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A child of Italian immigrants, born and bred in Australia. At 24 I purchased my first apartment in the city of Melbourne. Then I sailed around the world, on a record breaking, fast ship. I was the unqualified and only cook. I met my true love, though I didn't know it at the time. He didn't even get a kiss, before I continued my travels. In-between being directionless, I worked and educated myself to become a Nurse, Reflexologist, Reiki Master, Colonic hydrotherapist, and a First Aid and Occupational Health and Safety Trainer. Just as I was finding my feet in a self made career of sorts, he (my love) found me on facebook, 11 years after we had last seen each other. This time he knew how to get what he wanted. I call him The Captain on this blog. In May 2010 I moved to Denmark. I have always followed my heart, even the times it was beating out of tune, magic lies in mistakes too. Amongst other things, this is a love story.

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.

I did my best to let her 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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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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17 April 2015

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 it's true Mum saw and felt their presence often.  

It may just have been the lack of oxygen or the ever increasing doses of morphine, but her faith was very strong. She was never afraid of the baby and people she saw in the room that no-one else could see.  

Fifty years ago Mum baptised a little girl who died when she was only 10 months old. In her final months Mum saw a baby almost every day. Was it baby Carmelina?  She would smile, play and talk to her, reach out and touch her. Then she would ask me where she went whenever she 'left the room.'

One day I sat down beside Mum and she told me I was sitting on 'him.' Her brother  perhaps, or maybe the father of her God child, or her own Papa? She said I knew who he was. Occasionally she would whisper, 'Oh Mum.'  

After my Mum left Italy to live in Australia in 1961, she never saw either of her parents again. The distance too great. She once told me she never dreamt of her parents until after her brother had come to visit. She wondered if it was because she was too far away, that they couldn't find her until her brother led the way. Could it be that she saw her own Mum standing in the living room too? 

On the day before she died an old retired parish priest came to visit her. We had discussed him visiting often. It was not to be known that this was her last day on earth. He said a prayer for her. As she held the hand of one of her living God daughters, the priest read her  Last Rites. It seemed as if it was orchestrated, but it wasn't.  The spiritual significance of this God Daughter being present at her God Mothers Last Rites was not lost on either of them. 

Much of her last couple of years were filled with worries and fears, but I remember the day she accepted that it was weeks not years she had left to live. 'I'm too weak' she said 'I know Mum, and there are plenty of people waiting for you.'  

A calm took over, yet she seemed almost in a hurry to get somewhere else. She moved more. Where she was once content to sit for hours, she tried to get up more often. She chatted to no-one in particular, in words we couldn't understand, but she wasn't talking to us. Maybe it was just the lack of oxygen and the morphine. 

Maybe she was answering the prayers of her dearly departed.


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16 April 2015

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 got so bad she even had bank accounts she didn't remember existed.

On my last trip to Melbourne over a year ago it was obvious that her decline was rapid. Her biggest concerns were securing a plot at the local, almost full, cemetery. It is the closest to home. A spot that was easy for Dad to find was important to her. She knew he would visit her grave everyday.

In her final months I waited for lucid moments to discuss her wishes and we discussed the future often. She preferred to believe she would live a few more years, and there were times she didn't want to think about the possibilities of not seeing her grandchildren grow into adults so we would change the subject.

It would have been easier some days to not talk about a future without her, her wishes for her belongings and how to manage her assets, but it would have been harder not to - once she was gone.

We called in a funeral parlour to discuss funeral arrangements, her wishes were simple and clear. We signed over bank accounts and she managed a legible signature on her Will.  

Some people never like to talk about their own mortality, in the end Mum knew it was important and welcomed the conversations but would make me stop when Dad came into the room. It was scary and caused a bit of distress at times, but it bought us a sense of peace too.

We talked openly about where she would prefer to die, at home or in a hospice. Talking about it was hard. Knowing what she wanted made it easier.

We could have chosen to never speak about it. 

Wishes and priorities change, but how are we to know if and when they change if we never talk about them.  

Life is short and guaranteed to end.  Talking about it takes the guess work out of it. Funerals are exhausting and expensive, it was definitely a bonus to be prepared. 

Now or never is a choice, never is just too complicated. 

Pulling outfits out of her wardrobe and asking "Now Mum which would you prefer to be buried in the green or grey dress?" wasn't easy. Knowing that she didn't care means I now, never have to live in doubt about decisions that had to be made. 



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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. 

