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affected

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Apr 26, 2013
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16,096
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Lost a loved one
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05/2013
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OZ
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AU
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lala land
One of our home care staff sent this to me just recently. Chris gained his wings 4 weeks before she managed to write this.

It has reminded me that even though, at the time, we are just bumbling along through what seems a nightmare, we can turn anything into a positive influence for others.

This has been pasted without alteration or deletions and I was given permission to use it however I felt to:

- - - - - - - - -

To Chris and Katrina, family and friends – some words of thanks.

Last November when my supervisor asked me to go to a client at Tuckurimba they said “His name is Chris, and he’s just 10 minutes away from you. Chris has MND - sorry, it will be a sad journey.”
Sad as the circumstances of meeting Chris and Katrina were it turned out to be a journey that I will always be grateful for.
I walked into a house and met people who immediately became my friends.

Less than six months later I attended Chris’s memorial service and listened to his family and friends talk about their love for Chris, and reflect on their time with him – what a beautiful service it was.
I thought that I would share some memories from the few months that I knew Chris.

So many people spoke about Chris’s capacity for laughter, and I recalled the many laughs that happened while I worked with him. A lot of the time Chris would laugh purely because he was already laughing, then that would lead to more laughter. Chris would yawn then laugh, he would sip coffee then laugh, drop ash on himself then laugh – he would smile with pureed berries all over his teeth then roar with laughter, and his laughter was infectious. One time I ended up completely helpless with laughter. I was massaging Chris’s hands while watching the training video that Katrina had made for us. At one point in the video Katrina says to look at Chris’s face to make sure that he’s ok - I looked at him, and let’s just say that Chris had prepared his face well. The most spectacular grimace I’ve ever seen!
I also remembered making chicken and leek soup with Chris - I was adding the salt and looking to Chris to say when to stop. There I was – grinding, grinding, grinding, with Chris sitting in a wheelchair saying “More, More, More!” I was about to suggest that he modify his salt intake when his smirk gave it away. I said “I haven’t taken the lid off the grinder, have I?” I won’t ever forget his massive grin, or Sylvia’s laughter.

While we were gathered around the gazebo at Chris’s service I listened to people tell of Chris’s love of cooking and I looked at the rosemary growing there. We had made a lamb stew one day and I asked Chris where the rosemary was. I wonder how many people, if their ability to speak was taken from them, would be brave enough to even attempt the word “gazebo.”
Another time that Chris and I cooked together was just before Christmas. It was one of those stinking hot 40 degree days and Chris had pork roasting, potatoes, pasta and eggs bubbling away, apples stewing – the kitchen got hotter and hotter. I looked at Chris to see how he was managing - - what he typed on his iPad was “You should have a rest now.”
In the time that I knew Chris he never once stopped showing concern for other people. Every time I asked him how he was doing he would answer then, without fail, ask “And you?”
Whenever I assisted Chris to stand and transfer from one chair to another I could feel the enormous effort that it was for him. He never said that it was too hard though, or that he couldn’t do it. Chris kept the attitude that if he could still do something, he would do it. What a brave and proud guy.
So often in life we meet people who love their parents despite the bad things. Looking at Chris’s kids it’s so clear that they not only love Chris, they adore and respect him, and they are so very proud of him. That’s something you don’t see everyday.
I listened to people talk about Chris not being far away, and reassuring his children that he is still with them and I recalled a conversation that we had about distance. Chris and I often talked about having lived 10 minutes apart as kids, then living 10 minutes apart when we met as adults 50 years later – only a few kilometres. One day Chris started wondering how much distance there could be to still only be 10 minutes away. With some googling on my phone we found that with a spare 10 minutes (and a space shuttle) it’d be possible to burst through the stratosphere and be out amongst the stars – and that was even allowing for time to buckle up and count back from 10!
Chris and I often talked about growing up in Frankston/Seaford and we’d laugh about how rough it was. We’d remember things like when a Pancake Parlour opened in Frankston and the big artificial log fire was the flashest thing any of us had ever seen. We’d remember the local thugs called ‘Sharpies’ (imagine a skinhead with a mullet.) We’d remember being completely unreined as kids and running wild in the sand dunes behind the Pines estate, and we’d share stories of how rough our schools were. Chris once asked what my brothers were like and I told him “horrible.” Even as little kids they were shockers – their idea of family entertainment was to get me fired up by way of pinning my teddy bear down and punching him in the face. The look of horror on Chris’s face when I said that was priceless. He sat there stunned then said “Bastards.” I suggested that maybe I used to overreact a bit too but Chris said “It’s the principle of it.” My thoughts at the time exactly, being echoed back to me 50 years later.
MND made it so difficult for Chris to say any words, let alone words like “Bastards” and “Principle.”
Back as a kid I used to daydream (a lot) and imagine a person who would understand that you just shouldn’t punch teddy bears. Even in my wildest daydreams though I didn’t imagine that I would meet just such a person 50 years on. If I could go back and speak to my 5 year old self I would tell them about meeting Chris, and my imaginary ally in the prevention of cruelty to teddies would have a name!
When I told Katrina about Chris’s reaction to my teddy story, she told me that Chris still had his own childhood teddy bear, sitting just inside the house.

