Bills Journey - MND
Motor Neurone Disease "Come Fly with Me"
Tuesday, August 14, 2012
1 Year
Kia Ora all, its been over a year since you last heard from me. Just thought I would share my poem with you all.
This past year has been pretty tough and presented my kids and I with one or two hurdles, but we've managed to overcome them all through patience and love. Have learnt alot about myself since Bill passed on. Just taking one day at a time, one week at a time, one month at a time has helped immensely.
We miss Bill tremendously but he would not want us to stop living our lives to it's fullest and now that a year has passed it's time to move forward for my kids and I. Bill will always be in our hearts and minds but now we look forward to what the world has to offer. What ever happens, happens. Not going to pre-empt anything, just going to go with the flow.....
Catch up soon.
Erin
Saturday, October 29, 2011
In the Arms of the Angels!
On August 6th 2011 my darling left us to join his whanau in heaven. Since then our kids and I have gone through a whole series of emotions ranging from guilt, to anger, to grief. Bill enjoyed the simple things in life, he lived in humility and dignity and we his family miss him dearly and we always will.
We celebrated our youngest sons 14th birthday on Sunday July 31st. Just a whanau lunch with all the trimmings. Everything was as usual, nothing out of the ordinary. Bill seemed to be really good. Monday night Bill seemed a little more uncomfortable than usual, wakeful all night and just not his normal self. Tuesday he was very very tired and didn’t have the energy to get out of bed or to have a break off his bi-pap. Didn’t want to eat either.But still nothing that we hadn’t dealt with before. I was on the phone to the hospice nurses that night, they told me what to do to make him more comfortable and this worked for a while but again he had a sleepless night. Wednesday his physio came and gave him a bit of a pep talk about going to his GP and just having a check over. It was at this point that I figured something was different this time around. He refused to let me call the Doctor he didn’t want to end up in hospital for the weekend because the All Blacks were playing on Saturday night and he was bound and determined to watch the game on his own tv. By Friday he hadn’t slept in 3 days, he wasn’t in pain just very uncomfortable (at least that’s what he told me). In hindsight I don’t think he was being completely truthful to us. By Friday he was still refusing to let me take him to the hospital, and all Friday night I was up with him and he was talking like I hadn’t heard him talk before. First light Saturday morning he said to me…..”take me to the hospital, I want to go to sleep” BIG RED FLAG WENT UP….he hated the hospital! One of our sons and I took him to the hospital, another son followed in his car his car. Our two youngest kids were with their older brother and we phoned them before we left for the hospital. We weren’t at the hospital more than a half an hour, he was in the middle of describing to the nurses what was happening with him when he closed his eyes and from there all hell broke loose. He was rushed into recus: I had sent my son outside to phone his siblings to hurray up and get there and while he was outside the Drs asked that dreaded question: Mrs Gardiner, what would you like us to do? Bill had a note on his file that said he did not want to be resuscitated. We had discussed this very scenario on many different occasions and Bill was determined that he did not want that. I went against his wishes and said yes, do what you have to…..doctors came running from all directions and that's when my son came back in the room and said “Mum, dad didn’t want this.” As it turns out the Drs had already determined that no amount of work on Bill was going to bring him back and so Bill beat us all to the punch and took his own destiny in his hands and he passed quietly and thankfully without having to endure the invasiveness of medical intervention. While it seemed like hours in actual fact it was only a matter of 10 or so minutes that this all happened.
It is coming up 3 months now and I am now at peace with things. Guilt…….it has the power to bring you to your knees!
Guilt in the first instance because I said “yes” when Bill said “no” And then guilt because I should have carried through even when my son came in and said don’t do it mum. And then guilt because I didn’t take action earlier and insist that Bill go to the ‘doctor or the hospital…..the emotions that hit you are incredible. I am fortunate that the same kids that Bill and I have moaned about in many of our previous posts have been my rocks these past months. They supported the decisions I made and in most cases were all involved in the decision making process so as I reflect back I am convinced that I did all I could do and Bill went as would have liked to,with a calm dignity that blew us all away.
His tangi and funeral was a testament to Bill the man, the husband, the dad, the brother, the uncle,the son and friend. So many people attended over the course of the 3 days, my kids and I and our family were overwhelmed by it all.
The haka above was performed by many of the boys who Bill managed, or coached over the years at the club. This is our club haka and never was I so proud of it as I was this day.
I have no doubt that over the coming months my kids and I will face any number of issues but I have faith that Bill is flying up there with the angels and if he thinks we need him he’ll give us a gentle nudge with his angel wings and point us in the right direction. I have 3 big milestones coming up next year, no 2 son turns 21 (so big party) if he has anything to do with it, No 1 son is getting married (so another big party) If his brothers have anything to do with it lol, and of course Bills unveiling.
To all the people who have been following our blog, thanks so much for your generous support over the years. It is my intention to keep the blog up and running, if I can help anyone going through what we went through via this forum I am happy to do it.
