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

Meri Kirihimete (Merry Xmas) from the Gardiner Residence

Hi all, Erin here

Hey there. I know, its been just ages. Just wanted to let you know that after over 2 years of deliberation Bill finally had a feeding tube aka (peg) inserted this past Wednesday. He is still feeling a little tender and if I'm honest still wondering if he did the right thing. It sits about 2 inches above his belly button. The whole procedure took only around 15 minutes. They were great, allowed him to have the procedure done while sitting in his own power chair. Brought his own bi-pap machine in with him because it is set specifically for him and generally the hospital ones he's used during past visits hes had a hard time adjusting to. Had the procedure done around 3 in the afternoon and told we had to stay for at least 6 hours after just to be safe. Actually the surgeon wanted him to stay over night. HELL NO he said. 6 hours max, then I'm outta here. As it turned out, it was closer to 7  hours but that didn't matter. He wouldn't go to sleep lol, he was scared I would leave him there for the night if he did. So at 10pm he signed himself out and home we went.
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


 

Erin Here!

Hey, just a quick note to let you all know Bill is well. We still haven’t been anywhere on the van. Had some really awesome weather the last couple of days, but while the kids were on school holidays, we took advantage of the time to get out and around the house, lawns, gardens and all those mundane things that have been sorely neglected just lately. Then the rain came back, so Bill decided to stay in bed.…….but he’s feeling good because he was able to potter around in the garage a little bit. Amazing how you take those little things for granted. He can’t hold a yard broom or a rake anymore, but did a fine job of supervising, and for once  got no arguments from the kids. All things considered, he’s doing really well and remains as positive as ever.

If you haven’t checked out the new-look MND site lately go check it out, they now have an interactive forum for caregivers/people with MND etc etc. Its looking pretty good follow the link on the right hand side of my page and go have a nosey. I’ve made a new friend in the forum already with one of its members who lives in Thames, he is the main caregiver for his wife and we spent a bit of time this afternoon talking about Bill and Jude (his wife) and generally just comparing notes. Anyway, I look forward to keeping in contact with him now and hopefully will get to know a few more people as time goes by. While its awesome to have friends and family to help out there is nothing like talking to people who are walking in the same shoes, being able to help each other out if required or just offering a knowing shoulder of support.

Speaking of friends, have been in regular contact with Joan in Canada since her darling Rick passed away. She’s finding it really rough going as I’m sure we all would coping with the reality of life after the loss of a loved one. She’s a pillar of strength Joan is and while she struggles daily at the moment, some day when she’s ready she will be able to embrace what ever lies ahead for her.

That’s about it for now, will check in again soon.

Erin

Have van, too dang cold and wet to go anywhere…..

Hey, Bill here.

Celebrated my birthday on the 7th of this month and got a special present delivered to my door……Yuss, got my van! Only one problem, I haven’t dang well been anywhere on it because the weather has been absolute crap……TYPICAL! Actually that’s not strictly true, my birthday fell on a Tuesday, and it cleared up the following Friday afternoon for a couple of hours. So, Erin got home from work, got me up out of bed, put some warm clothes on me and said “its now or never mate” lets go!

She locked and loaded me, LOL onto the van, and we took off around to our sons flat, rang the doorbell and surprised him with Me (and the van of course), It was still really cold so I didn’t get out of the van, just sitting in it enjoying being away from the house in comfort. We were there for a half our or so and then we drove around to the ocean beach while it was still light, we parked up and just sat there enjoying watching the surf. Didn’t say much just sat there until it got dark and then we came home. I really enjoyed that drive, only one downside to that trip, Erin forgot her purse, and I wanted an ice-cream, got the huffs because I couldn’t have one….hehehehe, nah just joking, was just happy to be somewhere other than home for a change.

Since then we’ve had nothing but rain that was 2 weeks ago, hopefully the weather will change for the better sometime soon, but the forecast isn’t looking too promising for this week anyway. Still at least I know when the weather clears I’m outta here, don’t know where I’m going but believe me I will be going…..LOL.

As far as my general health is concerned I’m feeling pretty good really, just the cold gets me. Fingers crossed things will remain this way for a while. Erin and kids are all well, had my mum down last weekend for her sisters 80th birthday. Its always good to see her, especially when she brings me presents and food, hehehehe.

