Culture Vulture

. Dunedin never fails to surprise me with its rich diversity & vibrancy. Today, after we had wrung the last few bargains from the post Xmas sales, Ian & Leasa decided that a touch of culture would do us all the world of good, so we headed for the Municipal Art gallery via the Scottish shop. We did this so that I could replace the somewhat tattered & bedraggled Scottish flag on Sherman's aerial, that I had purchased last time we were here. While I was in there I also bought a "Clan Clootie," which, to the uninitiated, is a very good quality linen tea towel with my clan crest on that I intend to get framed once I get home.

So, onwards to the Art Gallery. I must admit to being pleasantly surprised. Situated in the middle of the hubbub & activity of The Octagon, it provides a haven of peace & contemplative tranquillity & a surprisingly eclectic selection of work. I was most surprised & pleased to find a work there that I had hung in the Gisborne Museum & Art gallery during my tenure as handyman/carpenter. It was like meeting an old friend. It was a piece that had travelled with the Benson & Hedges Art Award road show. Apart from that, the works on display showed an amazing depth & array, from the odd Constable or two, through to local semi folk art to a very modern display featuring a "Black" them, which I really failed to grasp the essence of.

There was a wonderful collection of photographic prints by an artist called Fiona Pardington, & my favourite exhibition of all , a selection of Japanese woodcut prints with a Kabuki theme. The depth of detail in these is absolutely stunning. All this & free entry. Absolutely wonderful.

After that it was back to reality in the Meridian mall for lunch. Hustly bustly mayhem at best, followed by a visit to JB Hifi, which led to a round of self castigation over having left my brother in law's most generous gift card behind. I did come away however, with Dylans latest disc, which updaates my collection, & a DVD of Dylan's performances at the Newport folk festival in the 60's. Home for a snooze & then out for Domino Pizza's for tea. All in all, a lovely way to spend my last day with Ian & Leasa. Tomorrow, the little dog & I are heading for Invercargill to spend New Years Eve with Madz. Can't wait

Down South

Well here I am as the saying goes, Down South. It was a good trip if a little longer than is totally comfortable for old bones & small dogs , but we made it. I have been staying with Ian, Leasa & Conaire these last 2 weeks & it has been wonderful. Conaire & Whispa have been getting to know each other & Conaire is learning that Whispa is not just another stuffed toy & Whispa is learning that little girls aren't really as scary as they first seem. All in all a satisfactory arrangement.

One of the nice things I find about being in a a new town is my daily walks. There is always something new to see, even if you have been in the area before, especially when you are walking with a dog & a 2 year old. In this case, a lovely old concrete building that used to be a family neighborhood 4 square store. It intrigued me that much that I have made 3 visits back there to try & get the light that I wanted. For better or worse, here are the results....





















































The las t photo was taken by a very kind lady & her daughter that just happened to be walking past... Gotta love Dunedin dont ya?????

Back on the road.

My two sons God bless 'em, decided that it wasn't a good thing for me to spend Xmas on my own, a sentiment that I whole heartedly approve of. I didn't want to fly down, as that would present complications with my little dog, who I didnt want to leave behind. So I decided to drive down. Ian decided that he didn't want me driving down on my own, so he flew up & drove down with me. I'm glad he did. It meant that I was able to show him where I scattered his Poppies ashes on the top of Mt Messenger. It also allowed him to catch up with an old school friend in Hawera. I didn't sleep well that night. I didnt put the bung back in the air bed & me & the little dog ended up cast on our backs in the middle like a couple of old fly blown ewes.

Catching up with Rob & Heather in Wellington was great, made even better by the fact that Rob & Ian spent the evening chatting away as if they had known each other all their lives. A 2.30 AM crossing coupled with a lusty blustery Southerly made sure that we didn't get a lot of sleep in spite of having comfortable warm bunks in a cabin. So it was a couple of tired wee lads & a very much relieved little dog that disembarked at Picton & set off for Dunedin. it was a tough drive but we did it in a day, much to the relief of all involved including the dog.

