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Mum & MND

Community, Personal Stories

12 May 2024

Family photo - Hayley and Kirsten

Pictured from left: Kirsten, Beverley, John and Hayley

Today, as we are celebrating mothers, we are thinking of those who lost their mums to MND, and those mothers walking the hard path of MND. We are beyond grateful to our very own Hayley Forrest and her sister Kirsten, for sharing their story.

Hayley:

“It was June 2017, three days before her 66th birthday, that mum received her diagnosis of motor neurone disease.  It had been a long, uncertain time reaching this diagnosis, and it was not one you would wish on anyone.  I remember receiving a tearful phone call from my sister Kirsten who had to deliver the news to me that day.  I was living in Wellington, while mum, dad and Kirsten lived in Auckland, and I felt completely helpless being so far away from them. 

I remember Kirsten reaching out to the Auckland Support Advisor of the time, Linda, in a long email in the early hours of the morning.  From that day forward Linda became part of our journey, followed by Toni when mum and dad shifted to a new area.  As I was in Wellington, I was encouraged to contact my local Support Advisor, Moira, who visited me at home, offered a compassionate listening ear, and made me feel less alone.  Little did I know that these wonderful women would be my colleagues in the not-too-distant future.

In February 2018, I packed my whole life up and made the move back to Auckland so that I could help care for mum, support my dad and sister, and give mum quality time with her only grandchild at the time, my son Riley.  Riley was only two years old.  I’ll never regret giving mum that time.

Soon after moving to Auckland, I started working for MND NZ, which has turned out to be the most fulfilling, purposeful role I’ve ever had. 

Watching someone you love getting weaker by the day and losing more and more of their ability to move, speak, and breathe is heart wrenching.  Watching dad get completely emotionally and physically exhausted from being mum’s main carer was almost as heart wrenching.  There were a lot of tears, plenty of frustration and anger, many grim conversations, but amongst that, there was still laughter and joy.  We made more memories and even called upon mum to leave memories for us for after she’d gone.  Mother’s Day 2018 Kirsten gave her a gift called “Mumma Says”.  It was a jar of questions and a tripod for her mobile phone so she could record videos for us to watch after she’d died.  Questions like “what do you love the most about dad”? and “what is your message for Riley on his 5th birthday”?  It was so special to watch these videos after she’d gone.

We will be forever thankful to mum’s beautiful carers who treated her with such dignity, gave dad a short break each morning to eat breakfast and read the newspaper, and made mum laugh. 

We are also hugely grateful for mum’s work colleagues who picked her up and took her to pub quiz every week.  She so looked forward to these outings.  When it became too difficult to go out, they never stopped visiting for “wine o’clock” every few weeks.  It was very clear how much mum meant to them.

There were many dark times too.  I recall Kirsten calling me early one morning in tears in the middle of a panic attack.  I recall dad, the strongest man I know, calling me while I was at work.  He was all choked up and said he didn’t know what to do.  He was exhausted and needed a break.

When mum’s time came, we were all with her.  Talking, holding her hand, stroking her hair, reassuring her that we’d be OK.  She slipped away peacefully on 28 November 2018 – 67 years young.

I am so proud of how stoic mum was throughout her journey.  I’m so proud of all of us, for pulling together as a family though our darkest days. 

Happy Mother’s Day to all the mothers walking this journey, and remembering those that have left us”.

Kirsten: 

Mum was diagnosed with MND on 27 June 2017 at 2.22pm.

I know the exact time the doctor said those 3 horrible words, that I had never heard before ‘motor neurone disease’, because I still have the audio recording I took during her specialist appointment at Middlemore Hospital. I was worried that I would forget something he said that I needed to pass on to Dad or Hayley. Dad was in hospital himself at the time, recovering from major head surgery having had a tumour removed the day before. June 2017 was an absolute shit show and I still to this day shudder thinking about it.

I had no idea what MND was. When the doctor said those 3 horrible words, Mum let out a big sigh and said, “that’s what I was scared you were going to say.” She’d been googling. And fair enough. After numerous MRIs, a knee replacement, and a lot of specialist appointments, she wanted answers. This was not the answer she wanted and definitely didn’t deserve.

The days that followed – we were numb. Breaking the news to Dad while he was still recovering in hospital was hard, and then to my sister over the phone. Hayley was living in Wellington at the time. It felt like a-lot to handle, but I wasn’t alone, my friends were so incredible. Linda Oliver from MND was huge support too in the early days. I’ll never forget the email I sent her in the early hours of the morning. She called the next day and just sat and listened to me cry over the phone. Thank you, Linda.

As the MND took hold, Mum never EVER lost her positivity. Her primary concern was always everyone else and how WE were coping. There was no time for wallowing. We went shopping, ate all the good food, drank all the good wine, watched her favourite movies, went to shows, and did all the things she loved for as long as we possibly could. Dad even bought a mobility van so we could get mum out and about once she was in a power chair.

In September 2017, my now husband, Casey, asked me to marry him. We had our wedding in April 2018, bringing the date forward so Mum could enjoy and be a part of it. Mum was there, for the dress fittings, the hens do, the lot and I’m so, so thankful she was. It was Casey’s idea to give Mum a jar full of questions on Mother’s Day, and get her to video record the answers for us. Stuff like ‘a message for Riley on his 5th birthday’ and ‘what do you love about Dad’.  I watch the videos when I want to see her and hear her voice again.

On Saturday 24 November 2018, I could finally tell Mum some good news, we were expecting a baby. And 4 days later on 28 November 2018, she passed away. I’m so glad she knew, as she knew we had wanted to start a family for some time. I wish she could have met our little boy Fergus, and later our daughter Quinn. But I’m glad she got to be a Nana to Riley for at least a little while.

We notice all the time the big gap she left behind. Every family dinner, birthday party, special occasion or milestone I think ‘Mum should here’. Handing out the sausage rolls at my kids’ birthdays. Giggling away with the cousins and aunties at a family gathering. Taking photos on her phone like she’s just learned to use a phone. Being a loving, doting Nana to her grandkids and spoiling them rotten. 

We knew back then how much we would miss her, but of course it’s taken me being a Mum myself to truly know the depth of the sacrifices she made for us, and how truly lucky we were to have her as our Mum.

I miss my Mum. She really was amazing. So generous, kind and happy. Always happy. She loved people – her family and friends were everything to her. And we all loved her back. Hopefully she knew just how much.  

Happy Mother’s Day Mum.

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