Paul's room in hospice.
There's a certain kind of day on the west coast where the rain seems to hang in the air and everything from the sky to the scenery is grey. Looking toward the river you can't discern water from sky on these days. That's the kind of day it was the day after Paul's 58th birthday. That day we got the call to say he was moving to hospice.
Bitter sweet for sure this birthday. We brought him home from palliative care for a couple of hours. That's what he wanted and Finn wanted, for him to come home on his birthday. It was the hardest day.
These days my spiritual practice routine is in shambles. I can't remember the last time I've sat in meditation. For the past 2 weeks I haven't even been to yoga. However every night as I lie in bed I look back on the day with an eye to gratitude. For example that day my friend Pamela spent a few of her precious hours off from work driving me through the rain to meet with my father-in-law and a lawyer. It must be brutal, as a parent, to realise that your child will predecease you. And to have to think about what you have to do now that your child, who was to have been responsible for your care when you could no longer be, wouldn't be there to do it. It was one of Paul's anxieties that this would not be taken care of for his father. So to the lawyer.
Pamela listened to my joy and grief as she drove and I choked back a quick lunch. I don't so much have an appetite as know I have to eat. It was a blessing not to have to drive on top of everything else.
The birthday wasn't without joy. Just having Paul home was a blessing. In anticipation Finn had tidied the house. He and I are the two messy ones who deferred to Paul to make sure garbage was taken out, laundry and dishes washed. Finn has been stepping up in this. Another gratitude. He joked with his dad that he should have left him some laundry and dishes. Something to do when he was home. Finn had also hung the birthday banner where it will likely stay until his own birthday later in the month, as it usually does.
A few weeks ago I asked Paul if there was something special that he wanted to do, for his birthday or otherwise. At first he shook his head then made a face and picked up his clip board. He wrote "Go out for pizza and a nice glass of wine. Come home and cuddle with my family. Make love to my wife." Heartbreak. He can hardly open his mouth, can't swallow and is being fed through a gastro tube. Heavy duty narcotics took away sex months ago. Coming home and cuddling with the family was all he could do. At home he sat in his favourite coffee spot by the window and I made him a fresh hot cup to hold in his hands and smell. He skyped briefly with a friend about some music they had recorded together but never released. Skype so Paul could type his half of the conversation in real time since he can't speak. And then we sat as a family on the couch and watched Finn's favourite ridiculous tv show. Although Paul's ability to concentrate is low, he sat between us so we could be together.
After this he played a bit of guitar. While it was beautiful to hear him play it was poignant too to hear him comment about his lack of hand strength. We had a second family hug when Finn walked around the corner erupting in grief and we stood together with he and I sobbing while Paul comforted us. And then it was time to head back to the hospital.
The next morning, Friday, December 2, he texted to say that he was being moved to hospice.
We first talked about hospice because it made sense. It is a careful and constant balance to keep his pain managed. He is receiving sustenance and meds through the gastro tube. But later I said to Finn, "Part of me feels like having dad go to hospice is like giving up."
"But I also feel like it's the best place for him, for his safety and comfort."
Monday a snow storm raged and the world turned white. Paul got word that he would be moving to a different hospice, the one we had preferred in the first place. The snow actually delayed that for a day, but now he is here. Now Paul has his own room. He has his guitar and amp and we've hung a family photo as well as a painting that a friend did of him. Here we can be together and let the nurses take care of his many medications. We've been working with our friend Corinne and others on a box set which will include music, photos and other memorabilia. It gives us something to focus on. Our goal is to have it done in time for the tribute show January 27th.
This is precious time. We spend more time together just hanging out than we have in years. It has become it's own kind of spiritual practice. This is the kind of thing I also name in my gratitudes along with friends who come and take me out for dinner, my parents who pick up laundry and drop off food and the Christmas elves who decorated his room. I am also grateful for sunshine and a reprieve from the rain.
This is a time of moments. Grey moment, white moments, sweet moments and sad moments. Life.
Mark your calendars for the Super Duper Show - Triubute to Paul Leahy, January 27.
If you'd like to support the gofundme campaign that Paul's friends have started for him, you can find it here:https://www.gofundme.com/superduperstar
In October, right after Thanksgiving, Paul was diagnosed with untreatable malignant tumours.
I wrote this several weeks ago. Much has happened since then.
It may sound awful but there are moments when the foremost thought I have is "how will the laundry get done?" It's true. My sweetie is critically ill and I'm worried about the laundry. Because Paul has always done the laundry. I kid you not, I don't even know how to run the machines. If I was going out of town, Paul would assess what I would need and just make sure those things were clean by the time I had to pack. The joke in our house always was "if you don't want mom to find it, put it in the laundry room."
Pretty much since we have been together (over 30 years) and certainly since Finn was born (he's 19 now), Paul has been the one who took care of everything. He made sure that Finn had lunches, got to music lessons and had his homework packed. He has done all of the banking, paid the bills and made sure we didn't bounce any cheques. He locked the front door at night and put the leftover food in the fridge. He has been the family care taker for more than twenty years.
I've suddenly become a care giver to Paul. This is a different role, and now the other tasks languish. The other day I woke up just as I was drifting off to sleep and realized that no one would have put away the leftovers from supper. I got up and had to make space in the fridge to shove the pot in.
Paul first had surgery at the end of April. I realize that incrementally the house has just gotten more and more dirty and disorganized. I still went to work and still did the things I do. And while he kept up with a lot of the tasks, the tidying and cleaning, not our forte to begin with, really started to slide.
As I think about what Paul needs right now, an organized, clean and tidy house is right up there. I've started to try to get to all of the clutter that I've put off for years. I am an accumulator as well as a procrastinator so many things have gathered in the corners. Today I spent the day clearing the kitchen. And I do mean clearing, not cleaning. There was too much stuff on the counters to really clean them.
I started this thinking about the difference between care taking and care giving. Not in clinical terms, just what it meant to me. Paul took care of us. He made sure that things were in place so we could go about our days. He was our care taker in the best possible way. I'm still learning how to do this. Even as I write this sitting with my morning coffee, I'm not sure if I remembered to check that the front door was locked last night.
As a minister by vocation, what I do know about is being a care giver, someone who offers compassion, love and kindness, who accompanies others on their spiritual journeys. I'm trying to do this for my family from the mess of our house within the mess of this crappy situation. And many people are supporting us in this. What a blessing. Later today friends are coming over to help us clean the house. Another friend has been fielding phone calls from Paul's friends and fans in the music industry. We are all ministering to each other.
Paul has been our care taker but he also was our care giver. He got things done without fuss or fanfare. And now I am trying to do the same for him, to think of him first. This is hard for me because I've always been fairly independent. But I realize it was an independence bolstered by his very practical acts of love. And I realize that is what it is. Living love tangibly. We have never been wordy about this but I've never doubted his love. It has been a gift. And I'm learning daily. Soon I'm going to even figure out the washing machine.
Please mark your calendars for the Super Duper Show - Triubute to Paul Leahy, January 27.
If you'd like to support the gofundme campaign that Paul's friends have started, you can find it here:
musings of someone spiritual and oddly religious
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