So here we are in Dunedin having a wonderful time. So far, I have had what is rapidly becoming a tradition, namely a tattoo followed by a kebab. It's a beaut. I f you want to see it go to my facebook page. I went fishing yesterday with the father of one of Leasa's friends. It was really a cae of the blind leading the blind, as he had only had his boat out 2 or 3 times before & was actually relying on me to show him where the fish were. He did catch one small Blue Cod & was very happy, as it was the first one he had caught out of his new boat. We also got to see heaaps of seals swimming in the water out by the point & some beautiful scenery as well. Its been over a year since I have been out on the water & the Viking side of my psyche is well appeased. I have also been enjoying some really relaxing time with my family. It is so good not to have anything to worry about except what clothes to put on.Iian & Leasa & Conaire have been wonderful to me in so far as they have provided a stress free environment for me to relax, refresh & recharge.

As I have been sitting writing this, we have experienced the second of 2 earth tremors that Christchurch has experienced today. I was asleep for the first, but Ian felt it. Hey enough already. Haven't they had enough in a year without doing this to them so close to Xmas. My heart goes out to them.

So, I'm looking forward to Xmas. Spending time with my family offers the promise of regeneration, recharge & a fresh outlook on life. New Years Eve, I will drive down to Inver argill, (yes folks, very carefully) with my little dog & spend a night or two at Madz's place. Quite looking forward to getting po faced with her & playing cards for the evening to see in the New Year. Then its back to spend a week or two with my other son, Sean & his family, then the start of the long trek home. But even that will be a pleasure as life changing events are starting to unfold for me in a most joyous way. I have had enough sadness & sorrow in my life the last few years & things are happening that promise a whole new life.

So, Merry Xmas & a Happy New Year to you all. May you celebrate & enjoy it in what ever fashion you wish. May your fondest dream for the new Year be the worst thing that happens to you &, Most importantly, may the skin of your bum never cover the head of a banjo...

A brave new world

So said Aldous Huxley & the Preacher in War of the Worlds. It's a little bit scary being back in the world without Jude to cower behind. All of a sudden, I basically have nobody to please bar myself. The invites are starting to come in & I catch myself starting to say, "No sorry I can't because....." then I realise I can. I can because at the moment I'm not bumping around in trucks till all hours, nor do I have an ailing wife to tend any more. It's a strange feeling, but I guess I will get used to it.

I'm now actually looking forward to returning home from Dunedin to start forging a life for myself. Exactly what that life will be or who it will be with I have no idea at this stage. Thats the exciting bit...

Goin' Down

Tuesday was a down day. I was doing OK. Right up to the point where the undertaker dropped by with some more cards, Jude's ashes & the funeral bill. Would have been nice if they phoned first, but just dropping in set me back to a point I thought I had passed. Guess I'm not so smart as I thought I was. I can see I'm going to be doing a lot of gardening. It seems to be a refuge for me when things get tough.

Last night the couriers came & collected all the equipment that the system were so unstinting in providing to help make Jude's life a little bit more bearable. I now have my workshop & lounge back. The place seems empty now. Can anybody tell me what company to call to come & take away this horrible hollow feeling away that I have in my stomach. All these things are driving home the awful awful finality of death. I'm never gonna see my darling in this lifetime again. OK, she wasn't really up to much the last few months, but at least I could go put my head on her shoulder & have a good howl. She was always good for that. The garden got another hammering last night as well. Tigs has finally started putting in an appearance for things other than food. She came to me for a smoodge about 2.00 this morning which was good for both of us.

On the upside, I'm off down to Dunedin soon for Xmas with my sons & their families, I have the steadfast & unfailing love of my little dog & WINZ were incredibly helpful this morning. As the Beatles said, "Oblidee oblidah life goes on."

Thoughts on death, dying & grief

I picked my first green bean from my vines today. I just ate it straight from the vine. I have a lot of stuff that is going to be ready while I'm away sadly. My tomatoes are fruiting nicely & my first crop of baby carrots are not far off ready. My globe artichokes have 3 fruit, ( I think you call them that ) coming along nicely. There is a lesson from nature there if you care to look for it.

You see, the last few weeks I have been bound up in the absolute misery that my darlings life had become. She was in a lot of pain up until she started taking morphine & on occasion even that didn't help. It really was a blessing when she died. She went peacefully, with her son & his wife holding her hand. The subsequent mourning period & funeral went in a blur, so it's only really today that I have been able to take stock.

