The signs of the end are there. Larry’s has only had drops of water for the last few days. He is waking only for short periods. The nurse’s guess was within 5 days. He said if things got too hard for us to manage by ourselves they would send a full-time nurse. He suggested we stop all meds except for comfort meds.
As I suspected, this is what hospice does well. The last days. The active dying. Not the slow dying leading up to this.
Yesterday was April 1st. In the morning I wrote in my journal that maybe Larry would wake up and say “April Fools, just kidding.” I didn’t mention it to Cody. Last night Cody turned to me and said, “maybe he’ll just open his eyes and say ‘April Fools.'” Larry would like that we separately we thought that and got a laugh out of sharing it – a way too big laugh.
When he is awake, he does respond a tiny bit with small raises of his thumb or minute shakes of his head. He’s tried to say things to us but it’s so damn frustrating because we feel helpless that we can’t understand and we haven’t yet guessed right. We feel so helpless to help him communicate.
We know by thumb raises whether or not he wants pain meds – mostly not, but we do pre-treat him with morphine before we clean him up. Yes, unbelievably, he is still going. We finally gave him Imodium with the hopes of binding him up so we don’t have to put him through the pain of continual cleanings. Who would think of Imodium as a comfort med?
On a side note, one of the caregivers on the Multiple System Atrophy Facebook discussion group said in response to my post about Larry’s extreme reaction to the enema that she had found that hospices were way too aggressive about treating bowel issues. We’ve found Mountain Sage Smudge Sticks a better air freshener than Febreze.
Our three kids are talking to each other. Mostly about how to best take care of me. My friends are talking to each other, and to my kids. Mostly about how to support me. One friend was going to pick up Mexican food for Cody and me last night. She texted the menu and asked us to choose. We were helping the CNA clean Larry so I didn’t respond. Shortly thereafter she texted back not to worry – that my daughter Krista, in San Franscisco, had chosen our dinners and she would deliver them at 6:00. Krista chose well. The food was great.
I’ve been an independent, take charge woman my whole life. It is so strange to have this back and forth between friends and family all going on behind my back. So strange and so wonderful.
They provide a safety net of love. In a different way, they blow me away.