Across the UK, many people quietly give up jobs, move home – or both – to take on the invisible, often isolating role of caring for ageing parents, sometimes for years.
It can be mentally draining and financially risky to do so, but also full of love, laughter and unexpected joy. When the caring ends, grief and complex emotions collide with the challenge of rebuilding a life and re-entering the workplace.
Gill Oakley, who moved 150 miles to become her Mum’s full-time carer, knows this first-hand. For seven years she looked after her mother until the end.
Gill shared her story with us, to shine a light on both the ups and downs of this life-changing role, and the challenges faced when caring ends.
When did your ‘eldering’ journey’ with your Mum begin?
“My ‘eldering journey’ began in 2017. At the time I was 54, working full time for a medical company in Cambridge, and my mum was living in Staffordshire.
Mum had always enjoyed visiting Cambridge after Dad died, but her visits gradually became longer and longer. Towards the end of 2016 it was becoming increasingly obvious that she was finding it harder to manage and she was talking about having ‘off days’. It later turned out that she was having a kind of epileptic seizure, but we didn’t know that at the time.
As I lived in Cambridge and my sister lived in Wales, Mum didn’t have either of us close by and able to pop in. She was still loving life and full of enthusiasm most days, so I thought long and hard as to the best way to move forward.”
“This was my only chance to make up for lost time with Mum.”
How did you decide the best way forward to support your mum?
“Because I had left home at 17, for work, Mum and I hadn’t really spent a lot of time together as adults. We got on really well when she visited and I realised that this was my only chance to make up for lost time.
I was not in a financial position to be able to give up work and look after her in Cambridge, so I made the decision to sell up and move somewhere where I could afford to buy a property mortgage free for both of us to live in.
After researching many different areas, we finally decided on Beverley in East Yorkshire. The remaining equity from my Cambridge house sale enabled me to survive financially for the next few years.
The most difficult part of the decision was leaving my friends and work colleagues (also friends). I was also concerned about moving Mum from the town she had lived for all her life. Fortunately, she was up for the move and loved Beverley.”
What were some of the joys of caring for your mum, and how did you both handle the challenges of this period?
“It was lovely to get to truly know her. She needed a wheelchair, but we didn’t let that stop us. We would regularly go for trips out and even small trips away, with the help of friends. I was very lucky in that my friends travelled up to see us. Mum loved interacting with all my friends and their children. We also had kind and supportive neighbours, which we were very grateful for.
Like me, my mum was a relaxed ‘glass half full’ kind of person and as things got more challenging over the years, we always tried to keep a sense of humour.
Every time we faced with a downward trajectory, we had to get used to the new normal. I was lucky in that she was of sound mind so we are able to discuss difficult issues and I was able to ask permission when needing to help in a personal way. She was very grateful for what I did and often used to say “I don’t know what I would do without you”.”
“We would regularly go for trips out and even small trips away, with the help of friends.”
How did you make time for yourself while caring? Were you able to get any outside support?
“My sister was very good and covered for me if I had special events to go to, so I didn’t miss out.
Getting care in was expensive and often could not be guaranteed so firm plans could not be made.
Many companies I approached said they would put it in the diary but if their staff were needed in homes, for regulars etc, then that (understandably) would take priority.
As I was a full-time carer, I was offered a pass for the local leisure centre but I was unable to use it as I could not leave her to attend. Instead, I started a ballet class for one hour a week, which was (and still is) a real highlight of the week. The pass for the local leisure centre stopped as soon as my mum died. It would have been nice for it to continue for a few weeks afterwards to help me unwind and find a new routine.”
What tools or technology helped you care for her at home?
“I found a few gadgets on the internet, which were useful. She had a device on her wrist that she could press to ring for help, and latterly (after a couple of falls) a mat that if she stood on, it would alert me.
These helped her to stay at home until the point I was sleeping on the landing so that I could get to her quickly and was being woken constantly.
