Stories and comments about their role from carers in Doncaster.
Susan and Ben
Sue is 62 and cares for her 31 year old son Ben who has Cerebral Palsy. He needs help with personal hygiene, his wheelchair when going out, meals and understanding money, amongst other things.
Got a GP appointment today so know it’s not going to go well. Ben doesn’t want to go and it takes until what feels like the tenth attempt to get him dressed and ready to go. He’s got a face like thunder so I don’t think we’re friends.
Things get worse when he needs blood tests. Ben doesn’t take it well. I try not to listen to the protests and when he won’t get out of the car at DRI I tell myself to keep calm…but it doesn’t seem to work.
I’m so tired and feel like I’ve been on a 10 mile run. I don’t want to cook, so we have a take-away. By 10pm Ben decides he’s sorry and that we’re friends again – I’ll sleep better now.
I finish my coffee, take a deep breath and get back on the roundabout – shower; dress; teeth; shoes; shave – Ben’s ready now it’s my turn!
Ben is at the day centre today and his carer will take him there. Ben likes him and is very co-operative, he even makes me a coffee (with a little help) and off he goes with a smile.
The sun’s shining and it’s a lovely day. I should be getting the housework done while Ben’s out…maybe if I have another coffee and a little relax I might feel like doing it.
Ben’s in a good mood when he gets home, very chatty. I’m happy too, it’s been a good day full of smiles and laughter.
Shower time…I will get up in a minute. I can hear a noise in the kitchen. How can two Weetabix and probably a pint of milk make such a mess?!
We went into town shopping and a wheel came off Ben’s wheelchair. Thankfully a very nice man helped put it back on and Ben found the whole thing funny.
Ben and I had a long talk about holidays – he wants to go with his friend Chris, on their own. Could see him becoming sad as I explained why they both would need support. I will try to sort them a weekend.
Music day at the centre, Ben needs a CD. He spends ages looking through them and won’t choose…we’re going to be late. Tempers are rising.
The support worker picks Ben up, they’re going to see a film and have a meal. Nice to be relaxed and have time to catch up with my friend. While I’m waiting for her to arrive at the café I’m looking around at the other people about my age and I can’t help thinking how for me this is a special treat but for them it's normal life.
When he gets back, I chat with Ben about the show being put on at the day centre, they need prizes for the raffle. I couldn’t understand what Ben was saying at first and so he says I’m hard work.
It’s a day centre day today so I prepare a packed lunch and help Ben with dressing and I have to re-do his buttons and the laces on his shoes. He’s made his own bed this morning!
I get a phone call from the day centre to say Ben had had a fall. I can’t help but hit panic mode as I drive across trying to remain calm – never sure how bad things are going to be when I get a call like that, and hate walking into the unknown. He’s cut his knee and bumped his head but seems ok.
I bring him home just in case. I’m still stressed out and Ben gives me a cuddle because I’m upset.
I have to have my blood tested and don’t tell Ben until we are in the car on our way to DRI. He becomes anxious and I had to stop the car to speak to him and calm him down. He hates the hospital because he associates it with people dying and now he’s worried that I’m really ill and keeps asking me “what me do without you?” I have to reassure him it nothing.
Ben got up at 5am – he’s excited that his older brother Steven is picking him up for a day out…he’s not going to be here till 10am, this is going to be a long morning!
Steven says he’ll keep Ben over night and he helps Ben pack a bag. There’s lots of laughing (mainly from me) then I wave them off - Yippee!
It’s so quiet sitting in the lounge with no Ben. Lots of things go through my head about what I could do - but I do nothing except paint my nails, ring a friend and relax.
Sushila and Manika
Sushila cares for her daughter Manika who has autism spectrum disorder and needs supervising with dressing, showering and getting out and about.
I wake up at 8 o’clock ask Manika to get up and brush teeth, shower but won’t listen. I take clothes out and place on bed for Manika. Partly supervised with dressing. I make sure Manika finishes breakfast by 9 o’clock before Sarah (Marika’s support worker) arrives and takes Manika to the Women’s Centre.
