In September 2019, we got the devastating news that my mum, who lived in New Zealand, had Motor Neurone Disease. It had started as mild slurred speech back in April and her voice was fading fast. In one of our FaceTime chats, I got a video capture of mum saying ‘Bye love’. I didn’t know at the time that this video would be the most precious two words I’d ever record.
I flew from London to Wellington in early October to say goodbye to mum. I planned to return to London at the end of the month.
I arrived on 8th October 2019 to discover the horrors of mum’s rapidly progressing disease and my 79 year old father’s chronic anxiety and panic attacks. Mum could no longer talk, her chewing was going as was her ability to walk.
It was clear what I had to do. It wasn’t so much of a choice as it was an intuition and a duty.
I told dad, as he cooked me a welcome home barbecue on the day I arrived, that I wouldn’t be going back to London at the end of October.
“What do you mean?” he asked with fear in his eyes.
“You won’t be doing this alone Dad,” I replied with tears in mine.
My little old dad grabbed hold of me and sobbed with relief.
I’d never seen my dad so afraid or vulnerable.
I called my partner in London and explained that I had to stay in NZ until mum died. As I knew he would, he said, “Do whatever needs to be done.”
With that, I resigned from my usual day job and joined mum on this final part of her journey, which in turn would become my most important growth period to date.
The stress of being a full time carer of someone with MND is extreme. Supporting my elderly father in his panicked state was also extremely difficult.
Two weeks in I was beginning to come out of shock and I could feel cracks appearing in my usually resilient self.
The stress reached a climax one evening while I was cooking dinner for mum.
All her food had to be entirely pureed because her swallowing capacity was diminishing by the day.
While cooking, I was listening out for mum swallowing her thickened cup of tea to ensure she didn’t choke. As the potatoes boiled, and I listened to mum’s swallowing, dad began having yet another full-on panic attack which made him retch into the laundry sink. Between mum, dad and the potatoes boiling over, I felt like I was the one who would die - that evening.
MND was going to kill mum, possibly dad, but there was no way it was going to kill me as well.
That night I emailed all of my siblings and the medical and hospice team involved in mum’s care asking for help. It arrived with force immediately.
Somehow I managed to slot into manager mode and instinctively my top priorities were mum and dad being safe, loved and happy as much as possible.
At the end of October, mum shared her funeral wishes with me while dad had a nap so as not to distress him. She cried with me as she shared what she had written.
I promised mum I’d be with her until she died. Mum wasn’t happy with this because she was worried about my relationship with my partner in London and didn’t want me to stay in NZ for years.
Intuitively, I knew it would not be years.
“But how long will you stay?” mum wrote on her mini whiteboard.
“I’ll be here just a day at a time mum,” I answered. “You were there for my first breath, it’s only right that I be there with you for your last.”
Mum cried some more and I held her and I looked into her eyes with love, warmth and gratitude. Yes it was sad but, more than that, it was a beautiful moment and opportunity for me to love mum and ease any stress or fears she had about dying.
As I continued to look into mum’s eyes, I told her that I had no fears about her dying but that if she did or if she was worried about anything she could tell me and I’d take care of everything I could.
She wrote that she was worried about dad and that all she wanted was to have a happy and loving time together while they could and that she wanted to die at home.
I promised mum that I would be there with dad to look after him all the way and after mum died and that we’d do our absolute best to grant mum’s wish to die at home.
Every day that we now shared was an incredible gift to be very grateful for.
The days always had been a gift but somehow it now seemed that we’d taken them all for granted.
Yes it was devastating to watch mum fade away but I chose to be grateful for each and every second of mum still breathing, no matter her inevitable deterioration.
The days, weeks and months passed very quickly, in reality, and living in the day and the moment was all we could manage. Caring for mum kept both me and dad very very busy. Our lives were now lived in two-hour shifts which were dictated by our new routine, based around mum swallowing whatever we could puree for her.
Early on, Mum decided she didn’t want to have a feeding tube inserted directly into her stomach. That was her right but meant that she was at risk of choking, or pneumonia, which added to her distress and stress for us all. We of course respected mum’s wishes but on two occasions the only thing that stopped mum choking was us hitting her on her back.
Having a choice in how you live your life is always important but even more so as we die.
The goal should always be living well and fully but even more so when we are dying.
Moving forward to April 2020, mum could no longer walk more than 30-40 steps a day, there was no speech at all, but she could still laugh thank goodness (and then drool, which always made us laugh even more), she’d lost a lot of weight, her bones were showing, her energy was gone, she now slept in her chair at night as she couldn’t breathe easily when lying down, she was swallowing less and less and it was taking longer and longer to do everything.
A 10 minute hospital appointment, less than a 2 minute drive away, would take up to 3 hours to complete. Caring for mum at home was getting close to impossible. As soon as mum could no longer stand or walk, we’d need to think about other care options.
On 16th April 2020, mum woke us up at 7:45am by banging on a metal dinner tray. She was in excruciating pain. Mum had been entirely pain-free prior to this.
It turned out that mum had waited to wake us up as she wanted dad and me to have a decent sleep. She’d been in extreme pain since midnight. My mum was this person.
To mum, our sleep was more important than her agonies and comfort.
