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

Double Blessing – Good things do happen sometimes.

Blessing number 1:

Quite a while back, when Bill couldn’t drive anymore, we gave his car to the boys. Wasn’t such an issue for us, I am within walking distance to work, our two youngest were on the bus route to schools etc. Then between the two boys they racked up a whole heap of fines, from speeding fines, to parking fines, to you name it they got fined for it…….Dang…..SO, I sold the car out from under them, paid off the fines and that left us carless. (Again, not really an issue then). The last couple of months have been pretty trying in terms of getting anywhere, mainly while Bill was in hospital, my neighbours (our cousins) gave us use of one of their cars during this period, bless them. Bill left hospital on the Wednesday and on the following Sunday while at the club, something crazy happened. Mums boss, who also happens to be a relation of ours rocked on in to the club, took me aside and told me she had brought my family a car…….I thought to myself, get outta here, those sorts of things don’t happen to us! Now, she had obviously had a drink or 10 lol, and I wasn’t really taking her seriously. BUT, while I was at work on Monday, the phone rang, it was my Mum telling me the car was ready to be picked up from the car dealers, NOW…. Well, I just about fell off my chair. I still wasn’t believing it, phoned our oldest son at work, told him what had happened, asked him if he could take the rest of the afternoon off work and to go pick the car up for us, I was too busy thinking I was dreaming the whole thing. An hour later, my family and I were sitting at home looking like stunned mullets at this gift that had been given to us… What do you say to people who just out of the blue do things like that, geez it’s been two weeks and I’m still pinching myself. Thank You just seems so inadequate.

Blessing number 2:

Just before Christmas we applied for a lotteries grant to purchase a mobility van with hoist for Bill. You guessed it…..this past week we were notified by the lotteries board that our application had been approved. GOBSMACKED! I picked the letter up from the mailbox, started reading it and by the time I got on to our deck I was doing a dance and whooping and spluttering and generally looking like an idiot, then I showed Bill the letter and honestly he almost, ALMOST jumped out of bed and did a jig himself…..lol. Good grief, from no vehicle to 2 vehicles in 2 weeks. We are still shaking our heads not believing what has happened. Nothing like this has ever happened to us before, and I don’t think it will ever happen quite like this again, but hell its put a smile on Bills face that makes it all worth while. Have started the hunt for the van which will need to be approved by a qualified assessor as being appropriate for Bills needs, and once the van has been approved then we need to do the modifications (fit the hoist etc). So not sure how long that process will take, but hopefully by next month sometime,  Bill will have van and Bill will travel YES!

Just wanted to share that with you all, still can’t quite believe it. Have got to say that we’ve been visited by angels over the past several weeks, from our cousins next door,to mums boss (you know who you are) to the lotteries board and those who helped us put that application together THANK YOU!

The Gardiners

Erin Here: It’s been a hell of a week.

2 weeks ago we had had such a good catch up with Bills family, most of whom travelled down from Auckland to A: Have a working bee at our whanau urupa; B: To have a meeting about the Gardiner whanau reunion and C: To see Bill. Bill caught up with some of his cousins, brother and sister and heaps of nieces and nephews, so he was on a high after they left. And then came Sunday….thought he may have caught a slight chill so he remained in bed all day Sunday, Monday and Tuesday, by Wednesday I had his GP on our doorstep who immediately phoned for an ambulance and off to hospital we went…….Pneumonia…AGAIN! Not a very pleasant time there, but we were in the best place while he was sick. I stayed with him while he was in hospital, he suffered from severe panic attacks while in there and really became quite dependant on me being within eye contact all the time. It’s exhausting sitting in the hospital day in and day out if you are a caregiver, much better in your own environment doing things in your own time. His mum and sister travelled down to be with him on Friday, which was really nice, that allowed me a few minutes to go walk out the kinks so to speak. Then on Saturday, my two sisters rocked on in to the hospital, told my husband in no uncertain terms that they were going to look after him for the afternoon while I had a break with the kids…….lol, if you could have seen the TERROR in Bills eyes hehehehe it was really comical. Even he was seeing the light side of things before I left. I said to him, mate it could be worse, you could have got my MOTHER…..lol. Long story short, took my 2 youngest out to watch their big brothers playing rugby then all of us went back to the hospital to find Bill and my sisters having a whale of a time……blinkin MARVELOUS….

