It ain't half hot mum...

For a little dog that has spent both winters so far of her life, Whispa has proved to be quite up with the play when it comes to the fire. When I am setting it, she is right there being her usual inquisitive self. As you can see, she also enjoys the warmth. Another thing she has taken to doing is when I have my afternoon nap, she will sometimes get down off the bed , go out to the lounge & sprawl out in the sunny patch that comes through the lounge window about 2.00 in the afternoon. She really is rather keen on the concept of keeping warm. as I have found when I wake up in the morning, she is also not averse to snuggling down under the blankets with me if it gets cold. Either that, or worming her way in between my two pillows to keep warm. Yes, I know I shouldn't let her, & yes, I know she should sleep on her own bed on the floor, but she is such a loving little animal that I just let her be where she wants to be.

Jude has been having problems with her stoma lately with infection. The ointments aren't helping & she is in constant pain with it. The pain patches make her nauseous, so we have been using liquid paracetemol. The last time we went to the doctors, he took a swab & gave her 2 different creams for it. which haven't significantly helped. The District Nurses have been coming twice a week & treating granulation on it with silver nitrate, which does help a little. WE have a big day booked tomorrow. Our carer comes at 08.30ish & the district nurse soon thereafter. Sheena, the District Nurse, has lit a fire under the physio at the hospital & we have our first hydrotherapy appointment at 12.30 as well. I think I am going to have a tired little chicken on my hands by the time I get her home.

One of the problems that I thought we had surmounted raised it's ugly head again this weekend. Communication. She saw fit to tell her son that the cold water & cold Fortisip that we pump in to her is giving her the chills. Not so bad in the summer I guess, but most uncomfortable in the winter. I've solved it. Warm water, & remove the straws off the sides of the Fortisip bottles, take the foil seal off the top & put the 3 bottles in the microwave for 1 minute.

The open fire is good, but we have to be very careful about smoke coming into the room. I think it's going to be a difficult winter.

Blue Smoke goes drifting by

Very much so over the last few days. Sadly it hasn't been drifting so much as hanging around. There hasn't been enough breeze to shift it. Jude has also had a couple of really bad nights as well, but I didn't connect the two until about 2.00 AM this morning when I got up for about the 4th time to suction her mouth out. I could feel the smoke in my eyes & smell it.

Perhaps I should explain. Normally I fill our firebox with wood & shut it right off. That way it smoulders all night, keeps the lounge nice & warm for Jude when she gets up & all I have to do in the morning is open it up again & add more wood. It does produce a lot of smoke though & if there isn't any breeze at all the smoke doesn't go away. If it doesn't go away it ends up in our lungs. Not so much a problem for an old smoke eater like me but for someone as delicate as Jude is these days, its absolute bad news, so I opened the dampers & burnt the wood off. We both slept better after that. So we know now that we need to save our fires for windy or rainy nights. Live & learn I guess.

It's been a funny old week. last Thursday, while we were out for our walk, my little dog got attacked by some mutt not on a lead. When I finally got it off her poor little Whispa took off like a rocket. We found her about an hour later something like 2 kilometers away. I found out how much she means to me then I think. Christopher came down again this weekend. He is always good to have around. Not only does he provide good moral support, he also just quietly puddles away doing stuff round the house without being asked, which is wonderful. Jude's brother & sister also came down for a flying visit on Sunday morning for the second weekend in a row. Elsa left her rings here on their last visit & they decided that it was a good excuse for a second visit to come down to get them. It was good for Chris to get to spend a little time with them as well.

Tuesday saw me doing my second gig at the library. Attendance wasnt that great, but I counted it a win because a reasonable amount of people stopped for a while to listen to at least one of my songs. All the bugs have been ironed out with my new strings & the old beast stayed sweet sounding for the whole hour & I felt really good about it so its all good.

Well, thats my week. At the moment, I'm working out in my mind an idea for a pair of ramps to raise the seat on Judes wheelchair to the same height as the seat in Sherman so that I can slide her straight across from the chair to the wagon. I think I will make it from wood first, to make sure it works, then talk to an engineering firm to get it fabricated from lite aluminium. Will keep you posted regarding it & post photos. Have a good week guys.

Anniversarys & stuff

My youngest son phoned me tonight. He realised that it was our 20th wedding anniversary today & just wanted to make sure that I was doing alright with the idea. We chatted for a while & seeing as tomorrow is his daughter Conaires 2nd birthday & seeing as we had sent her a present, he suggested that we both flash up Skype so we could watch her unwrap her pressy, so we did. That took all of 30 seconds. She surely isn't a save the paper sort of gal. I thought I did well for a present for her. Its a kitset kite, that includes paint & a brush, so that you can decorate it your self.

