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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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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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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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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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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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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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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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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Monday, 20 April 2015

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.



Towards the end she ran her house with her nose and ears. I could leave food cooking unattended in the kitchen. 'Is the stove still on.' she would ask, and I knew it was ready.

I never forgot the laundry in the washing machine because she heard when it was finished. She also made me get up and check the drain was clear every time she heard the washing machine empty after each cycle.

When standing alone was impossible she would still insist that she had to do the dishes. I would fool her into thinking they were already done, or that we'd do them after a rest in the lounge.

Turning off the taps so I could hear her,  I would yell out "If you stop calling me and asking me if I need your help I would have finished the dishes by now."

I downloaded a Catholic radio station and gave her the iPad with earphones to use whenever I needed to make some noise. It worked a charm, though she wondered why the masses were never in Latin anymore.

The last time I let her help clean up after dinner she nearly fell. She did fall, but I caught her 'dancing with the stars' style. I twirled her on to the floor and after a bit of "are you alright and a giggle,'' she automatically started crawling towards the chairs to pull herself up.

It's how she managed whenever she fell alone. 1, 2, 3  I helped her up - and promised that she would never fall again, while I was with her...

The quibbles over using her walking frame and wheelchair began.

Gentle but firm.

Don't eat the cup. You're supposed to drink from it.

Open your mouth.

No, you haven't already taken your medicine... that was yesterday.

We never found out what type of MND she had, or whether or not the Alzheimers was a separate disease or linked to it. I did a lot of research to help me find the best ways to care for her. When I learned about Lewy Body Dementia life became a little easier.

You see it's hard to know what a demented brain comprehends. She didn't know hot from cold, or whether stand up meant sit down, or hold on meant let go... We stopped quibbling when I realised she wasn't doing any of it out of spite or fear, or just to upset me.

When she wouldn't take a step back, I started telling her to take a step forward, and somehow we managed to get to where we were going without too much more quibbling.


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Saturday, 18 April 2015

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.


The carer has to manage them all. They all want to know the answers to similar questions. There are different ideas about what works best. Mum didn't want the house full of strangers. She could've had a masseuse every week. She wasn't interested so I refused a lot visitors.

I rang her GP and pharmacist most often. I took notes and arranged for the rest to phone me. Except for the hairdresser, I called her every month.  

I was told that Medical teams seek guidance from patients and families. I went on a Facebook rant one day. What about the families that don't have trained nurses or health professionals in them? How do they know the right questions to ask? How do they know what to do, how to do it, what's important and what's not? 

The Social Worker said sometimes those families find it easier. They do the best they can with what they've got. I guess some people are natural carers.  

We had three appointments about Mum's 'End of life care plan.' 

There was some confusion. It's really just a 'Not For Resuscitation' letter to give to the ambulance or mortician at the end of her life. It never arrived in the mail. The Palliative Care Nurse team confirmed her condition when the ambulance arrived.  

There was some good tips. Use a wide brimmed cup to reduce the risk of aspiration, so the patient doesn't have to tilt their head back to drink. 

And some mishaps. I had to wait a week for a return phone call. A week is such a long time -- that goes by so fast when you're dying.  It was to arrange her final 'End of life care plan' appointment. Lucky it wasn't important. 

We didn't call on the team often but it was a great support knowing they were available. Except some of them on Friday afternoons or public holidays, and during the Summer holidays. Death is rarely convenient. 

Mum's positive attitude, the way she welcomed and entertained strangers in her house and saw them out to the gate, left an impression on a quite a few of the team.   

They all played a role in her end of life story. My favourites were the pharmacist for her hugs, and the volunteer hairdresser. She always made the biggest difference. 



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