When I was a teenager my mum asked me to sign a piece of paper to say I would be her guardian and power of attorney, with my brother. I remember at the time a part of me cringing at this responsibility. What would that mean for my life? How responsible would I be to advocate for her and for the end of her life? Did it make me responsible for her in ways I didn't want to be as her daughter. But then other parts of me said of course I would sign it. Of course I would make sure she was always taken care of and of course I would make sure her end of life was what she wanted.
My mum was 40 at this time, her mum had passed away from Huntingtons Disease, so she very clearly knew what her future looked like. Her aunty also had HD at this time and was very sick with the illness in a nursing home. She was being tube fed to keep her alive. I can always remember my mum after visits to her aunty crying in fear that that was going to be her. She would make me promise that we would never do that to her. She didn't want to be kept alive in a bed, with a tube feeding her, when she could no longer swallow. She didn't want to be kept alive with any medical interventions. So she did the one thing in her power at this time to ensure that didn't happen and she wrote a living will.
Slowly slowly over the next 18 years she lost all of her abilities and the
nightmare of what she knew would happen unfolded.
I always had an idea in my head of how my mum would die. I'd read a lot of
stories about people with Huntingtons Disease choking, or not being able to eat
and slowly dying from this, or getting pneumonia and dying. So I imagined that
this was something like how my mum would die. I imagined I'd get a call from
the nursing home, I'd be there with her, perhaps sleep over and stay with
her until she died. I imagined we would have a palliative care nurse, we would
play music, have candles and I'd sleep in her bed with her. But it didn't happen like that...I had driven from Newcastle to Kempsey to visit mum in November 2013. I remember on this visit mum was particularly quiet and sleepy. But she was loving the kids, and looking fairly peaceful. I did wonder though if she was OK as she kept dozing off to sleep in her chair, which wasn't so normal for her. I did my usual jumping into bed with her, hugging her and telling her I love her. I told her I'd see her at Christmas (after her giving us a childhood of being Jehovah Witnesses and refusing Christmas.. She now decided this was something she loved and wanted a Christmas tree and all!)
I drove back to Newcastle and it was now very busy end of year christmas, school
assemblies, presentations and dance concert time for my 3 kids, so I got stuck into all that
jazz. On the 10th December I was at my kids award ceremony and I got a missed call from the nursing
home and then a missed call from my dad. I looked at my phone and knew I should go outside and return the calls.
I rang my dad. My mum had passed away.
As much as I'd waited for this moment for years I was just devastated. I stood there in the yard of where the presentation was being held and I felt shocked. I felt instantly separated from everything that was happening around me. How? She had been sick during the week with a flu. But dying?? Just like that? Without the call to say come.. Death is near. Yep she was gone. She died on her own, in her room, where she spent most of her time these days. The nurses had checked her, closed the door to call a Dr, gone back to check her and she had passed away. No fuss, no big deal.. Just gone.
My imagined idea of being there with her during her death faded away...and again life showed me that things don't always go how we imagine... or plan.
I found my kids from the presentation and quickly dodged all the teachers and parents. I got my kids into the car and let them know that their nanna had passed away. They cried and cried. We all drove home in tears and shock. After all these years of sickness her body had died. My chest filled with heavy heavy bricks...and the reality that Huntingtons Disease kills people, set in.
The phone calls to family and friends started and funeral preparations began... But given we were in the period of year where there is "all that jazz" going on, my daughter had her dance concert which she very much wanted to attend. So I decided I couldn't go home to Kempsey for another 5 days, until she had done that. It felt like one of those incredibly hard moments where being a single parent tears me in different directions! And I can't be everywhere I'm needed. But we would try do it all.
It was the most horrendous 5 day wait of my life, not being able to be home with my family straight away. I felt so torn in my mothering role, and my role of mothering my mother! My body needed to be "home" with my mum, but she was already gone. So I organized a funeral over the phone with my family. And cleaned and cleaned and cleaned my house until those 5 days and a dance concert were over and we went home to be with her.
My mum's funeral was the saddest day of my life. Seeing her body laying in her coffin and her spirit not there was heartbreaking. I looked at her face and had a very strong feeling of "she has gone to another room".
We then celebrated the life she had with us all.
Now... 4 years on each anniversary of this time feels so different. The first year after she died was a haze. My whole life often revolved around my mum and now she wasn't there. My identity changed, my family changed, everything felt different.
Slowly as the years pass by anniversaries are gentler and those changes have settled into a new normal. I have many days of grief where I feel like someone is stepping on my chest. I miss her hugs. I miss the safety of her presence. I can still find that feeling when I visit her grave. I lay on top of her grave, just like I used to lay in her bed at the nursing home and I feel that same feeling of comfort and safety I always felt with her.
That feeling will never die.
I rang my dad. My mum had passed away.
As much as I'd waited for this moment for years I was just devastated. I stood there in the yard of where the presentation was being held and I felt shocked. I felt instantly separated from everything that was happening around me. How? She had been sick during the week with a flu. But dying?? Just like that? Without the call to say come.. Death is near. Yep she was gone. She died on her own, in her room, where she spent most of her time these days. The nurses had checked her, closed the door to call a Dr, gone back to check her and she had passed away. No fuss, no big deal.. Just gone.
My imagined idea of being there with her during her death faded away...and again life showed me that things don't always go how we imagine... or plan.
I found my kids from the presentation and quickly dodged all the teachers and parents. I got my kids into the car and let them know that their nanna had passed away. They cried and cried. We all drove home in tears and shock. After all these years of sickness her body had died. My chest filled with heavy heavy bricks...and the reality that Huntingtons Disease kills people, set in.
The phone calls to family and friends started and funeral preparations began... But given we were in the period of year where there is "all that jazz" going on, my daughter had her dance concert which she very much wanted to attend. So I decided I couldn't go home to Kempsey for another 5 days, until she had done that. It felt like one of those incredibly hard moments where being a single parent tears me in different directions! And I can't be everywhere I'm needed. But we would try do it all.
It was the most horrendous 5 day wait of my life, not being able to be home with my family straight away. I felt so torn in my mothering role, and my role of mothering my mother! My body needed to be "home" with my mum, but she was already gone. So I organized a funeral over the phone with my family. And cleaned and cleaned and cleaned my house until those 5 days and a dance concert were over and we went home to be with her.
My mum's funeral was the saddest day of my life. Seeing her body laying in her coffin and her spirit not there was heartbreaking. I looked at her face and had a very strong feeling of "she has gone to another room".
We then celebrated the life she had with us all.
Now... 4 years on each anniversary of this time feels so different. The first year after she died was a haze. My whole life often revolved around my mum and now she wasn't there. My identity changed, my family changed, everything felt different.
Slowly as the years pass by anniversaries are gentler and those changes have settled into a new normal. I have many days of grief where I feel like someone is stepping on my chest. I miss her hugs. I miss the safety of her presence. I can still find that feeling when I visit her grave. I lay on top of her grave, just like I used to lay in her bed at the nursing home and I feel that same feeling of comfort and safety I always felt with her.
That feeling will never die.