For a two year old, she is doing incredibly well. She is talking quite legibly & actually called me "Poppy." That was a nice end to a mixed sort of day emotion wise. I have sort of been having my ups & downs emotionally these last few days thinking about what has been, what is & what is to come. I try not to think about the bit yet to come too much. What is can generally occupy my mind quite successfully. The anniversary gift guide says china or platinum & apparently we should be celebrating ideas & symbols. Somebody asked if we were doing anything special tonight. I said, "Yeah sure. We are going out for tea if we can find a restaurant whose concept of BYO includes the concept of 3 bottles of Fortisip & a 50ml catheter syringe." Didn't fancy our chances much, so stayed home & had a tin of Irish Stew that needed eating. Was OK, but would have been nicer with a bit more meat in it.

So anyway, I ordered her a rather lovely bouquet of flowers that had some beautiful red roses in it that she loves so much. That & bought her a soppy card as well. It all made her cry, so I suppose I did the right thing....

The Last Taboo

I have crossed a lot of psychological hurdles within my own mind when it comes to dealing with Jude's illness. Without going into too many details, most of them involve what I consider to be the infringement of what I consider to be her personal space. Things that I prefer to do for myself when it comes to my own body & that I find incredibly difficult to do for someone else. Still, when you see your loved one in distress & unable to communicate that distress, you are only left with one option. That is to do what needs to be done in a matter of fact fashion in a way that is caring & causes as little embarrassment as possible.

As you know, we have taken delivery of a suction machine for Jude's mouth. What you DON'T know is that I have an almost pathological fear of invading someone elses oral space. I even went out & bought a pair of tweezers so that I could put her Listerine breath freshening strips in her mouth without having to put my bloody great sausage fingers in her mouth. Anyway, Jude had a few difficulties getting settled when she went to bed last night. All I wanted to do was settle down & watch Kevin Costner save the world yet again in "The Guardian," but she needed help about 3 times. Eventually I figured out that she was having problems with an inordinate amount of phlegm in her mouth that she couldn't clear, so off I trots to get the vacuum cleaner.

The previous times she has used it, she was able to do it for herself, but late evenings aren't good for her, so she indicated in no uncertain terms that she would like me to do it for her. I'm not good at the best of times with suction in my own mouth. Unpleasant memories of dental treatment, but the thought of slurping around in someone elses mouth gives me the horrors. Not any more though. It's another personal hurdle that I have crossed & a little bit more confidence in my own ability to cope with things. No doubt there will be more to come, but I feel that little bit more confident about dealing with things.

In other news, I've done my first of two gigs at the library. Apart from a huge case of the jitters, I've learned a lot that hopefully will serve me in good stead for next week. It's taught me a lot about doing a show on my own anyway. It's a lot of years since I have done that, but I'm getting there.

The weather is cooling down so they say. We've had it pretty good so far. have only lit the fire twice & it was more for psychological benefit than warmth, but my bones are telling me that we have reached the end of the golden weather. Jude's natural brother & sister are coming to visit today. haven't seen them since before Xmas, so that should be good. Meantime, I better get my sorry ass off the computer, get some breakfast, get dressed, walk the dog & tidy up the lounge a bit. At the moment there is music spread from one end to the other.. Sighhhh.. Its a hard life sometimes, but it's the only one I have, so I try to make the most of it..

More steam, Igor.......

Jude's vacuum pump arrived today. Thank you Atilla for your prompt action. Don't get me wrong here, I'm not complaining about it. Far from it. Its proved it's worth already. Gave Jude's mouth a good vacuuming earlier because she needed it. It does look very Steam Punkish though. Either that, or something out of an old Hammer Horror movie. Lots of visible moving parts, a delightful noise to it and a vacuum gauge that wobbles & flutters as its working. The little dog finds it all incredibly fascinating watching it. Jude finds it absolutely fantastic, so yeah, its an oldy for sure , but worth its weight in gold. I think we'll call it "Igor."

We had a very productive afternoon, because not only did we have Sally, the physio, bring the pump out, we also had Lynn , the district nurse, here as well to instruct us in its operation. I sorta had the idea though, because I very carefully watched the ED nurse at the hospital on Saturday night. It turns out that its actually easier to let Jude do it herself. She knows where the problem is & knows how far down her throat she can put it without choking. Sally is also going to arrange time in the hydrotherapy pool at the hospital to give Jude some respite for her knee, which is troubling her badly. We are both looking forward to it a lot, because she is missing our spa pool. It's too awkward for her & she still has a persistent little infection round her stoma that makes it a bit dodgy for her to go into the pool at home anyway.

I've got butterflies. We went to the library yesterday & got to see the publicity that they have set up to promote my two little recitals that I am going to be given. Its absolutely fantastic, but very scary, so I'm putting in a lot of effort into organising a coherent & relevant sort of repertoire. I think I have it sorted. What is really good is that I am getting callouses back on my finger tips. I'm really pleased about that.

Hey it's good to be back home again..

