Saturday, 5 July 2014

front of service sheet

this photo of dad was taken around 2007 in Timaru, New Zealand. and that is dad with his Granny on the back ( wasn't he just so cute)

inside the service sheet

THE PINES, HOUGHTON BAY
FRIDAY, 4 JULY 2014
AT 1.00 PM
OFFICIATING

Brian Ross jp
COMMENCING SONG

My Ain Folk – Alex Sutherland Singers
WELCOME AND OPENING WORDS

REMEMBERING LES AND FAMILY MEMORIES
OPEN TRIBUTES

The family invite you to share your personal memories of Les
 
VERSE

When I’m Gone
Read by Heather McKay

When I come to the end of my journey and I travel my last weary mile.
Just forget if you can any frowns and remember only my smile.
Forget any dark words I have spoken, but remember the good I have done.
Forget that there ever was heartache, just remember the laughter and fun.
Forget that I stumbled and blundered and sometimes fell by the way.
Remember I have fought some hard battles and won some, by the close of the day.
So do not grieve for my going, don’t be sad for a day
But in summer just gather some flowers and come to the place where I lay
And then in the shade of evening, when the sun paints the sky in the west.
Stand for a moment beside me and remember only my best.
 
TIME OF REFLECTION AND MUSIC

Amazing Grace – The Regimental Band Pipes & Drums of the
Royal Scots Dragoon Guards
 
THANKSGIVING AND THE LORD’S PRAYER

Our Father, who art in Heaven, hallowed be thy name;
Thy Kingdom come; Thy will be done; on earth as it is in heaven.
Give us this day our daily bread and forgive us our trespasses,
As we forgive them that trespass against us
And lead us not into temptation; but deliver us from evil.
For Thine is the Kingdom, The power and the glory, for ever and ever. Amen.
 
VERSE
 
On a Friend
An honest man here lies at rest,
As with God his image blessed.
The friend of man, the friend of truth,
The friend of age and guide of youth.
Few hearts like his with virtue warm’d
Few heads with knowledge so informed
If there’s another world he lives in bliss
If there is none, he made the best of this.
Robbie Burns
 
CLOSING WORDS

RECESSIONAL MUSIC

Auld Lang Syne – John McDermott
Should auld acquaintance be forgot,
And never brought to mind?
Should auld acquaintance be forgot,
And days o’ auld lang syne!
For auld lang syne, my dear,
For auld lang syne.
We’ll tak a cup o’ kindness yet,
For auld lang syne.

Friday, 4 July 2014

the funeral


we held the funeral on Friday at 1pm at "The Pines" which is lovely place with views out into the cook straight and on a clear day like it was on Friday you can see the south island it was so bright so some of the photos are a bit over processed to make this as viewable as possible
this is the view looking out over houghton bay and across to the south island including the snow capped Kaikoura Ranges it was a cold but stunningly clear day


  Mum want to make sure people knew Dad still loved Scotland, so since Dad wouldn't let us find his two flags, we printed out this sticker for  him instead,  the flowers on top are the ones from his family in Scotland ( front ones) and a wreath from mums work, and in the background is the picture mum got done for dad's 60 of him and a elephant fish he caught off oriental bay see below aswell

Dad was carried out to Auld Lang Syne, on the left front to back are Aaron Muir a work mate of dad's, Bob Wilson, friend of mum and dad's and Dave Powells who worked at Fletchers as well and is the husband of one of Heathers workmates on the right front to back  are Colin, Heather's partner, Dean, Husband of Heathers best friend and Jack our next door neighbour ( who is at his first non Jewish funeral)  at the very back is the celebrant who did a wonderful job










Dad chose to be cremated and it was something we didn't wish to see we just wanted to remember the Man he was before M.N.D so with
the sun shining brightly he was placed in the hearse and farewelled

flowers

so we got flowers from
my work











the family











two lots from mum's work

Les McKay 1944 to 2014

Dad's passing was peaceful and we are greatfull that he is no longer suffering from that stupid M.N.D , we are thankful for everyone who came into our lives and helped us care for dad just to name a few below

Dr Janet Turnbull and her associate Selena
Moira and field worker for the assoc,
Finoa the phyiso
Steph the occupation therapist
Liz the district nurse
Liz the other district nurse
Nola the dietistian
Levy the carer
Val and Biannca the speech therapist
Wendy and all the Mary potter hospice staff
Lorraine and Kevin


we also want to thank our works for being so under standing and supportive

june part 3

on Tuesday the 24th June, dad was meant to get his motorised wheelchair that didn't happen as M.N.D had other plans, we had just started overnight feeds though the peg and this morning dad was having a huge choking and coughing fit, the district nurse had been to give us some equipment for in case the peg tube came out and also to check a pressure sore that was starting to form,
she had just left when dad had another fit, I managed to calm down and then Steph the OT turned up with his chair and together we decided that dad should go to the hospital, the ambulance was called once again and the ambo was also called Les McKay with family from cathiness region.

