Uamar Khan in Birmingham says that caring for his father with dementia has changed him as a person.
Uamar Khan’s father Sabzad was once a successful Birmingham businessman, but now requires 24-hour care as a result of Alzheimer’s disease.
‘He was one of the strongest people I’ve met in my life. I remember the way he used to carry himself,’ says 33-year old Uamar. ‘This is not him now.’
Uamar’s life and outlook have completely changed since becoming Sabzad’s main family carer.
‘It’s been one of the hardest things,’ he says.
‘I always had Dad above me. If I messed about, I had him to cover me or put me right, but I’m the authority figure now.’
With Uamar now in a better place, following a difficult battle to get Sabzad the right professional care, he is sharing his story for the benefit of others in a similar situation.
‘I know what it’s like to be in those four walls by yourself, so I have to give back, it’s an obligation,’ he says. ‘I can’t just sit here knowing that somebody is going through the same thing.’
Chatty and friendly
Sabzad, 66, owned a scrapyard in the Small Heath area of Birmingham. ‘Dad was really fond of cars – that was his life. Our family are known for being in the car game,’ explains Uamar, who says that Sabzad was always a sociable and chatty person.
‘He’d become friendly with people very quickly. That’s what made him so good in business.’
Sabzad had a stroke in 2014, with follow-up hospital appointments leading to a series of tests at a memory clinic and a diagnosis of Alzheimer’s in June 2018.
Uamar says that things were generally under control until the pandemic, which then affected his dad’s wellbeing.
‘He started to deteriorate when Covid hit, because with the restrictions in place he couldn’t see anyone,’ says Uamar, who has supported Sabzad since his diagnosis, becoming his main carer in January 2021.
‘Then the memory clinic lost funding and referred him to the mental health side, and we didn’t know what was going on. That deteriorated him even more.’
Sabzad initially experienced problems with his memory, which Uamar found manageable, but this later turned into more challenging behaviour, both day and night.
‘He was doing very unusual things that weren’t him,’ says Uamar. ‘It was getting harder to control.’
With the situation becoming worse, and keen to keep his dad at home for as long as possible, Uamar applied for NHS continuing healthcare (CHC).
This is a package of care that’s arranged and funded by the NHS. It’s notoriously difficult to obtain – you need to persuade your local NHS that most of a person’s needs are for ‘health care’ rather than ‘social care’.
Uamar managed to secure the funding, at the second attempt, after a ‘massive, massive struggle’.
‘After the first assessment I was demotivated, very upset. There were times where hope just went out of the window,’ he says.
Following the initial rejection, Uamar started to document anything that highlighted Sabzad’s need for more support. For example, getting staff to confirm in writing that his dad had mistakenly tried to drink a bottle of hand sanitiser while at the day centre.
In desperation, Uamar also resorted to taking photos when his dad did things that were especially hard to deal with. He recalls his frustration at having to go to such lengths.
‘I’m telling them what’s happening, I’ve showed them medical reports. Alzheimer’s Society and the district nurse have come out. But I’ve still had to take pictures of my dad at his lowest,’ he says.
‘How much more evidence did they want?’
Having had his CHC funding approved earlier this year, Uamar was able to employ 24/7 carers for Sabzad in the home that they share in Birmingham.
‘He can’t do anything by himself or go anywhere by himself, so he’s supervised day and night,’ says Uamar.
Although he remains heavily involved in supporting his dad, he feels better able to do this with homecare arrangements in place.
‘I’m giving him the best life I can.’
Uamar has also been able to find greater balance in his own life. Having previously run car hire, recovery and body work businesses, he gave everything up to care for Sabzad, but recently felt able to return to work as a courier.
‘When I’m away, half my mind is still on my dad, but the burden on me has reduced,’ he says. ‘Before I had practically no social life – I couldn’t even take my kids out, but now I can.’
Not the same
Uamar has received fantastic support from Kiran Daman, a Dementia Support Worker at Alzheimer’s Society.
‘Kiran has been one of the solid people I could rely on. There have always been good words from her, she’s helped me so much,’ says Uamar.
‘After my first CHC application was rejected, Kiran came to my house and saw the great difficulty I was in. I was lost and exhausted at that time. Hopeless.
‘She’ll check up on me, remind me to ring people – make sure I’m getting things done. Without her, I don’t think any of this would have been possible.’
Uamar admits that he wasn’t always so open to receiving support.
‘When Kiran was first involved, she’d ring and I’d fob it off,’ he says. ‘I’d think, “Why is she ringing me? I’m alright.”
‘Being from an Asian background and culture, you feel you can take it on. You feel top of the world and don’t realise there are things that could affect you.’
He reveals that the whole experience has changed him.
‘Watching your loved one deteriorate every day, you’re not the same person. This has taken its toll on me and affected me mentally. It’s eaten away at me,’ says Uamar, who has accessed counselling.
‘But it’s also showed me not to be arrogant, got me in touch with my emotional side, and made me more mature.’
Having been through such a difficult experience, Uamar wants to help other relatives and carers of people living with dementia.
‘I want to put it out to anyone who has the mindset of “I can do it all myself” that everyone needs help,’ he says.
‘There’s no shame in asking for it. It makes life so much easier to come out of denial and accept that you need help, then things will get better for you and the person with dementia.’
And as he continues to emerge from such a challenging chapter of his life, Uamar offers words of comfort for those who are still experiencing the toughest of times.
‘I want people to know that it’s going to be OK,’ he says. ‘Even if things are extremely hard, there’s always light at the end of the tunnel.’
Carers: looking after yourself
Supporting a person with dementia can be positive and rewarding, but it can also be challenging. Looking after yourself is important for both you and the person you are supporting.