There are not enough tears so why bother to cry! I was reading a book called Being With Dying and the author quoted a dying person as saying “It’s not death that’s hard, it’s the dying that’s a pisser.” Oh, yeah.
The last few days have been the worst. He hadn’t pooped in many days but had hardly eaten and had no discomfort. At first I wasn’t worried, but just in case, I asked the hospice nurse just to check him out Friday morning at 9 am. I so wish I hadn’t!!!!!
That check resulted in an enema that just hasn’t stopped giving. The nurse left at 10 am saying it might take til the afternoon. HA! Today, 53 hours later, we are still in a “go” mode. He’s spent his first days stuck in bed, mostly half or fully asleep, so very weak. In retrospect, this was too aggressive to do to an MSA patient.
Thankfully, his son Cody arrived Friday. I couldn’t have done it alone. The worse was not the messiness but the pain Larry was experiencing – stomach cramping, pressure sores being cleaned over and over. His face was in a grimace, the cords of his neck standing out rigidly.
And yet, because it’s Larry, there were still funny moments. When Cody and I did something incompetently in the midst of helping him and Larry snickered quietly. Or when we decided he really needed a shower but we couldn’t make it happen, and I suggested we strap him face down to the roof of the wheelchair van and take him through a car wash. Cody even promised we’d find a “Gentle Touch” carwash. Larry managed to raise his eyebrows.
Then last night as we sat waiting for him to finish his breathing treatment and clean him for the last time before we went to bed, Cody started exploring the Hoyer lift that hospice had delivered. I showed him how it’s supposed to be used and why it didn’t work for us on a carpeted floor and with Larry being so tall. Cody decided to try it for himself.
In he climbed, and up and down he went. Rides at Disney, right?
This all sure feels like one of those rides I have always hated that make your stomach drop out.
And yet, when I can pause and stop doing, stop problem solving, I am able to bring more open-heartedness.
This morning I was reading a quote by Lao Tsu about the value of emptying your head, of non-doing. The doing is the benefit, the being is what matters.
Someone said wiping his ass is CNA work, not a job for a family member. That may be true. And yet sometimes, just maybe it is an act of love. Thankfully, our CNA is as caring and gentle as a family member. Certainly more skilled. We’re learning from her how to help Larry better.
There is a messiness to all of life we like to forget, prefer to avoid. We like it neat and tidy, without pain. Coming into the world is a messy painful process. I guess going out of it is too.Dying is a pisser. And there’s a lot of messiness and pain throughout life, if we are really present to it.
I don’t know if this is Larry’s time to go. Or if he will revive and we will go through this again. I do know there is something for me to learn here.
I do know that I am a part of him and he is a part of me, and a part of many others in this world, who’ve known him, loved him, admired his grace and fortitude throughout his life and throughout this process. When his body goes, today, tomorow, next week, next year – whenever, he will still be within us, within our hearts.
I just have to stay open and be present.