In the midst of caring...

In late 2022 I took a RISD class entitled Journal and Narrative. It was a six week course with different aspects each week but running throughout the course was an ongoing journal project. My intention was to journal and chronicle my day to day life being back in my family of origin caring for my aging mother after my father passed away. What follows is excerpts from my final project in the course.

It’s the little things. The reflection of light on the dark windows as the sun rises. It’s the perfect balance of rocks, one on top of the other, lending strength and support to create a sculpture. It’s the hour gained when the clocks turn back even though we lose light so much earlier. It’s the painting of the sink to change from white to blue. It’s the repeated question, again and then again, of something you just answered. It’s the little things that add weight and substance to our lives and add to, perhaps, significant changes over time, changes you didn’t envision and therefore didn’t see coming.

It’s cycles and changes and sometimes shocks that keep you moving forward without knowing how you got from one place to the other. It’s being both present, shit needs to get done, but also nostalgic for the past and wondering what the future will look like. It is multidimensionality at its core. This life is not linear. It is moving and dynamic and the more I want to press pause - I need a moment to breathe/rest/consider - the less I am able to grasp; hold onto time, make sense of the here and now.

My mother. My mother, what can I say? She is both here and not. Her memory is lucid and jumbled. I have been seeking a diagnosis for her because I feel I’d be better able to cope, manage, live if I had a tangible diagnosis. That seems farcical, though. What does a diagnosis matter if it doesn’t come with instructions, with a plan? I still need to clean up the mess. I still need to keep her safe. I still need to find a balance in my life that doesn’t destroy me. Or her. Or my marriage.

There are spills every day. Usually red wine. Sometimes milk or tomato juice. The kitchen looks like a hurricane came through. It’s hard to imagine why every drawer and cupboard needs to be opened. She’s great at getting things open, or turned on, but the part of her brain needed to complete tasks, like closing cupboards and drawers, turning off taps or gas burners, seems fried from the last stroke or the grief of losing her husband of 61 years. She is a wrecking ball.

A year ago I was here, in this same spot but with different duties. Although my life was in Australia I had a tether here, to this place. My US address. Eight boxes of memories in an attic. Parents. A last century existence. While Covid brought the world to its knees, Australia shut its borders. No one in. No one out. Honestly, a break from the yearly visits was a gift. Of course, though, at a price. I was unaware of how bad it had gotten for my mother, taking care of my father, until a call came (or was it a text?) from a friend on the other side of the world saying, ‘She’s okay but your mother was flown off the island today. Suspected stroke. She’s at RIH and I’m here sitting with your dad until your brother gets here from Georgia.’ This was a Friday in late October 2021 - my parent’s 61st wedding anniversary. Australia lifted her border restrictions the following Monday and I arrived in Boston the next Friday, a week later, on the 5th of November.

My kiwi husband and I had been making plans to move to the states mid-2022, after our first grandchild was born in New Zealand in April, to help my parents out. To be clear, this was his idea, not mine. When I arrived at the rehab to see my mom on that November day last year, I recoiled. I couldn’t do it. I didn’t want to leave Australia, a life, MY life, to move to a country I had consciously left over 25 years before, to care for my unwell mother. I’m a helper but I’m not a carer. This was further compounded when I got to the island a few days later to care for my 94 year old father. I was so ill prepared for what I walked into, alone, on a cold and dark November evening. The ageing of the elderly is similar to the ageing of babies. Blink and there’s a change. Two and a half years had passed since I’d seen my dad. He was so frail I couldn’t hug him without causing pain. Mind you, his pain threshold was always extremely low. I took the carer home who’d been with him that day, a chatty Kathy who drove us all crazy for her non-stop banter but whose heart gave us all moment to pause, and returned to take over care duties of my father.

I had never spent much time alone with my father. My mother was always around, acted as a buffer between us at times. I blamed him for putting them in the position they were in now having to be looked after by the community where they chose to age in place, without consideration of who was going to look after them. My father’s adamant decision to die on the island brought my mother to the point of stroke - how else could she get a break from his incessant needs? After one day of caring for him I was ready to kill him. How had she managed this for so long?

I went into such a backwards spin; there was no way I could move here if my father was still alive. He was all consuming. I was clear this move could not be at the expense of my own well-being. (Did you know 63% of care givers die before the people they care for? This statistic is horrifying but understandable.)

When I brought my mother home from rehab a couple weeks later, it became crystal clear there was no way my mother could take up care duties of my dad again. Simply no fucking way. As we sat downstairs, trying to have lunch, my father was upstairs, both hands covered in his own shit as he tried to dig out a fecal impaction. That was it. He’d have to go. We would not be able to honour his wish to die on the island. I called the nurse. She suggested hospice. We said yes.

By the time I left the island on November 30th, we had hospice on board and my mother set up in her own space on the main floor. We had carers in place for both of them. And I was clear that we would be moving to the states but on a revised time schedule. We were needed now and I set our goal of packing up and selling off our lives at three months. We’d be back in the spring instead of mid-summer.

I knew when I left the island I wouldn’t be seeing my dad again. As we said goodbye for the last time, and took a last selfie, he said he thought he might stick around until we got back. I told him, laughing, that he didn’t have to. He died three weeks later, in his bed, at home, just as he had wanted.

To think back on what this past year has entailed makes me tired and brings far too many tears. We arrived back here at the end of March, to an angry and combative woman who bore little resemblance to the mother I grew up with, or even the mother I had left four months previously.