Carer Stories

Sandra cares for her husband, Ian, who was officially diagnosed with Alzheimer’s disease in November 2019.She sorts out all aspects of running the home, which includes the organisation of the house, all paperwork, bills and banking.  Ian in appearances looks slim, fit and well but he needs help with everything.

Alfie is 17 and cares for his Mum, who has a Cavernoma (a tumour) in her brainstem which causes her to feel dizzy, have severe headaches and sometime seizures. He describes his experiences of being a young carer and the importance of having a support system in place and people that understand what is going on.

Barbara, 85, cares for her husband who has dementia. She and her husband live alone in four bedroom house which Barbara looks after by herself. The only people who come regularly are a cleaner for a few hours and someone from a care agency one afternoon a week. This leaves Barbara caring for her husband round the clock and helping him to wash and dress every day and sorting out food for them both.

Grace says “At the age of 83, I find this caring role exhausting, some days I am running around non-stop.  I have no life and feel I must surely deserve one.  When all this trouble started I didn't think of myself as a carer but it was just something I did for the person I lived with.  Then somebody pointed out what would happen to Ronan if I wasn’t around or well enough to look after him.” 

I’m a full time carer to my wife Sandy, and I’m so pleased that I have the chance to talk about our experiences and hopefully help people understand a little bit about what caring for somebody with Huntington’s is like.

“I have learnt lots of great skills that will help me generally in life when I get older, like cooking, household tasks, first aid and how to react and stay calm during an emergency.”

Our Young Carer Coordinator, Abi, chatted to Chelsea, a young carer aged 7, who lives at home with her mum and sister. Chelsea helps to look after and support her 9 year old sister Phoebe, who has ADHD (attention deficit hyperactivity disorder), features of both OCD (obsessive compulsive disorder) and ASC (autism spectrum condition).

Jennifer explains some of the challenges she's faced as a carer of someone with dementia in a rural part of Dorset.

Theresa and Michael have been married for nearly 58 years and both are now 81. At the age of 13 Theresa contracted osteomyelitis in both legs which necessitated 11½ months in hospital and numerous operations. She had further spells in hospital until the age of 27, by which time she had achieved a university degree and married Michael.

Sally looks after her elderly mother and has done so for around 17 years. Her caring role started after her mother developed mobility problems which have got worse over the years. Her mother is now housebound and doesn’t really move except from her chair to her commode and back.

Nick cares for his wife of 46 years, Lyn. He has been Lyn’s full time carer now for ten years after Lyn had a stroke. After taking early retirement from his job to care for Lyn, Nick has helped his wife with all manner of tasks around the home including cooking, helping Lyn to move around, to collect prescriptions and to do the shopping.

Rose has been a carer to her husband Peter for 12 years. Peter has vascular dementia with cognitive impairment and has been gradually declining over the years.

Bob cares for his wife, Patricia and has done for many years. Patricia has COPD, rheumatoid arthritis, spinal stenosis, asthma, some other ailments and also uses a wheelchair. During the Coronavirus pandemic the couple have been shielding at home.

I am a full time, unpaid carer for my wife, Georgina, who was formally diagnosed with early onset Alzheimer’s in 2012. Due to her subsequent deterioration over the ensuing years, she now has what is classed as advanced late stage Alzheimer’s.

Finley is 10 years old, he is a young carer for his mum, Emily. Emily suffers from various health conditions including rheumatoid arthritis and fibromyalgia and relies on Finley’s support with day-to-day activities. Finley doesn’t recognise himself as being a young carer. To him, he just thinks what he does is what all children do for their parents.

Patricia has been married to Thomas for over sixty years and is his full-time carer. Thomas has vascular dementia and has no memory of people from the past. Added to this, in the last year Thomas has had a couple of falls as a result of not using his walking frame. Thomas also suffers with swollen, heavy legs.

George has been married to Ann for almost 57 years. With the current Covid-19 pandemic, Ann is considered a vulnerable person and is under self-isolation (or shielding) for 12 weeks. This has impinged on George, who used to do the shopping twice a week, as he also tries to self-isolate with Ann.

Barry has been a carer to his wife, Mary for over three decades. Mary was diagnosed with rheumatoid arthritis when they were engaged. His role has changed over the years from husband to full-time carer and in 2000, in his early 40s, he gave up work due to illness related to working and caring.