Last week was National Carers Week. Shelley Silas cares for her mum in every way you could think of, but she doesn’t want to become her carer.
Four years ago my sister died. A year ago my dad died. The first was not expected, the second was easier to digest: Dad was 86, and as he himself said, he had a fantastic life, better than most; a wife of almost 60 years, two daughters, three grandchildren AND a great granddaughter.
Had it not been for a crippling diagnosis in March 2014, his hugely painful death two months later, and the death of my only sibling, I wouldn’t now be the only child caring for my mum, making the big decisions, looking after her house and finances.
At the same time as my father was dying, my wife was diagnosed with breast cancer for a second time. Last year was an incredibly tough year.
Prior to my dad dying, whenever I read or heard about people and their widowed elderly parent, I could never understand why they didn’t move them in or move in with them. I had big opinions about it and now, hand on heart, I take it all back.
It’s only been a year since my dad died, but he was much more able than Mum. He used to drive; he was a fast walker; went to the gym once a week until about a year before his death; his sight and hearing were good; he could cook well; he was astonishing.
Mum is blind in one eye and her other eye is not great. Her hearing is helped by two hearing aids; without them she is sometimes blissfully unaware of the young boy drumming next door or the bin men talking loudly on their collection day. She hasn’t driven for years. Luckily she lives two minutes from all the shops she needs and can walk round to them.
Everyone knows her as Esther or Mrs Silas, or dear or love. She’s almost 87, is marvellous really, but when Dad died, a part of her died, as it did when my sister died.
She constantly worries that she is a burden, making my life hard. She isn’t and my life is mostly lovely, thank you very much. But some days she doesn’t want to be here and others she sounds quite cheerful. And some days we row, and others we tell each other again how much we love one another, and she always thanks me, her Shelley, because “without you I’m not sure what I would do.”
“I told my mum that I don’t want to be her carer, I want to be her daughter, keeping the terrific relationship we have. And yes, I feel guilty but I have to live my life, I don’t want to end up bitter and resentful.”
She agreed to wear a panic alarm around her wrist; it makes us both feel safer. We have great fun testing it every few weeks, pressing the alarm and waiting for a voice on the other end: “Everything all right, Mrs Silas?” “Yes thank you, I’m still alive.”
My nephew lives with Mum on a temporary basis and that does make a difference. Prior to that I would stay one or two nights a week and my cousin would stay for a lot longer.
I am freelance. I live in south London, Mum’s northwest, so I can spend over two hours in the car every time I visit her. Luckily I love driving. It is my quiet time, away from phones and computers, where I listen to the radio and have other people’s thoughts in my head. But it is tiring.
Then there are the hospital visits, trips to Moorfields for Mum’s eyes, and yes, I can (and do) call on a few people to take her if I cannot go, but she likes me being there; she trusts me. So days are taken up with travel, doctors, shopping and more.
Work is fantastically important to me, as is exercise, so I ensure I exercise my mind and body every day.
Soon after my dad died, I said to Mum: if and when you need more care, let me know.
She said she doesn’t want a stranger living in her house. I know, and she knows, that in an ideal world she would have my wife and I move in. But that isn’t going to happen.
I told my mum that I don’t want to be her carer, I want to be her daughter, keeping the terrific relationship we have. And yes, I feel guilty but I have to live my life, I don’t want to end up bitter and resentful. And that’s when I understood why all those people who never moved in, or moved their parents in, were right not to do so.
“She constantly worries that she is a burden, making my life hard. She isn’t and my life is mostly lovely, thank you very much.”
My life is very important; my freedom, my home matters to me. And Mum knows this. I know quite a few people who have moved countries and counties to look after their parents; I have nothing but admiration for them, it is an exceptional gift to give a parent.
I also wonder, as someone without children (not our choice), whether this is expected of me, as the one who never had kids and so doesn’t have my own family. We often find that those without kids are the ones who end up looking after the aged parents. I’ll never know whether or not my sister would have been as hands-on as me, and I don’t know what happens in families where all the children have children of their own – does the youngest then take charge?
What I do know is the thought of a stranger living with my mum fills me with dread – like parents leaving their children with a childminder for the first time. I won’t put Mum in a ‘home’. My grandmothers were cared for by the family, and I would do the same for Mum, unless she reached a point where there was no choice.
With her poor eyesight, she needs to feel comfortable. She knows her way around the home she has lived in for over 50 years; she knows where everything is, where the neighbours are, the shops, and more importantly, this is where she spent the majority of her life with my dad. To remove her would be cruel. And wrong.
I really hope she never reaches a point where that decision has to be made. Because I will be the one who has to make it.
“The thought of a stranger living with my mum fills me with dread – like parents leaving their children with a childminder for the first time. I won’t put Mum in a ‘home’.”
For now we are managing. I have caring cousins, my nephews and nieces are all wonderful. Mum’s close friends and family are fantastic. She is taken out for lunches and dinners and people visit almost every day. I feel for the people who have nobody to visit, to help, to rely on. Neighbours have proved vital. Mum has exceptional neighbours, which makes an enormous difference. This is the community caring for one of its own, and it works.
In July Mum is having a pacemaker fitted, and then a cataract operation on her ‘good’ eye. Without the pacemaker her eye operation cannot go ahead because her heart rate is too low. She is terrified that if the eye operation goes wrong she will be totally blind. So am I, because it will change her life and mine.
For now we carry on until something changes, but I hope everything stays the same, because I can just cope with my schedule as it is. I can see my wife and friends, write and go to meetings, exercise, go on holidays and ensure Mum has everything she needs. Her needs and my needs are of equal importance. I want it to stay that way for as long as it can.4091 Views
Shelley writes for radio, theatre and TV and is developing everything she possibly can for radio, theatre and TV. She is a cold-water swimmer (no wetsuit), plays the ukulele (doesn’t everybody?) and loves technology (iWatch anyone?).