Real stories

The challenges of caring for someone who has diabetes as well as dementia

When Brenda Green, 80, thinks back to first meeting her husband Alan, 77, she reflects on their contrasting personalities. 

‘I’m gobby and Alan’s always been the opposite,’ she says. 

‘We had very different upbringings – growing up, my family were sociable and loved a party, whereas Alan’s family were very quiet. But they say opposites attract.’ 

They first met on holiday at Butlin’s in Bognor Regis and have been married since 1992.  

‘There was an organised meet-up for single parent families. I was there with my two children and Alan was with his two children. The children went around with autograph books, collecting the names and addresses of friends they’d made on holiday. 

‘Alan must have got my number from his children and about a week after I got home, he called. It just went from there.’

Alan worked as a computer programmer – he was one of the first people to study computer science at the University of Manchester in the 1960s. 

‘He was intelligent, thoughtful and laid-back. His big passion was building and sailing model boats – he came alive talking about these,’ says Brenda. 

Alan has type 1 diabetes and Brenda believes this also contributed to his reserved character. 

‘He was diagnosed at the age of six, and although he managed it well throughout his life, it affected his confidence. 

‘He also had hearing loss from a young age. When I first knew him, he wore just one hearing aid and then, as he got older, he wore them on both ears.’ 

Personality changes 

The first signs of Alan’s dementia were changes in his personality and behaviour. Because he’d been so quiet and gentle before, Brenda knew something was wrong. 

‘He couldn’t remember how to use the computer to renew his disabled rail pass. I said, “You’re just having a bad day love, don’t worry about it.” 

‘But not long afterwards, he lost his temper with me on a shopping trip to Cardiff and became very argumentative. This was not the Alan I know and love. So I decided we better make a GP appointment. 

‘I remember the doctor asked him to repeat back an address and tell the time without looking at his watch, but Alan couldn’t do either. 

‘He was eventually diagnosed with mixed dementia in 2020. It was a shock and I felt unprepared for what lay ahead. I had no idea.’ 

 

Dementia isn’t just memory loss

Brenda says there’s a lot of misunderstanding about what dementia involves. 

‘People seem to think it’s harmless forgetfulness – “Oh blimey, I can’t find my car keys” or “What’s the date tomorrow?” or “What did we do yesterday?” 

It’s so much more than this. Being a carer has so many challenges too.

One of the biggest challenges was the change in Alan’s personality. He became more and more aggressive, sometimes towards Brenda, including throwing food at her. 

‘He’d also constantly be asking for his dad. I’d say he was in Doncaster and that we couldn’t get up there, as we had no car. Or I’d tell him that the train drivers were on strike. Sometimes he’d leave the house looking for his dad and I’d have to call the police.’ 

Managing diabetes

Caring for Alan was relentless. Not only was Brenda on high alert because of Alan’s dementia symptoms, but she had to monitor his diabetes carefully too. 

‘When I first met him, he was injecting insulin around twice a day and eventually he used an insulin pump, which is a small electronic device that you attach to yourself. 

‘He looked after himself well and I didn’t have to watch over him, apart from making sure he didn’t eat too many biscuits! 

‘But as his dementia progressed, he couldn’t self-manage the pump very well. So the nurses at his diabetes clinic switched him back to the insulin pens, meaning he could inject himself. 

‘I breathed a sigh of relief because these are more straightforward. But he was really upset. He couldn’t understand why they were taking the pump away from him. 

‘The people at the diabetes clinic were great to deal with and if I was ever worried about Alan, I could ring them and get their advice. 

But caring for him at home 24/7, monitoring his health, with no respite, was overwhelming for me and so lonely. 

‘Like dementia, people don’t take diabetes seriously. I remember being at a late-running appointment, telling someone that we had to get home so Alan could have his insulin and them saying, “It’ll be fine if he misses one injection, surely?”’ 

Monitoring Alan's health

Every aspect of his diabetes care was made harder by Alan’s dementia. 

‘I took on things that Alan had previously done himself. So, I’d have to monitor his sugar levels and make sure the timing of his insulin injections was right. 

It was hard to get him to routine diabetes appointments and help him understand what was happening. 

‘We’d have to see a podiatrist to get his feet checked and when we got back, he’d say, “He’s not cut a lot off, has he?” He thought he’d been to the hairdressers.’ 

Managing what he was eating wasn’t easy either, which is important if you have diabetes. 

‘He’d frequently forget he’d eaten and say, “I want my dinner,” and then argue with me. When that happened, I used to try and distract him, but it was very hard. 

‘I also had to hide the sweets and biscuits. In the end, I put them in the tumble dryer because otherwise he’d raid the cupboards, and I’d find biscuits in his shirt or dressing gown pockets.’ 

Feeling unsupported as a carer

Sadly, Alan’s dementia progressed very quickly. Brenda praises the help she received from Helen, her Dementia Adviser at Alzheimer’s Society and Tim, an Admiral Nurse.

However, she largely felt unsupported. She says shouldering Alan’s care as his dementia advanced was devastating. 

It’s hard to think about this time, as I was at absolute rock bottom. 

'He was frequently trying to leave the house, desperate to get out to find his dad, and so I ended up locking the doors and carrying the keys around with me. 

‘I remember one particular night, thinking, “Alan’s quiet, what’s he up to?” He was in the kitchen, window wide open and talking to a delivery driver. 

‘The driver told me that he’d called 999 because Alan said he was being held hostage.’ 

And his diabetes became even more difficult to manage. 

‘It got to the point where I would dial the insulin unit on his pen and hand it to him, and he’d say, “What do I do with this?” so I’d have to guide it to his tummy. 

‘Even if we had carers come in to help, I always had to be on hand to help with the injections.’  

Brenda says she had no chance to take any time out and look after herself.

Awareness about diabetes and dementia

Things reached crisis point for Brenda early in 2024. 

‘We’d had some periods of respite care, but Alan needed full-time care. It was hard coming to this decision and I wrestled with it for a long time. 

‘But it was a battle to find a place for him in a local authority care home. I was literally calling everyone – councillors, politicians, everyone, totally desperate. 

Alan finally moved into a care home in June and Brenda now sees him two or three times a week. 

‘It was so difficult caring for him at home, but I hate leaving him there. I still worry about his diabetes. I kept an eagle eye on it at home but it’s difficult for the staff to be so vigilant there.’ 

Brenda wants better public awareness about dementia and diabetes, and about the extraordinary pressures placed on carers. 

I’ve heard people say dementia is like a bereavement, but it’s been worse than that for me. It hurts like hell. 

‘Sometimes, there are glimmers of the old Alan when I visit and he’ll tell me he loves me. He’ll say he wants to come home with me and the carers have to hold him back and take him away. I sneak out or pretend I’m going to the loo. 

‘I don’t want people to feel sorry for me, but I do want them to know how difficult caring is – and how diabetes has made looking after my Alan even more challenging. 

‘People say to me, “Brenda I don’t know how you did it.” But you have to get on with it, don’t you? I did it because I loved him, and I still love him.’