As nice as it was to get away for a few days R & R, it's always good to get home again. There's nothing quite like your own bed & being able to do what you like when you like. Not that I didn't enjoy myself, I did. Had an absolute ball. Finally got to see Tane Mahuta & what a magical experience that was. Okay, so you go down a beautifully formed & maintained track with boardwalk when you get near the tree to protect the root system. But for me it was almost enough to see the beautiful unspoiled native bush on either side of the track. Coupled with that was the rain. I enjoyed it. There is nothing to me like the smell of wet native bush.. I stood & closed my eyes for a minute or two & it took me back further than I care to admit to when I prospected for a living & used to spend a week at a time out in bush like that.. Memories....

The only other thing we really did of any consequence we did was go & pretend to fish on the beach at Paihia. We didn't actually catch anything, but we didn't really expect to. It was enough just to have an excuse to sit on the beach & watch the world go by. And catch up with an old Fire Brigade buddy. What would be the odds ? We pull up, get out of the car & hear, "What are you two old bastards doing here?" all the more unusual in that we were talking about him only the night before. Good to see you Steve after all these years.

So home. It's always good when people do things willingly & gladly for you. Even more so when folk do things over & above the call of duty. Like when your stepson & his wife come down to care for their Mum while you have a well earned break. When you come home, you find that not only have they done a superb job of it, but have also had big tidy ups, getting a lot of the little jobs that you haven't had the time, inclination or general energy to do, & your house is that tidy that the cleaner grumps at you complaining that she has nothing to do. It gave me the incentive I needed to get stuck in & finish some sorting that needed to be done as well, with the upshot that just under 200 kg of rubbish went to the dump. There was a good breeze blowing, so I had every intention of round about 4.00 O'Clock to get the washing in & mow the back lawn which was dry enough to do at that point.

We all know what happens with good intentions though, don't we ? Shortly before I was going to haul my sorry ass out of this chair & do it, Jude came in, very obviously in distress. It's hard enough at the best of times to figure out what she needs unless she is using her ipad, but when she is panicking & something is very obviously seriously wrong & I am starting to panic as well, then it becomes next to nigh impossible. We sorted out eventually that some of the gunge that builds up on the roof of her mouth had dislodged & gotten itself into her windpipe. We ended up calling the ambulance, but by the time he got here, we had just about got her right. For all that , we decided that it would be best if she was transported to Hospital. So we spent the rest of the afternoon & part of the evening there while they checked her out & aspirated her mouth. A really great team up there & although it was quite a busy Saturday night, we got looked after fairly promptly & very well . The upshot of it all is that there is now an aspirator on its way over from Waikato, so we can sort problems like this out ourselves. I think that we will be using it on a daily basis rather than the sponges on sticks to clean the crap out of her mouth before it becomes a problem.

Chris phoned tonight. It seems he has been talking to someone at work with a nursing background & she has come up with what seems to be a good suggestion. Listerine apparently produce these little thin squares of mouthwash that dissolve on your tongue & freshen your mouth up. Going to check it out tomorrow. I have a lot of time for Chris. He devotes a lot of time & energy into trying to find ways of making his Mum's life that little bit easier. His wife, Melanie, supports him in this unconditionally. I count myself very fortunate to have the two of them on my side. It just makes my life so much easier. Thanks guys.

It's New Zealand Music month this month. This is what I'm doing for it.


Pretty cool huh ? I'm doing about an hour for each show. Have you got any idea how many songs you have to sort out & practice to fill an hour ? Its a lot. I have been combing You Tube for new takes on some of my old standards & there is plenty to choose from. I have restrung The Beast with a brand of string that I haven't used before, but had recommended to me. They are lovely. The base strings have a wonderful booming sound that I have looked for for years, so I am adapting some of the old standards to accentuate this. I'm also going to jump in at the deep end & do something that I have never done before, namely use my harmonica rack in public. Hopefully, it should go well. Fingers crossed. Also hopefully, I have left enough good songs for the second show. Don't really want to repeat too much.

En Vacance

I've always like that French term for going on holiday. It always seems to promise exotic destinations & activities. Well, I am en vacance in the little Northland town of Kaikohe, with my old Fire Service buddy Hawkeye. In between talking ourselves dry last night, we made vague plans to go fishing & make the pilgrimage to see the Giant Kauri, Tane Mahuta today. Mother nature decreed otherwise. It's pouring with rain & the wind is howling around Ken's snug little cottage like you wouldn't believe. The fire is going, the little dog is curled up at my feet, the whisky is drinkable, the company is good & the books are readable.

I'm quietly relieved that we didn't go today. I think I'm more tired than I have been for a very long time. I had a good 2 hours snooze earlier & may have another later. I took the little dog for a walk this morning as is my usual wont. It's always interesting going for a wander in a different town. Kaikohe is interesting as apparently, it doesn't have a "good" area or a "bad" area. its all mixed in together. For instance, there was a beautifully kept house on one side of the road & an absolute derelict that didn't even have doors on the other. A real social contrast.

