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.”
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→
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”.
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!
Our annual awards ceremony was held in October and once again the event was hosted by the fantastic Ali Vowles of the BBC. It was a chance to recognise our unsung heroes: carers, volunteers, and partners and to look back over what we’ve achieved this year.
The evening was made possible by the generosity of Sirona Care & Health and by our other wonderful sponsors; Bath College, Curo, Gerrard Financial Consulting, Gradwell Communications, Minuteman Press Bath and Way Ahead Care. Continue reading Celebrating Carers 2016 – the results!→
News and views from Bath North East Somerset Carers Centre