we were in the er for about 4 hours while they arranged a room at the hospice for dad,  an aorund 7pm we were transferred there,

while at the hospice they put dad on morphine for the cough ( amazing stuff stopped the cough almost completely) and then on Buscopan which help really well in drying up the saliva .

on Thursday the radiologist had had a chance to look at dad's xray from the er on Tuesday and noted that a small part of the back of dad's lung had collapsed and might have started a bit of an infection so he was put on another round of antibiotics, he was also given a driver ( a piece of equipment that pushes a syringe down slowly to release medicine) and was taken off night feeding after another round of coughing and choking
thins were looking better till sunday when he really when down hill after another coughing fit 

we started a Liverpool care pathway ( form of standardised care for those in their last days) about what we would like to happen between now and his passing and then after his passing

we all sat with day all of Monday with mum staying the whole night and then again on Tuesday till he passed around 215 in the afternoon

june part 3 M.N.D week

so on the 22nd we were going to take part in the 10km walk around the bays as part of the Wellington marathon, but dad was still having breathing issues so we ended up not going,  but here is the link to the facebook of the M.N.D assoc and if you scroll down (dated 25th June) you find photos of the rest of the group at the race https://www.facebook.com/mndanz?hc_location=timeline

june part 2

we got assessed for care in June,  dad was to get 1 hour of care a day, this was to wash shave change and get him up if he wanted it, at first it was one of the lovely district nurses who came up  and dad seem to be ok with her,  then we got a access carer who was quite rough to the point where we think he was the reason dad and a third hospital visit  due to there being a great deal of blood in his uridome ( its a pee bag but instead of the tube going inside the penis, the tube attaches to a condom instead ),  he was checked out and everything looked ok so was sent home. 
the carer came back the 2 days later and 30minutes after he left the new uridome had come off and leaked every where and I had to figure out how to put on a new one and then change all the sheets  not fun esp when dad didn't want to get out of the bed

it was during the care assessment that we found out dad hadn't been taking his meds for about 6 weeks so after the monthly meeting we went to see dad's doctor who was happy with dad's stats that he cancelled all the med expect the M.N.D related ones

we didn't stay long at the meeting as the rest home its held at decided to have all the heating turned right up so the room was super stuffy

we also met the hospice lady, and we thought about arranging respite care for dad so mum and I could have a break and rest, respite care is where they go to the hospice every 6 to 8 weeks for a week and can get meds if they need some and the carers can have a break and take time to relax and not have to worry

june part 1

June 2014 part one

this month was was the most Horrible month,
first off  on Thursday just before queens birthday week end here dad decided to tell us he was having breathing problems, so we ended up call the ambulance again and ended up having a 3 day stay in hospital  due to a possible lung infection, they gave him so antibiotics and fluids as he was also dehydrated from not being able to drink enough,

the following week he got to have his peg operation which was meant to be an in and out on the same day event, but due to waits ended up in another overnight stay for dehydration. the little patch behind his ear is a sick sicken patch which is meant to help dry up all the saliva, he had been trying to drink this product
but had been getting bad coughing and choking fits and found that the peg made it easier to give dad enough fluid and calories with the main to put some weight back on  he is about 72kg in this photo  all seem to be going ok at this time

and we had just got the news that a motorised wheel chair was arriving for dad in a week or 2

Friday, 9 May 2014

What a busy WEEK!!

So this week has been so busy with something happening every day for dad, Mum booked the week off when two events were happening then everything else just seemed to come up, It's been stressful at times and really great at other times, so here is a run down

Monday- hospital visit Neurology dept

This was just a check up to see how far things had changed, It was decided that there isn't really much  more they can do for dad here so will leave in under the care of Dr Turnbull the geriatric / palliative care doctor

Tuesday - Physio home visit 1

The Physio came up to teach dad some ways to help him cough easier when he is having problems with all the saliva in his throat and mouth, we were going to be trailing a cough assist machine but someone else needed it more at this time which is fair enough

Wednesday - Support group meeting and O.T home visit

THIS WAS AWESOME!!, we had fun trying to work a prototype wheel chair, as well as one of the ladies showed us some tools she used to help transfer her husband from chair to chair or bed, these were tools we had not heard of or even knew we could get,  We since have got them, and they are a godsend,  We also may have volunteered to do the 10km walk at the Armstrong Wellington marathon, in June to help raise money for the assoc.

