Reflections On Being A Long Distance Carer: A Personal Perspective

Like many other people who have taken early retirement. I’m the main carer for my Mum and Dad. However my situation is complicated by the fact they live 250 miles away from Devon. Getting to my old childhood home in Essex is a long old haul. At best my trip by car or train takes six hours but there’s often delays on the line or traffic jams. My brother, who’s been a great help, lives a bit closer to my parents but even he’s a good two hour drive away.

At the time of writing this post both my brother and I are staying at Mum and Dad’s house. My plans were to make a brief visit to sort out some paperwork but Mum suddenly lost the ability to walk. I’m not sure when I’ll be going home now. So I thought I’d share my experience about my long distance caring role.

There isn’t an awful lot of information available about this type of arrangement. Those in this role face different challenges compared to where the carer lives nearby or in the same household.

Some Background Information

My parents are hardy creatures. Dad, who is well over ninety spent his childhood in London. His hobby was searching for shrapnel on bomb sites with doodlebugs flying overhead. Until recently he went on a long walk to the town centre and back every day, a distance of about four miles. Mum used to tend two allotments. She carried home her veggies on the bicycle that she’s recently gifted to me. Mum and Dad have been very self contained throughout their married life and have no friends or social networks. Through choice they have little contact with people outside the family and don’t like interference in their lives even from family members.

For the last couple of years have noticed signs that my parents have been flagging. Dad’s daily jaunts were getting shorter, Mum’s mobility was getting worse and she no longer rode that bike The house got grubbier and more untidy. Paperwork was getting harder and harder to manage. While my parents were okay doing day to day tasks they seemed completely flummoxed when confronted with anything out of the ordinary. At the start my brother and I decided to leave them to it. It was so difficult to challenge them as they fought back with a vengeance. What’s more they were still getting by albeit in a pretty muddled way.

Very gradually though they’ve allowed us to take over some of the chores. Now I manage all their finances in my role as power of attorney. I pay bills and order a weekly grocery shop from Sainsbury’s. That normally goes well until I forget the evaporated milk!

How Things Hotted Up

Earlier this year bigger bits of the proverbial stuff began hitting the fan. Dad developed chronic heart problems, ending up in hospital a couple of times. He’s stable now but on palliative care team’s caseload. To complicate matters he’s also registered severely sight impaired. Mum fell twice in quick succession. At some stage through these shenanigans my parents admitted they needed extra support. Even so they’re still not good at alerting us when help is required.

Attempts to put in paid carers have not succeeded. Mum and Dad weren’t having it. Only the gardener survived the cull. My parents are good at pulling the wool over the eyes of people who don’t know them well. So they’ve avoided outside support. Teaching them to consistently use mobile phones hasn’t been worked either nor has getting them to wear pendant alarms around their necks.

The only viable solution has been to increase family visits. That mainly falls on me and my brother but other members of my household have also played their part. My visits have been getting longer and the gaps between them shorter. Sometimes I’ll leave for a brief stay but can never guarantee I’ll be home as planned. Things crop up, like during this time around.

Even when I’m not physically present I’m always on call 24/7. I might be needed to provide long distance advice, fill in forms or to up sticks and hot foot it back to Essex. Barely a day goes by when there isn’t something. Thankfully there was a relative lull when we went away on our recent Spanish holiday. I only needed to man my own personal hotline during my time away. Even so I had a contingency plan to fly back the UK if needed. Thank goodness I didn’t have to use it.

The Practical Impact

Let’s say from the outset that I don’t begrudge helping my folks out. After all I was a little sod when I was younger so it’s payback time! But caring has become the main focus of my life and takes precedence over anything happening in my home life. A lot of projects are on hold and the allotments are weed ridden. I wonder how I’d have been able to juggle looking after my parents alongside full time employment. I thank my lucky stars that I’m retired instead.

When I first left work I planned to make extra money to top up my pension. Last year I started a mosaic business. But even with the flexibility that self employment offers it’s not feasible to continue. I just can’t be very reliable. So my plans to dazzle the crafting market are on hold.

I’m registered as a carer but don’t receive financial support. Even though I qualify for Carer’s Allowance by virtue of being on call all the time my NHS pension is just about the earnings threshold. However this limit increases in 2024/25 and my back of the envelope calculation suggests that the state could be paying me pocket money in the next financial year. Until then I have to raid my savings if I want a treat.

My inability to be reliable means that I’m reluctant to make appointments in advance. When I do they invariably have to be cancelled. I never know when I’m going to be called back to Essex. So I’ve learnt my lesson. My lovely friends are understanding and know that they will see me when all this calms down. I’ll also let my doctor’s surgery do the routine blood test that they keep nagging me about too!

The Emotional Impact

In all likelihood the role of carer is going to take an emotional toll. I’ve done a lot of work around my mental health and feel that I’m pretty resilient. Even so I’m not immune to some of the associated stresses. For me, the biggest issue is being on tenterhooks all the time. It’s hard to make any plans as I never know whether I’m going to be called upon to drop everything. I have a significant sense of losing control.

Sometimes I’m called on to help during the night. My worst memory of this goes back a few months when Mum, who was sleeping downstairs after a hip operation, couldn’t rouse Dad when she called him at five in the morning. She phoned and woke me from deep sleep to tell me that she thought he was dead. Luckily he came downstairs just as she was phoning for an ambulance and later popped out to buy himself a bottle of sherry! Even so, after Dad’s miraculous resurrection, my sleep hasn’t been quite as sound as it could be. It’s as if I always have one eye open just in case I’m needed.

What I Do To Take Care of Myself

I’m signed up with a carer’s support organisation local to Mum and Dad but what they are able to provide for me is pretty limited. Anyway I’m not keen on the idea of joining support groups or the like. The self care regime that is specific to my caring role is pretty individualised

• The bedrock is maintaining my morning and evening spiritual practices. I’ll outline these in a later post.
• I try to pack items that help me participate in some of my normal leisure activities. There’s always my laptop so I can write and watch videos but I’ll often bring a book, my swimming or running gear and a skipping rope. I have toyed with bringing my bike on the train but I often travel at short notice and wouldn’t be able to reserve a reservation for it on the train. the thought of cycling across London is also a bit daunting.
• I’ve created my own space in one of the rooms at Mum and Dad’s house which I can call my own.
• I try and see friends as I’m passing through London or Bristol. There’s just one friend left with Essex connections and I meet her for a coffee if I have free time on a visit.
• Speaking to my partner Paul and other distant friends. I retain a sense of connection with my normal life.
• I treat myself to fancy food and drink. While I’m at Mum and Dad’s I seem to consume rather a lot of sushi!

The Future

For the last few years we’ve been trying to persuade Mum and Dad to move nearer to one of their children. You can guess how that went. But a few months back I found a bungalow on the market near my own home and a miracle happened. Mum agreed to move. There’s light at the end of the tunnel. With the increasing input that I’ve had to give the current arrangements wouldn’t have been sustainable for much longer.

Dad isn’t so keen. His mantra at the moment is ‘They say that you shouldn’t move old people’ but trust me I’ve weighed up the pros and cons and it’s the lesser of many other evils.

Of course there’s all the UK property law hurdles to jump before we have the keys in our hands. But we’re getting there. Sometime in early 2025 Mum and Dad will be living around the corner rather than across the country. Now I’m not going into this new arrangement with rose tinted spectacles. I’m absolutely certain that the new arrangements will have their own challenges. But it’s so much easier to get a grasp of services available on my doorstep. I’ve got local knowledge and there’s friends to ask. And I might be able to sleep in my own bed a little more often than I do these days.