It was when Lesley Brackenridge spotted a one-word note on a hospital X-ray form that she realised what was wrong with her mother, Edith Dougan, and the enormity of the task ahead.

Written on the form was the single word: ‘dementia’. It was the diagnosis that Lesley had dreaded, but had suspected for some time.

“That was the worst moment for me – that the medical staff had acknowledged it,” she recalls. “That was the first point when the deep shock at what I was facing hit me.”

Lesley had previously worked as a nurse on a dementia ward and had spotted the signs of Alzheimer’s in her mother, but prayed she was mistaken.

Initially, she took her mother to her GP who thought it might be stress – her mother had spent many years caring for Lesley’s sister, Alison, who has severe physical and learning disabilities – but Lesley remained unconvinced.

Indeed, it was only after she was referred to an older adult medical team at her local hospital in Glasgow – something Lesley had to push to do – that the full extent of Edith’s condition became obvious.

“They do a memory test and I was shocked by the things she didn’t know,” Lesley says. “What I understand now is that people with any stage dementia cover up a lot, so she had covered up the deficit in her memory. So when the doctors were asking, for example, ‘where are you?’ there was a confabulated answer ‘I’m at the hospital’. But she didn’t know why we were at the hospital or what day it was.”

Today, Edith lives in Williamwood House, a residential care home in Glasgow that has specialist Alzheimer’s facilities, and has done for several years.

Deciding to care

But for the 6 years before Edith moved into Williamwood, she was cared for by Lesley who was determined that her mother would remain in her own home for as long as possible.

And Lesley admits she had no hesitation in becoming Edith’s carer: “What was central to me was knowing why I was doing it. I was doing it because I wanted to, not because I had to. That was what got me through most of it. Looking back, I’m so glad I had the opportunity…”

As she tails off mid-sentence, emotion takes over. It is clear that even now, several years on, her feelings about that decision – and that time – are still raw and powerful: “Often people call dementia ‘the long, slow goodbye’ and that’s quite apt because you don’t remember when the last time they actually were who they were; it’s so insidious."

“It’s like a long grief process. Instead of it being a grief and a loss when someone dies, it’s ongoing because you are losing more and more and every time something else goes. It is adjusting to the change and adjusting to the loss because it won’t come back.”

Lesley admits that caring for her mum was hard work. She had to care for her physically and emotionally, all the while juggling it with the demands of a young family: “It’s a balancing act – you have a lot of considerations and it’s not just the person with dementia. Sometimes I felt very torn between my role as daughter, as a mum and as a wife and that was really difficult.”

Not for everyone

Indeed, Lesley understands that the role of carer is something that not everyone can do: “It doesn’t mean it’s right or wrong or they’re any less loving, it’s just that not everyone can do it. It’s very important to do what’s right for you and your loved one and your family."

“You can’t say ‘I’m going to give up work and care’ because that doesn’t suit everyone and could be hugely detrimental to the [person with dementia] and to the carer. It’s finding what is right for the family.”

Lesley adds that nobody should feel guilty if they do not feel they can care for someone who has dementia: “I was a nurse, so that came easy to me, practically, but not emotionally. People need to understand – don’t beat yourself up if you feel you can’t do it because it’s not right for everyone. It doesn’t mean you don’t care or love your family member any less.”

You’re not alone

But while Lesley was willing and able to take on a caring role, she admits to needing help and support: “You can’t do it on your own – otherwise you drown. It is important to ask for help, to get help. If that person says no, go and knock on another door.”

Lesley believes this is vital because otherwise carers can become exhausted “by the relentlessness of it, because it takes over your life”.

Indeed, the worry about the person with dementia can be just as taxing as physical caring. “You wonder whether they will be safe at night. You want them to stay at home, but you know that the risks are becoming increasingly great. So having support for you and support for the person are really important.”

Lesley says the support she received from the community psychiatric nurse, her local day centre and charities such as Alzheimer’s Scotland were a great help. “That’s what allowed me to be able to do it,” she says.

In terms of domiciliary care, support came from a mix of social services and private companies. While social services were generally helpful, Lesley often found them inflexible; so private companies were sometimes hired to give her more flexible arrangements.

But the most important factor for Lesley was to build up trust with the carers – knowing they were reliable and giving her mother the care she needed and wanted. Lesley even admits to phoning her mum’s house just to check the carers were there.

“It took me quite a while to trust the carers would do what I was asking them to do, because my mum couldn’t tell me they were there, so she was very vulnerable."

“Once you get a carer that you trust and know that your relative will be well cared for, that is very important. I was very fortunate to have that.”

Lesley also took advantage of respite care facilities, but she admits this was a double-edged sword. While respite gave her relief from the stress of caring, it often had the consequence of making Edith’s condition deteriorate because of the upheaval and disorientation of going somewhere new.

“For example, mum went in one time and could work a microwave and that allowed her to heat a dinner up, so she could be independent, but when she came back out she didn’t know how to work it. That meant she couldn’t have a hot meal, so that had consequences for carers having to go in or me having to go in to provide that."

“But it’s important that carers don’t feel guilty about putting the person into care to get a break; if they don’t do that they can’t continue. To allow the carers to continue is vital.”

Going into a care home

But after several years of caring for Edith, it became obvious that her condition had deteriorated to the level that she needed 24-hour care; she was increasingly wandering out and getting lost, as well as knocking on neighbours’ doors.

While making the decision to move Edith into a care home was difficult, Lesley did have her blessing. “Years ago my mum said ‘if something happens to me and I can’t look after myself I don’t want to come and live with you, I want to go into a care home and be well looked after.’ So that was helpful, knowing that.”

But getting Edith into the right care home was not easy. Lesley wanted a home with specialist dementia facilities, but was put onto a council waiting list because of a lack of spaces: “It was a real battle because I knew how important dementia care is, as opposed to mainstream care. I don’t think local authorities recognise the importance of it.”

For Lesley, a care home with specialist dementia facilities was imperative: “If you put someone in who has a chest condition and needs oxygen, that’s what they need to sustain themselves. If you put someone with dementia into a care home and don’t give them any stimulation, that’s like not giving them oxygen. Sometimes people don’t understand how important that is.”

But specialist dementia facilities are in short supply and, unwilling to stay on a waiting list, Lesley continued to search for a care home herself.

“That was the worst time in my life. I was very drained by all the caring over a long period of time and worried and concerned about my mum – I was worried she’d walk out, worried that she wouldn’t come back, or she’d get knocked down because she couldn’t cross the road safely.”

Finally, she found Williamwood, which fitted the criteria she was looking for. “It’s not about the building, it’s about the staff, and that’s what I’ve had at Williamwood – the staff are remarkable. Its people who are important, and trusting your loved one with these people.”

Edith has now lived at Williamwood for several years, where she receives specialist, individual care.

Moreover, the knowledge that her mum is well looked after is a great relief for Lesley: “I can sleep at night knowing she’s well cared for. She’s not going to get better, but knowing that she’s well cared for is what I was looking for.”