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Amongst other things, this is a love story.... the theme changes occasionally... this year it is fitness and learning to love yourself.

10 April 2015

Inhalation annihilation #atozchallenge Care for the Carers

Two days after her 73rd birthday my Mum took her final breath. She had Alzheimers and Motor neurone disease. For her final 3 months I was her main carer. A privilege I am grateful for and will cherish forever. This years #atozchallenge theme will focus on being a carer / care-giver.

Remember to care for the carers.  

Inhalation annihilation.

We never found out which type of MND (otherwise known as ALS - Amyotrophic lateral sclerosis - or Lou Gherig's disease) Mum had. 

Of course I used Dr Google but even that was inconclusive... Her onset and progression of symptoms overlapped, there were no definitive answers.  

Three weeks before she died her Neurologist asked me if she had been tested for Parkinsons disease, several of her symptoms were inconsistent with both MND and Alzheimers.  - I still shake my head when I think - it should have been me asking the neurologist for answers not the other way around.  

He also said she was doing better than he expected and booked the next appointment for 2 months later. I knew he was dreaming but he gave me some false hope that she might stabilise and live a bit longer. It was obvious to me she was declining rapidly, but she was the master of keeping up appearances.

Some MND sufferers lose their voice and learn to communicate with tablets or iPad apps. Others lose the ability to swallow and are fed by tube. The muscles of the legs and hands become weak and many lose the ability to walk or hug before everything else. 

It was Mum's lungs that were the weakest. Shortness of breath her main affliction, and there was no treatment available to help her... except low dose morphine, fans, loose clothing, minimal exertion, comfortable positions and lots of rest, 

The Doctor said she was lucky. Not being able to breathe was one of the more peaceful ways of dying.

In the end I gave her two tasks to do on her own. Say the word "help" whenever she realised she needed something, and the hardest most important job of all... just try to keep breathing.  She said 'Thank-you your so kind and I think I can manage that much.'

She was able to chew her last meal, give hugs on her birthday and tell everyone that she loved them right up until the day she died.  

As I find and read through MND support group pages on Facebook I see how awful this disease is and how it affects people in different ways. Maybe her neurologist was right. I can appreciate how fortunate we were.  

But still I wonder... How/Why?

  1. A reading from the Book of Wisdom 3: 1-9
  1. In the eyes of the unwise, they did appear to die, 
    their going looked like a disaster, their leaving us,
    like annihilation; 
    but they are in peace.

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  1. It is such a hard thing, to see the people who have raised us, the people we love, rendered so frail.

    1. I get some sense of peace out of thinking at least it is better than the other way around. A parent losing their child.

  2. Thank you Ida. What a blessing that she was able to be with you on her last day and say the words she wanted to say, which does not diminish the struggles on all sides leading up to her final breath.

    The Book of Wisdom reading is so - real.

    1. The reading was one that was read out at her funeral.

  3. I finally find my way to your blog to say hello! I am glad to see that you are A-Zing again. I am very sorry to hear that you lost your mother to such a horrible disease. I can only guess that you were a solid comfort to her in her final days. I have no doubt that she is at peace now.
    Brandy from Brandy's Bustlings

    1. Hello Brandy, glad you found your here, I can only hope that the comfort I like to think I brought her was solid :)

  4. Hi Ida .. I think you are right she probably had an easier end - it's just not easy .. and we never know what is going to happen to our dear ones or to ourselves ... but she is at peace and she was able to share her love with you ... thanks so much - with thoughts Hilary

    1. Many of her friends say she died like a saint. In her sleep, peacefully. Certainly easier but you are right, not easy.

  5. What an awful disease, Ida. Yes, your mum was fortunate to go so quickly and the way she did. Fortunate for her; I know you must miss her very much and found it heartbreaking to watch her decline. Above all, she is fortunate for your companionship, care and love in her last days.

    Samantha Mozart