Ken has just informed me that according to the local paper. the weather today is about as good as its going to get all week. I'm beginning to have serious doubts as to the veracity of tales told of huge fish & balmy weather. It's probably as well that Ken has a good supply of movies in stock. On a serious note, this time away is making me realise the importance of a battery recharge every now & then in the form of a little selfish time every once in a while, even if it is spent in front of a fire reading & drinking whisky.

The Pharmac Blues

As of the 1st of April,(yeah I know, April Fool, hahahahahaa.... cue hysterical laughter) our beloved Pharmac, arbiter of which pills & potions us lowly peasants are allowed to have dispensed to us either free or at a reduced rate made some quite sweeping changes. It would appear that they have finally woken up to the fact that pharmaceutical companies have been creaming it somewhat at their, (Pharmac's) expense. So as of the 1st of April things have changed. Substantial amounts of drugs have come off the free list or had their subsidy greatly reduced. So are we going to see a decline in the annual dividends paid to the shareholders of the pharmaceutical companies ? Ooohhh nooo dear readers. Guess who is paying ? us poor taxpayers, beneficiaries, old age pensioners & anyone unfortunate to be ill.

One of the things to be affected is Jude's Fortisip. The subsidy is being reduced to the point where the end user will be paying $1.00 per 200 ml bottle. Doesn't sound like much, but thats $10.00 a litre , more than milk & Jude is totally dependent on the stuff put through a PEG tube. We were very lucky. We have an excellent relationship with our pharmacist, so we knew well in advance what was going to happen & had plenty of time to investigate alternatives, which we did. It took not inconsiderable time. Not only on my behalf, but also our pharmacist & our doctor, sourcing acceptable alternatives that were covered still. We got there, to the point where we were initiating moves to get our authority changed. That in itself was going to be a mission as Pharmac's computer in Wanganui is conveniently on the sick list & all new applications have to be handwritten, submitted by fax & can take anything up to 2 weeks to approve. Oh what Fun.

Jude has been having problems with an infection in her stoma, which has been treated with ointments & antibiotics, but we have stopped the anti bi's as they are giving her the runs. Anyway, Sheena, our favorite District Health Nurse, has also been treating it with silver nitrate, probably the most effective of anything. She has also solved our hassles with Fortisip. She has been talking to our hospital dietician, a nice young chap, who informed her that a new directive has been issued stating that anyone who is totally dependent on Fortisip via a PEG for sustanance can, wait for it, still get it on full subsidy. All that has to happen is your GP has to write either "Prescribed condition" or "Bolus fed through a feeding tube" on the script. Talk about round & round in circles of diminishing propensity until you vanish in a puff of smoke up your own fundamental orifice, but alls well that ends well I guess.

Now in other news......

Jude's new toy arrived today. A brand spanking new 16 gig ipad with wifi thats never been booted up. That in itself constituted a problem as we had no instruction book either & Apple are somewhat close chested about promulgating such things on line. Anyway, a call to our local computer store, (Computer Geeks, very helpful folk) got things underway. That & the nice lady from WheelChair Solutions showing me how to turn it on & off got me started. My God, what a process. Lets just say it involves an early start, a packed picnic lunch, a computer, a credit card & an incredible amount of patience.

Anyway, after a few false starts, forgotten passwords & considerable bad language, I was able to present Jude with her new voice. She now has an ipad loaded with a programme called Proloquo, which effectively gives her a voice to talk to people with again. I get the satisfaction of a job well done & seeing the look of happiness on my darling's face. Money can't buy that.

You were always on my mind

I think that one of the hardest aspects of being a caregiver to someone who is terminally ill, is coming to the realisation that no matter how much of yourself that you put in, no matter how much you love, no matter how much you care, you still, in the long run, are not going to win. It is incredibly easy to beat yourself up over the little things. Like when you have just sat down to relax in what you consider to be your time & your darling pages you for something. To be moved a bit in bed, the BIPAP on/off. If you're a caregiver you will know what I mean. Somehow, you find it within yourself to stifle that first burst of annoyance because you have just started a conversation or a game on line, or in my case just sat down for your half hour practice on the guitar. After all, lets be brutally honest here. YOU have chosen to do this. Nobody ever said it was ever going to be easy. On the contrary. Professional caregiving , I guess, must be hard enough, but when all is said & done, the emotional attachment isn't quite the same, no matter how caring & compassionate you might be. Also, you get to go home after 8 hours & be a normal human being.

Caring for a loved one is a full time & very scary commitment. Not only are you responsible for the care & wellbeing of another person & , in my case, their spokesman, as Jude cannot speak, there is the emotional aspect of it as well. You deeply love the person that you are caring for. It's not an easy thing to see them wasting away knowing that no matter how much effort you invest, nothing you can do is going to reverse the situation. Don't get me wrong here, I'm not really wallowing in self pity, or at least I don't think that I am. Although it is always in the back of my mind that, yes, I am going to lose her & no, its not going to be easy, I do know that in my darkest times I can console myself with one thing.

