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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9 comments:

  1. Just to confirm, I now know what ALS or MND is about. Thanks for making me think. I am NOT going to do the ice water thing but I will make a donation.

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  2. I'm very sorry. I lost my mother last year to cancer, and you can never be ready for the loss or how hard it hits. Cherish all the time you have with her, and leave nothing unsaid.

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    1. Hi William. I remember your loss and I hope your life, without her, is making sense. I expect you are right about never being ready. Fortunately my Mum even knows that I often used to say "I don't care what the world thinks of me as long as my Mother doesn't find out." For many years we have both cherished our moments together, neither of us will have an regrets. Thank-you and , I hope you are well.

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  3. Hi Ida .. I know I was lucky my mother died ultimately after a stroke - she chose to live for a while with a feeding tube - that was for 5 years+ .. but she had her brain and we could talk, she was bedridden ... but accepted where she was at - she had had experience of old age having owned a care home ... I am much more aware of all the different ways old age can 'attack' us .. I am so sorry your mother has MND - but how wonderful you can go home and be with her and your sibling family for her end days ...

    I have noted the cold water buckets and the donations ... and am definitely more aware but again it's good to remind us .. I just feel for you - however ... you will have much to remember through your thoughts of today and those times ahead with your mother ... many thoughts - Hilary

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    1. Hello and thank-you for your thoughts Hilary. So many people don't have a clue about ageing, especially first generation immigrant children whose grandparents lived and died far from home. Knowledge certainly takes away the fear. I am sure your Mother accepting where she was at would have bought her and the family a lot of peace and joy... I would love another 5 years with Mum but I doubt she would enjoy being bed ridden ... P.S I did read your Ida post way back then... watched the movie preview - it was fascinating - sorry I didn't comment I get so easily distracted lately.

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  4. Ida, I had no idea of your Mum and her illness. I wish you strength in making this long trip .. and in facing the months and years ahead. For your dad too ...and siblings. How excellent that you and he will be able to provide loving care to her. All good thoughts for this next stage. And 72 is young ... too young.

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  5. I'm very sorry to hear this...I wish you and your family all the strength during this time and after...I didn't know about ALS before the ice bucket challenge... But It's a good thing that the awareness has risen...And yes 72 is too young..

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  6. What devastating news, Ida! My thoughts and prayers are with your Mom, you and your family.
    I'm glad that ALS is being talked about - I hope more light is shed on this illness.

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  7. So sorry to read about your mother, may you have some great times with her. I didn't know about ALS prior to the ice bucket challenge, bless those who started this awareness campaign. Be strong and take care.

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Feedback and your own stories are welcome.