As you hopefully will know, as avid readers of this blog, we help run a Carer Hub information point at the Bath Royal United Hospital. We do this in conjunction with Carers Support Wiltshire, Friends of the RUH and the RUH NHS Trust.
Recently we heard from a carer who was introduced to our service via the Hub and think her story is worth sharing. She captures a lot of the thoughts and feelings that we come across so often when talking to people looking after someone. Read on to hear from Kathryn, a carer from Radstock:
“I’ve been caring for my mum for 5 ½ years now, since my father passed away. She’s 91 years old and has been in and out of hospital on and off, for around 5 months now, it’s been very stressful. She is now back at home. I worry so much about her and feel that I never do enough and that I should be doing more. She lives independently, and wants to remains so, but fortunately lives within a 30 second walk from my house. I feel guilty about having time away from her, but luckily I have a very supportive husband who is also very kind and caring to mum, having cared for his parents for many years.
“I was visiting mum in the RUH, Midford Ward, when approached by a Carer Hub volunteer. She asked which area I lived in and handed me a BANES Carers information leaflet. Up until that point I had been unaware of the organisation. I read the leaflet and realised that I could benefit from the wonderful things that were offered, and if other carers could do these things then so could I! Continue reading “Before I met your volunteer, I wouldn’t have considered myself a carer,”→
Melissa Nash is a mum to two children, and her eldest Toby was diagnosed with Autism at age 4.
“My lowest point was at a Tesco’s. Toby could go in any Tesco’s in the western world except for our local one. We got in the door and he started screaming, over and over, and it got louder and louder and the rest of the store was getting quieter and quieter. Eventually I was approached by the manager, who was very understanding and I said, I just need this – whatever it was. And she said ‘just have it and go,’ and I left the store sobbing. I didn’t go out for a good couple of years after that.”
“I learned that you can’t spontaneously do anything; a day trip for example has to be planned with military precision,” said Melissa.
“In mainstream school he just couldn’t cope. He would sit under his desk. I would collect him and he would throw his bag at me, spit in my face; just the anxiety of the day was too much for him.
“Once he changed from mainstream school to supported school, he knew instinctively that was the place for him, he became much calmer and more accepting of the way things were.”Continue reading Carer Story: Mel & Toby→
Friday, 13th of October was the day of our annual general meeting and Celebrating Carers awards ceremony. Despite the unlucky date, the evening was a great success and was much enjoyed by all attendees.
We are so fortunate to have our wonderful host, Ali Vowles, return to us again this year to really make the evening special. She is such a fantastic presenter and this year was no different, even when some of the script pages went wandering off! As always we are incredibly grateful for her support, so thank you Ali.
The evening was an opportunity to recognise some very special people who have supported the Carers’ Centre, carers in our community or indeed carers themselves who have achieved so much.
Our first winner was one you would have read about before; young carer Becca who looks after her mum. Since being featured on Comic Relief, Becca has used her platform to educate and inspire her peers and adults alike, putting together a presentation and role-play for her school to explain what it’s like to be a young carer. It was fantastic to reward Becca for her efforts and hopefully inspire her to continue to educate her community for years to come. Continue reading Celebrating Carers 2017: Success!→
September is World Alzheimer’s Month, an international campaign every September to raise awareness and challenge the stigma that surrounds dementia.
Here’s Rosie’s story, who cared for her husband Den who was diagnosed with Alzheimer’s.
“I found the Carers’ Centre about six years ago –I was referred by my GP. I was caring 24/7 for my husband Den, who had been diagnosed with Alzheimer’s disease, and on top of that I had a very difficult full-time job. There was a week when I had come down with a cold – just a cold – and it was just the absolute end of the tether for me. I was exhausted. I didn’t know what to do with Den or how to manage being unwell for a few days. I think that was the point for me when I thought I needed to get some support.
