Real stories

Looking after your wellbeing while finding the right care for a person with dementia

Glenys Smith has lived just outside Bristol with her husband Ralph for more than 30 years. 

‘We intended to live here for five or six years but stayed for 36,’ she says. 

Ralph has family from a previous marriage and he and Glenys have two sons. 

‘We’ve got grandchildren and great-grandchildren,’ Glenys says. ‘The two families have stayed close, which has been really good.’ 

The couple met while studying in London. Ralph was completing a diploma in youth and community work having left school with no qualifications, training as a fireman on the railways and spending six years in the Royal Marines. 

Glenys says, ‘When he was training as a fireman, Ralph got into a fight in a dance hall and was given a choice of joining the services or “taking Her Majesty’s pleasure”! 

He has always said joining was the best decision he ever made – there was an outlet for his skills in the Marines.

Entrepreneur 

Glenys and Ralph moved to Leeds where the university and polytechnic employed him to set up a housing programme when the city saw a rapid increase in the number of students – but not places for them to live. 

The programme provided purpose-built housing for the students. 

‘Ralph’s an entrepreneur through and through – a man who needs to make things happen,’ Glenys says. 

Years later as a housing officer in Bristol, Ralph realised that because social housing always came unfurnished, new tenants with no money for furniture often left after a few weeks, leaving rent arrears. 

He believed that providing a furnished home would alleviate this.

‘He got very frustrated because nobody would listen to him,’ Glenys says, ‘so he left the housing association and set up our family business providing a one-stop furnishing service to social landlords. 

The business, which started with four desks in our front room, is still going strong 25 years later. 

'We’ve grown to three centres covering England, Wales and Scotland with over 50 staff.’

Changing pace 

Without an outlet for his entrepreneurial skills, Ralph struggled to adjust to retirement. 

‘He spent a lot of his life absorbed in work – trying also to make time for his home and family,’ Glenys says. 

But now he was a man without a project and although we travelled widely, his brain wasn’t challenged.

In 2018, Ralph noticed some problems with his memory and went to his GP. 

He was diagnosed with short-term cognitive impairment at first, but his symptoms worsened. 

Ralph was told he had Alzheimer’s disease in 2019, though he struggled to come to terms with his diagnosis. 

‘He had no scan,’ Glenys recalls. ‘He was always saying, “How can somebody tell me I’ve got this just by talking to me?”'

Ralph remained pretty independent for a couple of years following his diagnosis. 

However, he gradually began to struggle with everyday tasks and needed more support as his condition progressed. 

‘It was a gradual decline and I accepted it one day at a time,’ Glenys says. ‘But after 18 months or so things became worse.’ 

Challenging dementia symptoms

Alzheimer’s can affect a person’s behaviour and personality as well as their memory, and this was the case for Ralph. 

‘At times, he became verbally aggressive towards me through sheer frustration,’ Glenys says. 

It is very upsetting when your partner of 50 years says hurtful things to you. I felt physically scared of him on a couple of occasions.

Ralph also experiences ‘sundowning’. This is when a person with dementia becomes distressed or agitated and can experience hallucinations or delusions, especially later in the afternoon or evening.

‘It was so strange that Ralph enjoyed our lovely home and sunny conservatory during the mornings and then suddenly, with a flick of a switch, said he wanted to go “home”,’ Glenys says. 

Trying to explain the same thing to Ralph every day when he was sundowning was emotionally draining. 

He’d say, “Let’s get in the car and go.” I’d ask him where and he’d say, “Home – back to Poole,” or Portsmouth or sometimes Bournemouth.

‘He actually had quite an unhappy childhood growing up in a pub near Poole’s docks. But that’s where he felt like he had a place in the community and people knew him.’ 

When caring for Ralph became overwhelming for Glenys, she sought respite care. 

Carers and professionals told her to ‘go along’ with Ralph whenever he was sundowning. She struggled with this, as it felt like lying.

‘At first I thought this was wrong, but I now realise it’s the kindest thing to do,’ she says. 

‘You have to tell yourself it’s not about you, it’s about them.’ 

Online dementia community 

When Ralph’s behaviour started to change, Glenys turned to the Dementia Support Forum. 

This is the online community run by the Society for anyone affected by dementia to support each other. 

‘At first, I was dismayed by the depressing experiences people were sharing and it scared me off,’ Glenys says. 

‘But as the verbal aggression and other difficulties emerged, I turned to the forum for help.

I received empathy and concerned responses, often with useful suggestions. They really are the only people who absolutely know what you’re going through.

Right care 

Trying to find the right care for Ralph has been a long journey for Glenys. 

Ralph has limited mobility after damaging his knees and ankles when he was in the Marines, and he needs a lot of daily support. 

‘I could see Ralph diminishing as a person when he was in respite care, so I brought him home,’ Glenys says. 

He has been fighting for his autonomy, but I had to weigh that against the toll his care was taking on me – even with paid carers coming in to give me a break. 

Glenys employed a live-in carer. She hoped this would provide care for Ralph at home and give her the support she needed. 

‘Even though the carer was so compassionate and patient, Ralph got upset very easily and pushed her away,’ Glenys says. 

‘He wasn’t sleeping or eating much and refused personal care.’ 

After three months, Glenys realised it just wasn’t working. 

‘What Ralph really wants is to live in our home with only me looking after him,’ she says. 

‘It just wasn’t fair on me or our lovely carer. I had to find the best possible care home and let him go. 

‘It’s hard to let go of someone you love,’ she says, ‘someone who’s given you support, who loves you and has been there for you for over 50 years. 

‘No care home, however good, is going to be as good as being at home. They do their best but it’s just not the same. 

‘I’d advise anyone in a similar position to start visiting as many care homes as possible early on before making this decision.’

Savings for dementia care

Ralph’s care is being paid for with savings. 

Glenys believes more needs to be done to make paying for dementia care fairer. 

‘We are self-financing, and it was a struggle to pay for a live-in carer. If Ralph stayed at home, we would’ve needed someone to care for him 24/7 – but we can’t afford that. 

We can manage the care home fees, but I feel for the families who are just above that minimum level and maybe all they have is their house. 

‘Dementia is an illness that gets worse, and more people are going to be affected by it.

‘It’s shortsighted for the government not to recognise this and provide proper help.’

Advice for carers

Glenys has shared her advice for fellow carers. 

Making a lasting power of attorney – a legal document that allows someone to make decisions on your behalf – is at the top of the list. 

‘Getting this done early is important,’ she says, ‘but make sure you’re not putting too many caveats in place. 

‘We set ours up before Ralph was diagnosed and it can sometimes be difficult to make a decision unless certain criteria are met. 

Find out what support is available locally. Our carers’ centre, dementia advisor and GP were all invaluable.

Glenys adds that it’s important for carers to take care of themselves. 

‘You can so easily lose your identity when caring for another person,’ she says. 

Glenys tried to make time for herself, even if she couldn’t leave the house. 

‘I attend online meditation sessions for carers. It’s just half an hour but it has been so helpful for me. 

‘I couldn’t get out unless I had someone with Ralph, so Zoom was amazing.’ 

Glenys also keeps a diary, which helps her to express feelings that she finds difficult sharing with others. 

‘I add to it when something good has happened and when something difficult is going on,’ she says. 

‘Sometimes you don’t want people to know the negative things you’re feeling. 

‘Having that option to express myself has helped me.’