When we got home from the meeting it was really windy and Dad had a Bad fall going from the car tot he house with his walking frame, and ended up with a nice goose egg on the back of his head, Mum and I tried to get him up but because he was a bit shocked by the fall he couldn't help us and we were not able to get him up so had to call an Ambo for the 1st time, Wellington free Ambulance was awesome, friendly, and very helpful. Dad was a bit down for the rest of the day and now needs to build up his confidence to use the walking frame again

The O.T (occupational therapist) popped up to take some measurements for ramps outside the house, which as really well timed to help with getting dad in bed after the ambos had gone, so we should have a correct and safe ramp in the next week or two

Thursday - hospital visit Gastroenterology

Not the best hospital visit, we are trying to see if dad can get a P.E.G. it is a tube into your stomach thru your abdominal wall  that you can be fed and medicated  thru as well as taking food thru the mouth, we are just waiting for them to come back to us with a date and time for the op
And the 1st of 5 rearrangements of the bedroom happened today

Friday - Home visits from Dietitian , Physio and O.T

So this was meant to be Mum's day for her during her time off, but ended up being a long slightly stressful day. so first off we had to rearrange the bedroom again because it hurt too much to lay on his side, then the dietitian came to see dad, he is down to 73kg ( still a health bmi apparently) and is only eating about 900 calories a day, she was able to explain to us more about how it works after you get the P.E.G,like how and when you feed, she also started to come up with ways of getting dad up to 2500calories a day. but we feel better about the op now she has explained it more than the 2 doctors did the day before.

Then we rearranged the bedroom again because it hurt more laying on the other side

The O.T and Physio came up to show mum and I some transfer tips to help move dad around

We got a banana board, it acts like a bridge from one location to another. so dad sits on one end and slides himself to the other side, it really makes getting from the wheel chair to the bed easy,  we also got a belt that he can wear while walking and we can hold on gently and if he starts to wobble we can grab hold tight to try and stop him from falling, and lastly we got a set of slippery sheets,  to moving him if he is laying down

then the O.T took measurements so she can start the process to get a power chair for Dad in the next week or 3 (YAY!!!)

and then we had to rearrange the bedroom again 1st because it too sore to lay on either side, then just because it was plain uncomfortable so am down to the last possible place the bed can go in that room with out moving Mum out completely


Other stuff that is happening

we are waiting on a care assessment, to get help with caring for Dad, so it would be like someone coming in a few times during the day to get him up washed fed etc.

we are waiting on details about getting botox injections in the saliva glands to help reduce the amount of saliva

and lastly we are waiting on the DHB to approve the 1st plans for changing the shower in the bathroom to a wet room area so that it is easier to get Dad washed

hopefully thats it for a little while so that Mum and I can get some rest and do a few thing we want to do

see ya all next time

Wednesday, 9 April 2014

New equipment day

Yay. It was like christmas last night. Dad got a power lazyboy chair to watch tv in. It reclines and helps him stand up all at the push of a button.
He also got one of those bendy hospital beds which he found a bit better to sleep in last night.
Mum slept on a mattress on the floor as we hadn't moved the rest of the single bed in for her. Should get it done this weekend

Wednesday, 2 April 2014

Wheel chair day

So today dad got his first wheelchair,  its just a standard manual one for when he is tired or we cant park right near where he needs to go. He has been practicing going from one end of the house to other

Friday, 28 February 2014

HI  its been a little while so here is just a post to bring up all up to date on how dad is doing with M.N.D

so since the last post  a few things have changed
1, Dad has giving up driving as it is too tiring and hard to move his leg in and out of the car, so his Jeep has been sold and he now has to put up with me and mum driving his around

2. he finally got a walker to help him get around, his one is black and has the small bag to carry Rory's lead and treats in

3.Diet wise Dad is almost completely on liquid diet, He'll eat the odd burger when he feels like it other wise its chocolate milk and prescribed drinks all the way he is currently weighing in about around 77kg which on his 6ft frame makes him look really really skinny on his arms legs and collar bone areas

4. he is also having more issues with talking and being understood so has been given a talking typewriter to use, he just needs to use it more

5. he goes to monthly support meeting which he seems to like, this meeting are for both carers and familys and are a great source of info on how to deal with the Govt. on funding etc. , and we always have a great laugh at the stories of some of the others

6. Mum and Dad have got to 48 years married( he hasn't changed that much)





so that's really all for now,
Its just going to be 1 day at time  and tackle each problem as it comes

Friday, 23 August 2013

some news stories

Sunderland-mayor-and-mayoress-take-on-motor-neurone-disease-
just-because-i-have-a-terminal-illness-it-doesn-t-mean-my-life-is-over
Joost van der westhuizen
 Wheelchair-warrior-to-race-round-the-waterfront

Where to now

the goal is to just keep going!, keep him active and independent as long as possible.