“The first thing the Carers’ Centre did for me was to send me to Ammerdown, a wellness centre, for a 24 hour respite. It was just incredible. I had a bath. I went for a walk. It sounds silly but when you’re caring for someone with Alzheimer’s, telling them you’re going up to have a bath doesn’t mean anything. It’s just not possible. Continue reading Alzheimer’s Awareness Month: Rosie’s Story→
According to the Alzheimer’s Society, about two thirds of people living with dementia in the UK are living at home – usually with the support of a relative or friend who is their carer.
Looking after someone with dementia – the umbrella term for degenerative brain disorders, such as Alzheimer’s – can be incredibly upsetting, isolating and painful. But there is help, support and understanding available that can make things a little easier to cope with.
Founder of Singing for the Brain, Chreanne Montgomery-Smith, said “people hear and read so much about dementia in terms of a decline and the progression of symptoms – that is by far the overwhelming narrative – but people with dementia show us every day that it is possible to live well and to have a progression of hope.”
Ruth Holbrook, who looks after her husband Maurice (both pictured above) has been involved with the Carers’ Centre and other local services since Maurice’s diagnosis. Because Ruth had worked in health and social care, she knew what support was available. Continue reading Living Well with Dementia→
We were delighted to hear that two carers we work with were recognised at this year’s Bath Chairman’s Awards. Fiona Carr was awarded Carer of The Year after being nominated by her husband John, who she looks after.
John said “Fiona is my wife but also my carer. More importantly she puts the ‘care’ into caring. I always knew that she was a very special lady but since she has been my carer, she has shown this in so many different ways. I had a very serious stroke three years ago. Initially I could not walk, talk or even swallow. I realised that I had a long road of rehabilitation ahead of me. I knew that I could do this with Fiona at my side.
“When I was in hospital she kept my spirits up by visiting me twice a day, every day without fail. Today my life has been changed forever and is very challenging. However, Fiona has helped me adjust to this. I can honestly say that because of her support, I live a fulfilling life. She enables me to attend the local stroke group, cook at Manvers Street Baptist Café and even cycle with the local cycle group. With her ready smile, quick wit and always thinking of others, she is an inspiration to everyone who meets her”.
It’s one of the ironies of life that if you ask someone if they know an unpaid carer, they’ll often say no. Even when they’re sat next to the person they look after.
That’s the situation that sometimes faces Carer Hub volunteer Kevin O’Callaghan, who helps support carers at the Royal United Hospital in Bath. People rarely want to sing their own praises, he finds, or ask for help.
But life is full of surprises and when I go to visit Kevin in the hospital atrium, we are immediately met by a couple from Wiltshire. The husband is looking after his wife and his mother and, though in good humour, seems tired and in need of somewhere to turn.
Making a referral to his local carers centre is easily done, but it’s not always the case. Kevin has found that some people can be defensive, especially if they think you want money. Luckily, with his 34 years in sales and marketing at BT, Kevin is quickly able to diffuse the issue.
Young carer Becca, 10, helps to look after her mum who has Fibromyalgia. The family, via the Carers’ Centre, were approached by the Comic Relief team who wanted to make a short film to capture what life is like for young carers — and we think they did brilliantly!
We are incredibly proud of Becca and all our young carers and hope this video can shed a little bit of light on what it’s like for young carers living in Britain today.
The film highlights the difference between Becca’s day and the day of one of her friends, Izzy, who isn’t a young carer.
As a thank you Comic Relief took Becca and her family to watch Blue Peter live!
Q: My mum has recently been diagnosed with dementia and I’m finding it difficult to know how to respond when she behaves out of character or says things that I know aren’t true. I was wondering if there is anything I can read or any training I could do that might help me learn how to deal with this?
Many carers find it difficult to know what to do when a loved one with dementia begins to act differently. We’ve put together some advice for communicating and where to find more information.
Try to make sure you’re being as clear as possible when speaking to someone with dementia.
Use names, i.e. saying ‘it’s me, Jane,’ rather than ‘it’s me.’
Speak in a warm tone and give them extra time to respond to you.
Try giving options instead of open questions, such as ‘would you like chicken or beef for dinner?’ rather than ‘what would you like for dinner?’
Use non-verbal cues like pictures and touch.
Don’t quibble over mistakes or even delusions the person might have, instead try deflecting to a new topic.