I’ve been largely absent here for most of the year, posting irregularly. It’s been a busy time, certainly – the music business, at least my corner of it, has come roaring back in 2022, Omicron be damned! But it hasn’t been so much the work-related time constraints, but more about psychic space.
Paul was rushed to the hospital on January 28 with acute diverticulitis which nearly perforated his large intestine. What has followed is 8 months in and out of the hospital, a truly frightening C-diff infection (look it up, it’s a nasty bug), scheduled surgery, unscheduled procedures, a lot of unexpected complications and many frustrating calls with our health insurance. His prognosis is good long-term, but the short-term healing that now needs to happen will take more time than anticipated. He’s still got some pain, which is terribly wearing.
Which is all to say, it’s been a challenging time. It’s certainly awful for him, experiencing never-ending health issues and dealing with pain and the side effect of medications. He’s been through so much it sometimes feels unfair (of course the universe takes no account of fairness – a topic for another post). And it’s been a difficult time for me, from two angles; first, to watch a loved one suffer so much, and second, to take on the demanding task of caregiving.
I have a close friend whose father-in-law moved in a year ago. He’s mobile but frail and recently recovered from major surgery. While he’s largely independent, I watch how she cares for him, making sure he’s fed, creating projects for them to do together after her own demanding workday, keeping track of his needs and insuring that he has interaction and stimulus. Her patience and compassion are inspiring.
Try as I might, I’ve had a much harder time with caregiving. Part of the challenge is practical. As the partner who’s rarely home and has the more demanding schedule, I don’t do much housework. Well, I fold laundry, because Paul hates it. But as the partner who runs his own business from home and has more agency in regards to his time, he most of the housework – cooking, grocery shopping, cleaning/laundry, bill-paying, keeping track of vet appointments and teeth cleanings. We prioritize my work because it constitutes a majority of our income. Paul in turn adeptly takes care of a majority of the rest of our lives and has become expert at anticipating my needs when I return from a long stretch on the road. He’s a good caregiver.
I, on the other hand, have felt like I’ve been a middling one, at best. After the initial shock of his first hospitalization, we fell into the uneven rhythm of him improving for a while, then needing to return to the hospital. And as I couldn’t stop working, I found myself making arrangements – for transportation and meals, for friends and family to stay with him – as I was boarding a flight, or during a rehearsal break. And when I was home, my days were filled with the tasks usually taken on by Paul – cooking and cleaning, picking up medication and running errands – as well as trying to make him as comfortable as I could. I felt constantly harried and behind the eight ball, with not enough time to study music for my next gig, much less a spare half-hour for a run or a few moments for myself.
And it made me frustrated, and resentful, and irritable, which in turn made me feel like I was an awful person. I did the best I could with what needed to be done, but I found myself quick to anger and slow to reason, and constantly forgetting or losing things. I felt terribly impatient, and often unable to draw from my sense of compassion. Some days, during one of his six hospital stays, I would cut short my visit to Paul on some excuse – I had a Zoom call, I needed to get to FedEx before it closed – when really I just didn’t have the mental and emotional energy to give him the attention and care he needed. I needed to run away.
I felt like a terrible caregiver.
Which is not a fair assessment, because caregiving is hard. And with the amount of travel and work I’ve had over the last eight months, I haven’t really had more than a day or two to recharge. I grappled with bouts of depression. Sleep eluded me. Focusing my energy on another person when I didn’t have enough for myself completely drained my batteries. To mix metaphors, I’ve been running on fumes.
Paul had a lengthy stay after his surgery last month, and things are still far from normal. And while I’m still struggling with the sense that I’m no good at this – and still feeling resentful that we’ve both been thrust into this situation – I’m trying to cut myself a little slack. I’ve been catching my own scathing self-judgments before they start dragging me down. Directing more patience towards myself as well as to Paul had been helpful, as has more mindfully carving out time just for me. I’ve been reminding myself that taking care of my own needs allows me to better be able to meet his needs.
As he slowly improves, I’ve felt less worried when I leave for work. Things are getting better for both of us, for which I’m grateful.
Part of me wishes that I could draw some more conclusions from my experience, or have some words of insight or wisdom to wrap up this post. But I don’t, and I accept that. Part of the reason I started this blog was for me to have the space to externalize my inner ruminations, and I’ve forgotten the sense of relief that writing provides.
So I’ll leave you with this; caregiving is extraordinarily demanding, and I maintain enormous respect for all who are doing this challenging work.
*A lot has happened since I penned this post. Paul’s back in the hospital.
2 thoughts on “Take care”
So sorry to hear about all these struggles. I have no doubt you will pull through. Good luck and best wishes for Paul’s recovery as well. (We saw you at the Pixar concert in July — such a thrill!)
Bonjour La Maestra !
Yes, writing down on paper your thoughts is important. Indeed. I can only encourage you to keep doing so.
My thoughts are with you and Paul. His medical condition will stabilize. He might have to change some stuff in his diet. A nutritionist is probably following him. Late brother H. Urbain (not late brother Jesus Camàra who was friend with CC) suffered from diverticulitis since he was 45. He passed away in may 2020 not from that health problem. He was 96.
All the best & my thoughts are with you.