Reflections A - Z challenge 2015

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.

A to Z Challenge 

REFLECTIONS 2015

As usual I use the Reflections post to give the A-Z challenge organisers some feedback as requested.

I also use it to link all my posts together, and give a little commentary on each.

Things I loved about participating in the 2015 #atozchallenge:

1. I did it. 
2. Caught up with bloggers that I haven't connected with since last year.
3. Connected with new bloggers that are on a similar journey to me.
4. Received supportive and encouraging comments that helped me finish the challenge.
5. The process of writing, with a firm structure but loose boundaries, has helped me  become a better writer.
6. The theme helped my healing process and seems to have given some other people an opportunity to share their own stories.

 Things I would like to see changed:

1. Nothing. The host's/helpers and overall challenge are great. Sure there are plenty of people that sign up and don't start or finish the challenge... but your system of removing them is good enough, and done by a dedicated bunch. I have noticed over the last couple of years people seem to complain most about things that can't be changed... 

Things I would change about myself.

1. Comment on and visit more blogs, I noticed a huge difference in the amount of visits to my page as a result of not blog hopping.  I do know it's one of the main points of the challenge... This years journey was just more personal.
2. Get in early - I almost forgot to sign up to the link list.  
3. Offer to be co-host/assistant.  I loved helping last year. It is a good way of forcing myself to visit more blogs. 

Here are the links to all my posts for this years challenge:


A to Z challenge Theme reveal.
I chose to write about the one thing I couldn't stop thinking about.

Anger and Anxiety
From the moment I saw the message that Mum had 6 months left to live, I have had a lot of reasons to be angry.  I think the main reason I did this years theme was to release what remained.

Bemused and Befuddled
Here's a fun poke at some of the baffling situations many carers experience.

Conflicted
How much good are we really doing when keeping someone alive prolongs their suffering.

Denying Degeneration
Maybe she was just a great actress - When her friends bid her farewell, she did show her movie star smile

Easter without her
If I had to choose a single holiday to start our year of firsts without her -  Easter wins.

Freedom from Fear
No I'm not a burglar, it's me your daughter.

Genes
Would you like to know how long you have left to live?

Hugs in Hell
When living on earth becomes it's own type of Hell.

Inhalation annihilation
Imagine your head underwater and only a tiny straw to breathe through - for months.

Joy - An ode to
Joy was her name.

Knowledge and Knowing
They are intertwined but there is a difference.

Laughter is the best medicine
Some of the bad jokes I used to tell her and how they make me laugh.

My birthday
Sharing my last birthday with Mum

Now or Never
Preparing for death.

Omnipresence
It doesn't matter what you believe in some things just can't be explained or understood.

Palliative care team
They are just like any other humans, some are better at their job than others.

Quibbles
When no means yes and hot means cold.

Respite from Rage
Even the strong need a place to rest.

Soup
A recipe of sorts.  This soup probably stopped her from succumbing to MND much sooner.

Thank-you
I am grateful - but why is caring for loved ones a privilege?

Undertakers
Rituals are for the living. I'm so glad I didn't let the undertakers take her when they first came.

Visitors
A list of do's and don'ts -

Worry Jar
$1 for every worry. She was happy to pay.

X - eXonerated
No-one imagined this rebel child would be the one to care for Mum. I knew all along.

Young again
What happens when you walk in your daughters shoes.

Zenosyne
Time flies faster the further you go.

I hope you enjoyed my theme. Click the link for more Reflections posts by other challengers...

See you for the 2016 #atozchallenge (if not before :) 

***

I use #atozchallenge when sharing my favourite posts.

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Learn more about:

 The A to Z challenge here.

Zenosyne. #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.  

Zenosyne

Zenosyne: A sense that time keeps going faster.

Etymology: From Greek, Zeno is derived from Zeno's Paradox, which asks how a person can walk from one point to another if they must first carry out a series of ever-shrinking steps, + Mnemosyne, the personification of memory in Ancient Greek mythology. How can we live our lives while each passing year feels shorter than the year before? 

 It's a made up word by John Koenig over at Dictionary of obscure sorrows here's the Facebook page. 

I found him when the article "23 Perfect Words For Emotions You Never Realised Anyone Else Felt," appeared in my Facebook newsfeed yesterday.

The best example I have for zenosyne is that the 2015 A to Z challenge seemed to fly by much faster than my first two. 

I can remember them both in a blink of an eye, this year's theme about my Mum will be with me for a while.

Soon my time with her will feel like a fleeting moment.  

At times when everything was an effort she would often say 'It's terrible to get old." I'd always reply 'There's only one thing worse... and that's if you'd never got old at all." 

***

If you have followed along and commented thank you for keeping me motivated. My stats show that many more people have read my blog this month, I hope you enjoyed my words and thank you too. 

***

I use #atozchallenge when sharing my favourite posts.

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Add me to your circles on Google+ 

***

Learn more about:

 The A to Z challenge here.

Young again. #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.  

Young again.

Her flawless skin, laugh and smile made a lot of people think she was younger than years.  

Her attention to detail, strength and loyalty made her seem older.

That's her sitting in the middle. 18 years old showing off the green dress she sewed for herself, in preparation for her migration to Australia.

Even after the Doctors, therapists and everyone else told her to stop wearing them - she wore shoes with high heels.  

I lent her my boots when we visited a farm once. She said she felt like me. Then she hopped and jumped like she was young again.

***

I use #atozchallenge when sharing my favourite posts.