Returned home from the Hospital on Tuesday evening so not quite a week in there but Bill is still very weak and has become more dependent on us for his personal needs then he was before we went in to hospital. Is this a permanent change? Only time will tell I guess. He now depends on us for feeding and still has panic attacks if we aren’t within hearing distance but the hospice staff came out today to help us deal more effectively with the panic attacks so hopefully after a few days he’ll get on top of that. If anything good has come of his hospital stay I think it is that our  oldest boys finally realise that this is the  “real deal”, Dad isn’t going to get any better and in fact he’s starting to get worse. They’ve all been falling over themselves trying to help, so in that sense its been good. This has knocked Bills confidence a whole lot and I think it will take a while before he gets back to that positive headspace, but if anyone can, he can.

So, for the time being at least, we will literally take each day as it comes, help each other through the rough times and enjoy the good times…..

Life's too short to sweat the small stuff

Its cold out there – Erin Here

Hey there,

Well, I’m feeling a lot easier then I was during my previous post. Bill, while doing well is really feeling the cold weather at the moment and is spending longer and longer in bed during the day. Fiona our lovely Speech therapist has been out and done her thing and is really happy with his progress, or rather “lack” of progress. Bill is definitely weaker then he was, but his breathing, eating, swallowing is absolutely wonderful. Blood oxygen levels are as good as mine and hers so fingers crossed we’ll make it through winter without too much fuss.

Have some issues with transport now, Bill is no longer able to tolerate transfers into and out of an ordinary car, but because we had missed several appointments at the hospital to see this particular doctor we were told that unless we made the next appointment we would need to be referred again through a specialist. Our local hospital shuttle provides a wonderful service for a small donation but is only able to carry one motorised wheelchair at a time and our appointment clashed with someone else in a wheelchair who had booked ahead of us. So our only option was to take him by car. What a headache….. Had to keep Patrick home from Polytech to help me transfer his dad from motorised wheelchair to vehicle at home, vehicle to manual wheelchair at the hospital and the same in reverse. Long story short, we got to the hospital only to be informed that the Doctor was off sick and they were very sorry, they had tried to contact us to postpone the appointment and for some reason we hadn’t received the message. Grrrrrrrrrrrrr, that poor lady on the reception desk got a short sharp YOUR KIDDING ME….DO YOU KNOW WHAT WE HAD TO GO THROUGH TO GET HERE……grumble grumble grumble…….So we made the trek home in stoney silence…..actually that’s not quite true….I made the trek home in stoney silence. Bill was actually quite amused by the whole episode, thought it was a great joke……which only made me worse and Patrick was even less forgiving then I was. I can’t repeat what he was saying lol…..actually I can’t repeat what I was saying either….so I won’t. Phoned one of our clinical team and moaned my head off to her, 2 days later we received a new appointment and woooooohooooo they’re coming out to see Bill from now on…..Normally I just roll with things, easy going type of gal….lol, but that just got right up my nose.

Anyway, that’s my lil moan for the year. On the upside, we have put an application in to the Lotteries Commission to fund a mobility vehicle with lift for Bill. We don’t really expect to get it, but we are hoping we might. Bill as I think we mentioned in an earlier blog is BORED BORED BORED. The transport thing means that for 95% of the time he’s stuck at home and as the weather has got colder he is confined to the house. The ability to be able to just take him out for a drive somewhere, or if its fine enough to go watch the kids in the sports/recreational pursuits would help alleviate this no end. So cross your fingers, toes and anything else you can cross for us folks, maybe send some “Give Bill a vehicle” vibes in the direction of the lotteries commission will work for us. They make a decision on July 10th so we’ve been told.

Bill had a nice visit from his Uncle Iri a couple of weeks back and then from his Mum and Aunty Anne last weekend so that brightened his outlook on things a whole heap.

  Aunty Anne, Aunty Sue, Aunty Kuini, and Bills mum Cherry

    Uncle Iri, our son Timoti and Bill

Well, that’s enough from me for now. Was really just trialling the Windows Live Writer, to see if I could pretty my page up a bit more. Finding it really easy to use, so you just might hear from us a bit more often now.

