Dad had motor neurone disease, we thought the Foyle Hospice was just for people with cancer

Jennifer's Dad Arnie Doherty.
Jennifer's Dad Arnie Doherty.

Jennifer Maloney lost her daddy Arnold Doherty (69) at the Foyle Hospice on Good Friday 2014. But she reveals even though it was the worst of times for her family, their experience of the Hospice was also the best of times.

When I used to get the school bus to Thornhill College many years ago I passed the Foyle Hospice and always had a knot in my stomach driving by it, believing it was a place of doom, death and sorrow.

How wrong I was. But I only got to know more about the Hospice when my darling daddy, Arnold Doherty was diagnosed with motor neurone disease on August 18, 2012 – the saddest of saddest days.

Motor Neurone Disease (MND) – also known in America as amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s Disease - was not an illness we’d ever heard of until it came to blacken our door and break our hearts.

MND is classed as a rare disease – there are only between 100 and 120 people living with this terminal condition in Northern Ireland at any one time.

And now my daddy was one of them. Then there’s the word terminal. My daddy had a rare and terminal illness. He was going to die and myself, my two sisters and my mummy could not get our heads around it.

Being a journalist by trade all I wanted to do was research the condition and find out what care he’d need. There is no known cause or cure for MND, only one life-prolonging drug called Riluzole.

Google has a wealth of information but it’s not a good place to be for a distraught daughter who’d just learnt her daddy had MND.

During my many google searches the Foyle Hospice’s website kept coming up. I thought it just was for people with cancer. But I was wrong, the website explained it cared for people with other life-limiting and terminal illnesses.

It gave myself and my sisters hope that at the very least there was a place at the end of the Foyle Bridge where my daddy could go when things got worse – but we hoped and prayed that that day would be very far away.

But the average life expectancy of a person with MND is between two and five years and the survival rate from diagnosis to death can be as little as 14 months.

Doctors told us my daddy had a slow progressing form of MND and we hoped and prayed we’d have more time together but that was not to be. MND is cruel and unpredictable that way.

Each person’s experience with MND is different, so that’s a challenge too for the healthcare system. My daddy had numerous medical appointments over the following months from speech therapists to occupational therapists to district nurses.

Soon it was clear the illness may have taken over our everyday lives, creeping into every single area of our existence day and night, but it never took over our family spirit.

And then we heard the “Hospice” word again. The hateful, hateful MND was progressing quicker than any of us wanted. It took more and more of our daddy away from us. But his humour remained, becoming blacker, and he made us all laugh and smile when there was very little to laugh and smile about.

His mobility was drastically affected and he needed a wheelchair to get around. His breathing was compromised too with MND. His MND Association nurse suggested that he might go into the Hospice for respite. He resisted a few times.

But in he went. Just for a fortnight. Just for respite.

So I found myself on the Culmore Road turning into the Hospice, going to visit my daddy with a knot in my stomach and feeling teary.

What I found was akin to a hotel - modern, airy, spacious. And best of all it didn’t feel or smell like a hospital. Or what I thought a Hospice would be.

And when I found my daddy’s room I couldn’t believe how spacious and how at home he looked. My mummy was staying with him and he had all his home comforts there in his private room with an en suite bathroom.

We were allowed to come and go as a family over the next week or so and I can honestly say, weird as it sounds, we had the happiest and best times together sitting in my daddy’s room in the Hospice.

We have such fond memories of Shrek spin-off Puss In Boots on the TV and us watching it while my father watched the end of the Masters Golf tournament on an iPad.

He was a massive golf fan - in fact he almost didn’t go into the Hospice that particular weekend in case he missed the golf!

And we laughed so much in that room. It was the first time I think we relaxed as a family since my daddy’s diagnosis as we knew expert medical help was so close at hand.

The staff were amazing – everyone from auxiliary staff to the doctors and nurses were exemplary. I later found out that medics had been given training and education from the MND Association on how to provide care for people living with MND. 

The nurses treated my daddy like a VIP. A friend who also lost a loved one at the Hospice described them as “earth angels” and now I understand why.

As a family we attended the Hospice Mass together on Sunday morning. The Sunday before my daddy died was my last time with my daddy while he was conscious and it is still a very, very special memory for me.

The nurses took so much time getting him ready for Mass that morning, He looked so handsome, they took so much care making sure he looked respectable in his Sunday best. I’ll never forget how well he looked.

The following week was Holy Week and on Good Friday I got a call from my sister to my work in Belfast to say I should come home. I’d intended to go to Mass again that Sunday with my family – Easter Sunday. But that was not to be.

My daddy wasn’t expected to die in the Foyle Hospice on April 18, 2014. But he passed away late on Good Friday and we were all there. And he’d been blessed by Bishop Daly and Sister Anna earlier that day too. His unexpected passing surprised even the doctors, which still makes me smile. A friend said he “must have been very contented to die there”. I know in my heart he’d had enough of MND and he’d decided it was his time. He went on his own terms and he chose the Foyle Hospice.

Now when I drive pass the Hospice, I look back at memories of a place where my family and more importantly my daddy were the happiest since his diagnosis.

As a family we will always be grateful to every single staff member at the Hospice who ensured my daddy’s final days were filled with expert care, compassion and even, dare I say it, a little bit of laughter.