On Christmas morning I was helping Mum get ready for the big day ahead. She was tired from Christmas Eve celebrations the night before. I wheeled her into the bathroom and as I started to brush her hair, she asked me "When can I go?"

I wanted to pretend she meant something like, 'When can I leave the bathroom? When can I go to the hairdressers? When can I go back to bed or sit on the lounge? But I knew exactly what she wanted to know and had to think quick.  

"Never" was not the answer she wanted to hear. She needed guidance, she needed permission to be able to let go. Holding on, even for Christmas, was getting too hard.

I kept brushing her hair, and answered quickly. "After your birthday." and the thought lingered for a while.

By New Years Eve it was obvious that Mum's days were numbered, there were no more months left, we were entering the single digit countdown. My birthday is soon after New Years day.



We shared cake.


I tried to get her to show her chocolate covered teeth smile.




We even managed a photo where we're both looking at the camera. 

From the moment I woke up on my Birthday, I wished her a Happy Birth-day too. I had decided it was to be our day. 

It was my gift to her. I sang Happy Birthday to her.  I wanted her to know that I wouldn't be disappointed in her if she couldn't hold on for her birthday - she could use mine. 

Everyone said, 'but it's not her birthday' - I didn't listen and wanted to make sure she could experience the celebration being about her, just in case, just one more time. I told them all that it was most definitely her birthday too.

It may be the day I was born but it was the day she gave birth to me so technically it was more her Birth-Day than mine... and I kissed her a lot and wished her a happy birthday many times.
  
Just before I left for the night to celebrate with some of my closest friends (that spoiled me with a seafood dinner and fine wines,) I gave Mum a kiss goodbye and whispered in her ear.  "Good night Mum, it wasn't really your birthday today, I was just pretending. See you in the morning.' 

No longer as brave as I had been during the day - I really hoped she believed me.

A few days after my birthday I thought we were going to lose her. Maybe 'her birthday' celebration had been enough for her?   

Unconscious most of the day I forced medicine, water and tiny amounts of food into her, one gentle drop at a time and she eventually pulled through another day. Before I put her to bed that night she said - "Thank God for you" - she wasn't ready to let go yet. 

A few weeks later and two days after her own birthday, she did just as she had been guided to do. She went to where she had wanted to go since Christmas day. 

Early in the morning, peacefully in her sleep. 


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15 April 2015

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. 

What's big, white and can't climb a tree?
A refrigerator.

Some nights my saviour and I (disguised as a best friend that gave me a place to retreat whenever I needed it with lots of love, support and an endless supply of tea) would read these jokes out and scream with laughter. Mindless/ literal/ dumb jokes that lack meaning and hardly anyone else finds funny. They filled the empty spaces without much effort and gave us a reason to giggle, smirk or belly laugh when our minds needed a break, but just couldn't rest.  

Some of them are provocative and require setting your ego aside or laughing at yourself to find funny. Others are just so literal and simple, I can't help but complement the genius of the mind that makes them up - even the first one which I can completely understand if you don't find funny.



What's green and has wheels?
Grass, I lied about the wheels.

What's brown and sticky?
A stick.

What's worse than finding a worm in your apple?
The Holocaust.

What do you call a man with a spade in his head?
An ambulance.

Why does Michael J Fox make the best smoothies? 

Because he uses quality ingredients.

Ask me if I'm an Orange.  

"Are you an orange?"
No

What did the farmer say when he lost his tractor?  

"Where's my Tractor?"


What's red and smells like blue paint? 
Red paint

I still remember what my granddad said just before he kicked the bucket.  

"I wonder how far I can kick this bucket."

What's blue and fluffy?
Blue fluff.

What's red and bad for your teeth?
A brick.

What do you get when you cross a joke with a rhetorical question?




I've never seen the last one make anyone laugh, but I still find it funny. Did any of them make you giggle a little or laugh a lot?



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13 April 2015

Knowledge and knowing #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.  


When I did my first clinical placement in a nursing home I knew from the start that I never wanted Mum to spend time in one. I also made a habit of treating patients as if they were my parents.

Knowing my parents' and their routines made my job of establishing a good working routine easier at times and impossible at others. Mum would have been better off for example with several small servings of food throughout the day, but I couldn't shake their lifetime routine of '3 square meals a day.' 


Knowledge from working in surgical wards, doctors clinics, dementia wards and palliative care made everyday tasks easier, especially as she was such a dignified lady. The palliative care team were constantly telling her to do what I told her to do, because 'she knows what to do.'  