You all take care of yourselves, stay warm, stay dry and stay healthy.

Erin

One day at a time - Erin here

Haven't been able to sleep lately. Not sure why, mind is in overdrive and won't slow down. Haven't been adding to the blog as Bill has been doing quite well really, but I have a funny feeling all is not right. Outwardly Bill is still the same, always positive, always upbeat, but during our quiet times I'm sensing he's starting to withdraw a little bit, not telling me everything. He's a quiet guy anyway, but the silence is deafening just now...can't put my finger on it, just doesn't feel right.
I'm hoping I'm just suffering from a little bit of overtiredness and reading too much into things.
Have been corresponding with Rick and Joan Frewster in Canada who are travelling the same road as Bill and I, reading their blog (which they keep updated regularly) and emailing little messages to one another they are an amazing couple and I draw strength from their strength. What I hadn't anticipated was while I am drawing strength from them I am also seeing what may lie ahead for us and its brought home to me how things can change in an instant with MND. I have researched myself into the ground with this disease and intellectually know what is to come, Bill has chosen not to look too far forward and just takes one day at a time and I respect that. But I need to know, sounds terrible because it isn't about me, but its kinda backfired on me. I think because I have come to know Rick and Joan albeit via email and lil notes, it has become personal and I'm feeling their pain right now. I've read other's blogs but hadn't ever corresponded with them, so I guess I'm just feeling really sensitive in the quietness.
Going to take the next few days to still the "revolving door" of a brain I have right now, make sure that Bill is okay, pick myself up and carry on fighting the good fight.
Erin

Erin here!

Another year has rolled past  us and while we had some hairy moments last year thankfully all is well with Bill right now. His biggest enemies at the moment are Boredom and Constipation! Therefore my roll at the moment is trying to relieve the boredom for him, which sometimes works and sometimes doesn't and of course dealing with the uncomfortableness of his constipation.
Next month will present a new set of problems for our family when the kids head back to school after their holidays and the 2 oldest boys start their polytech courses while I am at work. It is my mission at the moment to get all the able bodied occupants in my household into a daily routine to help out with Bills needs and also those dreaded daily chores. Let me tell you, that is not going to be easy.....Patrick is 19 now and its taken us this long to get him to pick his own clothes up off the floor all by himself lol....
I'm going to be starting work an hour later so I can help Bill with his morning ablutions etc and then initially anyway, will be coming home a couple of times a day at lunch time and in the afternoon to get him onto his bed for his afternoon rest. But we'll just have to take things day by day and just see what works for us and what doesn't. It has been suggested by family that one of our boys might apply to become Bills caregiver during the day which could possibly give one of them a small income, but for the time being at least, Bill and I would like them to have as normal a teenagerhood as possible.
We had a good heart to heart conversation with the kids last night about next month and some of the difficulties that may or may not occur and I have to admit I was slightly taken aback by the boys positive attitude to what we were saying. I have to say that I haven't actually expected too much in the way of help from them in the past, I was actually anticipating "the argument" that would ensue if I asked for help rather than giving them an opportunity to help if they wanted to. I preferred to avoid "the argument" and just do it myself........I'm going to have to remember that my boys are young adults now!
Having said that though,Pakura put his father into bed the other night and I almost had a heart attack watching him. Good grief my poor husband (his poor father) got dumped on the bed with no finesse at all. I had to bite my lip to stop myself from yellin at him.....shut up Erin, just shut up!!!! Made a mental note to self...first thing to teach the boys is "how to transfer their father from the chair to his bed properly" LOL.
Bills mum and step dad, 2 sisters, 1 brother, 1 brother in-law and a whole heap of neices and nephews descended on our place on New Years Eve and painted our lounge and passage for us.....all done in dusted in a day...awesome! His mum, stepdad and sisters went home the same afternoon but Des, his brother and all of the nieces and nefs stayed in Tga for New Years Eve, that was neat too.
Thank you our whanau for the much needed paint job, will have to train Bill not to scrape the newly painted walls with his chair now aye! (He has been known to do that once in a while, all those things on wheels are quite awkward to move around in the house).
All in all we are pretty happy with where Bill is at right now, will keep you as up to date as I can over the next few months.
Happy New Year all!
The Gardiners!