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Learn more about:

 The A to Z challenge here.

X - eXonerated. #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.  

X - eXonerated 

So many of Mum's friends said they would never have guessed that it was me that would take on the role as her carer:

Me the black sheep.

Me who taught her how to swear.

Me who fought back and returned the key.

Me who greyed her hair.

Me who travelled far away.

Still they say I'm hard to understand. 

All the frustration, tears and pain I caused in the beginning 

eXonerated

by the love, support and care they witnessed in the end. 

***

I use #atozchallenge when sharing my favourite posts.

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Add me to your circles on Google+ 

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Learn more about:

 The A to Z challenge here.

Worry Jar. #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.  

Worry Jar

"Please Mum, don't worry"

"I'm your Mother, it's my job to worry."  Of all the misguided lessons she'd learnt this was the most destructive of them all.   

I started a worry jar. One dollar for each worry. Repeated worries cost double. I told her it was the easiest money I'd ever make. So entrenched was her duty to worry, she smiled and said she was willing to pay. 

I tried to show her what an empty jar looked like. 

Worry gave her a purpose. Her creative imagination wasted on wrestling anxiety and strengthening sorrows.

'Why worry?' I'd recite what I remembered of the Irish philosophy stuck on her fridge as we were growing up. '...Either you are healthy or sick... if you're healthy you have nothing to worry about.  If you are sick you will either get better or die....if you die you have nothing to worry about' - or something like that.

Every afternoon around 4:00 o'clock, she'd worry about where the kids were. The neighbourhood's kids had become adults decades ago. I asked her all sorts of questions. 'Whose kids, how many of them, how old are they, where were they before..?' I knew she meant her own babies but still I tried to move a mind that had lost its way in 2012, and lingered at times in long ago. 

In the end I stuck to reassuring her that everyone she worried about was happy and safe.  

"Thank-you. That's all that matters." she'd say.

One morning I wrote her a note. Anything written down was important and trusted. It worked better than the worry jar. I gave her the same note almost every day. It would have been better without the date. 

"2014?" she'd question. 'Already.' I'd say.

***

I use #atozchallenge when sharing my favourite posts.

Like Reflex Reactions on Facebook

Follow @ReflexReactions on Twitter

Add me to your circles on Google+ 

***

Learn more about:

 The A to Z challenge here.

Undertakers. #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.  

Undertakers

I remember asking her Doctor. "What should I do when she dies?"

He said, 'Take your time. She won't need an ambulance. Just ring the undertakers...there will be no need to rush."

She died the death of a saint, they said. She got up to pray, then died in her sleep.

I don't remember who called the funeral home.

Thank you. #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.  

Thank-You

First of all thank you life.

Thanks for all the situations I've found myself in that help me know what to do.

Soup. #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.  

Soup

Your soup will never taste the same as this soup. It's my Mum's Minestrone. The ingredients change every week, but if you follow the basic instructions it will still taste good.

  

First you need a garden with soil that has been receiving an entire family's compost for over 50 years. (alternatively find a supermarket and buy all their sale items) 

Respite from Rage. #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.  

Respite from Rage.

My family have always had some problems with me. 

Quibbles. #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.  

Quibbles

The Doctor told me to treat her like she used to treat me when I was child.

I remember her being gentle but firm.

It was important that she maintain her own independence for as long as possible.

Palliative Care Team. #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.  

Palliative Care Team

Palliative care is a speciality field of mostly non curative, system management. 


Mum had a multidisciplinary team including staff at a Hospital and The MND association. A Neurologist, GP, Nurses, Pharmacists, social workers, occupational therapists, physio's, a dietician, speech pathologist, a volunteer hairdresser and more. None of them knew her.

Omnipresence. #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.  

Omnipresence

They say the departed surround the dying. If that's true then Mum saw and felt their presence often.  

Now or Never. #atozchallenge Care for the carer.

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.  

Now or Never.

It was a bit of rush to organise Mum's Last will and testament. Her memory had become so bad she had bank accounts she didn't remember existed.

My birthday. #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.  

My Birthday, not hers.

Mum and I are both born in January, thirty years apart.  I have often wondered if the closeness in our birthdates contributes to our empathic connection. 

Laughter is the best medicine #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.  

Laughter is the best medicine.

Mum always had a great sense of humour. To pass the time I'd google search non jokes or anti jokes and read through dozens of them to find one's that she understood. Most of these jokes she didn't find very funny, but every so often she would giggle and say 'that's a good one.' So I would repeat it. 

Hugs in Hell. #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.  

Hugs in Hell

I knew she was having a hard day when after the third time we had got up to go to the toilet she refused to get out of her walker again -  I asked her for the twentieth time "What do you want to do... Where do you want to go?"

Genes. #atozchallenge Care for the Carers

Two days after her 73rd birthday my Mum took her final breath. She had Alzheimers and Motor neurone disease (MND). 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.  

Genes

Nobody really knows what causes Motor Neurone Disease or Alzheimers Disease.

Mum had both, and as far as I know no-one in her family has had either disease.

Freedom from Fear #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.  

Freedom from Fear

One of the early signs that Mum had a progressive disease (or two) was the increase in her fear of almost everything.  Fear of the dark, fear of driving at night, fear of falling. She was also fearless.  

Easter without her. #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.  

Easter without her.

November 1st is All Souls day. Last year I attended the international mass held at the cemetery for the departed each year, with both my parents for the first and last time.  

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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