That’s about it folks, same ol dull routine for the most part, but with a bit of luck that will change shortly.

Laterz, Bill

Oh, before I go, I promise to take some photos when I do manage to get out, and post them on here.

Erin Here!

Several weeks ago, we lost our friend Rick in Canada who we have talked about quite often in our previous blogs. He left our world as he lived, humbly and graciously. When we started this blog it was mainly to keep Bills family and friends informed about Bill. There are any number of stories both funny and not so funny that we could share but Bill has always been a very private person and we only ever post what he is comfortable posting. So for the most part we tell some of the story and not all of it.

Rick and Joan on the other hand without fail always told “the whole story” warts and all. I would think to myself as I read their blog, holy heck all the while admiring their courage. When Rick passed away I actually contemplated not telling Bill straight away because I wasn’t certain how he would react. (For the record though, I did tell him straight away). Having never met Rick I couldn’t say with any certainty but reading his blog I really think he and Bill shared the same quirky sense of humour. They for sure shared a shit of a disease but they both also shared a really really positive outlook for themselves.

Rick! Soar free with the Angels our friend.

No more are you confined by disease in a motionless shell

You’ve been released from your earthbound hell

Soar free with the Angels our friend

Watch over Joan as she watched over you

For her, a new journey ensues

Bless her with love and strength to mend

Soar free with the Angels our friend.

In memory of Rick, a hell of a guy.

Dedicated to Joan a hell of a gal.

Tougher by the day:

Every day at the moment brings a change in Bill’s condition'. Since leaving the hospital over a month ago now, Bill has spent the vast majority of his time in bed on his bi-pap. He remains forever positive but he struggles now to maintain what little independence he still has. He still has excellent swallowing, eating and chewing so that’s definitely a positive. On the downside he is very weak and gets very tired very quickly. We have a new care plan in place with increased hours for our caregiver. She is here 5 hours a day, 3 days a week at the moment. We’ve managed to work her hours around my work and the boys polytech hours, so that there is someone with Bill 24/7. Luckily for us our caregiver happens to be one of my closest friends, so if the kids aren’t pulling their weight, “aunty Di” will “deal to them” for me. And if I’m not pulling my weight well she’ll tell me off too. We’re also able to be more flexible about whose around and when, because my job allows me to work my hours around what’s happening at home. We’re hoping that for the time being at least things have reached a plateau for Bill but we have come to realise that in the blink of an eye, this disease can take a turn for the worse. Just want to make special mention of our “team” of dedicated professionals, Fiona and Anna-Marie (speech therapists), Krystal (our OT), Sue (Physio), Rose and the palliative care nurses from the hospice, Bills awesome GP, Stuart Lydiard and last but not least our family and friends who appear out of nowhere just when we need them.

We are still searching for a mobility van, one did become available but did not have enough passenger seats in it for all of our kids as well. They wanted us to take it, but Bill refused saying what the hell is the use of a van, if we can’t take the kids with us. Isn’t that the whole point of the van????? so I can go with them where they want to go. (Well what can I say) So we’re still confined to home, but with a little bit of patience and a little bit of luck hopefully another one will become available soon. We’ve got a couple of weeks grace period anyway, as the independent assessor who has to approve our choice of van is away on holiday.

As I’ve mentioned in a previous post, Bill and I have become quite close with a couple in Canada, Rick and Joan.We’ve learned recently that Rick’s condition has worsened dramatically. From their blog, Bill and I have learnt all we ever needed to know about MND/ALS. The highs, the lows, the “to do’s, the not to do’s” to  “give this a try” it is a very informative blog if you suffer from MND/ALS it is also a strong testimony in faith, love and spirit. Some of their korero is pretty scary, in that they are facing the future practically and head on. Something that we as maori traditionally wouldn’t do. But if I’m being honest I find it fascinating, the strength of spirit it takes to make public their innermost thoughts at a time when most would be determined to push things aside and wallow is absolutely awe inspiring to me. So to Joan and Rick just wanted to say your little piece of “hyper space” has made the world of difference to Bill and I.

That’s all from the Gardiner residence this cold night, catch up again soon.

Erin