Oh, I have done a little. My neighbor brought over a lovely red rose called Eternal Love. I planted it on the morning of the funeral in what is going to be my remembrance garden. It's a good place to talk to Jude while I do a bit of weeding etc. There were also 3 rather nice flowering bulbs in a pot that I separated & planted there as well in the rain yesterday along with some catnip & oregano. They all seem to be doing OK.

So, I guess the lesson is this. No matter what our personal tragedies may be, nature just keeps on going in its own lusty rambunctious way. It doesnt wait for us, it just keeps right on keeping on. There are those who think I should still be grieving, & learning to live with it. I have done with my grieving. I grieved for my darling watching her helpless, racked with pain & unable to indicate what was wrong. I grieved at the dreadful injustice I perceived of her having the damn disease in the first place. I grieved for a lot of things, some very personal.

So death brings resolution. It brings it in a very final way. I have seen violent death. I have cheated death for 10 years by helping save someone with CPR. I have seen my darling dead under traumatic circumstance revived by an incredibly dedicated medical staff. And I have seen my Darling die very peacefully at home in her bed. That was a wonderful thing to see, & I don't think that anybody who has seen a death like that can dispute that it is a lovely thing to see.

So what am I trying to say ? I suppose that it is this:- don't expect me to go round wearing sackcloth & ashes because I wont be. Do expect me to be picking up the threads of a life that has been on hold for the last 4 years or so. Seeing my darling at rest & pain free has lifted a great weight from my shoulders. Yes I cried. I grieved her passing bitterly, but that is right & fitting to do so. I will carry her in my heart forever, but I will continue my life proud in the knowledge that I have done the best I could for her. No ifs, no buts, just the best I could. Till we meet again my darling

My rambling pal is dead & gone

she's left me here to ramble on
if when we die, we go somewhere
bet you a dime, she's rambling there.

At round 08.30 hrs yesterday morning, quietly peacefully, at home in bed surrounded by her family. Do not grieve her passing celebrate her life, her gentle spirit, her giving nature, her love of life, music, flowers, people, cooking & gardening & last but not least me.

She went into the field of battle knowing that it was going to be a long drawn out campaign that she had no hope whatsoever of winning, but she went into it without hesitation or complaint, fought a no quarter asked or given fight & has retired from the field of battle with her flag still flying, her spirit unbroken and her love undiminished.

Judith Ellen Leslie, I salute you as a bold & true warrior. I have loved you from the day I met you & love you still... Fly in peace my beloved You deserve it...

The Long & Winding Road

Jude has nearly reached the end of her particular long & winding road. Those of you who know her will know what an amazing battle she has fought & what a long & winding road we both have walked. She is at home & at peace now just waiting for the door to open. You my regular local readers are most welcome to drop round & spend a little time talking to her. I know she loves you all. If you are inclined, please say a prayer for those of us that can't yet follow her down the next bit of her journey. I know she will be surrounded with flowers & love when she passes.. With love, James

Down by the river

Years ago, when Jude & I hadn't been together all that long, & we were both doing shift work, me in the Fire Service & her in the Comms section at the International Airport, on the rare days we had off together, we used to take time out. We would stop at the local bottle shop, get a nice bottle of wine & head for Western Springs. As the name implies, there is a natural spring there that used to be the water supply for Auckland. These days, its a rather lovely reserve that backs on to the zoo with a proliferation of bird life, mainly water fowl.

We would stop at The Saigon Bakery across the road & get lunch, generally pork & egg turnovers & the most beautiful filled rolls made with the beautiful crisp French style bread that only the Vietnamese seem to be able to make. By the entrance, there was always a rack, with brown paper bags full to overflowing with stale (By their standards) bread. Lunch, wine & duckfood safely in hand we would wander off round through the meandering paths around the lake. Not for us the clamoring yammering ducks geese & swans that would trample over their little ones in an effort to gorge themselves & to hell with their babies.

We found this tranquil little clearing way round the back of the lake, where if you sat quietly on the grass & ate your lunch, you were rewarded with a family of very shy & cautious Pukekos that would tentatively poke their heads out of the reeds around the clearing. If you were patient, they would come right up to you & take the bread very carefully from your fingers, a rare privilege to experience. But would they bolt it down & clamour for more ? Not on your life. They would walk back to the reeds, very carefully remove the morsel from their beaks with one of their spiny red feet & gently feed their little ones with it, who had obviously been told very firmly by Mum to "Stay exactly where you have been left or else !" Only when they had sated the little ones hunger would they proceed to eat their own fill.