Much love to you all from the Gardiners!
Thursday, March 24, 2011
Hi Guys - Bill here
Have been really down lately which has had everyone in the house on tenderhooks, but I think I'm over that just now, managed to pull my head out of my you know what and snap out of it.......lol.
I'm still positive and it helps if you don't go alienating those that love you and just want to help you by biting their heads off whenever they come near you. Got a short sharp lesson in how to be nice a couple of weeks ago by my very very very patient wife.....ooooh by golly and they worry about me in a bad mood, you don't want to mess with her when she's got a bee in bonnet. But I see she's been keeping you all up to date with what's been happening.
My cousin was home from Ozzie for a couple of days. We're the same age, used to get up to so much mischief together in our heyday. We think of each other like brothers and it was really choice to catch up with him and his son, we just talked and talked for the 3 days he was home and he did me the world of good. Peter Boy, thank you my cuz!
I'm just taking things easy right now, as the weather is getting cooler, I'm preparing as best I can for the winter, hopefully all be well. Joan, thanks for your continued support for Erin and me it is awesom. Hello Thank you Joan for looking in on Erin and me every now and then Erin is always bubbling after she's spoken to you or read your messages.
James, we haven't had the opportunity to talk but thanks for supporting Erin with all your hints and help although mate, when you told her about them having to pull Judes peg out that didn't impress me much, lol. I hope Jude is well and yup we'll have to tee up a time to meet face to face or more like face to stomach if I'm in my chair and your not.....lol.
To everyone else who is helping Erin and our kids to help me....THANK YOU!
Thats me for now, talk to you again in another year.....lol
BILL
Thursday, March 10, 2011
Hi All, Erin Here
I tell you, he came out of that bathroom fair grinning from ear to ear......all done and dusted.
Have made the full transition to the sling hoist now, and thats taken a wee while for us to get used to. I can definately see the benefits in it for me or the kids down the track, but he misses the standing hoist. At least in that hoist he was able to reamin upright and fully extended for several minutes at a time, that made him feel so good. The harness bore all his weight, so he wasnt actually standing but it enabled him to stretch out and feel normal.
Now he has only two options, to lie on his back or to sit in a chair....so he spends most of his day on his chair.
2 weeks ago had a scarey night. Power Cut.....oh boy....that was an experience I can tell you. Bill's electric bed OUT...his bi-pap OUT....and do you think I could find a torch or the candles OH NO.....that would have been just too easy. Bill moves the back of his bed up and down all night using his remote control, and the power cut happened just as he was moving from flat to slightly upright.....he can't lie flat without his bi-pap so all hell broke loose. I'm running around in the dark looking for those damn candles.....had to wake the kids to come sit their dad upright in the bed. After 15-20 minutes of swearing and cursing finally found the candles so could see what I was doing with his hoist, so that I could get him upright in his chair for a while. I have one of those touch lamp thingys next to his bed but when I went to turn it on the darn thing wouldn't work. TYPICAL....unbeknown to us at the time the kids had nicked the batteries out of it for their blinkin playstation control but of course not one of them said a word until the following day....Took us awhile to get him into his wheelchair but he was alot more comfortable in it. Sat there talking weighing up our optons, decided to put him in the van and take him to the hospital so we could "hook him up", he was nackered, and needed to sleep, I was just as tired. So we started loading him into the van, by this time approx 45 minutes had passed and what do you know the power comes back on.....sheez. So back to the house we go, all abit grumpy but grateful. Got Bill back into bed and spent a wakeful night hoping the power wouldn't go off again.
Following day the older kids come clean about the batteries and go buy me a whole bunch of new ones.....and the day after that we got a portable generator, I'm not gonna take another risk like that. Still have to go buy another torch and have put the candles somewhere I can get my hands on them fast.
Exciting aye?
So we are now getting a battery pack for his bipap- (too big for the kids to nick lol), will be cool because we will be able to travel a bit furher afield with it in the van. We've only been able to go out really for half a day maybe at the most before having to come home and put him on his machine.
The "water works" and the "earth works" have both been out of sorts too, so its been pretty rough for him just lately. He is still eating well though and speaking well which is good.
Starting to get cooler in the evenings and in the mornings, I think we're going to have to be extra careful this winter wih him, but he is still quite perky for all that.
Won't say when we'll check in again, as you can tell we're pretty slow putting things on here. I hope all of our followers are well, and talk again soon.
Sunday, February 6, 2011
Peaks and Plateaus = Erin here
Hi all, sorry we haven’t posted in a while. We’ve been going through a few changes just lately. Thus far we have been so lucky. For us it has been a slow journey. We’ve had some setbacks sure, but have managed to cope I think pretty well considering. These last few months however have seen a drastic change not only in Bills condition but also in his demeanour. To date whenever Bill was feeling down he was able to “snap himself out of it” quick smart. At the moment it is taking him longer and longer to pull himself out of that dark place. Its a worrying sign and it just saps the energy out of you.