Her colouring was very pale and her hands and feet were cold.
Mum looked and felt like she was dying.
Her body was shutting down.
I knew this was the beginning of the very end.
The ambulance arrived, gave mum pain relief and took her to hospital at 1pm. I relaxed as they drove away as I knew mum wouldn’t be coming home and that she was at least loved and safe, if not happy.
Two out of three ain’t bad.
All this, of course, happened during the COVID-19 lockdown in NZ. As such, I was not allowed to go with mum and dad to the hospital so waited for news at home.
The shocking and surprising news came at 5pm.
The doctor who assessed mum called me and told me that Mum had bowel cancer and was dying. Her colon was completely blocked and dead already. Mum had hours or possibly days to live.
I’d never been so grateful or relieved to hear that someone was
dying from cancer.
The doctor made arrangements for me to be allowed into the hospital while it was locked down. I left for the hospital immediately and spontaneously thought to take a large photo of all seven of us in our immediate family for mum to see. Because of the lockdown, there was no way anyone else from the family would make it into the hospital or into NZ from Australia where two of my siblings were living.
The hours beside mum in her single room sped by. We kissed her and tried to comfort her but eventually she began to drift in and out of sleep.
At some point mum gestured she needed the toilet. Me, dad and the nurse got mum there using a wheelchair that hovered above it.
While on the toilet, mum stopped breathing.
The nurse said, “Oh, I think she’s just left us.”
I was kneeling down in front of mum, still holding her feet on to the footrests of the wheelchair.
Mum’s eyes looked through me.
I looked into mum’s eyes in disbelief.
She can’t be dead, I thought,
not on the toilet.
I whispered, “Mum, I love you.”
After a very long minute, mum took another breath.
Talk about tension and suspense.
At 1:30 in the morning, on 17th April, Mum gestured at dad and me to leave.
She was so distressed at us still being at the hospital and not sleeping that we had to leave to calm her.
I said to mum that if she needed to die in the night that it was okay and that she should go. She partially opened her eyes, looked at me and gently shook her head.
She had no plans of doing that.
Not yet.
We agreed that we’d leave, if she allowed more pain medication to be administered. She nodded and we left.
There was no phone call in the night so we shaved and showered and went to the hospital.
In the few hours we’d been gone, it was clear that mum had deteriorated further.
Mum’s eyes were mostly closed, she was even paler and her hands were colder than when we’d left her. She was, however, completely conscious and aware that we were there with her.
Somehow mum gestured to me that she was thirsty so I gave her 5ml of water from a syringe.
That was my mum’s last drink.
Less than an hour after we arrived back at the hospital, at 10:30am, 17th April 2020, while dad and I held her hands, mum took her final breath.
On reflection, I now know that’s why she shook her head when I told her it was okay for her to die while we were gone.
She wanted us there.
She waited for us to come back.
And of course, mum wanted us to get a good night’s sleep.
This was my mum.
I’d put money on it that this is why she didn’t die on the toilet the night before. She wanted us to be able to sleep that night. She knew that her dying on the toilet would mean we wouldn’t sleep at all.
Mum’s final lesson to me was clear: Love everyone unconditionally and help them live fully always - especially while dying.
In less than 24 hours in hospital, mum had died.
It was all over.
Or was it just beginning?
It’s hard to know sometimes - even now.
I arrived back in London on 10th June 2020, to a chaotic lockdown that NZ had seamlessly just come out of.
Almost exactly eight months to the day from when I left, for what I thought would be three weeks, I was home.
My loving and beautifully supportive partner welcomed me home with open arms and our house and garden did too.
Thank goodness I returned to summer.
It was my third summer in a row.
There is always a lot to be grateful for, even in our darkest of times.
Being unemployed but also self-employed as a coach, with some savings, I had no massive concerns about coming back to London.
However, upon arrival, I discovered there were about 30 dirty nappies, several shoes, balls of varying sizes and one wallet, that foxes had dragged into our garden while the three cubs were teething and learning how to be sly.
This was a powerful reminder that life was very much continuing.
So what now?
The world had changed because of a pandemic. Honestly, given what I’d just been through, I didn’t care much about that at all.
But my world had changed. I had changed. And for the first time in months, I was excited and optimistic about my unknown and uncertain future.
This might sound odd, but I knew what I’d helped mum and dad achieve in NZ was for a much higher purpose than even I know now as I write this. It will all be revealed when the time is right, usually in hindsight, so I’m relaxed and open to what develops and how this experience translates into my life and my coaching work.
I’ve always been passionate about coaching people to live quality fulfilling lives.
My coaching passion has always been about living well now, developing quality relationships with ourselves and others and empowering people to develop greater confidence and authenticity. For obvious reasons, I am now also very interested in coaching people to live well while they are dying.
When we think about it, a lot of us get to choose how we live everyday right up until our last breath.
The coaching world uses the phrase ‘unconditional positive regard’, a concept created by Carl Rogers.
Possibly this phrase was developed because the word love is too scary in a professional setting.
Interestingly, most people agree that what matters most at the end of the day, if not their lives, are quality health, relationships and love.
So this is what I’m doing:
I’m taking what matters most in the end and working backwards and I’m starting today.
Dedicated to my beautiful Mum, my first Coach.