Real stories

‘I left my job and moved home to be my mum’s dementia carer’

As Matt Alam witnessed his mum’s decline with dementia, he was in no doubt about the role he had to play.

He had his own wife, job and home. But he realised no one else would be able to be the primary carer for the woman who had raised him.

‘What is the alternative?’ asks the father of four from Birmingham.

Matt worked in business litigation, but his life has changed completely.

‘The first thing a social worker says to you is, “Have you thought of putting her in a home?”

‘But if you put Mum in a home, she would be immediately lost. She would deteriorate within days.

Mum recognises people, but her words get jumbled. She babbles. Then there’s the language barrier.

‘She knows English but her first language is Urdu, and she can’t communicate in either. We go by optics even to ask, “Would you like a drink?”’

Importance of caring

Matt’s mother Kaniz is now in her early 80s. 

As well as dementia, she has health issues ranging from angina to kidney problems, hearing loss, arthritis and recently diagnosed bladder cancer.

Matt is clear that anyone without his knowledge of his mum would struggle to look after her.

He relates his drive to care for her to his religious beliefs.

‘When you are a Muslim, you are closest in life to your mother. 

You must be there for them when they require you, tolerant towards them and understanding towards their needs. That’s embedded in our faith.

‘One of the sayings of our Prophet is, “Paradise lies beneath the feet of your mother.” You must look after her, care, respect and have love towards her.’

Family life

Matt’s parents were originally from Pakistan, before it separated from India. She was around 20 years younger than her husband.

Together they had six children. 

He was a chief petty officer in the British Merchant Navy then ran a shop with his wife. Later in life, she became a highly successful seamstress.

Matt remembers her making bell-bottom trousers when they were the height of fashion in the 1970s, followed by sought-after army jackets.

His mum became more forgetful in her late 60s, but it became clearer over the past 10 years that something was very wrong.

Losing her eldest son and husband were the triggers for big changes taking hold.

Dementia diagnosis

Kaniz was finally diagnosed with dementia. This came as no surprise to her family.

‘She was talking back to the news presenters on the Asian TV news channels. She thought they lived in the area where she was from back home,’ says Matt.

At other times, she’d think people on the screen were looking at her and she’d get shy and hide.

She became unable to look after herself, and Matt made his huge life decision. He’s now her carer almost 24 hours a day, every day.

‘Mum’s dementia doesn’t halt and give you respite,’ he explains.

‘There’s no good outlook that is going to get better.

‘She’s losing her balance and falls. If I leave the room for five minutes she might be on the floor. She will have forgotten I was there five minutes ago and will get up to find someone.’

There’s no respite at night.

I take her to the toilet, brush her teeth, clean her, put her nightie on, do her medicines and put her in the middle of the bed so she doesn’t fall out. 

‘Then I go to bed, but I can’t sleep.

‘There’s a camera in her room and I’m watching her. If I hear something, I shoot out. If she falls, I know I’m going to be working 10 times more than I am.’

Challenges of caring

Life was easier when Kaniz temporarily had night carers for a few weeks.

Matt is doing all he can to regain this extra help.

It would be ideal if I had some rest so I could recuperate and be fresher for the morning, so I could be less agitated and less depressed. 

‘We can’t sleep with one eye open. Carers are not fish!

‘My health is deteriorating. I’m getting brain fog because I’m not mixing with people. My wife comes to see me, and I see my kids occasionally, but they have their families. My friends are out doing stuff.

‘I can’t get to my own doctor’s appointments. If I’m feeling ill, I take painkillers and hope – how am I going to look after her if I’m incapacitated?’

Later stages of dementia

When Matt made the decision to care for his mum, he had no idea the impact on his life would be so great.

Her condition wasn’t as severe then – she was more mobile, could communicate and do her personal care. Now her needs can feel overwhelming.

‘If I put tea and some biscuits in front of her, she’ll pour the tea over the biscuits, because she thinks she’s doing it correctly.

You have to feed her and then watch her swallow it properly. Every time Mum needs to go to the toilet, I take her.

‘Anytime I sit down to eat, Mum needs the toilet. It’s everything.’

Finding dementia support

Respite comes at 10am, when a carer arrives for an hour’s support. At that moment Matt falls asleep.

After breakfast, the carer puts his mum to bed for a rest, extending Matt’s rest for another hour and a half. 

Without this, Matt believes he wouldn’t cope at all.

Another carer arrives later in the day for 30 minutes. He’s trying to pay for additional, experienced help, with no luck so far.

Meanwhile Matt’s sisters visit at weekends, freeing up moments for jobs to be done.

More support comes in the form of Kiran, Alzheimer’s Society Dementia Adviser.

Determination

‘I don’t know how I got in touch with Kiran, but she was suddenly there. She’s my ray of light – one of those angels who appear from nowhere when you really need them. 

She has helped me a lot in navigating the ins and outs of who to contact, and chasing up social workers.

‘She’s a rottweiler, in the best way. She’s tenacious. When it comes to sorting things out, she doesn’t let go until she’s helped.

‘Without her, I’d struggle. I don’t have the time to chase people, make complaints when people don’t come back to me for months because councils are underfunded. Kiran gets on with it.’

Role reversal

Spending time with his mum brings back childhood memories. 

Matt remembers how much she did for him. ‘I was bathing her yesterday and I said, “Mum, do you remember when you used to bathe me when I was little?”

‘Obviously, I don’t know if she understands, but I’m saying, “Look, it’s my turn now. I’m returning the favour.”

I was combing her hair and I realised I still choose to do my hair pretty much the way she used to do it when I was a boy. 

‘She’d comb it, make a little quiff and put some oil in.’

Caring is relentless

Thinking of the past is easier than thinking about the future.

‘I’m in a tunnel where there’s no light. If there is a light at the end, there’s hope. Mine is pretty bleak in that regard. So I stay in the moment.

I’m on autopilot, cracking on with the chores of the day.

‘From changing linen to washing to putting it outside, to getting food ready to cleaning. Your whole life revolves around one person.’

Not everyone could – or should – make the same decisions that Matt has, and he admits to feeling resentful sometimes. 

But he has no regrets.

I’m grateful. I can lift Mum when she falls. I can park my own problems somewhere else.

‘What differentiates us from animals is that we are humans, and humanity must prevail. I’ve given up my job, but jobs come and go.

‘I’m not taking money into my grave with me – but I will take my memories.’