That is, that I am doing the utmost & absolute best that I can for her. No "ifs buts or maybe's" I'm doing the best that I can. I don't have any nursing or palliative care experience other than what I am gaining on the job, but I do have a caring, compassionate & very able team supporting me. That helps a lot. Thanks guys.

Jude decided to come shopping with me yesterday. There were one or two things that she wanted that she couldn't really describe to me, so she came. Its always good taking her for groceries. We put her in her wheelchair, grab one of the special trolleys that clip on the front of the chair & off we go. She sits there like royalty holding the shopping list & points out the stuff that we need as we go. I don't know, but I guess that it helps her to feel useful. Anyway, we had just about finished when we met a lady that we hadn't seen for a number of years. She was visibly shocked when she saw Jude & how much she has deteriorated. Thats OK, but then she proceeded to tell me in a very loud voice how sad it all was & how sorry she felt for me etc etc etc. All the time totally ignoring Jude. Maybe she thought Jude's mental faculties were gone as well. Thats a particularly nasty cross that MND sufferers have to bear. The loss of control in the facial muscles produces a very vacant look. Not so, as we all know, but it's quite annoying when people just talk over the top of her as if she isn't there.

Anyway, I'm going to leave the last word in this post to Willy Nelson. I think he sums the whole thing up well..

Care Giver Blues

I think that Jude & I are starting to get to the hard bit in our journey. I know for certain that Jude is finding day to day things a real struggle & needs more & more help to cope. The down side of this is that I am finding that I have less time for my safety valve outlets. Every day now it seems that I have to think of new ways of organizing my day so that I can get enough "me" time in to get by. The kicker is that at the moment, the worse she gets, the more time I need & the less time I get. Just another of lifes little conundrums to figure out I guess. At least I know now what my problem is & can work on it. Little things, like remembering to give Jude her evening feed before I start beating something to death for myself, so I don't have to stop halfway through mine to do hers.

One major innovation I have come up with is the purchase of a cordless doorchime. The chime bit isn't much bigger than a pack of cigarettes & so fits handily into the pocket of my cargo shorts that I tend to wear. The buzzer bit fits neatly into a soft mobile phone case & hangs on a lanyard around Judes neck. It has a range of give or take, 30 metres, so pretty much works anywhere round the house. The whole set up for under $30.00.

Whisper has found a friend. There is a 6 month old brown male Dachsy halfway along the road that I walk every morning. He's a nice little chap except that his head & nose seem too big for the rest of him. maybe he will grow in to it. Just like I guess I will grow in to the way things are now.

Loving her was easier.

Well, Cory & Rob have gone & are safely home in Texas. I couldnt play for them as the tail piece on my guitar broke. Its now replaced & my trusty old Eko is all better & tuned now. It took a couple of days. You dont just throw the strings onto a 12 string & wind em up & hope to play it, specially one as old as mine. Like all of us, they take a little while to settle in & take up the load. You can't hurry it. Its better to leave it sit over night a note or so lower than concert pitch. You can hear it creaking while you put the load on.

The next day sees you right to hook up the tuner & set it up properly. There is a timeworn joke that goes like this.......

How long does it take to tune a 12 string ?

Nobody knows because its never been done.

I will admit it does take a while & unless you have a good ear, (I don't) then a fitted pickup & an electronic tuner are pretty much a must. You know when you have it right, because the instrument comes alive, resonating beautifully. Would you guess that I'm a fanatic when it comes to 12's? I've only been playing one for 45 years, so yeah I guess.

Anyway, I haven't touched it in a while & I have opened my big trap & agreed to do a lunchtime recital at our local library sometime in May as part of New Zealand music month. I also have vague promises of a couple of other gigs round & about the place. So, today being a bit of a too much of nothing sort of day & having already cleaned all the paper & crap out of the garage, I decided to set up a practice corner in the garage & start dedicating at least half an hour a day to practice. So, I dug out my music etc., & started working my way through my music. I was going great guns too until I flipped over to this song & started playing it...

Parting is such sweet sorrow

For the past three weeks, we have had the pleasure of Cory & Rob's company in this country. They are from Texas & were here for a well earned honeymoon. We haven't had the pleasure of their company in our house for very long, 24 hours on their way in & a couple of days on the way out, but just long enough. Just long enough to make a friendship that I am sure will last a lifetime. Just long enough that, unusually for me, I shed tears on our parting this afternoon. Just long enough that the house feels very empty without them here. Come back soon guys. You were here just long enough to make me feel that I have known you all my life. I love you both dearly.