I knew Chris for less that 6 short months but gained memories and knowledge that will last forever. I now have no doubt whatsoever that dignity can be maintained throughout the most devastating of illnesses, and MND is a completely devastating disease. Every care worker who attended Chris now knows that it is possible to maintain dignity through such an illness – we know this because we learnt it from Chris.

Alison Wilson
Care worker.

- - - - - - - - -

Tillie xxx
 
what a tribute! thanks, Katrina ... tell the story behind Tillie :)
 
:(:)Thanks for sharing Tillie, read it earlier but had to come back to respond. Was very touched.
 
Oh Tillie, how absolutely beautiful. Chris was loved very much! Thanks for sharing such a heartwarming story.

Debbie
 
Max I started a new thread giving the story of Tillie, and it went to moderation ....


thanks for the replies here so far.

I will also say, I am going to dinner at Alison's home on Monday night. I am taking her a copy of our wedding dvd to give to her, but she also wanted to sit and watch it with me (man am I going to be a blubbering mess!).

I've put Chris old childhood teddy bear with the video ready to take. I know his 3 children won't really want it, so I'm going to give her his teddy that was never beaten up (though it does look like it was well dragged around for some years lol)

I love feeling like we were a pond, and ALS may have been a stone thrown into it, but the ripples are still spreading and the ripples are blessings, even if the stone was not.
 
Katrina! Thanks so much for sharing! Absolutely moving! Chris was outstanding and I would have loved to meet you both and shared laughter! A gift!
 
Only about the second time Alison ever came here, she drove in to find me sitting under the gazebo with glazed eyes.

I told her that Chris had fallen the night before - split his head open, broke ribs, damaged shoulder and hip. I'd been at the hospital with him til around 3am, and had come home, got a bit of sleep and was ready to head back to the hospital.

I still hadn't faced cleaning up the floor where he fell.

I will never forget the noise of him falling, then seeing him on his side with this huge pool of blood slowly growing outwards in all directions and thinking - sh it this looks just like it does when a dead body is found in the movies!

I had grabbed a pillow and didn't even try to look at the under side of his head, just lifted it enough to get a pillow under, both for a bit more comfort and to try to start to stem the blood flow. After organising the ambulance to come, the operator starts to help take you through some basic first aid. I told her I'd put the pillow there and she suggested I add a towel folded up small to help add more pressure to the wound.

Alison headed me back to the house, took one look at the floor, the furniture everywhere that I'd moved to allow the ambo's clear access to him and with the trolley they would need to bring in, and the blood everywhere and pillow and towel in the middle of it all.

She so kindly but firmly said to me - are you ok to drive? yes ... then you just go to Chris, I will clean this up.

I cried. At the kindness that someone would just do that, because for me it wasn't cleaning up 'blood' that worried me, I've been a mother, farmer, nurse and veterinary nurse. It was the incredible emotion of what had happened to him, and what this new injury would mean for him (and for me as carer), that just made cleaning it up feel overwhelming.

So off I went, collected Chris, brought him home, and it looked like nothing had ever happened. Of course he looked shocking ...

Home care workers here do 'light housework' for you. That doesn't usually involve cleaning up what looked like a crime scene.

She immediately had my highest regard, and she was an amazing carer herself.

The day before Chris passed I let her know she might want to come and say goodbye (Easter Monday). After she spent some time with Chris, she asked if I would like a cup of tea, made me tea and while I drank a cup of tea, she took a brush and brushed my hair all out (I've got rather long hair), then she did it in this beautiful fishtail braid. I nearly cried the whole time, just because I had known Chris was dying for 3 days and had been alone with him, and suddenly this beautiful lady was just so kind. She was on her own time, I had been giving her the chance to say goodbye, but she was thinking of me too.

Chris passed at 3am. I phoned her at 6am as I knew she would be up. At 4pm she phoned me and said - would you like a rum?

She brought rum for us both, then sat me down and brushed my hair out again and braided it freshly.

Chris said not long after she started working with us - I willed her into my life ...

I'm keeping this lady in my life :)
 
I enjoyed reading all this Tillie.
 
I'm so glad that you were sent this wonderful lady. It's hard not to get attached to someone who cares about your loved one. They become part of your family in a way. You and she will always share a bond - loving your Chris. Sometimes people come Into our lives for a reason. I'm so grateful she was there for you!

Debbie
 
Thanks, Katrina!
 
Thank you so much. This renews hope at a time I'm losing mine.
 
Tillie what a wonderful tribute to you both! Thank you for sharing!
Hugs
Linda
 
>Thank you so much. This renews hope at a time I'm losing mine.

Okay Tracy is time to cheer up :)

Find something to post in the "I love" thread ... It took me 10 tries to finally get this damn thing to type thread :-(
 
That is so touching, Tillie. Enjoy your dinner with Alison.
I keep telling myself there ought be a silver lining somewhere around this dark cloud that is hanging over my family.
 
Tillie you are such a special lady. I feel so lucky to have met you!
 
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