‘My sister and I were best friends – now she’s in a care home at the age of 43’ Leave a comment

Last week, I managed to steal 20 minutes to myself by going to the supermarket. It was the middle of the afternoon and – after a morning of playing dress-up, Cluedo and taking a friend’s dog for a walk – all my two children, aged seven and four, wanted to do was watch a film. I tried to resist the urge to give into screen time. But my brain said: “If you go alone, you can listen to your audiobook”. And I really needed that. So I agreed. 

I got in the car, turned on my audiobook. A minute later, it stopped, and I realised my phone was ringing. I glanced over at it on the passenger seat. My sister. I’d have to call back later. The audiobook came back on, then stopped again. My sister, calling again. 

Over the course of the 10 minute drive, she must have called a dozen times. By the time I pulled into a parking space, I was close to tears. I sent a message saying that I’d ring later. She called again. I was overwhelmed with frustration, anger and shame. I was angry with her for calling over and over when there was clearly a reason why I wasn’t answering. And more than that, I was angry with myself for being angry with her. 

My older sister lives in a care home. She is 43 and had a stroke when she was 38 that has left her severely disabled. I know that she gets stuck in a loop sometimes, particularly with her phone; I’ve seen it happen. She doesn’t know how to stop. That’s what had happened, I realised later. She’d called, I hadn’t answered, her phone had asked if she wanted to call again, she’d said yes. Over and over. She hadn’t meant to make me feel stressed.

Often, she calls when I can’t talk; in the middle of bathtime, or when I’m doing the school run. These times are so ingrained in my day-to-day that I almost can’t believe she’s not aware of their significance. I get frustrated at her inability to realise that I’m busy, even though I know, really, that she can’t retain that information; that her brain doesn’t work in that way any more; that the thought occurs to her to call me, her only sister, and she just does it. And too often, I don’t pick up. 

As children, we weren’t that close. We didn’t fight, but we didn’t have a lot in common either. The two and a half years between our ages, which feels like nothing now, seemed huge. We used to pass each other in the school corridors and not speak. 

Then, when she was 18 and I was 16, our parents moved us 100 miles from where we’d grown up, and we only had one another to rely on. That summer, before she went to university and I started my A levels, lying in the garden in a town where we knew no one but each other, we became best friends. 

We stayed that way through our early adulthood, despite mostly living at a distance. For one year in our early 20s, my husband (then boyfriend), my sister and I lived together, but then she settled in a village and we moved to London. In 2015, when my husband and I decided we were done with life in the capital, we moved with our toddler son to the same village where my sister and her family lived. My two-year-old and her four-year-old were going to grow up together, and I was ecstatic. To top it all off, we both got pregnant with our second children within a month of each other. 

But things didn’t go to plan, in every possible way. Halfway through my pregnancy I was diagnosed with breast cancer, and nine days after she gave birth, she had a stroke. For a year or so, everyone’s focus was on survival. 

It became clear that I was going to recover and she was not. A void had opened up between our lives and I wasn’t sure how to bridge it. When I visited her in hospital, and later in the care home, I didn’t know how to reach her. It was like starting again, with someone I didn’t know. 

That day, once I was home and had put the shopping away and made sure the children were happy, I called her back.

She picked up, and I asked if she had needed me for something. She didn’t say very much. She doesn’t usually say very much. I asked what she was doing, and she said she was watching a TV programme that I’d never seen. I told her some of the events of my day, wondering, as I always do, whether she likes to know these small things or whether it’s painful for her to hear about the kind of life she might have been living. I’m acutely aware that every anecdote about what my daughter is doing must bring to mind the son she’s missed out on mothering.

In another life, in the life we should have had, my sister wouldn’t call when I was putting the children to bed, because she’d be putting hers to bed, too. We would talk in the less hectic moments, and our conversations wouldn’t be one way, because she would remember to ask me things, and she would have things in her life to tell me about. 

But we have been dealt this hand, and as a result, her life is empty. Not without meaning, but empty of activity, of admin, of tasks. We were told that any significant improvements, in terms of her recovery, would come in the first year or two, and now we’re almost five years down the line. She won’t walk again; she might not get to go home. She sleeps and watches TV, and has physio. When we’re not locked down, she has visitors – her husband and sons, our parents, me, a handful of close friends. We’re hopeful that visits will resume soon, but for now, she has to make do with video calls. 

Is it any wonder that in those long, blank hours, she has no concept of the fact that, a few miles away, I am struggling to hold things together? Her life is too empty, and mine is too full. This has been true for a long time but the pandemic has crystallised it. And more than that, it’s made me want to bridge the gap. Or try to, at least.

It strikes me that this is a problem that runs right through this pandemic. There are people who are lonely or bored, with too much time on their hands – retired, or unemployed, or furloughed. And there are people who are desperately trying to fit too much into their days, as if their job and their children and their exercise regime and their friendships are too many clothes, and their days are a suitcase that won’t zip up, no matter how many times they rearrange things. 

So I’m going to try harder to answer the phone when my sister calls, or to phone back as soon as I can. This frantic pace my life is moving at is tough. It’s overwhelming. It’s too much. But that emptiness? That slow tick through seconds, minutes, hours, with every day much like the last? I’m sure that’s even harder. 

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