A Caregiver's Journey

I am already awake this morning, even though the sky is still dark and the hallways are silent. I woke up on my mother’s couch this morning, stiff, tired, and with a vague headache. My mother was still asleep and so I snuck out to the dining room to get myself a coffee. There were already a few residents waiting for breakfast. I could hear whispers. I had forgotten to put on my shoes and so clearly I wasn’t just arriving. I expect my mother will be the topic of this morning’s gossip. Why did her daughter spend the night? I wonder what’s wrong with her mother? It is the one thing my mother does not like about living communally - gossip. I tell her that people talk because they are concerned. My mother scoffs and informs me that they are just nosy and can’t mind their own business.

I line up for the coffee machine which, in addition to a good strong cup of coffee, also makes espressos and specialty coffees. A man my age joins the line. He asks me what time breakfast starts. He has also spent the night on his mother’s couch.

Last night, just as I was falling asleep, the phone rang. The receptionist here at the seniors’ independent living residence informed me that my mother had fallen. My husband and I arrived at the same time as the fire truck. Paramedics showed up a few minutes later. Thankfully, she was fine. Thankfully, she felt herself starting to fall and was able to slide slowly to the floor. Her Lifeline, which she wears around her neck, registered the fall and within minutes they had checked on her and called the residence front desk.

As I process yet another incident with my aging mother, I think to myself, what is it that I want to share with you? I want to write about how it sucks growing old and how difficult it is for an 86-year-old woman to give up her independence and have to turn to others for help. I want to write about how my mother has been able to access subsidized housing and quality health care, care that I think should be a standard for all seniors. I want to share with you about how difficult it is for me, a university-educated woman who has worked in social services, to navigate this road map of seniors’ services. I can only imagine how many seniors are missing out on much-needed supports.

However, many of you have been through similar situations, and I expect you are now nodding in agreement as I share my experiences.

I guess more than anything, I am writing this because I want you to know that if you are or have gone through similar experiences, I feel for you - because this sucks! This is not how I envisioned my life right now.

My husband is worried about me. He is the one who witnesses my tears after a particularly difficult day when my mother’s anger is directed at me, when issues that I thought I had resolved years ago, feel raw and new. There are days I feel like a child again, criticized and reprimanded. I spend far too many hours trying to coordinate my mother’s care. I visit her every day because, until just this week, I have been the only visitor allowed during the pandemic. But even now, as restrictions lift, there really isn’t anyone else to visit her. She has no friends except for a neighbour who is facing her own challenges. And as for other family visiting, well, as a mother, mother-in-law, and grandmother, she has never been an easy person. Relationships with most of her family members are strained.

I am mentally exhausted. I wonder if I am doing too much, enabling too much. I feel a fair measure of guilt, as much of what I do comes from a place of obligation. As my father lay dying ten years ago, I promised him I would take care of my mother. He died an hour later and I often wonder if he was able to let go because of my promise. That is a lot of weight to carry!

I have had to give up so much these last months. I am supposed to be spending the summer at our island home, researching a book I am planning to write. I should be going for long walks with my old dog and looking forward to a glass of crisp white wine and a game of cribbage on the deck with my husband at the end of the day.

I am reluctant to make commitments. My girls want to head off on a long-awaited mother-daughter weekend but I am uncertain what last-minute medical conflicts may arise. I have joined a discussion group on Parker Palmer’s book, A Hidden Wholeness but I am uncertain whether I can make the sessions. I have offered to help proof an anthology of autobiographical stories but I am not sure if I can meet deadlines. Everyone is gracious and understanding, and I appreciate that. But the point is that these are the things I want to be doing this summer!

I am in a rut. The wrapping up of a career during a pandemic has been challenging and it has been difficult to paddle those rough waters. But I had finally found some calmer waters, a river I was looking forward to meandering along as I continue to head north. Little did I know that this river had rapids hidden around the corner!

I am frustrated and exhausted as I write this. I am angry that this has fallen on my shoulders. And then I feel guilty because I know others are struggling with so much more. I expect what I am writing must resonate with some of you, maybe with a lot of you. I wonder how you get through your days. I wonder what kind of support you have. I hold you in my heart. And I hold space for myself. I take time to enjoy life’s simple pleasures. I am thankful for my daughters and friends, and the comfort of my husband’s arms.

It is now Sunday morning and as I sit writing in my sunny office watching a gentle breeze blow the curtains, my mother lies in a hospital bed. She had hip surgery five weeks ago. Her recovery started off well but then pain slowed her process. Her medical team thought the pain was due to physiotherapy and her pain medication was increased. The pain did not diminish. She had a follow-up visit with the surgeon on Wednesday and x-rays revealed that a screw supporting the bolt that was keeping her hip together, had come loose. My poor mother, no wonder she was in so much pain! She will be going under the knife again in a couple of hours. She will be back to step one in her recovery. And I will be back to coordinating her care, visiting her daily, and ensuring that she is comfortable and supported.