Saturday, 6 September 2014

My Mum has Motor Neurone Disease. #ALS #icebucketchallenge

Some of you might recall I almost chose Alzheimer's disease as my theme in the 2014 #atozchallenge.  For several years my Mum's memory has reduced down to struggling to remember things, pretending to remember things and lots of repetitive stories and questions.

I chose not  to follow up with the Alzheimer's theme, because I had just returned from a vacation down-under and my emotions were charged.  I wanted to avoid further sadness, so I based my theme around the 26 Greatest loves of my life instead. Thanks mostly to my beloved pets, I didn't avoid tears but I did have a few laughs, realisations and releases along the way.  I wrote the shortest post about my mother but in some way each post I wrote was for her... she has often enjoyed living vicariously through me.

Several commenters commented that they thought the Alzheimer's theme would be valuable. I promised to use my experience with my Mother as well as my acute/palliative/aged care and dementia nursing to write about caring for ageing relatives, end of life care and loss, at some point.

Since June this year a lot has changed. My mother's hand deformity and loss of balance started pushing doctors in a different direction. She doesn't have Alzheimer's and never did.

If I had written this post 3 months ago not many of you would know what Motor Neurone Disease (MND) is. Many of you still won't because in the United States MND is called Amyotrophic lateral sclerosis (ALS) or Lou Gehrig's disease. Did you, or someone you know, throw a bucket of iced water over your head recently? It has been a great source of comfort to me that people know what MND is now. My heart reaches out to people who have watched their loved ones die of a disease that hardly anyone knew anything about before the challenge. In a very short space of time awareness about ALS/MND has elevated worldwide. Instead of blank stares when I explain why my mother is dying, people say 'how awful.' I don't need to explain anything which somehow makes it a bit easier, for me.

When I first found out Mum had been misdiagnosed, and had less than 6 months to live, I was angry. I wanted to scream and shout and share her with the world. She is the type of Mum that belongs in fairy tales and women's magazines from the 50's.  Perfect. Too perfect.

I still want to share her with the world, and I will. Her philosophies, devotion, guidance, recipes, mistakes and creativity are worth recording, and I don't have children of my own to pass them onto, but all that will come later.

Next month I will travel to my childhood home, approx. 16000 kilometres from where I live now, to help my Dad and siblings care for Mum in the end stages of her life. She still sounds good over the phone it's hard to believe this is really happening... she was supposed to outlive my Dad. I know she can stay strong, at least until that muscle atrophies. I'm not sure she know's how to be anything else.

I remember when I studied nursing, so much of what we were taught seemed like basic common sense. In reality, putting yourself in someone else's non-slip shoes and attending to all their daily living needs with dignity, is an acquired skill. So much of what we do everyday is automatic. It is impossible to imagine every detail that needs attention, especially with Motor Neurone and ageing in general. New obstacles present themselves almost every day.

Yesterday while lying in the bath I put my head under water and tried to emulate what 40% lung capacity feels like during a panic attack, it was scary.  I don't want my Mum to ever be afraid of anything...

I have often said (even to 70+ year old's losing their 90+ year old Mum's) that you are never to old to lose your Mum...

How did the response to the ALS ice bucket challenge make you feel? Did you get tired of all the hype or did you just want to see it keep going? I know the answer to those questions depend largely on whether you know someone with ALS/MND.  It is an horrible disease that is not restricted to the elderly.  Many young people are affected, were you surprised to learn that you did know someone?

My Mum is 72. She is not young, but not old enough either.

Please share your thoughts in the comments section below.


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