I'll post updates if there are any changes and I'll happy answer any questions, I only ask that you ask them here and not on facebook, I will post links about updates on facebook, dad, mum and Rory are all on face book but its just for the games! (lots and lots of games posts lol)

but please don't be afraid to ask questions

How is he right now?

Right now he ok its just a limp, cough and speech issues and we hope it stays like that for a while, everything is ok to manage with at the moment mum is still working, so she is home with him at night and I work nights so I'm home during the day if he needs anything,

He can still drive as his car is an automatic and its his left leg that is affect, he just got is permit for mobility parking so he can use the wheelchair car parks so he can open the car door enough to get in and out and he still takes Rory for walks most days.

He doesn't sleep much but he sleeps its on  the sofa which he finds is really firm and he can sleep in a slight sitting position to help with the coughing.

What can we doing to keep Dad going?

He is in contact with...
-physiotherapist who helps with exercises for the muscles to try and keep them going as long as possible
-speech therapist who helps with ways to communicate and eat
- occupational therapist who looks after if we need stuff to make the house and his day to day living easier for him
-A Geriatrician who oversee all his care
-the MND field worker  who looks after his rights and needs and provides a someone to just talk to

they are  all very nice lovely easy to talk to people who come and visit you in your own home

he is also starting to go the MND support meeting, where he is meeting other people with this illness who he can talk to about things like stuff they found that helped with deal with problems brought on my this illness

Is there a cure

Currently there is know official signed off by the health board cure.
There is plenty of research happening around the world in to stuff like stem cell replacement.
all we ask is that when you see the Blue cornflower you support it
mnd nz
MND UK

How did he get it?

Currently there is now know official cause of MND. expect for genes which may cause the familial ALS (FALS),the very very very rare passed through family type

Dad is going to try and take part in a research programme at Massey university  about the occupational and environmental facts that may cause or help trigger this illness, All we know is that Dad was made redundant from his job and it got quite stressful as he couldn't find another job that's when the symptoms started showing, but it could also be that they were always there but because he was busy we didn't notice them

It can be passed through family but is very very very rare so please don't panic that your brother, father, or son with develop this illness because dad had it, it can just happen to anyone

How is it affect Dad?

Dad's MND presented late last year with a limp in his left leg, which has gotten more pronounced over time and also gets worse as he gets more tired. So at times he needs to use a cane to walk with, at other times he has to lift his leg to move it if he is getting in and out of cars or when sitting in a chair.
The muscle wastage caused by the MND has caused his foot to drop as the muscles are unable to hold it flat, this causes him to stub his toes, stumble, trip and fall over, yesterday he was fitted with an AFO (ankle foot orthosis). which keeps his foot up and stops him tripping


He also has muscle issues with his tongue and mouth area which affect his speech and ability to swallow and talk. The swallowing issues can make him choke when he is trying to eat and drink, so he has to take his time and have meals which are wetter and easy to swallow, this also causes him to cough heaps as if he has a bad cold and is trying to cough up mucus.
The speech problems are more noticeable again when he is tired, yo  have to be in the same room as him, and sometimes he has to repeat him self for you to understand him, this is compounded with  the fact he has two hearing aids due to hearing loss from jobs so himself has difficulty hearing you


What is Motor neurone disease (MND)?



Motor neurone disease (MND) as it is know in the UK, New Zealand and Europe or ALS,  in the states  is the name given to a group of diseases in which the nerve cells - neurones - controlling the muscles that enable us to move, speak, breathe and swallow undergo degeneration( the protein they need malfunctions) and  then they die. With no nerves to activate them, muscles gradually weaken and waste away, causing increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing. The patterns of weakness vary from person to person.”

Think of it like the brain and your muscles a cell phones and they are trying to text each other and the neurons are like cell sites, the cell site stops sending out a signal which then causes one of the phone to stop work and so the text you send doesn’t get to the other phone

It can be passed through families but that is very very very rare! And is also less common in women and those under 50.

It has a life expectancy from time of diagnosis or 2 to 5 years but people can live up to 20+ years, it all depends on where the illness showed up first and how long it takes to progress