For whom the bell tolls

I got some very sad news today. A lady that we met while we were on holiday has just passed away. We didn't really know her at all. She was pretty much in the same boat as Jude in as much as she couldn't speak either, so they just sorta sat there & smiled at each other a lot. To complicate matters, she also had early onset Alzheimers. We found out a bit about her from her husband though. She was a school teacher as well as a music teacher, so all in all, a very clever & intelligent lady. Now she's gone. Its very sad. You could tell that she was a lovely & dignified sort of a person. Rest in peace, Judith Angus. Life treated you unfairly. May you be at peace where you are now.

I don't enjoy receiving news like that. it reminds me somewhat uncomfortably of the uncomfortable inevitability of this dreadful disease that we are facing. There is no get out of jail free card, no last minute miracle cure & no hidden exit. We don't like looking at that. We know where we are heading. Every day brings something new pointing the bony finger in the only direction that it can point, be it having to spend more time each day on the BIPAP machine, sleeping more, or getting more unsteady on her feet. Not only does it make life harder for her, it also limits the amount that she can do every day, so I am learning a new skill. That of organising time out of the house to achieve maximum results. We have the library to a fine art now. I slowly push her down one or the other of the aisles. She points out books, I retrieve, she peruses & decides if its readable or not. Meantime I keep an eye open for myself & books on the higher shelves that she can't see because of her inability to lift her head very far now.

She gets a lovely massage Mondays & Fridays, they help her a lot. We have asked DSL if we can have our carer in to shower & dress her 7 days a week now. I could carry on doing it, but I feel awkward. I know that Jude can feel that, but bless her she doesn't say a word. So its easier to let Colleen do it. Its what she does for a living & she does it very well. Add to that the fact that she has been a personal friend for a lot of years & you get the idea. Depending on what time I wake up, I get an hour or so in the morning to puddle on line without having to keep an ear open for Jude needing help. 3 claps means she needs help. Anything else is approval of something on TV or in a book or what ever. Anyway, I usually wait till she is out of bed, gone to the loo & settled in front of one or the other of the tellies. She hasn't said anything, but I think the TV in the bedroom might be a little high for her. Something to check on. Once she has settled, the little dog & I go for our morning walk. I have found a definite benefit to waiting until I get back before I have my breakfast. I don't feel so sluggish & an empty stomach helps the thought processes.

The rest of the day basically revolves around me trying to do the non noisy stuff while she is sleeping. I can generally get a nap for an hour or two in the early afternoon while she is watching her home renovation & cooking shows. Strangely, at this time of year anyway, I actually look forward to bringing in the washing. It's very quiet & peaceful in the back yard. All you can hear is the Tuis Pigeons & starlings all having their late afternoon chats. All accompanied by a little dog happily munching on her bone. I buy her beef soup bones. They have a lot of meat on them & make a pleasant change for her from chicken necks. I used to just haul the washing off the line, dump it in the basket, then maybe sort & fold it while watching TV in the evening, but I have found a certain enjoyment in folding sun crisp washing & sorting it as I go. less crinkles & wrinkles as well.

So, here I am at 1100 pm, at the keyboard with my post Jude bed time scotch on the rocks. It helps settle me for the night. That & a 5 minute walk so that the little dog can have her last potty stop of the day before she curls up by my head, gives a couple of happy piggy little grunts, carefully puts her head on my shoulder, I suspect to try & make sense of what is written in the book I am reading. It never fails to amaze me. She sleeps not 6 inches away from me all night & yet in the morning we have a mad gallop round the lounge with enough enthusiasm that you could be forgiven for thinking she had been locked in a shed at the bottom of the garden all night. She has boundless enthusiasm for what ever she does, be it going for a walk, going out in the wagon or curling up for a nap with me. I honestly don't know where I would be mentally without her, she is such a joy to have about.

So there we are. Judith Angus has gone on. She is free of the indignity of having to have other people having to care for a body that increasingly won't do what the brain tells it to do. I can only imagine what that must be like. I have an inkling, because I live with it & see the frustration on Jude's face when she can't even do simple tasks like pull up her own trousers, or watch people sit down & eat. Its not a nice disease.

Magnolia, you sweet thing

I did a double take when I walked past the internal garage door late this afternoon. The reason for this is that my next door neighbor finally lost patience with having to sweep out his garage every morning. You see, he operates a sign writing business from his garage & the detritus from his Magnolia tree is not very conducive to attaching decal type signs to vehicles, which 90% of his trade is.

To be honest, I'm not really upset about losing the tree. Yes, Magnolia's are beautiful, but only if they are in the middle of a field, some considerable distance from the nearest house. When you have a 50 footer that is not much more than 10 feet away from 2 houses, its a pain. The branches, until I pruned them have rubbed the paint off a substantial part of my garage roof. The leaves don't exactly help when they clog the guttering up most of the time either. So, I'm not sad to see it go. I won't have to sweep the courtyard so often either. What I will have to do though is split up a whole heap of firewood, because I scored the trunk. Whats even better is that its cut to convenient length & has been stacked on my side of the fence nice & close to my wood bin. I don't know how good it will be, but I have plenty of Pin Oak & kiln dried pine to mix it with, so it should be fine. It will all keep Jude warm for the winter anyway, which is all that really matters to me.

