Living with MS: What it’s like to care for someone you love

My dad is a handsome, funny, Donegal man with a love for sport and wildlife. He also has multiple sclerosis (MS), and has been living with it since before I was born. It’s a progressive and incurable disease of the brain and spinal cord, affecting over 9,000 people in Ireland.

It develops in people whose myelin (a fatty tissue that helps electrical messages get from the nervous system to other parts of the body) breaks down and becomes scarred. This distorts, and often blocks, the regular flow of messages – a bit like a faulty electrical flex. It can result in the person becoming partly paralyzed, as is the case with my dad, though other symptoms such as severe pain, incontinence, blindness, and memory loss are common too.

Becoming a carer

When someone gets diagnosed, his or her whole world falls apart. I spoke to Jennifer, a woman whose mum has had MS for over 20 years. “It took a huge emotional toll on the family, understandably there was depression and anger that engulfed my mother for years.” It can be difficult for people to accept that they’re ill and that life isn’t going to pan out the way they’d hoped. Unlike other serious conditions, there’s no cure. Symptoms can be managed, but once the diagnosis comes, that’s it. No going back. They need constant, loving support and acceptance, and that’s where family comes in.

A 2019 RTÉ Prime Time special revealed that almost 200,000 people in Ireland are dedicating their lives to caring for their loved ones, providing more than 6.5 million hours of care per week. “I was the eldest kid in the house,” Jennifer says, “so my mum became very dependent on me. I learned that we have to let people deal with life in their own way. People deal with illness very differently – some people are so scared that they recoil away, while others are very vocal and emotional about it. That has to be accepted.”

Day-to-day adjustments

But it’s not just relationships that change when someone gets MS. Living arrangements often need to be adjusted too. In my family’s case, an extension was built onto the side of the house so that dad could sleep downstairs, and all of our doorframes had to be widened to allow for his wheelchair to pass through with ease.

For Rachael, a woman whose dad has suffered from MS since the eighties, driving was the biggest hurdle. “Dad is still walking, albeit with a cane, carrying his left leg, and it’s been seven years now since he could drive. The car was a killer,” she tells me, “it took away a lot of his independence. He’s no longer working, so without the car, he felt landlocked.”

Rachael’s dad used to always shuttle her and her brother around the place, looking after drop-offs, collections and food shopping. Driving was a welcome distraction for him for years, especially since the passing of his wife, Rachael’s mum, to melanoma in 2007. “He would drive to her grave daily,” she says, but now that the car is gone he relies on his children to get around. “We felt a certain guilt, I suppose, that dad was waiting for us to be able to get out, to break the mundane.”

Caring for someone with MS is a full-time job, one that my mam selflessly took on all those years ago. She’s loving and attentive, and she always thinks outside the box when it comes to making sure dad’s looked after. She’s a real-life superhero, which is handy, because external support is almost nonexistent.

The importance of MS Ireland

MS Ireland is the only national organisation providing support to the MS community, but its resources are beyond strained. They rely heavily on donations to stay running, and my goodness do we need them to stay running. They operate a respite centre in South County Dublin, where my dad has stayed on numerous occasions to allow mam go to family weddings, or even on a rare holiday abroad. The staff and volunteers are the kindest and most generous people, and the efforts they go to to look after other people is awe-inspiring. We’d be lost without the charity’s support.

Everyone is affected differently

Back home, the day-to-day needs of someone with MS can put serious emotional pressure on those around them. It’s not intentional, of course. But it’s the way it is. Rachael says, “Dad’s particular strain of the illness has hugely affected his short term memory. I can’t speak for him, but I think it’s the memory that’s hardest to deal with. We can go for dinner and dad won’t be able to tell you at dessert what he had for his main, but he can tell you what he had for breakfast 40 years ago.”

MS affects everyone’s body differently. While my dad’s memory is okay for now, his mobility is hindered. He hasn’t walked in decades and needs help with daily tasks like making tea, putting on a jumper, and getting in and out of bed. But his personality hasn’t changed a bit. He’s still the charming, witty character he’s always been. His strength and positive attitude keeps us going, something Rachael tells me about too.

“My father is one of the most caring, positive and resilient characters I know. He has been a fantastic father figure, even under some very trying, personal circumstances. We made a bold leap last Christmas and moved him from our family home to a new apartment in Malahide Village. As painful as this was for us, we knew it was necessary to give dad back his independence and a better quality of life.

“Given his memory, the process needed a lot of hand-holding and support. We needed to take some time out from our personal lives to help him get settled and spent the first few weeks shadowing him and challenging him to get from the apartment to the village and back. He went through this process with a smile on his face and no complaints… As hard and as stressful as it can be, he’s the one that drives us all on. I have yet to walk into his home and not be greeted by a smile – he is so inspirational and never gives in.”

Home help

When it comes to home help, services in Ireland are limited. A carer from a local agency calls out to my dad for a couple of hours every morning, but for the rest of the day, mam’s on her own until I get home from work. Jennifer’s family is in a similar position. “We really don’t have much outside support,” she tells me. “We have a lady, paid for by ourselves, that comes to help my mum in the mornings, but other than that my father is her caregiver and the family help as much as possible. I believe in-home care is so important, as people who are ill often find moving from their home traumatic.”

Similarly, Rachael says, “I’m sure there are plenty of amazing nursing homes around, but we didn’t want to take this route with dad just yet. We’re so lucky with the people in our lives; my husband is a rock of support and my brother’s girlfriend is equally as understanding. We have a small family – my mother’s brother is fantastic and my dad’s sister is great too, she’s always there for him.

“My brother and I watched Brendan Courtney’s very honest documentary on the struggles he went through with his father to find the best nursing home. It shone a light on the options available to families in Ireland, the financial strain associated with it and statistics about the quality of life for anyone going into one. Honestly, it scared me! As difficult as it can be trying to keep up semi-normality, our dad’s happiness is our priority.”

Drugs and treatments

In recent years, new drugs and treatments have been made available to newly diagnosed patients with MS. But they’re extremely expensive and, so far, only work for people with particular types of the disease. One of these treatments involves bone marrow transplants from stem cells, a procedure usually carried out on cancer patients. Doctors in Sheffield, United Kingdom, have found it to be successful among patients of ‘relapsing-remitting’ MS, and research is continuing to find treatments for patients with other types.

For now…

For now, each of our families will continue on as we are. As my mam says, “We’ll take each day as it comes. No matter how bleak things get, we’re survivors.

“We’ll always be together. We work as a team. It’s something I can’t explain – you could call it love, you could call it commitment – but whatever it is, we have it.”