Coping with grief and Parkinson's

Tahira spent almost a decade caring for her husband Ashiq, who was diagnosed with Parkinson's in his 30s. Ashiq died after doctors diagnosed a hole in his heart. Together with her 3 children, Tahira is searching for new meaning in her life, while the family try to keep the memory of their beloved husband and father alive. 

Tahira was just 15 years old when she married Ashiq, then 21, in Pakistan. People often ask her if she ever regrets getting married so young, and she always responds in the same resolute way, "No. Never. I’m glad I did it. That was the best thing I ever did."

They moved to Manchester where they worked hard bringing up their 3 children. They were blissfully unaware during the happy, busy early years of their marriage that on Tahira's 26th birthday their world would be turned upside down, when Ashiq was diagnosed with Parkinson's. 

A life-changing diagnosis

Before his diagnosis, Ashiq had hidden his tremor from the family. But Tahira became suspicious, noticing that he was hiding his hands, which would shake when he held a cup or knife and fork. They approached his GP and were referred to a neurologist, who eventually diagnosed Parkinson's. 

As Ashiq's condition progressed, he developed extreme stiffness in his shoulders and found it difficult to sit up straight without support. Despite these challenges, Tahira describes him as a strong person.

"He'd sometimes cry, but then he'd get over it – just pick himself up and carry on. I think that was for the sake of the children. He didn't want his kids seeing him break down. He was so courageous. It was unbelievable. I couldn't have coped the way he coped."

When Ashiq was here he put a smile on our faces – he made us laugh. Even though he had Parkinson's, he made our lives busy, happy. 

Over the next few years, with the complications created by several other illnesses, including diabetes and post-polio syndrome, Tahira and her children (who were then in primary school) had to take on the responsibility of providing full-time care for Ashiq.

Looking back at that time, the family describe how it brought them closer together, and made them stronger.

"We strongly believe in Allah, and we also believe that if Allah sends a burden on you then he gives you the courage to take it on. I think that belief got Ashiq through it – and me and my kids for that matter – the belief that we're going to pull through this.” 

They worked together to support Ashiq and everyone helped out where they could. 

"My eldest daughter Zainab, would help cook food, wash Ashiq's clothes and make sure that the medication was given on time" she says. "Zubair would help me carry Ashiq, give him a bath, take him to the toilet, clean him and things like that. Ozair, the youngest one – he'd get away with doing less!"

Despite being clearly proud of them, she struggles to come to terms with the effects that caring duties might have had on her children.

"They had no childhood. They helped with everything, including personal care. They were always inside caring for him, carrying him upstairs. And they never frowned. Because of his Parkinson's we didn’t socialise. But they never said: 'No I’m not helping.' Actually they've looked after me as well. I know for a fact that I couldn’t have done it without them."

Ashiq died in 2012 when doctors discovered a hole in his heart. Tahira describes feeling alone and isolated at the time, and unsure of the future. She explains that a silence descended on the house, that they still struggle to adapt to even now:

"My daily routine and mentality changed dramatically. I felt so low and my life came to a standstill. It went quiet – the day he passed away, everything went quiet. It was like: 'Well what do we do now?' I felt lifeless."

Remembering Ashiq

Since Ashiq passed away, Tahira has struggled with her own health problems, including obsessive compulsive disorder (OCD), depression and agoraphobia, for which she is receiving treatment. The family are still trying to adjust their sleep routines, finding that even now they wake up throughout the night, as they did when Ashiq needed night-time care. As Tahira puts it: 

"I don’t know how to explain it. He may be gone in the form of a body but he's still here."

Tahira sometimes finds it difficult to talk about the family's situation. But as memories come back to her, she soon brightens up again.

"When Ashiq was here he put a smile on our faces – he made us laugh. Even though he had Parkinson's, he made our lives busy, happy. We had something to do. There was something in life that made it worthwhile."

The family still feels they've not moved on or entirely come to terms with the loss of Ashiq. However, these happy memories help them to carry on.

"We talk about the past, about the good times, and the funny times, and the downright naughty times. I think that's how we got through it.” 

Tahira's 3 children are now reaching young adulthood and are succeeding in school, university and new jobs – something that they know would make their father very proud. Even though Tahira believes that she still hasn't got 'back to normal', she too is beginning to take positive steps to find new meaning and purpose in her life. Despite her agoraphobia, she hopes to find ways to volunteer for Parkinson's UK, and is looking into opportunities to raise awareness and support other carers. 

My husband had Parkinson's. He's gone, but Parkinson's is still here. I want to help others and say to them: 'You're going to get through this'.

Since Ashiq's death, Tahira's mother has also been diagnosed with Parkinson's. Although it is her brother who cares for her, Tahira is always on hand to offer support and the benefit of her experience. She is driven to let others going through similar experiences know that they are not alone. She advises:

"Talk to someone. Whether that's your GP, a counsellor, or a friend, or even your pet. You're not alone – we're all with you."

Tahira rejects any description of herself as strong, determined or potentially inspiring. But it's clear she has been profoundly influenced by the experience of caring for her husband. She refuses to accept that his story is over and that she should simply move on. 

"My husband had Parkinson's. He's gone, but Parkinson's is still here. I want to help others and say to them: 'You're going to get through this'. You might say it's a cliche by saying there's light at the end of the tunnel, but you can make that light – you can make a difference to somebody's life."

Get support

Our helpline and local advisers can support anyone with Parkinson's, their family or friends. Call 0808 800 0303 to get in touch.