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!

Blimey its almost Christmas.

Hi all, Erin here. Just dropping in to let you all know that Bill is doing as well as can be expected at this point. Still eating and talking well, but requires someone with him 24/7 now. No. 3 son has finished school and stays at home with his dad while I am at work. I so wish we could afford for me to stay home to be his fulltime caregiver, unfortunately the reality is, we can't. So our daily routine is I get up around 6am, wake the kids and get them organised for school around 6.30ish. Breakfast etc etc etc by 7.30 and kids are out the door around 8ish....give or take half an hour depending on how grumpy we all are.....
Then I get myself organised for work, wake No 2 son up to get himself off to Polytech, wake Bill and No 3 son up just to wake them up hehehehe. Start their breakfast for them before Pat and I leave for polytech and work around 8.15-8.30ish.
Pakura then helps his father out of bed, get dressed, washed and what ever else Bill might need help with. (some days he can do more than on other days, just depends really from day to day). We have to sort of judge when its best for us to intervene and help out because it is important that Bill remains as independent as he can for as long as he can.
I phone home around 11.30ish to make sure Pak has his fathers lunch organised, if not I'll shoot home (I'm only 2 minutes down the road if they need me)  I don't have to do that very often though, good thing about Pak is, he likes to eat.....so generally he's got something cooking all the time. Bad thing is, I cop all the dishes when I get home.....ah well, can't have it all I suppose.
I get home from work just after the kids get home from school around 3.30, spend about half an hour with everyone just catchin up on the days news, Pat arrives home from Polytech around 4ish, and sits with his dad while I get dinner started, throw the washing on and all those everyday chores that every working mum has to deal with. Pak has the afternoons doing whatever he wants to do once I get home. Kids will make themselves an afternoon snack. We usually sit down to dinner around 7.30 because thats what time everyone is home, then I'll get Bill prepared for bed, toileted, showered and/or washed, which can be a time consuming excercise, he hasn't quite come to terms with allowing our kids to help him with his ablutions at this point, so again, depending on how he's feeling on a given day, this could take anywhere from 30 minutes to an hour on good days and more if its a really bad day (happily there haven't been too many of those). Then our youngest 2 will shower and get themselves ready for bed etc, Bill usually in bed now by 9pm at the latest. Then I'll do the housework, my house is usually spotless from 10.30pm to 7am......lol. Pat helps out wherever he can, mowing the lawns when he gets home from polytech. On a Friday night our big son arrives to take his younger brother and sister for the weekends, (most weekends), Pat and Pak do what teenagers do all weekend....DONT ASK......and Bill and I work together around the house doing the odd job or two.

Don't know if either of us will get on here before Christmas, if not we want to wish you all a wonderful holiday season.

The Gardiners....

51 today

Well, here I am another year older and I think I'm a little bit wiser. Just did a quiet dinner at home with my family. Older boys gave their mother the night off cooking and rolled up the driveway with a backseat full of takeaways....lol. Which is ironic, because their mother had to cook her own birthday dinner mainly because we're all bloody hopeless and can never remember when her birthday is......shocking but true....I only remembered when her sisters phoned to wish her a happy birthday and she had already left for work....duh. She of course has become used to us not remembering and didn't expect anything less....lol. So as she does, she had her birthday dinner all sussed, went and got her groceries after work, came home cooked her dinner, sat in front of the tv and told us there was plenty of cheese and bread in the cupboard for our dinner....SO toasted sandwhiches it was. She did share her pudding with us though, lol.
How am I? I doing ok. Alot less mobile then I was at my last posting, not able to shower myself anymore, not as independent as I would like to be anymore, can still feed myself but with difficulty. On the upside, I'm still talking and eating well so things aren't too bad really. Managed to make it through the cold winter without any major dramas so all in all I'd say its been a pretty good year.
Thanks to everyone for your messages, as you've probably guessed I'm pretty hopeless when it comes to replying but I do read them and I appreciate all of your thoughts and good wishes. Until next time, take care everybody.
Bill

Hi, I'm here

Ahem.....been way too long aye! I hate to admit this, but I forgot my bloody blogger password and didn't know how to get another one.....I guess if I had asked Erin what it was you just might have heard from me abit earlier lol. You know us men, hate asking for directions and in my case, hate asking for bloody passwords hehehehe.
But I bit the bullet ASKED Erin if she happened to know my password....(duhhhh, she set it up for me) and here I am.
Whats happened since last time: I decided not to go with the peg at this stage, then I got sick (caught a heavy flu) and thought to myself well ain't that just TYPICAL Erin and I had discussed the pro's and the con's but she left the final decision up to me, and I just wasn't ready to have it. Since then, I have been progressively getting less mobile. While I was sick, my arms and legs got a lot weaker and I haven't got the strength back now that I'm feeling better. I can still stand at the toilet, but can no longer get myself up off the toilet seat, so I'm using a commode now, its just so much easier for Erin that way. Have received a big box of external catheters to use at nights, because in this cold weather I'm wanting to GO all the time BUT I haven't wanted to use them, and I haven't used them yet. Erin instead put an electric blanket on my bed, something I've always hated and I slept like a baby, all night long without waking to go to the loo. Then I got sick again, and two of our kids got hit bad with the flu and it all got abit much for Erin who had to ring her mum to come and take the older of the two kids to her place for a few days and she hated having to do that.....but she was running around like a chook without a head from room to room with tissues, and cough medicines and anti-biotics as well as having to go to work. Thank goodness for our older two boys who were home with us when she wasn't. Also thank's to Erins job who are really understanding of our situation and are ultra flexible where Erin's work hours are concerned.
So thats been my exciting life since my last post....lol. I'm still positive, I'm doing ok considering, and all my kids are back to their healthy fighting selves oh and I've put my password somewhere where I can find it.....So, I can't use that excuse again.
Wrap up warm, everyone, its cold out there at the moment, look after yourselves and your loved ones.
Bill