Tag Archives: illness

Hear from a carer about their journey with dementia — guest post

Steve Hynd writes about his family’s journey with dementia. Reposted with permission from Steve’s blog.

Steve’s mum Jackie with her favourite cow, Emblem.

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.

Continue reading Hear from a carer about their journey with dementia — guest post

National Young Carers Awareness Day – 28th Jan

Joe in our Carers Centre garden
Joe in our Carers Centre garden

Tomorrow is National Young Carers Awareness Day, a national event aiming to inform the UK of who young carers are and the hidden struggles they face every day. Therefore today, we want to highlight one of our brilliant young carers, who we named our Young Carer of the Year 2015.

Seventeen-year-old Joe Lomax is the main carer for his mum, who suffers with chronic back pain. Joe manages to provide this care while attending college and looking for part time work. This isn’t all: he is becoming increasingly involved in our Young Carers service, acting as a fantastic role model for other young people. Joe’s friendliness, warmth and compassion means he always welcomes new Young Carers with a smile.

During the Young Carers ‘Big Day Out’ trip in August, Joe provided hands on help for the YC team, assisting the youngest boys to build rafts and row boats, while also organising the children effectively. At our bike workshop later that summer, Joe spoke to various trustees about the work he was doing to the bikes, providing an informative and funny description of the day’s events. They were really impressed, which helped their decision to fund more Young Carers activities in the New Year.

Joe is one of our most popular Young Carers and a true example of how amazing these young people are. It was an honour to award him our Young Carer of the Year 2015 and we can’t wait to see him again this year!

Young Carers Awareness Day is on Thursday 28th January – please get involved or donate to support Young Carers like Joe. You can find more information from The Carers Trust here: https://www.carers.org/young-carers-awareness-day

‘January Trees’ – Our latest Arts Award evening

art-therapy-career2It’s hard to believe it’s been a whole week since our last Arts Award meeting with our amazing Young Carers! This fortnightly art club takes place at Woodlands and allows Young Carers aged 5-11 to explore loads of different creative mediums, including photography, clay modelling and painting.

As usual, there was a whirlwind of noise and glitter with our young carers chatting away about their Christmas while drawing what presents they got in the holidays. Once again the kids had a good laugh at my drawing skills (which even I admit are non-existent) before we had a break, where the kids enjoyed a huge game of hangman.

Then we got started on our latest project – designing a calendar which will go on sale in 2017. The kids will spent all year perfecting 12 pictures, one for each month of the year. It was so cool to see the kids enthuse about what colours they could use and design the coolest looking ‘January trees’ I’ve ever seen. The best part of this project is that next Saturday we’re taking the kids on a trip to the forest to capture some pictures of trees in January, to practice their photography skills and get some cool pictures for the calendar.

Sometimes as adults it’s easy to forget how tiny things like a game of hangman with your friends, a walk through the forest or the chance to draw freely can be so great, and it’s always lovely to see Young Carers in particular having this much fun, especially given their tough home lives. Their resilience always amazes me and makes me want to work with them even more. Can’t wait for next week’s session!

“It’s not just people who are grey who get Alzheimer’s”: Tracey’s Story

Tracey with her 'Unsung Heroes' Award at our Annual Award Ceremony
Tracey with her ‘Unsung Heroes’ Award at our Annual Award Ceremony

Tracey (pictured left) is a smiley individual full of love and laughter but it wasn’t all fun and games last year, when her husband Paul was diagnosed with early-onset Alzheimer’s aged just 54.

“I remember Paul would come home from his job in construction and say that some of the young guys at work were hiding his tools”, Tracey says. “At the time I didn’t think much of it, but now I realise it was the start of his memory problems”. After seeing his GP, Paul was referred to the RICE Memory Clinic. When they entered the clinic, Tracey noticed the information, posters and leaflets available all targeted older people.

They were then given the devastating news that Paul has early-onset Alzheimer’s, a condition which affects 5% of the population. Despite this difficult diagnosis and the additional care she now gives to Paul, Tracey has continued running the house, working part time and helping to look after her two grandchildren. Tracey is even keen to set up an Alzheimer’s support group here at the BANES Carers Centre.

Looking back, Tracey says “I would love to see a picture at the Memory Clinic of someone younger, someone who is still working, someone with a mortgage and children. Because that is the reality. It’s not just people who are grey who get Alzheimer’s”.

Back in August, Tracey and her husband Paul appeared on ITV’s Lorraine to spread awareness of early-onset Alzheimer’s, and in October it was our pleasure to award Tracey with ‘Unsung Hero’ at our Celebrating Carers ceremony. We felt Tracey deserved recognition for her bravery and resilience during such a difficult time. Well done Tracey – you’re a star!

If you’re caring for someone you love and need support, contact BANES Carers’ Centre free on 0800 0388 885.

The Care Act 2014

Care-Act-Call-OutIn our most recent Annual Survey, many carers requested information about the Care Act 2014; a new piece of legislation all about carers and who they look after. Last week, Carers Centre staff all took part in Care Act training, to ensure our knowledge is up to date.

The Care Act 2014 aims to improve the rights, appreciation and wellbeing of carers in the UK. An interesting goal of the Care Act is the achievement of good wellbeing for every carer. The policy is very person-focused, meaning the independence, freedom and happiness of each carer is a big priority in the Care Act. Wellbeing is a current political buzzword and a hugely important thing to aspire to, but as a concept it is hard to define. As a result, the Care Act introduces specific rights to wellbeing; something that is inherently unspecific. It’s almost trying to bring universal rights to something that is very personal.

One of these rights is the entitlement to a carer’s assessment if you are seen to have a need for one. Currently, you have to provide ‘regular and substantial’ care to receive an assessment, but the new Care Act means the amount of care is almost irrelevant. If the local authority thinks you need an assessment then it is now your right to receive one. The training was very informative but it was exhausting to get our heads around! There’s so much legal jargon to understand and endless bits of paper to grapple with. However, it was great to learn more about it, and I can’t wait to see how it shapes the lives of carers in the coming months.

Twelve weeks on: An update on the RUH Carer Hub

Some Carers Hub cakes made for our launch in September
Some Carers Hub cakes made for our launch in September

Twelve weeks ago, we officially opened the Carer Hub at the RUH in Bath. The Hub is located in the atrium of the hospital and is manned by trained volunteers every weekday. The Hub is a great way to meet new carers and inform people about what we offer at BANES Carer’s Centre.

Many people who enter the RUH leave with a devastating diagnosis that will change their lives forever – but what of the loved ones who accompanied them? There is so much support for people receiving bad news, but often their family members can feel lost, confused or lonely. They may enter the RUH carefree and leave as a carer, unsure of what to do next.

The Carer Hub is there to help.

Volunteers at the Carer Hub can talk to people becoming carers for the first time about what support is on offer for them in BANES. They can also signpost people to external organisations and provide a network of support for a carer who may feel lost and alone. Additionally, the Hub demonstrates the RUH’s commitment to helping carers and making sure they feel supported.

The Hub has faced some challenges – mainly that people assume it is just another seating area rather than a designated space for carers! However, the Hub is becoming increasingly popular with carers using the hospital, as it is a permanent place for carers to visit us if they need to. Volunteers have also said they’ve had many powerful and poignant interactions with carers. This is a great encouragement and we hope the success of the Carer Hub increases even more in 2016.