Wednesday, 6 May 2015

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 :) 




***


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 The A to Z challenge here.

Wednesday, 29 April 2015

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. 

***


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Learn more about:

 The A to Z challenge here.

Tuesday, 28 April 2015

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 always made people think she was younger than she was.  

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. She looked younger at 40 than she did at 20. 

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.



***

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 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. 



***

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 The A to Z challenge here.

Monday, 27 April 2015

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.






***

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 The A to Z challenge here.

Sunday, 26 April 2015

Visitors. #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.  

Visitors



Mum always welcomed visitors with some liquid stimulant or courage -espresso coffee or strong liquor in delicate glasses. Children could eat as many sweets and biscuits as they dared. No belly left her house, less than full. 



For a woman that didn't get out of the house much, she had a lot of visitors. 

Her generation thinks nought of visiting and ringing first. The neighbourhood was changing but she lived on the same corner for almost 50 years. The visitors visited morning, after lunch and after dinner. Friends and family, most often around meal times.

Routine means everything and routines change with each stage of life. There were some visitors that visited too often or for too long. Some visitors needed reminding to visit once again.

Try not to hurt their feelings, but there aren't many nice ways to say 'stop visiting', or 'you should visit before it's too late." Some take it better than others. 

Mum would never have imagined refusing a guest, but at times she said 'good' when I said they weren't coming because I told them she needed to rest.  

Sometimes it was best when she didn't know visitors were on their way. 'Do we need to go shopping and is the house clean enough?' I'd tidy the mess and show her she had everything well prepared. 

The cupboards were overstocked with sweet and savoury treats. Only a few out of date... but 'still good enough to eat.'

She enjoyed being a host, which is why I bargained and bribed her with ringing visitors to cancel their plans. Especially on the days I had exhausted all methods to get her to eat a few more mouthfuls on her diminishing plate. 


As irony would have it she often ate best with a house full of guests.

I hindsight perhaps I could have pinned a note on the door:

 - Please keep visits short.

 - Please watch out for hints from the carer that it is time to leave.  Excessive yawning or words along the lines of "it's getting late, it's almost lunch/dinner time, she's very tired, it was really nice of you to visit" are obvious signs.

 - It's not necessary to always bring a gift.

 - Don't talk about how much stronger, healthier and older you -- or your parents -- are, when a person dying of a disease they have no understanding of or control over, is sitting in front of you.

 - Please ask yourself who is going to look after this gorgeous plant...? Don't bring expensive plants that need a lot of attention to dying people who can no longer venture into their own neglected garden. It will disturb a gardening enthusiast to see it withering away, which will make the carer move it out of sight, because she won't have time to look after it either and it will inevitably die, too....And please, please don't ever ask what happened to that plant.  

***


I doubt anybody plans to do the wrong thing. So do what you want, just do it with a whole lot of love and stacks of sensitivity.  

***

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 The A to Z challenge here.




Saturday, 25 April 2015

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







A time to say goodbye.

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.

It was a little before 6am when I phoned the Chief Mama of our neighbourhood. 96 years old, I met her at the top of the street. She prayed. I told her what to expect, she settled my nerves. Chief Mama has 4 sons of her own. My Mum was the pseudo daughter she never had. 

The circle of 11 women arrived one by one and gathered in Mum's bedroom. Chief, Elders, the first generation and her grand daughter. Twelve all together if you count Mum laid to rest in her bed.

We hugged, talked, giggled sometimes, prepared ourselves and prayed. I sprayed her favourite perfume in the room, on her, on the next generation, and the child. The Elders (all older than Mum) and the Chief supplied their own scents. 
We sat in silence

Words of encouragement as I removed her jewellery, except her wedding ring as requested. None of us knew what we 'should' do. We follow each other's lead. Ancient rituals in a land where she is to be the first ancestor.


The undertakers showed up at 9.30am. I didn't listen to people who said it was time for her to go and sent them away. At 11, I delayed them again. 


She created her own life in the Lucky Country. Her and husband's family had remained in their Motherlands. There were no relatives here, no photos displayed, but their presence was felt. When asked if we were waiting for more family members, I told them the ones that lived far away were still gathering.


We reminisced about the contrast of her strength and tenderness as we gathered the things she would need for her final journey. An unrehearsed ceremony.  

By 1pm final memories were created and cemented in history. It was time to take her body away. 

A blessed procession, from the house to the street. A time to say goodbye. One last time, she was leading the way. 



***


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 The A to Z challenge here.


Wednesday, 22 April 2015

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.


Thank you for providing me with an opportunity to be present where I'm needed most.

Thanks for taking me away from it all and getting me back there again.

Thank-you for my inner circle. Far, near and closest.

Thanks for giving me a release for fear, pain and frustration.

The relentless challenges strengthen me, ta.

Thanks for signs of encouragement, moments of joy too.


Thank-you for access to high class services' general equipment.

Thanks for making me feel privileged to care.

Thanks for making it a dignified choice, not a hopeless necessity.

Thank-you life for leading me here.