We are now giving Jude 2 different tablets for different reasons via her peg tube. One lot we dissolve & put through at the start of her morning meal. The other, Amitryptelene, we give her as she goes to bed at night. The early one is no problem as it all gets flushed through with her feed, but the evening one has taken a bit of sorting. See, the Amytrip doesn't dissolve all that readily, so we have taken to putting it into about half a syringe full of water at least an hour previous to her bed time. If you draw air in as well, it allows you to give it a vigorous shake to dissolve it properly when you are ready to administer it. The other thing that I figured out today & did for the first time tonight, is put enough air into the syringe to flush all the liquid through the PEG tube. Common sense I know, but it took me a few days of worrying about her not getting a full dose to come up with it.

I'm glad it's not just me. I have been really worried about a lack of energy & a general lethargy for the last week or so. I've wondered at it's cause. Depression, the weather, altered medication have all crossed my mind. It's been really bad. All I have wanted to do is sleep. So I have. Nothing has changed but at least I'm not alone. Jude's caregiver told us that she feels the same way as well. If I can summon the will power & actually drag myself to do something, I'm OK, but it is really difficult to even summon the energy to take the dog for a walk in the mornings. That I do grit my teeth & do. She gets really disappointed if I don't & it's good for my health as well. Or so the Doctor tells me anyway.

The air that I breathe

Well, its been an eventful week. As well as our visitors on the weekend, we had an appointment with the Neurologist on Monday. We got given some news there that I am going to have to pass on to Judes kids, so forgive me if I don't share it here until I've told them. Needless to say I'm not looking forward to doing it & it is, at the moment added stress that I don't need.

Jude is starting to become more & more reliant on her BIPAP, both during the day & also at night. Physically, she is getting very unsteady on her feet, can't dress herself & can't even roll on to her side when she goes to bed. We are, I think, both starting to get a little scared. WE do have very good help around us, but it's not there 24/7. Most times , its just Her & I. I'm hoping that cooler weather will bring some relief for us both, but I'm not holding my breath. Neither is Jude. She is actually having difficulty getting enough air into her system anyway without interrupting the flow in any way.

Hands Across The Water.

OK, so I used that caption on my Face Book page as well, but I really can't think of a more appropriate title. We have had the pleasure of the company of international guests for a very hectic 24 hours.

Not just any international guests, mind you. We had Cory & her husband Rob with us. Cory is the niece of my dear Texan friend Kathy, with whom I have corresponded in one form or another for the last 45 odd years. Cory & Rob are lovely people. Right from the first hug across the barrier at the airport, I knew we were going to get along fine. I think the only time the 3 of us stopped talking was when we finally collapsed exhausted into bed last night. We had a blast. I took them for a drive up the Kauarenga Valley & stopped for a swim at what is, in my estimation, one of the most beautiful fresh water swimming holes in New Zealand, complete with a cliff to jump off at different heights. Rob, to his credit, did launch himself from the mid range ledge. Cory & I discovered pressing engagements at the other end of the pool.

The nicest thing about it , I think, is that for just a little while, I could relax, & do something normal in good company. Sadly, Hoffman's Pool is out of the question for Jude now as it is a fairly rough track to get there. Lying back in the water brought back some lovely memories of times past when we used to go there to relax. Sadly, our time together had to end all too soon as they had reservations to fly to Queenstown to do some tramping, but they will be back for a few days at the end of their trip, so hopefully we will be able to spend some time on the water & include Jude this time, so , for now, its Haere Ra, Haere Ra & Haere Mai Haere mai.

I'm getting concerned for myself. I'm starting to find simple pleasures in life out of such mundane things as hanging out the washing & doing the odd spot of gardening. I've thought about this a fair bit & I think that the main factor is time. When you work, things like gardening & washing are chores that you rush through so that you can get on with the main business of relaxing in your leisure hours. I don't have that problem now. Our back yard is a quiet & gentle place where mostly all you hear is bird song. While I'm there, the little dog is generally busy snuffling round, either very carefully picking flowers or rosehips & eating them, hunting for God knows what in the garden, or lying down crunching a bone. Either way, its relaxing. If I'm weeding, which to tell the truth I really don't enjoy, she is right there with me investigating every clump of grass that comes out. I enjoy pruning the roses now as well. It gave me great satisfaction tonight to bring in a modest bunch of red & white roses to put in a vase for her to enjoy. I know she loves them so.

Healthwise, she has stabilised somewhat; I think the cooler weather is helping a bit. She even managed the trip to the airport & back without too many visible signs of distress, although I must admit that I did enjoy my afternoon snooze as well. She has an appointment with the neurologist tomorrow afternoon, the first in a while. I think that traumatic as it has been, she has stabilised at the next level of her illness & I guess we will both just have to get used to it. It's not easy though.....