There's also that type of knowing that makes no sense at all.  I knew Mum would die at home and I knew she wouldn't die when I was home with her. It was what she wanted. I don't know how I knew it - I just knew it.  

The day after her birthday we spent the morning together but that night I went to stay at a friends house for a well needed rest. I wasn't getting more than 2-3 straight hours of sleep and often less than 5 hours a day. 


I knew she was close to death, and began getting  in the habit of treating every conversation we had as if it would be our last. We told each other we loved each other, and she said everything will be ok... 

My last thought before falling asleep was 'I wonder if she'll be strong enough to last another week until my next 'night off' - I was so sure she would wait till I was out of the house. At the time it didn't occur to me that 'tonight was the night.'  At 3am I received a text message saying she was doing fine. At 5.30am a phone call saying 'it's time to come home, she's gone, it's happened, we've lost her' - or something like that.  I took my time, no need to rush. 


On the morning of her funeral I walked into one of her favourite stores as I was waiting for my hairdressers appointment. Over the speakers a significant song started playing and stopped me in my tracks. The song is about a woman named Ita Buttrose, (sounds so much like Ida I've always replaced Ita with Ida) 


' I believe, I believe what Ida tells me to.'  From that moment I knew Mum was close by and still had her sense of humour.  


Cold Chisel - Ita.




One thing I didn't know was that the last leg of my flight from Melbourne to Denmark would be upgraded to business class... but somehow I know why.  


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11 April 2015

Joy - an Ode to - #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.  



JOY






My Mother's name is Letizia - which means Joy in Italian.

Laura Sullivans's Ode to Joy, from the Album Feasts of love and joy, was playing gently in the background as Mum's coffin was carried out of Sacred Heart Church. It is the most beautiful version I have ever heard.  

In joy - Enjoy



I have disable flash on my computer so the embedded video is in html5 - this is new to me not sure how it will play in other browsers or operating systems. Here's a link just in case the above doesn't work for you.  Feasts of love and joy - Ode to Joy by Laura Sullivan.



***
My long slow goodbye is finally coming to an end. It started about 10 years ago. I don't know where in the world I was back then, but I do remember talking to Joy on the phone. 

She'd had a scare the night before. The laundry light was on. She went and stood in the doorway. For a moment she forgot where the light switch was. Her hub of cleanliness and organisation for almost 50 years was unfamiliar to her. She had no idea how light worked, or that she should even begin looking for a switch. A glimpse of worse to come.

From this point on she started packing up and cleaning out her things, and fought to hold on to the important stuff.

I'm surrounded by Joy. More to come in 48 hours or so, when I make it back to The Captain. It's been 6 months since I arrived here. 

I'm officially in transit from Melbourne to Denmark from Sunday 12th of April and back on the 13th - or 12th... again. I'm hoping the the flight and resulting jet lag will give me plenty of time to keep up with challenge and catch up with comments. Thanks for the support so far.

Tears of Joy escape me as I prepare for a final flight. 

My Mother-less-land. 

Through sadness and pain. I live and travel with Joy.


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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.





There are a few different types of MND (otherwise known as ALS - Amyotrophic lateral sclerosis - or Lou Gherig's disease.)

We never found out which one Mum had.  Of course I used Dr Google but even that was inconclusive... Her onset and progression of symptoms overlapped, there was 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.

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, lots of rest and some breathing exercises that didn't really help much.

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 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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9 April 2015

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?"

Her answer of late was "I don't know." This time she answered, 'I want to go  to Hell'


For a devout catholic this was a big call.  Life on earth had got so hard that Hell seemed a better option.  


I stopped asking her where she wanted to go and gave her a big hug. With only a few weeks left to live, her muscles getting weaker by the minute, it was time to relieve her of more burdens. 


Her brain was foggy from lack of oxygen and Alzheimers rendered her more than just forgetful. If I didn't open the door and show her the toilet she barely understood what the word toilet meant or recognise where she was. I started making all of her decisions for her.  


'Give me hug mum. On the count of three we're standing up - 1, 2, 3 up.'


'Give me a hug mum. We're going to sit at the table and have some dinner.'


Good morning Mum. We are getting up to to have some breakfast now.  Give me a hug 1, 2, 3 up we go. Yes it's morning, the sun is shining through the kitchen window.'


'I know you're not thirsty but here's a little sip of water just to freshen your mouth.'


Your feet are icy cold - I'll put your socks on now'


It was summer time in Australia. 

Breathing with a dwindling lung capacity is harder in the heat. I did my best to keep the house cool all the time. Fans as well as the air conditioning on, helped her feel like she could breath better. I prayed every day for a cold summer. 