Don’t get me wrong, he is still having more better days than bad days, but the bad days aren’t very nice. I didn’t realise how much I depended on Bills positivity to keep me going, dealing with a depressed Bill is not pleasant for me or the kids. Today we had a “few words” because he was short with our baby and made her cry, she had been trying to help him with something and wasn’t doing it fast enough, so I go in wearing my “mama bear” hat and give him a few short sharp words myself. He looks at me, grins and says, “I wondered how long you’d let me get away with it”. The buggar……I didn’t know whether to laugh or cry or yell at him again. So I pulled the ol “silent treatment trick” until our baby came out and said, mum its okay, dad said he was sorry for being a dickhead to me………THE BUGGAR! Soooooooo, all’s well that ends well as the saying goes.
We talked about the last few weeks and what’s been going on in Bills head that he hasn’t been telling us. Between Xmas and New Year, Bills family were here for their family reunion. It was awesome, first time Bill and all his siblings had been in the same place at the same time since his nephew died quite some time ago. During the reunion we had a series of minor setbacks which meant Bill only spent 3 hours at the reunion and the rest of it at home in bed. The reunion was due to break up New Years eve, so his immediate family the whole dang lot of them, all his siblings, all their children and all of their children decided well buggar it, we’re gonna go spend our last night in Tauranga with Bill and Erin, and they did, they left the reunion and came to our place, and he loved every minute of it. They celebrated new years eve a day early, all the young folk took off into the clubs and left us oldies lol at home just enjoying a few drinks and having a good catch up. Then the following day they all left, and while I was out waving the last of his family off, he was in his bed crying. Now one would think that I might get a clue from that wouldn’t you! Duhhhhhhh, he assured me he was just sad to see them all go and was good as gold after that. After our little heart to heart this afternoon he finally told me, he doesn’t think he’s going to see some of them again, he has a sister who lives in Australia and another one who is moving from Auckland to Aussy in a week or two, and a brother who lives right at the top of the North Island…….and he’s been keeping that thought to himself and letting if fester……..and then with the recent changes in his condition it just all got a bit much for him which is why he’d been acting so out of character.
I’m hoping that for the time being our little heart to heart means that things will be okay. Just a matter of keeping an ol eye out for any signs I guess. Either way, we just all need to be a little bit more vigilant and patient.
This past Thursday I attended the funeral of an Uncle of mine, he was a minister in the Anglican church. The Bishop officiated the funeral and read a poem that brought a smile to the faces of everyone who was present. The poem is entitled “THE DASH” written by an author named Linda Ellis….read and enjoy!
I read of a reverend who stood to speak
at the funeral of his friend.
He referred to the dates on her tombstone
from the beginning...to the end.
He noted that first came the date of her birth
and spoke of the following date with tears,
but he said what mattered most of all
was the dash between those years.
For that dash represents all the time
that she spent alive on earth…
and now only those who loved her
know what that little line is worth.
For it matters not, how much we own;
the cars…the house…the cash.
What matters is how we live and love
and how we spend our dash.
So think about this long and hard…
are there things you’d like to change?
For you never know how much time is left.
(You could be at "dash mid-range.")
If we could just slow down enough
to consider what’s true and real,
and always try to understand
the way other people feel.
And be less quick to anger,
and show appreciation more
and love the people in our lives
like we’ve never loved before.
If we treat each other with respect,
and more often wear a smile…
remembering that this special dash
might only last a little while.
So, when your eulogy’s being read
with your life’s actions to rehash...
would you be proud of the things they say
about how you spent your dash
That’s all for now, talk again soon.
Erin
Wednesday, December 15, 2010
Friday, December 3, 2010
Hi all, Erin here
Its day 2 now since he had the peg inserted and he's been in bed since we got home from the hospital, not sick just feeling abit bruised and battered. I'll get him up tomorrow and we can potter around outside in the garden or something.
We are in the process of transitioning from the standing hoist to the sling hoist. That was a big call. But its starting to get more difficult for us using the standing hoist. His back isn't as strong as it was and you can feel he is just a wee bit "floppy". His legs can hardly bare any weight at all now. Having said that, on a good day we will use it if I have someone else that can support him from behind while I operate the hoist. The sling hoist will be alot easier for him and me they say.We've got a week or so with the two hoists and then it'll be byebye to the standing hoist forever.
Other then that he has been doing absolutely fantastic. Still eating like a horse and yes sometimes he eats what he isn't supposed to. Been out and about going for drives and things and that's been great.
Just want to send you all our best wishes for the festive season now, because knowing me I won't be on here again for a while, not enough hours in the day just at the moment. Cherish your loved ones, honor the memories of those who have passed on and honor yourselves enough to know that you're the best person you can be.
Meri Kirihimete - Merry Xmas to you all wherever you are.
The Gardiners