Caring in a multitude of ways

March 8, 2021
October 23, 2021

By anonymous carer

It really is only parents who call you on the landline isn’t it? Which is why every time the phone would ring, my heart would beat that little bit faster and I would get that worried, apprehensive feeling in my stomach as I steeled myself to answer. What’s happened now? 

Caring at a distance is not the first thing that comes to mind when we think about caring. Living 150 miles away from someone and being their carer sounds like a contradiction. But for me it was a reality, as it is for lots of people who have moved away from their home town to find that a parent or elderly relative needs support to live safely. And it carries its own unique set of challenges, some of which I want to share with you.   

Being a carer for someone who lives a long way from you is not often talked about, which is why I wanted to shine a light on it. It is easy to feel excluded, as carers are frequently thought of as  people who live in the same house or a few doors away. I never really saw my experience represented anywhere.

Undoubtedly some of the challenges of caring, whether at home 24/7 or 150 miles apart, are very similar. But I do think that being far away can exacerbate some of those challenges. I’m sure all carers might struggle to develop relationships with healthcare professionals or local services, but not living locally adds an extra layer of complexity. I spent lots of time travelling back and forth to ensure I attended as many medical appointments as I could. Fitting in appointments around my work commitments meant I did not really have any flexibility if an appointment was cancelled that day, and trying to catch people on the phone when at work was incredibly frustrating. Despite my request to be copied into correspondence because mum was unlikely to remember appointments or conversations, I was routinely not included. 

My train journey would take three and half hours and during that time trepidation would build as I was never sure exactly what I would find. Having limited time, in short, intense bursts, meant that visits would become less about spending time together and become more task-orientated. 

I spent a lot of time trying to troubleshoot and solve problems, and predict what challenges might arise after I’d gone. Because I wasn’t local, I didn’t really know mum’s friends and so it wasn’t easy to plug into her network for support. When I was rushing to leave (because it always was a rush), I would feel stress and guilt that I wasn’t there more often and we didn’t spend much quality time together. I also felt an increasing sense of responsibility to organise everything, liaise with everyone and make sure mum was as safe and as happy as she could be.   

Trying to solve problems over the phone became increasingly difficult as mum would become flustered as I tried to talk through possible solutions. I felt so impotent because I couldn’t just pop round do what needed to be done, then and there. And I felt so guilty and a real sense of failure that I wasn’t supporting her well enough. 

I’m sure those feelings of worry, guilt and responsibility are the same for lots of carers. It was always there, that dull ache in the background, that baseline feeling of tension and fear I carried with me. When the phone rang all those feelings surged to the fore as I answered. 

As with many carers, I felt very alone. Yes, I could ‘escape’ by going out with friends, but as I said the worry was a constant undercurrent. And my partner, my friends – even my brother who lived abroad – didn’t understand what it was like. How could they? So I write this for all those people who are doing their absolute best to care for and support someone hundreds of miles away. I see you. And I salute you.

Click here to see Dr Sarah Robertson report on her research project, What is it like to care for a parent living with dementia from a distance? Liverpool Dementia & Ageing Research Forum July 2020

Caring in a
multitude of ways
Caring at a distance is not the first thing that comes to mind when we think about caring, but it is the experience of many carers
Being a carer
Do words matter?