'Better a little to cold than too hot.' she would say.


I never wanted her to feel like her favourite place resembled Hell. The polar opposite was perfect.




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8 April 2015

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.

There are tests that can determine whether or not I have the gene mutation that is evident in some MND patients. I'm not interested in finding out. I won't be passing on any genes. There is no treatment for either, except living your best life till it takes over. Neither disease is reversible.  

Most MND patients live 3-5 years after initial diagnosis, Mum only lived 7 months after her diagnosis. In hindsight her symptoms started presenting themselves several years ago. Her GP said she was getting old.

I'll know what to get tested for if any of the symptoms present themselves

Would you want to know if you were susceptible to a disease that there was no cure or treatment for?


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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.  

One night she forgot I was outside taking clothes off the line. When she heard the back door open, she didn't try to wake Dad but got up to face the burglar. 

Her legs were weak and she would forget she couldn't get up or walk safely on her own. I heard movement in the lounge, dropped the washing on the floor and almost ran into her in the kitchen. I never expected her to have got so far, we both got a fright.  

Instantly both relieved, me to see she was safe and her to see a friendly face. From that night I began to announce - 'Hi Mum it's just me, Ida' as I came in the back door - or any other door within her earshot. I told her to pretend she was sleeping if she heard a 'burglar' again. Better they rob the house than she falls over in her pursuit of them. 

It's easy to get frustrated when dealing with weak, elderly, frail, forgetful and fearful people, particularly when it's your parents, we tend to expect more from them. 
'You know how to do this or that.  You're doing it just annoy me. Why don't you trust me I'm your daughter, I would never hurt you. Why won't you just listen?'  

Stop. If they could please us they would. Dementia takes away the ability to understand simple cues or commands. 

They forget they can't do things the way they used to. Logic makes no sense. Just because you tell them to call you if they need help doesn't mean they'll remember to. Their own homes become unfamiliar territory. 

Unlike children they are not getting smarter everyday.

Everything takes more time, they need constant reassurance that everyone is ok and they are safe... Mum would rather suffer in silence than ask for anything from anyone (except maybe her husband.) 

She was also good at faking she knew what was happening right up until the moment she had to perform the task. 

It is important to always remember that  it's the disease not the person making life difficult for everyone.  

Carers need to be forgiving of the people they are caring for as well as themselves.  

If you are an able minded and able bodied person please be a little forgiving of carers too.  

If a carer lashes out at you they have likely had a few frustrations throughout the day/night that need an outlet. 

If you don't have a sympathetic ear you might just end up with an earful. 



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6 April 2015

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.  

That day I learnt that Mum knew the words to 'Here I am Lord' by heart in English as well as Italian. Her soft soprano voice touched a chord.  

I didn't want either of my parents to see my tears so I turned my head towards the woman beside me as I fumbled through Mum's purse for a tissue. She starting chatting to me about the windy weather. Through silent tears I thanked her and reminded myself to carry a hanky from now on. 

The church where we held Mum's funeral was the same church she was married in over 51 years ago. The organist knew Mum well and volunteered to play at her funeral. I left the song choices up to her and she also offered to arrange two or three of the choir members to sing along with her. 

More than a dozen choir members showed up. At least twice as many than are normally present for a regular Sunday mass. The priest commented during the mass that he's never seen or heard anything like it at a funeral before.

On our first Easter Sunday without Mum, the church was packed to the rafters... even the mezzanine was full (cliches are allowed when they're true - right? :)

The choir was larger than normal and during the communion they sang 'mum's song' in Italian, 'Sono qui signore,' just like they did for her funeral. 

As soon as the organist played the first note I realised I forgot to pack one of Mum's hankies. I was wearing one of her scarves, so I used that instead. She never did manage to mould me into a 'proper' lady. 

After the mass, Dad and I visited the cemetery and then spent the rest of the day celebrating Easter with two of Mum's God Daughters and their extended families.

The two separate families don't know each other, but each have huge holiday houses in the same seaside town. Lunch at the sister of one God Daughter, dinner with a sister of the other.

Our families united across generations because of the love shared between our Mothers from friendships forged and cemented over 50 years ago. 

On the long drive home we agreed our first Easter without her was a good one. For me, it was almost perfect. I know Mum would be glad she didn't have to climb all the stairs we encountered. 

I wonder if Dad, whose 80 this year, will even remember it tomorrow. I'm happy to keep reminding him for a long time.


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Learn more about:

 The A to Z challenge here.