After I’d put Brian to bed, I’d go into the garden and cry’
WIDOW LIFTS LID ON STRUGGLES OF CARING FOR HUSBAND WITH DEMENTIA SYMPTOMS
A WOMAN from South Derbyshire has told how her husband’s symptoms of dementia left her terrified.
Julie, 68, a retired IT Implementation Specialist, claims that she was unable to receive adequate support for her husband Brian’s symptoms.
They first started manifesting when he was aged 64 and worked as a plumber.
Julie said: “The first signs that things were not right were back in 2011. Brian used to be a plumber and was very good at DIY.
“He ended up making things worse instead of better and became quite forgetful – we just put it down to age.
“In 2011 during a shopping trip, we were discussing what we were going to do with my mum and stepdad who were due to visit.
“Brian became angry and I had no idea why. He reached for the handbrake whilst the car was still in motion and I told him not to do that – I felt frightened, especially when there was a bus right behind us.
“He left the car when we had pulled over and we engaged in a cat and mouse chase, with Brian narrowly missing oncoming traffic.
“I got him back into the car, but it was clear in my mind what I had to do. I phoned the doctor who said that he thought that there was something wrong for quite a while. I couldn’t understand why we hadn’t been told this sooner.”
Brian was referred to the neurology department at Burton-on-Trent, where he was initially given a diagnosis of degenerative brain condition Parkinson’s.
But without any signs of tremors, Julie initially doubted this was the reason for her husband’s symptoms.
She added: “The tremors started soon after. He was like a puppet on strings, with no body control.
“After hospital transfer after hospital transfer, Brian eventually met a consultant in Sheffield. He was prescribed medication, which worked really well for the tremors.
“He got his mobility back, his tremors weren’t problematic, and things turned to a degree of normality for a short time.
“I became concerned when Brian would open the windows and shout at children who weren’t even in the street. He’d start to have delusions that I was having an affair with the neighbour’s grandson.
“At points, he didn’t recognise me and would become confused and agitated. He felt like he was losing control. I didn’t know where to go for help.”
Julie began caring for her husband all hours of the day, which knocked her mental health dramatically.
“I’d be angry with Brian because I was so tired, and then I’d feel guilty,” she said. “Palpitations and dizziness became commonplace. In those short moments after I’d put Brian to bed and he was sleeping, I’d go into the garden and cry.
“The delusions and hallucinations were becoming more intense. What was happening right now I didn’t feel was Parkinson’s. “I phoned the doctor and said I wanted a referral to a mental health team, or a dementia team. The doctor said that I should phone Dementia UK. “It was then that I met my Admiral Nurse, Rachel. I wouldn’t have been able to have carried on caring in our home without her – she did a lot more than just the referrals.
“She gave me coping strategies for behaviour and stress. Rachel also helped me to understand the changes in Brian and why they were happening, including him just staring into space caused by cognitive and motor fluctuations. “During these episodes Brian couldn’t talk, move or open his eyes. He could only respond with just a gentle squeeze of my hand. These episodes could last for up to nine hours. No one else could tell me what was possibly causing this.” After one of these episodes saw
Brian taken to hospital, Julie received a phone call telling her that he was end-of-life.
He begged Julie to take him home, where she was able to care for him comfortably and with the support of nurses. Brian died peacefully in 2021 with his family around him.
Even now, Julie is not certain of her husband’s diagnosis due to the variety of symptoms, and is supporting Dementia UK in their fight for change, and to highlight the importance of their nurses.
Rachel Thompson, Consultant Admiral Nurse for Lewy body dementia (a type of confusion caused by deposits in the brain) at Dementia UK and the Lewy Body Society, said: “People with Lewy body dementia and their carers are reported to have a lower quality of life compared to those with other types of dementia.
“Yet, despite this, many people find it difficult to access the support and knowledge they need to manage and understand this difficult condition. Strategies to support people with Lewy body dementia are important.
“These include providing reassurance and emotional support if someone is distressed, trying to maintain a level of physical activity including seated exercises, providing memory and visual prompts, keeping a routine where possible and offering mental stimulation.
“Family carers also need support in understanding and adjusting to changes in routine.”
At points he didn’t recognise me and became confused and agitated. I didn’t know where to go Julie