Retired GP Anil talks about his role as both a husband and carer for his wife Ramila, who has had Parkinson's for 10 years.
"If you live with someone, you don’t notice the subtle changes – but they were there,” Anil reflects. “Before Ramila was diagnosed with Parkinson’s, she used to make roti, a soft Indian flatbread. We laugh about it now, but the texture of the bread was getting harder, so she changed the flour she used. Actually, it wasn’t anything to do with the flour, but because her wrists were stiffer, she couldn’t knead the dough as well.”
There were other things too. Ramila was walking more slowly and her mood was low, something her and Anil had put down to grief after the death of her sister 2 years before.
“We thought things would just get better, but they didn’t,” says Anil. “As a GP, my experience of Parkinson’s was limited. But, I was aware of the main motor symptoms, so I suspected Ramila would be diagnosed with the condition. We’d talked about what it might mean and when the diagnosis was confirmed, we took it quite matter-of-factly."
A way of life
Caring for Ramila has now become a way of life for Anil. “Ramila is small-framed, so physically, caring is not particularly demanding. But as a carer, it’s sad to see someone struggling with the challenges that Parkinson’s poses.”
Mornings are particularly difficult, as Ramila is very stiff and slow before she takes her medication. “I help her wash and dress as she can’t do either of those things independently anymore,” explains Anil.
“There’s also so much more to the condition that I’ve had to learn about these past few years,” Anil admits. “Ramila has bladder problems, for example. As a doctor, I was very comfortable talking to patients about intimate problems.
"But as a husband, it’s more confronting talking to your wife about these issues. And for Ramila, there is a perceived loss of dignity, which can bring up difficult feelings. But eventually you do take these things in your stride.”
Given my medical background, I’m lucky I understand how to navigate the system, so I’m confident enough to pick up the phone and ask for help when we need it. This is what I used to do for all my patients – now I just have 1 to look after!
Facing personal challenges
“The biggest thing that affects my quality of life is that Ramila can’t get out of bed by herself. She often needs the toilet in the night so I help her to get to the bathroom. When we get back into bed, Ramila can immediately get back to sleep, but I will often find myself lying awake for an hour or more before I fall asleep. It can be tiring.
“I do worry Ramila may develop cognitive problems. I think you can cope with physical problems, but mental issues would be a much greater challenge,” admits Anil. “The other thing that worries us both is that we keep fit and well. I’m 71 now and in good health, but if something happened to me, what would happen to Ramila?
“I see Parkinson’s as a silent thief who has gradually been creeping into our lives and stealing so much from us,” Anil admits. “The frustrations of not being able to do all those ‘ordinary’ things you take for granted affects both of us.
“We have brilliant Parkinson’s nurses though. Given my medical background, I’m lucky I understand how to navigate the system, so I’m confident enough to pick up the phone and ask for help when we need it. This is what I used to do for all my patients – now I just have 1 to look after!
“Our local Parkinson’s UK group is also a great source of support for me. And it doesn’t go unnoticed that other carers there do a sterling job in circumstances much more challenging than mine.”
The current climate
“Lockdown’s had a huge impact on us,” Anil says. “We used to go to a weekly exercise class and a singing class, and our local group meeting, which I volunteer at. All of these things offered Ramila and I support and both of us a chance to socialise. Now we have a group Zoom call every couple of weeks, but it’s not quite the same.
“At home, we had a carer, Margaret, who came in 1 afternoon a week. She helped Ramila with different tasks and kindly did my ironing. We also had a cleaner, Mary, who came fortnightly. When they were visiting, I would normally go to the gym for a couple of hours,” Anil explains.
Restrictions have meant neither their carer or cleaner have been coming in, leaving Anil with plenty to tackle around the house. “My gym has been closed, which I miss, but I still go out and do the shopping,” Anil says. “I feel more sorry for Ramila, for whom it’s much harder to get out now.”
For the last few years, I’ve done all the cooking – a huge challenge for me as a complete novice. But Ramila looked after me and our two sons for many years, so it’s now my turn to be ‘Head Chef.’
Cooking up a storm
An unlikely, and positive, outcome of being a carer has been Anil’s culinary skills. 6 years into her diagnosis, Ramila began to struggle preparing meals.
“Before this, I didn’t know what a kitchen was!” Anil laughs. “I was very busy with my job, but I was also very spoiled. I started to help Ramila chop vegetables, and for the last few years, I’ve done all the cooking – a huge challenge for me as a complete novice. But Ramila looked after me and our two sons for many years, so it’s now my turn to be ‘Head Chef.’
“Ramila has taught me how to make different dishes and I took a 6-week cooking course at a local college too. My sister is also a great cook so I’ve picked things up from her. It’s been interesting learning how to create flavour combinations using different spices. We eat OK, I’m a lot better than I was, and I do enjoy cooking now – most of the time!”
“If you didn’t love somebody, I think being a carer would be very hard. It can be difficult and lonely sometimes. But Ramila and I have been married for 47 years now, and are looking forward to celebrating our 50th wedding anniversary in 3 years time. To me, this isn’t a duty. I love her.”