The Nutty Gritty of it all

Its absolutely dreadful what has happened in Christchurch. It's very hard to get your head around the mortality of it all & just how ephemeral human life is. My heart does really go out to the folk in Christchurch. I will admit that I have got to the point where I prefer not to watch the news any more. It all has a depressing sameness about it all.

Anyway, with all due respects, I feel at the moment that I have enough problems on my own plate at the moment. Things are starting to get a bit scary for both of us. Jude is starting to have serious problems with her breathing & is also getting very frail. I'm having problems dealing with it. Watching the one you love most in the world fighting for breath with a look of genuine panic in her eyes because she can't express herself has to be the absolute pits when it comes to experiences. Closely followed of course by the feeling of powerlessness when you can't do anything to help her.

At the beginning of all this, I blithely assured myself that I would find the strength to cope with everything as it came to pass. but I'm finding it more & more difficult to get by each day. One of the hardest things I think is that at a time that is proving to be difficult, a dear friend & confidante has left the country. I can still talk to her on line, but it isn't the same as a sit down over a cup of coffee. On the bright side, we are anticipating the arrival of some new Friends from the states on Saturday. Also today, I made a good contact to get me out doing a few music gigs again. I have the room in the garage now to set up my gear, so all I have to do now is get motivated enough to not only do it, but also get my head in the right space to sit & practice for half an hour a day. Watch this space.

Hot nights feeling shitty

It's still far too hot. At least at night there is a vestige of cooler weather, with the faintest hint of a breeze when I walk the dog late at night. Even Fattums has condescended to come on the odd occasion, much to the little Whippy Dog's concern. Last night was dreadful. For one, the dog got it into her head that she had to sleep between my pillows. Yes she does sleep on the bed. No I'm neither apologising for it or making excuses. The worst thing about hot nights is that it makes it even harder for Jude than usual. As it is she is quite noisy at night, but I have mostly gotten used to it, but the heat makes it a lot harder than usual for her. She is finding it really difficult even though she doesnt say anything. I can tell that it's doing her hard, because she has noticeably less energy during the day. The BIPAP during the day is working well. We went to see the Respiratory Specialist on Thursday. Struck a different guy than we have had in the past with a new take on stuff. He has prescribed an asthma inhaler for her. Not because of any help with her lungs, but because it helps dry her mouth out. The irony is that she is now on 3 different drugs, all prescribed because of their side effects.

I'm living in a state of excitement & expectation at the moment. I have a dear friend in Texas who, though we have written to each other since our early teens, have never met. her niece & her husband though, are coming to New Zealand next Saturday & are coming to stay with us for a few days. Can hardly wait.

I guess I will have to clean up a bit though. I have left sweeping the courtyard as the Magnolia tree that causes 90% of the mess was supposed to be coming down last week. Not before time either. Although they are very beautiful, the only place they should be grown is out in the middle of a paddock. Not where their branches overhang the roofs & yards of 2 houses. I won't be sorry to see it go. My vege garden is amazing me. The tomatoes have now grown higher than the stakes, with some beautiful trusses of fruit forming. I have pruned all the lower foliage right back in an effort to get as much sunshine onto the fruit as I can. I'm hopeful that I will get at least some fruit off them before winter sets in. Everything else, including the weeds is growing as well. I do pick away at it it most days, so it doesn't look too bad. That is if you squint & look over your left shoulder....

Summer Nights

Can somebody please turn the thermostat down ? It's way too hot & sticky for both of us. Jude especially is having a lot of difficulty with it, needing both the fan & the evaporative cooler going all day to cope. Even with them, she is still getting a lot of phlegm on her lungs. We have tried Robitussin Chesty, but that doesn't seem to help. On another MN sufferers blog, we have found out that he uses his BIPAP for a couple of hours before bed, which helps break down the stringy bits in his chest & makes it easier for him to get rid of it, so we have tried that & yes, it works. The other thing that is helping is a nightly Amitryptelene tablet. It seems to help break down the phlegm & the soporific effect also helps her get a good nights sleep. Just remember, that if you are putting it through a PEG tube, that it needs a good half hour or more to dissolve in water. What I do is put the tablet into the syringe, half fill it with water & sit it upside down in a glass so it doesn't run out.

The garden is thriving. So are the weeds. I'm hopeful that with light showers forecast for today that it will get cool enough for me to be able to get out & start emptying out some of the pots around that only have weeds in them. My ultimate aim is to get round the shade house tidied sufficiently so that Jude can get out there in her wheelchair & potter round a bit if she wants to. There must be something wrong with me. I'm actually starting to enjoy doing a bit of gardening...

RIP, Gary Moore

Another one for the great Blues Band in the sky. We gonna miss you mate...