At this point I was so tired and emotional, that I didn’t have the head space to look into alternatives.”
At what point did you realise you couldn’t continue to care for her at home?
“Mum and I had seven good years but the last few months became challenging. She was getting frequent urine infections which made her very confused, and I was unable to lift her as she was a dead weight.
It took my sister visiting to highlight the fact that realistically, I could no longer manage, and she arranged for Mum to have some respite care in a home just around the corner.”
How did you find the transition of moving your mum into a care home?
“I was lucky that the home was very proactive and came round to assess Mum straight after my sister contacted them about getting respite. They were very kind and helpful, even changing the room they had allocated for her when they realised she loved her garden. The room she had been allocated was upstairs, but they changed it to a downstairs one so she could look out at the flowers and the birds.
I was very relieved that Mum settled in so quickly and soon made friends with all her carers, as it broke my heart to have to do it.
Luckily, she too realised that it was a necessity. Because it was so close to home, initially, she could still come home for most of the day and enjoy her garden and have trips into town, but she was safe at night.
The staff at the care home were very kind to me, as well as Mum, and made me welcome any time of day or night. I think I needed this as much as she did. It made a huge difference as we were able to be together right up until the end.”
What were some of your biggest worries during this time?
“As time went on, I became increasingly concerned about what would happen when Mum’s money ran out in terms of paying the care home fees.
The home she was in cost twice what the council was prepared to pay, but we did not want to move her from such a lovely place. So, my sister took on extra work, and I sold my house and bought a flat to release some equity, in order to make up the gap when the time came.
It ended up not being an issue. Mum was about a month away from running out of funds when she died.”
What do you wish you’d known that could have helped you?
“I missed out on financial help in the form of Carer’s Allowance, as I was led to believe that I would not have been eligible, when it appears I would have been.
I noticed that for Mum to be eligible for help, she needed to have a long-term health condition, such as diabetes or heart issues. If you are simply old and everything is wearing out and not working properly, meaning you can no longer manage alone, you fall through the cracks.
This doesn’t seem fair. I wonder about what would have happened if she had been on her own.”
“Only after she died did I find out I’d been entitled to Carer’s Allowance all along.”
How have you found getting back into work post-caring?
“Despite having saved the state a fortune in care, there doesn’t seem to be anything to support people returning to the work force when their caring role ends.
Having been out of the job market for many years, it would appear now all job applications are done online, which makes it very difficult to explain your situation and what you have to offer.
I applied for a few jobs initially and never even got a response. Now I am just trying to eek out my savings as I still have five years to manage before I am eligible for a state pension.
I’m lucky I can do this. When Mum died, I had already sold the house and moved into my new flat, so I have some equity from the sale to live off. The sad thing is many people do not have this option.”
What has this experience taught you about ageing and caring, and your own ageing?
“The whole experience has highlighted to me the difficulties of ageing in a dignified way, especially as – with no children of my own – I will have no one to advocate for me.
I think resources will get more stretched and people are going to slip though the net, especially if they don’t have independent financial means.
The caring profession is not given the credit it deserves, and the pay does not reflect the importance of the role. As financial pressures rise, I think young people are simply not going to be able to afford to go into the profession.”
“Despite all the challenges, I would do it all again in a heartbeat.”
What would you say to anyone considering moving or giving up work to care for their parent?
“The role of full-time carer is not something to be taken on lightly. You need to be incredibly patient and upbeat, but if you are able, it is a wonderful privilege and something you will not regret.
We were lucky that I was in a position where I was able to do it and that we moved to such a friendly town, where there is still a lot of community spirit and lots going on. Mum loved all the events in the town and having access to a cinema and theatre close to home. It helped that we had lots of interesting things to do close at hand.
Despite all the challenges, I still see the whole experience as very positive and would do it all again in a heartbeat. We had a wonderful few years and for that I am very grateful.”
Do you have an Eldering story to share that could help others? Email us at hello@eldering.co.uk
