Christina has been caring for her husband Barrie, 79, since December 2019 when he was diagnosed with Lewy body dementia. Here Christina explains how their life together has changed since his diagnosis and how Carers First has supported her.
“In the early stages, Barrie would suffer from sleep problems including extremely vivid dreams where he would become very restless and act out his dreams in his sleep,” said Christina.
“When he was referred to a specialist sleep clinic at Guy’s Hospital, Barrie’s sleep experiences were put down to PTSD. He’s a former Royal Marine who served for 22 years, so he was always very confident, competent and independent in his lifestyle, but it was thought that his symptoms stemmed from his career.
“Not long afterwards, Barrie suffered a fall down the stairs while sleep walking and sustained a bad head injury which exacerbated his general state of mind and confusion, and cognitive processing became difficult for him. Initially we thought he had suffered a brain injury and managed to get him a scan before being referred to a neurologist at St George’s in Tooting, where he was diagnosed with dementia,” she explained.
Barrie’s cognitive processing abilities have slowed over the past few years, and Christina now cares for him full time. “I have to do so much more for him now,” she said.
“In terms of responsibility it’s like being a mother as well as a wife. Especially with tasks like helping with IT, appointment planning, and house maintenance for example.
“We have to take each day as it comes. There are little things that you take for granted before becoming a carer that you don’t realise could become so difficult; for example, arranging to meet our family. We have to rely on how Barrie feels on the day and consider the environment and if it will be too over-stimulating or noisy. Everything becomes that little bit more tiring and long-winded.”
Christina noted that being a carer often means you don’t have time to care for yourself. She said: “It’s extremely tiring and frustrating for the both of us. We have no family nearby so there’s no option for me to offload some of the responsibility.
“If I were to be offered time away from caring duties, then comes the difficulty in finding someone we trust that knows my husband and his condition. For instance, I have a spinal problem that recently required a hospital procedure, and I was so worried about leaving Barrie by himself for my appointment.”
She added: “The biggest challenge has been our change of lifestyle. We can’t live the way we used to, going travelling or on days out… my workload is just too big. Luckily the Covid-19 lockdowns did actually help our situation as we became accustomed to our new way of life without any external distractions, but there came a risk of being consumed by my caring duties too. It’s a 24/7 job that requires physical as well as mental capacity. It’s hard to balance.”
Since becoming a carer, Christina says that Carers First has been a lifeline. She and her husband attend clubs and events specifically for those with dementia and take part in activities like quizzes, singing and socialising with other carers.
“Sue from the Carers First team has been absolutely wonderful. She phoned me the morning after we attended our first dementia club and signposted me to other sources of advice and information.
“I can call her whenever, she’s a listening ear. It’s so helpful to have someone there who’s willing to help; for example, Barrie can no longer carry out chores or DIY, so if we need a handy person for a job, Sue has a great list of connections to help us. It’s just been a godsend to have someone as a point of contact and it takes away some of the anxiety and worry of being a carer.
“A lot of the time, carers are not medically or specially trained to look after others – we’ve just found ourselves in this difficult situation and we’re left to figure it out alone. In general, carers need training and education courses to help us cope instead of just being relied upon to be independent and resilient. Carers need to be cared for too.
“Carers First have been helpful with things like that. I completed first aid training through the charity and refreshed my skills while meeting other carers and sharing tips and tricks. There are fire safety courses to help prepare carers in the event of an emergency too. I’ve also done some yoga and mindfulness sessions over Zoom which have been great – yoga is something I’ve really missed doing so getting back into it through Carers First has been fantastic!”
Christina’s advice to other carers is to inform themselves and be aware of the support on offer. “It’s important to know what’s out there,” she explained.
“Don’t think that you’re alone because you’re not. I would highly recommend calling Carers First as a first port of call! They are a mine of information and can put you in touch with the right people.
“I think there’s a stigma attached to caring, especially for people with dementia, but the reality is that becoming a carer could happen to any one of us. Carers’ voices need to be heard!”
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