Sometimes the morning routine takes a lot of time if I have to keep on telling Manika to do things and she won’t listen. It can leave me feeling stressed. When her support worker takes Manika out I can catch up on all the other things which need my attention like the shopping and the house work.
I cook Manika her favourite food for lunch time but I know that if she’s moody then Manika won’t eat it (until she’s very hungry, when she’ll give in and eat a really little bit of something) but if she’s in a good mood then meal time will be a time when she will laugh and talk.
Sarah the support worker took Manika to the cinema today which can’t have been easy given all the roads they will have had to have crossed!
I wake up at 8.30 prepare for Manika getting up at 9 o’clock by picking out her clothes and putting them out on the bed.
I told Manika to brush her teeth and her hair. I make cups of tea and then ask Manika what she wants for breakfast. Manika won’t answer so I get stressed and running around trying to get her to eat breakfast runs into lunchtime!
Manika only snacks at lunchtime given how late breakfast ran over today but when it gets to family meal time she is taking a long time to eat her Indian meal.
We relaxed after dinner and watched some Indian soaps and movies. Feels like quality time and I enjoy seeing Manika happy (but I can’t help but be scared what might happen in the future).
Sometimes Manika doesn’t want to take a shower in the mornings and other days she ‘ll get up early and hop in the shower without me asking (which causes its own issues given I need to be aware when she is showering to ensure she’s safe).
Today Sarah the support worker is taking Manika out for a few hours to the Women’s Centre (and then the carers house for arts and crafts) this is a great help and gives me time to spend with my husband and son.
I attend the arts and crafts session at the Carers House with Manika and Sarah – it is nice to meet other carers. Afterwards because my husband is off work we all go out to the park. I enjoy feeling relaxed. It’s been a tiring long day but enjoyable.
I mix the hot and cold water for Manika in the sink (so she doesn’t scold herself) and make her breakfast.
She’s in a stubborn mood this morning so everything takes a long time to do and I’m left running round after her.
Me and Manika go shopping and then to her Aunty’s house for a couple of hours.
I wake up at 9 o’clock and ask Manika to shower. I lay her clothes out and partly supervise while she showers then ask her to brush her teeth and hair. I put her breakfast out.
Enjoy a nice lunch in the garden and relax for a bit together.
Manika wants to help prepare dinner tonight and I need to keep an eye on her while she’s near the cooker to make sure she’s okay.
It’s nearly the weekend so we stay up pretty late watching TV as a family.
Nice lie in and late start today. I still need to get Manika’s clothes ready and breakfast out but it’s not as stressful as there’s no rush for things to be done.
Tiring time food shopping, have to be alert and supervise Manika around roads and in the supermarket and make sure that she doesn’t wander off. Afterwards we have a trip to the park.
Another lie in. For a while Manika is happy watching children’s programmes but I can’t keep her in the house all morning as she gets bored and her mood changes (she gets stubborn and won’t talk or listen – if she gets really angry she won’t eat anything). It can be tiring always finding ways to please my daughter.
A trip to the park after lunch.
At dinner time Manika requests a particular meal but then changes her mind so I have to make something else. This is stressful and tiring.
"We didn't realise we were carers... We thought we were just a family"
“When I found out there was help, I couldn’t believe it – it was like they were mind readers, always one step ahead, so you never hit rock bottom.”
"I didn't realise I was a carer... I thought I was just a mum""
“Most of the time we’re fine, but if things go wrong, or I’m tired it’s good to know I’m not alone.”
“We get help for our son to socialise and take part in activities, as my mobility is not as good these days.”
“I look after my husband who has dementia. I care for him everyday. I look out for activities he might enjoy to keep him stimulated. I cook his meals and he does the washing up…we’ve always been a great team. Sometimes I have to admit that I can’t do it all on my own.”