Working and caring full time: Chris's story

We're proud to share a message written by Chris, a member of our very own Disability and Carers Network. At EDF, our employee networks are integral to our inclusive culture, they are open to all and support our people whilst advocating for positive change.

I was asked to share my experiences of being a carer. I hope you find this helpful and maybe if you are a carer too, recognise similar things if you are in a similar position.

Recently I was on a call for the Care Concierge company benefit through Legal & General, and I discovered I had been a carer longer than I thought. This was a real moment of clarity for me, and everything started to make sense.

For nearly three years, I have been caring for my mum, Ann, who is now 88, born in Fulham, London and was brought up during the second world war in the Blitz. The reason I say I have been a carer for longer than I thought is that since needing to do shopping, bathing, cleaning, and managing her home as well as mine, this is what you believe caring is when the person you are caring for is physically unable to do this for themselves. However, I had been doing a lot of the above for my partner Terry for over 15 years before this, however, as he was physically able, I didn’t consider this to be caring.

Caring for my partner, Terry

My Terry had mental health and addiction issues that were not physical, but he was mentally unable to do things such as the above. Also, I never spoke about it to anyone as this comes with a social stigma even though the issues are not your own and you are supporting your loved one. Sadly, Terry died during lockdown 2020 of Cancer at the age of 54, but even through the last few months of his illness, when I did need to do the bathing, toilet trips, dressing and getting medication etc., as I was his partner, I still didn’t think this was part of being a carer, just part of what you do in a relationship.

My mum's diagnosis

It was the week of Terry’s funeral that I noticed my mum was ill and she was admitted to hospital. When she came home, the hospital diagnosed Mixed Dementia. Looking back, I can see changes to her behaviour, but at the time, I didn’t realise this was what it could be. If I am honest, those oddities frustrated me when they happened. As soon as I was told why my mum acted like she was, I stopped being frustrated and realised it was her illness. The changes were so subtle in the beginning that they were hard to notice, but one thing I learnt from my Terry was how to get help in the home. When my mum was in hospital, I knew I had to get everything set up in the house in order for her to return and be safe when I was not there.

Once out of the hospital, these things are impossible to organise, and you will end up having to pay for them yourself if you can even get them. I had the Fire Service set up heat sensors in the house, put handrails on both sides of the stairs and all aids such as grab handles, toilet aids walking aids and a key safe. I already had a panic button in place. However, my mum has now forgotten how to use this, sadly. The fire sensors came in handy recently when Mum boiled an egg, forgot about it and was in her bedroom when a group of firemen stormed in her room. If she remembered this happening, I am sure she would have tripped the sensors trick again a few times over. She certainly didn’t mind the interruption.

My mum lives in the house I was brought up in and is 5 miles door-to-door from mine. I do have a brother and sister, of which I am the youngest by 14 years. However, as they are not living near, I am Mum's main career. Although lockdown was a terrible thing, the only good thing to come of it was changing from working full time in the office to working from home and now only needing to go into the office once a week. Without this, I am sure I wouldn’t be able to continue to work.

Day-to-day life as a carer

I was going to write about what a normal day looks like, but I have realised there is no such thing. Working from home gives me the flexibility to work from my flat or Mum's home and allows me to take her to appointments or to her Dementia club that is down the road on a Monday. My mum was never a joiner socially in good health and refused to join any club. She was a great traveller and would disappear to Canada, Guatemala & America for months on end, but if asked to join a local club, it would be flatly refused. My Dad died before I was born, so I was always trying to get her to join something in order to meet other people, but this was always refused.

When the invite to the Dementia club came after being on the waiting list for many months, I said to the organisers that it was more than likely that she wouldn’t come. However, I persevered and took her to the induction day and to my surprise, when I collected her, she was telling everyone that she would be back next week. This has now become her weekly event, and it's such a good activity. For me, it does mean I have to get my mum dressed, brush her teeth, comb her hair, and very slowly walk her towards the car, but I think the mental stimulation for her is worth its weight in gold. The people are so nice, and it’s a very safe and friendly place to be.

I am very lucky that Mum's dementia doesn’t include forgetting who I am, but it has meant that she no longer remembers how to have a cup of tea or make a drink etc. Her tastebuds have changed, and I have had to find meals for her that she will eat. I have set a few inexpensive things up in her home that do help with the day-to-day, such as a Dementia clock so she can see what day of the week it is and the time, and a whiteboard with the days of the week on the fridge door. On this, I write each day what is happening, and if I am not there during the day, I leave a message that I have left a sandwich in the fridge so I know she has food to eat. I have also bought a Dementia wristwatch that, if you press it, it reads the time out to you.

I have found it easier not to worry about getting Mum dressed each day as she is comfortable in her housecoat, and the mobility shop has the best range of comfortable slippers, so she is nice and warm. Mum lives between the kitchen and her armchair all day, so it's important to make sure she is comfortable. I have recently found out that Dementia causes the pain receptors to be heightened, which explains a lot as sometimes you can barely touch her without her complaining of pain, so comfort is the main aim.

Carry on caring

I have been very lucky to have had the two people in my life that I love and loved most and have been able to help them. Sometimes I could have done it with more grace and patience, but tiredness sometimes gets in the way. Going forward, it is difficult to plan as who knows what the future brings, but the important thing is to carry on caring, as when they have gone, you never get the time back. Not the easiest thing to do when everything around you is changing, but that’s life, and right now, I need to head over to my mum's and cook her tea.