On caregiving ... and care taking

I had a lot of time to think during my recent hospital stay. Really, beside sleeping, getting fluids and antibiotics pumped into me, eating 'gourmet' meals and urinating nonstop (it seems), there wasn’t much else to do. I tried to read, watch movies and write — but my attention span was nonexistent, so thinking it was. 

I thought about a lot of things: how my travel adventures were temporarily paused because of my illness; what the 'lesson' in this illness was (slow down, have gratitude, ask for help and don’t power through everything alone) among them; how lucky I was my blood culture work hit an emergency doctor's radar and he was able to get a hold of me before things went even further south; how lucky I was going to be leaving hospital without a bill; how amazing the care I had was. I also thought about angel food cake with whipped cream and peaches in syrup; Costco hot dogs; dill pickle potato chips. There was a lot of time to think.

The one thing I thought about repeatedly was caregiving once I left the hospital. I was lucky to be leaving in reasonably good health except for being lethargic and constantly tired. When I was discharged, my personal battery life was maybe 60 per cent at best. And I was going home to take care of myself. Meal prep, laundry, housework, yardwork (although thankfully most of that was done in preparation for winter). I have family and friends I can ask for help but, me being me, part of my recovery plan was to push through my exhaustion and do things myself. Apparently, the part of the lesson about not being a stubborn ass was going to take longer to sink in.

I was prepared to take care of myself and I am taking care of myself. I am, after all, the caregiver, not the patient. In my mind anyway.

Caregiver. That’s my role. When My Favourite Husband (MFH) was alive, that became who I was. As his kidney disease progressed and the goal became to keep him healthy enough for a transplant, my role in all of this was to take on, well, everything. I worked outside of the home. I took care of everything inside the house and outside of the house. MFH simply did not have the physical strength to contribute to accomplishing any task. And that was OK. He tried — God and I know he tried — but, well, he just couldn’t. And so I did. I also became his social life as he became more housebound. We watched TV together, sat outside on the patio together, cleaned his garage together. We had discussions about the world, about life, about almost everything except his failing health. On the days where he lost his faith that a transplant would happen, I had faith for both of us. 

I shoved down my feelings and bit my tongue anytime he picked a fight and excused his words because I didn’t want to argue. I didn’t want to upset him. Over time, my marriage — which was based on two-way communication, based on mutual expressions of love, joy and disagreement — became one-way channels of expression over topics as I swallowed and shoved down my feelings to have a calm, steady house. 

All of this was meant to be a part of his caregiving plan — take care of him physically, mentally, emotionally. I gladly did it. Without thinking twice, I would gladly do it again. 

But it cost me. I didn’t realize the price I paid until MFH died. In addition to the loss of the physical presence of the love of my life, the loss of his voice, the loss of his arms around me and the love in those arms, the loss of being his wife and partner was the loss of my role as caregiver. All tasks still fell on me for completion. That hadn’t changed. But caring for him? That role had ended. And I was lost. I was released from caring for him but it wasn’t the release that I had pictured. I had envisioned a transplant and recovery back to a quality of life where he cared for his own needs and we went back to equal partners in our marriage. 

Who was I going to care for now? Myself? I’m not sure I remembered how to look after myself. I didn’t know how to be the centre of my own world. I didn’t know how to be sick physically because (thankfully) I hadn’t been sick. I powered through any minor ailment. In addition to everything else that MFH's death influenced, the shift from 'we' to 'me,' the focus back to my needs, my wants and putting me first has been the hardest. It’s a mindset that comes with guilt for putting me at the forefront .It comes with relearning things such as expressing my thoughts and opinions (kindly, respectfully but out loud) because differences in opinions are healthy. 

It’s learning I don’t have to power through when I’m physically unwell and that rest and recovery are good for me, too. It’s also about taking care of myself mentally, doing things that will help stop stress triggers — things like exercising and having quiet time. 

I’ve been looking after myself for over two years now, so I know that I can do it. I just need to remind myself I need to do it until it becomes second nature.

❤️