***

I did feel very privileged to be able to care for my Mother. So many people have so little or no access to basic medical facilities or services. With so many refugees in the world a lot of people don't even know where their entire families are. Then there are the modern well off families that live to far away, don't have room in their houses, can't afford to give up their jobs...

Hopefully one day, communities will have family centres. Student accommodation, child care centres and elder facilities all in the one location.  

If world class means first class, why doesn't the whole world have access to the necessities that made me feel so privileged? 



***


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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) 


From that garden, depending on the season, you'll need to harvest some or all of the following:

Broccoli (leaves, stems and delicate florets,) 
Silver beet, 
Zucchini (flowers, stems and fruit,)
Pumpkin (also include the stems and flowers)
Other leafy greens, some look like lettuce, some taste very bitter on their own. 
Celery, stalks and leaves
Parsley
Basil,
Garlic leaves,
Eggplant (aubergine)
Some fresh tomatoes... or a spoonful of pasta sauce, or tinned tomatoes if you must but it's not necessary.
Fresh green beans, broad beans or yellow ones 
Peas
Corn
Peppers 
Cauliflower
and the occasional bounty of goods given to you by neighbours who have equally productive gardens.

Fresh beans - use them all there will be more next 
week, but soon there will be none left until next season.


Other ingredients which must always be in steady supply (or overstocked) are olive oil, salt, pastini (small pasta) or rice will do, onions, potatoes and carrots and plenty of parmesan cheese.

If they are not overstocked you may be tempted to only use a small portion, or one of each, they are best used with abundance. 

This soup tastes best if you have too much of everything.

The single most important piece of equipment you will need is a very large pot.

A paring knife and a 50 year old bent chopping board makes the soup more authentic, but your own favourite utensils will do.

While someone is out picking all the ready and over ripe veggies from the garden, start peeling and dicing the onions, carrots and potatoes.

When the buckets of garden goodies arrives, give them a thorough clean.  (NB. a bit of cracked pepper helps to disguise any bits of left over dirt you may have missed, but please try and be thorough) 

Add a generous amount of oil to the pot.  At least a 1/4 of a cup - and then some more, a bit more... oops, too much never mind - it gives good flavour.

Turn the stove up high.

Add the onion, and all other hard veggies and beans.

Pack in all the other nicely chopped stuff, stalks and all, as you go. Remember leafy greens reduce in size to practically nothing so keep packing them in.  

pumpkin stalks in the soup.


Add a dollop or two of home made pasta sauce, tomato paste or tinned tomatoes, if you don't have fresh tomatoes

Add a couple of teaspoons of salt and cover the whole thing with water, right up to the top.

Bring the soup to a boil then reduce to a simmer with the lid on. After an hour or so the oil on top will be dark and rich looking, but this soup does not get ruined if you happen to forget it for a few hours.

It's time to add the pasta - about 200 grams if your pot is really big. You can of course still use 200 grams if the pot is smaller as long as there is enough room.  

Now this is where I have changed the recipe a bit.  Mum and Dad both like to keep the pot simmering for  10 -15 minutes after adding the pasta. I turn the stove off, add the pasta and wait about half an hour before serving, check to see if more salt is required. The soup will take several hours to cool in the pot.

The secret is in the serving.

Dad always cuts up slices of cheese for the bottom of the bowl. Those extra calories are fine for an elderly man and a dying woman, but aren't essential for the rest of us.

Parmesan cheese is however a delicious addition to the top.  Some home made preserved chillies taste good too. 

If you come from an older generation and have a vintage fridge, that freezes everything on the middle left shelf, then this soup will keep for a very long time. Otherwise I would suggest freezing it in smaller portions.

If you prefer soup with a more meaty flavour, adding some chicken, lamb or beef browned in the pot before adding the onions are family favourites. Mum loved the last lamb one I cooked the best, but it really is good enough without any extra protein.

So this post really could have been done as M for Mum's Minestrone,  but for today I'm calling it soup. 

Soup for satisfying weary souls whist in a state of semi conscious sorrow... that tastes yum, and even a tiny serving can fill a deep hole.


Soup garden.


***


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 The A to Z challenge here.

Tuesday, 21 April 2015

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.










Like many carers I was sensitive to the needs of my mother because I am sensitive.   

My heart rules my head. I am also not always easy to get along with. My head is a radar for out of control ego's. My face can't hide what I'm feeling. When I'm under attack my fangs always hit their mark. I have spent most of my life learning how to be social and nice to people, but I haven't mastered it with people that aren't nice to me...I'm really bad at it. When my rage is unleashed, I can easily be the nastiest. 


I am lucky to have a few close friends. One of them lived very close by to my parents and reserved a constant space for me, in her heart and her home. Her worries and responsibilities were far greater than mine, but still she offered me a place to rest.  

Respite from the relentless routine...of death and dying.

Replenish, Rejuvenate. Time to repair the rage.

Ride horsey together...

Here's a 'Miranda sings,' video my niece introduced me too about how to get a girl friend.

I really wouldn't have managed without my girlfriends constant support, late night phone calls, the occasional night out, and that 'ABBA' concert in the park. Singing old 70's songs outside with a bunch of strangers cures just about any affliction, even rage.  




***

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