Last week we heard from Jayne about the challenges she faced caring for her mum, who has dementia. She said she felt like their roles had reversed and she had becoming the ‘nagging mother’, asking her mum to tidy up or cut her nails. Her friend Allie helped her by coming in and cleaning the house so her mum still felt like she had her independence.
Listen in to the second half of the conversation where Jayne talks about coping with emotional fallout.
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.
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→
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.
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.
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.
Rosie joined the Carers’ Centre six years ago when she was struggling to care for her husband Den, who has Alzheimer’s.
‘I was caring 24/7 for my husband Den, who had been diagnosed with Alzheimer’s disease, and I had a very difficult full-time job. I had come down with a cold – just a cold – and it was just the end of the tether for me. I was absolutely exhausted. I didn’t know what to do with Den or how to manage being unwell for a few days,’ said Rosie.
The Carers’ Centre introduced Rosie to a peer support group where she could meet people in similar situations.
‘To see other carers in those situations really reminds you that you’re not alone or isolated. People can tell you that they know about Alzheimer’s but until you’ve lived with it 24/7, you don’t know. Speaking to someone who really does understand makes all the difference,’ she said.
‘Without the Carers’ Centre I would really be struggling. Their help meant I could keep working for a much longer period of time. It kept me sane and it allowed me to have my own life,’ said Rosie.
Woodlands provides a safe space for carers to come and take time out, even if it’s just half an hour for a cup of tea or to read a book. Things that while we may take for granted, for carers can mean the difference between coping and not.
News and views from Bath North East Somerset Carers Centre