This Carers Week we’re launching a new phone system that is staffed from 8:15 to 12noon on weekdays by our specialist carer support officers. You can call free on 0800 0388 885 to get confidential advice, support and information about caring on this dedicated Support Line.
Our Chief Executive David
Trumper says that looking after someone can leave you with lots of questions.
“Navigating the health and
social care system, juggling work and finances, balancing caring and other
family responsibilities, as well as planning for the future is very
“Sometimes it’s good to talk to
someone who understands and can help point you in the right direction and
connect you with others going through the same thing. Our free and confidential
Support Line, staffed by experienced and friendly Support Officers, is here to
help you feel in control of your caring role.”
The Carers’ Centre is involved with the 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.
We heard from a carer who was introduced to our service via the Hub. She captures a lot of the thoughts and feelings that we come across so often when talking to people looking after someone. In Kathryn’s words:
“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”→
“Last summer, I had a bit of a wobble. Everything with
Paul’s diagnosis just hit me – I hated the word Alzheimer’s, dementia, I just
didn’t want to hear it. I felt sad with the whole situation, angry, cheated, I
felt like this shouldn’t be happening to us.
“I met with a friend who asked me if I was alright and I just broke down and said ‘no, I’m not.’ My friend suggested I call the Carers’ Centre – I have been registered as a carer for a while, but never needed to use the service. I just hadn’t thought of it.
“I called the centre and spoke to Carers’ Support Officer Lorraine. She was just lovely and so supportive. We talked about how I’d lost my dad earlier in the year and then had my mum staying with us for a couple of months. I’d kept myself so busy, that I hadn’t really grieved for my dad. I was also grieving for Paul too because even though he’s still here, he’s changing.
“I had a few sessions with Lorraine and she said she thought I might benefit from taking part in the Coping with Caring course, which was just great. “
‘I nearly didn’t come here today as I had a bit of a wobble,” said Helen, who was making her first visit to the Carer Café at Mardons Social Club in Midsomer Norton.
I knew exactly how she felt, as it was only four weeks ago that I walked into the Bath Carers’ Centre office to take on my new job as Wellbeing Administrator, and today I was leaving the familiarity of the office and making my first outing to meet and chat with carers.
So when Helen announced to the café co-ordinator that she was a newcomer, I thought: “Great! There’s someone like me. We newbies should stick together!”
Kimberley Williams is fundraising for 8 charities in a mammoth campaign to support the organisations who helped her family during the first year of her son Rio’s life. Rio had a number of complications after he was born which meant he was in and out of hospital.
“Rio’s had 2 major surgeries, spent 45 nights in 4 different hospitals. Hes been under general anaesthetic 3 times, He’s been resuscitated once, He’s had his bowel perforate & his windpipe crushed. He’s had 5 ambulance rides & so many hospital visits, we once had 6 appointments in 1 week and saw 3 hospitals in 1 day!
Each year, national carers charity Carers Trust organises Young Carers Awareness Day, this year taking place on January 31st. The purpose of the day is to raise public awareness of the challenges faced by young people because of their caring role, and to campaign for greater support for young carers and their needs.
Young carers are more likely to suffer from poor mental health than their peers — so this year’s awareness day will focus on mental health. Earlier this month we talked to one of the young adult carers we work with, Sue, who talked about her experience caring for her dad and the difference support from the Centre has made.
Sue said: “Friends don’t always understand that I can’t always go out, so I get called boring. I was happy to finally find support to help me feel less alone. The Carers’ Centre has helped my life change for the better.”
Here at the Carers’ Centre Young Carers Service we are responding to this need. We will be focusing more on young people’s mental health in 2019, by launching our new Positive Penguin group (starting this month for primary age young carers) as well as continuing the iCare peer support group, starting back later on in March. These groups aim to offer a safe space for children and young people to discuss the pressures of caring, challenges they’re facing and to make friends with other young people who are in similar situations.
Steve Hynd writes about his family’s journey with dementia. Reposted with permission from Steve’s blog.
Yesterday was my mum’s funeral, the end of a long journey that started many years ago. Its initial stages were played out behind the scenes, out of sight, deep inside my mum’s mind. Unknown to any of us, friends or family, the 100 billion or so neurons in my mum’s brain started a countdown. These neurons in her brain threw out neurological branches that connected to more than 100 trillion points, allowing for thoughts and memories to be formed and recalled. Slowly, and completely silently, this number started to drop. With no fanfare, an incredibly awful and utterly incurable process began that would only begin to show itself years later.
When it did show itself, it did so relatively innocuously. It was the odd repeated question, the occasional double take, the subtlest of shifts away from engaging in conversation.
The science behind Alzheimer’s tells us that the areas of the brain most commonly affected early on are those that are used for learning and planning. I remember patiently sitting with my mum trying to explain to her how to use her new mobile phone. The simplest instructions seemingly lost in the seconds following the conversation. In retrospect I can see the folly of trying to explain, and reexplain, something new to my mum. That I failed to mitigate my own behaviour, let alone expectations, to allow for the early onset dementia is both something I regret, and something that makes me feel embarrassed.
How unequipped I was to support my mum in those initial stages leaves a deeper sadness in me now than the ending of her story. She was preparing for one of the hardest journeys of her life, and I turned up with no shoes to walk in, maps to direct me or rations to sustain us. I was woefully ill-equipped.
“I’ve been on my own with my son since day one. I always found him hard work, right from the beginning. I thought it was because I was a rubbish parent and just not really cut out for it.
“When Kenzo was five his behaviour really deteriorated. He became verbally and physically abusive. Every single day he was hitting, kicking, spitting, biting, shouting, and screaming under tables at the adults at school.
“This lead to a couple of years of a really terrible time at the school. Weekly meetings; constant exclusions; visits from educational psychologists. The headmaster – along with multiple other professionals – told me I was a bad parent and I’d spoilt him, that it was all my fault.
I believed them – they were people who supposedly
knew what they were talking about.”
This, along with a very stressful full-time job with its own problems, and the anxiety and depression Sophie has dealt with since her teens, lead to what she now considers a breakdown.
“I couldn’t cope. I reached that point where – and I’m saying this as a proud person – I was just asking everyone and anyone for help. And once I took that step it was like the floodgates opened. Once I had
made that change from being private and proud and ‘coping’, to realising that I just wasn’t, I recognised that it’s more important to get help than keep struggling on.”
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, trying to help, said ‘whatever it is you need, just take it and go.’ 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→
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→
News and views from Bath North East Somerset Carers Centre