Why I left work to become a full-time carer for Dad, who has dementia

Shahbaz Bashir recently became a full-time carer for his dad Muhammad, who was diagnosed with Alzheimer’s disease early in 2023. 

Muhammad previously worked in factories, including a car factory in Luton.

Shahbaz says he used to be ‘laid back, happy and getting on with life’. 

‘That’s not the same anymore, and now he has his good days and bad days,’ says Shahbaz.

First signs of dementia

‘Mum and Dad came from a small village in Pakistan,’ Shahbaz says, ‘They’re devout Muslims and their faith is very important to them. 

Dad was the first to come to Britain to support his wider family. He was then called back to an arranged marriage and had my two older brothers in Pakistan.

‘All four came over to Britain in the early 70s, where my sister and I were born.’ 

The first signs that something wasn’t right with Muhammad came in 2020.

On one occasion he didn’t recognise his granddaughter, and he started to act strangely in other ways. 

The lockdown meant Dad lost his routine, and this is when we started noticing changes in him.

‘One morning Mum found his clothes in the bin outside, covered in mud.

‘Dad would attempt to go into the garden, instead of the bathroom when he needed the toilet. 

‘He thought he was back in Pakistan, where they didn’t have toilets in the house growing up.’

Long journey to a dementia diagnosis

Shahbaz became desperate for help as his dad’s changing behaviour caused tension in the household. 

‘I started looking for help. I was looking for some kind of diagnosis, but it was a long, hard journey,’ he says. 

I called the GP but, because of the Covid backlog, we had to wait nine months for a referral. Eventually, we had a video call with the occupational therapist.

Initially Muhammad masked his symptoms.

He was encouraged to take up his old routine, a practice known as reablement, but it soon became clear that he could no longer do everyday tasks for himself. 

‘I felt like I was trying to get Dad to fake it in front of the healthcare professionals,’ Shahbaz says. 

He kept on telling them that he could look after himself, but it was more pride talking than his actual abilities. 

In 2022 Muhammad had some tests at a memory clinic. 

‘Dad was eventually diagnosed with Alzheimer’s disease in early 2023,’ Shahbaz says. 

‘Even though we had an interpreter, he frequently said, “I don’t understand what she’s saying.”

‘Dad is very old-school and felt uncomfortable telling his medical details to a woman.’

Burden lifted 

Shahbaz wasn’t clear on the support available to him as a carer. 

‘I’d ring up social services and ask for help, but they wanted me to explain what I needed and I didn’t know what I was entitled to,’ he says.

He then came across the Society’s website and called our Dementia Support Line, where he was put in touch with a local dementia adviser called Oz. 

‘Dad and I were comfortable with the diagnosis, but my mum, my wife and some extended family found it hard to accept,’ Shahbaz says. 

To hear from Oz that this was a normal reaction felt like a huge burden off my shoulders.

Oz helped Shahbaz to claim various benefits and a council tax reduction. 

‘We didn’t know anything about these before speaking to Oz. Up until that point I was really struggling.’

Big decision to become a carer

Shahbaz had seen bereaved friends and family with regrets that they weren’t more present towards the end of a parent’s life.

So, he quit work to care for his dad full time. 

‘I was stuck in the middle of the memory clinic, adult social care, Mum and Dad,’ he says. 

‘So, I gave up my job and became a full-time carer.

It has always been ingrained in me that it’s a son’s duty to care for his parents. 

‘A lot of people I know have had parents pass away and I’ve seen the change and the regrets it brings for them.

‘I thought, I’ve got the perfect opportunity to see Dad through the end. 

‘Whenever that end comes, I can hand on heart say, “I wasn’t perfect. But I tried my best, and I’ve got no regrets.”’ 

This change has been emotionally and financially challenging for Shahbaz. 

‘As a coping mechanism, I’ve just detached myself,’ he says.

I don’t believe me thinking or worrying about it is going to change anything. If it is going to affect something, it’s going to be my mood and the way I treat Dad. 

‘It’s not that I don’t process it – I’ve accepted it. I find it a lot easier just to keep trekking along rather than focus on Dad’s dementia. 

‘Financially I’m really struggling, so I have to plan quite carefully. Unexpected expenses are a challenge.’

Shaken faith 

‘In February this year, Dad’s faith was shaken,’ says Shahbaz. ‘He asked “Why is God doing this to me?”

‘He’d been struggling to memorise his prayers, so he asked my brother to write them down for him. 

‘But then he’d forget that. So, he asked my uncle to do the same.

The imam across the road helped too but, of course, Dad still forgot. 

Muhammad was adamant that he would observe Ramadan, the month when Muslims typically fast from dawn till sunset.

But forgetting that he was eating caused tension in the house. 

‘For Dad, Ramadan was the same as every year,’ says Shahbaz.

He thinks he’s still got the body and mind of a 20-year-old. But we advised him not to fast. We said it was OK because he didn’t have good health and that he would be forgiven. But Dad was insistent.

‘We knew that he was eating though. He would leave his dirty plates on the table.

‘In his mind he was fasting, but he just forgot that he was eating.’ 

Eventually, Muhammad was convinced that he did not need to fast.

‘Dad was not happy about it at all, but you need to be healthy to fast,’ says Shahbaz.

Lack of understanding 

Some family members didn’t accept Muhammad’s diagnosis and Shahbaz puts this down to a lack of understanding about dementia. 

‘Everyone noticed the changes, but they kept saying that he was going “loopy”,’ he says.

They weren’t accepting it could be something more serious, like an illness or disease. 

‘I have to be really blunt with Mum, who sometimes thinks Dad is just making excuses. But he’s old, frail and he’s got dementia, he often doesn’t know why he’s doing things. 

‘If he’s wet himself for example, that’s already a terrible position to be in as a father – watching your son clean up after you, or your daughter or your wife.

‘But then to be humiliated on top of that is a bit too much.’ 

Shahbaz has offered to put Alzheimer’s Society in touch with his mosque to help raise awareness about dementia in his community.

He wants more people to be better placed to understand and accept a dementia diagnosis.