June (62) has been the primary carer for her mum Jean (86) for the last 7 years. Alcove went to see them both for Dementia Awareness Week (15-21 May) and to celebrate the commitment of carers for Carers Week (6-12 June 2016).
What does your care routine look like now?
I visit mum every weekday, and I pay care workers to come on the weekend when I couldn’t make it. Recently, because Mum’s dementia has got worse, social services have funded care workers to come in in the morning and do her breakfast. It’s great because I don’t have to rush so much, and can spend more time chatting to mum and doing the more important stuff.
I’ve lived in Barking now for the last 26 years ago in a lovely house but the area is not so great any more, and I’d think about moving, but I don’t drive and I don’t want to be too far away from mum.
Jean agreed how lucky she was to have such a dedicated daughter. I notice mother and daughter are wearing matching earrings – Jean’s pick up the pink of her cardigan and June’s the purple grey of her jumper.
How did becoming a carer impact your life at the time?
I left work to see more of mum and was lucky enough to be able to take early retirement at 55 – although I did have to ask for redundancy 4 times before my employers finally gave it to me. Mum was suffering from health problems at the time, which later turned out to be skin cancer, and I wanted to be there for her. I wanted to visit more and be able to go to the doctors’ appointments to push for answers, because no one had come up with a diagnosis. It made sense to spend the weekdays looking after mum and then be able to spend weekends with my man.
Has your mum got a diagnosis now? What was the experience of getting one like?
I didn’t fully appreciate at first, when I was at work, that she had memory problems. When I spent more time with her, I realised there was something wrong, It took 2 years to get a diagnosis. It was a really dreadful journey. The doctors spoke to me, and either ignored mum like she wasn’t in the room or talked to her like she was stupid. They put it down to age and denied she had anything wrong with her. We moved surgery to see if we could get more answers, and at first had the same difficulty there. But we eventually found a nurse who diagnosed both the leg cancer, and then (after hospital visits and tests) early onset dementia.
After she was diagnosed, someone phoned to see how I “felt.” When I told her I felt relieved, it wasn’t quite the answer she was looking for. But it was a relief to know it wasn’t me imagining things or being over protective. We were referred to a dementia clinic and were offered some plenty of advice or meetings but we didn’t really take it up. I felt we were used a bit as guinea pigs, as I spent lots of time with mum, so could give more feedback than most people. I found out all about the dementia by reading and studying on Internet.
Jean interrupts and says that June is the world leading expert on the subject. We look at pictures of June’s grandson and Jean’s great grandson – a very handsome young man at 2 years old.
What’s good about being a carer?
I prefer doing everything myself. Mum calls me bossy boots. I am my fathers’ daughter. It’s a pleasure looking after mum. Why wouldn’t you want to look after someone you love? It was great being able to take mum away on holiday before travel became too much of an issue. We really lavished some money on our last trip to Disneyland – stayed in the most amazing hotel.
How much other support do you get?
As the dementia has progressed, social services have got more involved. I couldn’t speak more highly of the memory clinic. Mum enjoys their company when they come. We now get support for mum in the mornings and they come in to give her afternoon tea and cup of tea before bed.
Jean is upset about the impending staff changes and is going to miss Randy Lewis, the 9am-5pm weekday member of staff when he leaves.
He is a treasure – he doesn’t take anything personally and knows how to calm people. Most importantly we trust him implicitly. On the weekend and at night there is only one person, and I worry that they won’t be there to support mum if someone else needs support at the same time.
Has the Alcove system made a difference to you?
I would be a poster girl for Alcove. I noticed mum’s condition was accelerating once I could see what was going on when I wasn’t there. I could check every day what was going on which was very reassuring. I saw that the care she was getting wasn’t enough. It even helped me pick up things like a water infection, when I noticed frequent trips to the lavatory. I can see when she leaves her room, but it’s normally the other residents that get her back as she’s been here 18 years now and they all know her. Alcove just gives you a lot more visibility and a bit more confidence that things will be alright even if you’re not there. I even managed a girly weekend in a different part of the country, which I probably wouldn’t have done previously. Apart from a few hours of stress as I could see the staff weren’t supporting mum properly, I felt more confident that I could have some time away. If I had to move mum, I would definitely pay to get it installed. It’s marvellous stuff.
Do you worry about getting dementia yourself?
There’s no point worrying about whether it’s genetic. It will either happen or it won’t and there’s nothing you can do to prevent it.
We talk about Jean’s family of 10 siblings all raised in Somerset. About one of her brothers, a former university professor, who also has dementia and has been sectioned for being violent. You know these too are mother and daughter – always friendly, always joking, always positive.
Consider yourself lucky mum – the dementia could be a lot worse.
I think back to those earrings. Different sides of the same coin these two.