Real stories

What it’s like to care for someone in the later stage of dementia

Phyllis, whose husband Tom was diagnosed with Alzheimer’s in 2008, is candid when discussing the devasting effects of his dementia. 

‘He’s like a child now,’ she says. ‘In 14 years, he’s gone from a grown man who ran his own plumbing company to a baby.’ 

Phyllis wants to show what it’s like caring for someone who is in the later stage of dementia. 

‘I have always put his needs first, to the point that Alzheimer’s has taken over my life. It takes over the whole family,’ she says.

‘We’ve had to learn to live with it and just keep going. I don’t know how we’ve done it.’

Phyllis hopes that others in a similar situation can take something from her experiences. 

‘I want to help people prepare themselves for what’s to come, and make informed decisions,’ she says. 

‘It’s a terrible, terrible illness, but you cope as best you can.’ 

Easy-going person 

Both Birmingham born and bred, Phyllis and Tom were married on a leap day – 29 February 1964. 

‘In those days, there was a tax rebate if you got married before March!’ says Phyllis. 

Tom, now 81, was a plumber all his working life, starting his apprenticeship at 15 before eventually becoming self-employed in the mid-60s. Phyllis worked in administration for a garden centre for 32 years.

The couple have three children and two grandchildren. 

‘Our first house was a self-build and Tom did all the plumbing,’ says Phyllis. ‘He was self-employed for over 40 years and was never out of work. He never advertised – all his jobs were on recommendation.’ 

Tom was always very easy-going. A lifelong Birmingham City supporter and season ticket holder, he enjoyed going out for a drink and spending time with his family.

Horror and embarrassment 

It was in early 2008 that Phyllis first noticed changes in Tom’s behaviour. 

‘He started to forget words and simple tasks,’ she says. ‘On one particular job, he got frustrated with things that wouldn’t normally bother him. 

‘He also started reading out loud and taking offence at things rather than laughing them off.’ 

Phyllis thought that this was down to stress at work. 

‘Never in a million years did we think dementia,’ she says. 

However, following a doctor’s appointment and MRI brain scan, Tom was diagnosed with Alzheimer’s disease in December 2008. 

‘He wouldn’t listen and walked out of the hospital and drove home,’ says Phyllis, who was left alone and in shock. ‘We arranged another review at a different hospital, and he had the same reaction.’ 

Phyllis felt ‘horror and embarrassment’ at the diagnosis, while Tom maintained that nothing was wrong with his health. 

‘He gradually got worse and worse,’ says Phyllis, who recalls the police having to bring Tom home after he got lost. 

‘Sometimes you could see the old Tom flashing through, but it was an awful time.’ 

Fight for help 

Phyllis wasn’t offered any support or suggestions by medical professionals as to how best to manage Tom’s condition. Instead, the family put together a weekly plan, so that every day Tom would have an activity to give him purpose and keep him occupied. 

As his dementia progressed and he became less independent, they adapted the plan and found their own voluntary and paid support. 

‘We had to fight all the way to get help for Tom,’ says Phyllis. 

The family received much support earlier on, and again now in the later stage, from Kiran Daman, a Dementia Support Worker at the Society. 

‘Kiran has been extremely supportive, using her knowledge and experience,’ says Phyllis. 

‘She told us about the different places we could take Tom, and also helped us get a grant for him to have a social outing with one of our daughters. We were very grateful for that.’ 

Kiran also put the family in touch with Age UK, who provided lots of ideas for supporting Tom. Tom joined a buddying service run by Birmingham City Council and volunteered for a couple of charities who specialised in employing people with disabilities. 

He also joined a gardening club and men’s club, while the family employed a private care agency to take him out and about. 

‘We did have some pleasant times, but you remember the horrible times more,’ says Phyllis.

No life 

As Tom’s dementia has progressed, Phyllis has found it extremely challenging to support him. 

‘I’m quite a strong person, but I must admit I’ve got very angry with him a lot. I even blamed him for having dementia,’ she says. 

‘At one stage, he just kept making noises and I told him to shut up. I had to leave the room and shut the door. That was a horrible period.’ 

About six years ago, Tom lost all his mobility after falling off a chair, forcing Phyllis to retire from work. Tom hasn’t left the house since and is now hoisted from his bed to a chair and back every day. 

‘We try to give him a routine. Up in the morning, washed and dressed, and the reverse at night. He sits in the lounge in the daytime and is involved in all the daily family activities,’ says Phyllis. 

Phyllis is determined to keep Tom at home and has converted the house rather than putting him into a care home. 

‘I have carers come in twice daily to help get him up and put him to bed, and twice weekly I have people in to sit with him, so I can go shopping for a couple of hours,’ she says. 

‘It’s no life for him or me really but I’ll never give him up, even though it’s been awful over the years. It’s a personal choice I’ve made.’

Don’t give up 

Phyllis is sharing her experiences to help other families better prepare for what might be to come, particularly as she feels that dementia can be incompletely represented in the media. 

‘It’s not just a bit of memory loss,’ she says. ‘As the brain is dying, it shuts down all the body functions and significantly changes the person’s personality. 

‘Tom has no speech now. He can’t smile, so he cries, which means he recognises you. 

‘But the adverts I see are ladies sitting on the settee, smiling with their daughter or granddaughter. I’m thinking, that’s not real life for us. It’s glamourised – they don’t show you the nasty bits.’ 

Having been through it all over the past 14 years, Phyllis offers support and advice to those in a similar situation. 

‘If people are at the end of their tether, they can keep going. Don’t give up,’ she says. 

‘You’ve got to have support, but you’re the ones who have to find it.’ 

Since we first spoke to Phyllis, Tom’s condition deteriorated further and he can no longer sit in his chair. The family continue to support him at home, with daily help from carers and district nurses.