We swapped our trusty small wheeled wheelchair for a conventional one last week. Jude's general condition & the weather meant that we didn't get a chance to road test it until the week end, so we headed of for the reserve at the riverside well within leisurely strolling distance, with a bag of stale bread & the little dog plodding dutifully beside. The new chair is much easier to manage & we arrived there, to the delight of the ducks, in fine shape. There is a little picnic table there in the shade of a tree, so I parked her wheelchair so that I could sit beside her with my arm around her & feed the ducks. I happened to look across at her to see tears streaming down her face. My face was wet as well. I said to her, "Are you remembering our days at The Springs as well ?" She nodded. We both sat there & cried for days gone. Whispa broke the spell by making one of her rare sallies after the the ducks from her lair under the table. By that time all the bread was gone, so reluctantly, we set course for home.

Can I smell my Lilacs please ?

Jude as I guess you know, before this accursed illness, was an avid & loving gardener. I'm doing my best to look after her beloved plants, but its an uphill battle. One of her most prized plants is a Lilac tree that in spite of my worst efforts so far, ( I haven't got to that garden yet & the base of it is smothered with Wandering Jew & that dreadful sticky creeper,) is an absolute picture of blossom. Colleen, our care giver, invades the garden every so often & makes up a vase full of flowers & puts it where Jude can see it from her chair in the lounge. The current bunch, which is in a beautiful light green glass vase that was one of my Mum's wedding presents, consists of some of her early roses with some of her precious Lilac.

Anyway, tonight we were sitting watching TV tonight & i saw her typing away on her Ipod. When she held it up, I read, "Can I smell my Lilacs please ?" I got up, went & got the vase for her & held it so that she could smell it. I must admit that the smell of Lilac in the evening is something to be treasured. She sat there inhaling the fragrance with tears streaming down her face. It struck me that it was so incredibly sad to have the ability to get up, walk outside & bury your face in fragrant blossom taken away from you. I held it there as long as she wanted then put it back on the coffee table. I must admit to a surreptitious wiping of my own eyes as well.

Our power company sent us a letter to inform us that they were going to be cutting our power for 5 hours on the 17th. of this month for maintainance, & if this presented a problem, to contact them. So I did, naively expecting them to front with a generator, but no. Their best suggestion was to go somewhere there was power. I nearly suggested somewhere THEY could go, but kept my cool. So I got to thinking. What would happen if we did have a major power outage like the one not so long ago that lasted 3 days ? So I am currently searching Trade Me for a 230 volt generator. There are quite a few there at the moment. Not surprisingly, a lot from Christchurch.

I went to the doctors today with a list. Most of which was for Jude. her current pain relief regime hasn't been doing its job lately, so I figured a review was in order. The acquisition of a rather ingenious pill crusher has opened up the range of medications substantially, so we have had major changes. Hopefully tonight will tell. She has gone straight off to sleep tonight without her usual 2 or 3 requests for suction, which is very hopeful. Maybe a good night's sleep is in the offing. God knows we both need it....

Thoughts on cross country wheelchair racing

It should be made an Olympic sport... No, really, I'm serious. There is a surprisingly high level of fitness required just to push a bloody chair along a footpath. I should explain. It was so nice yesterday, I asked Jude if she would like to go for a walk. She would, so we did. All the way down to the reserve I usually walk to & back. I was feeling it muchly by the time we got back. You see, I have found out that footpaths have a very gentle slope towards the road & as chairs have castor front wheels, a certain amount of pressure is required to keep the chair on the straight & narrow. I felt like I had had a full body workout by the time I got home, but Jude enjoyed the outing even though she was too tired for her lunch time feed. Apparently, its OK for her to do that every once in a while, so it was a reasonable trade off I thought.

Today, her best friend Di phoned to see if she wanted to go for a walk. Di is always good value. She is an old Patchwork friend of Jude's, a very talented artist, a loyal friend to both of us & a sensible straight talking lady. As she is somewhat older , we loaded Jude into the powered chair. her self confidence has taken a bit of a battering, so she asked me if I would come along too. Just as well. I have noticed that her right arm is getting very weak, but I didn't realise how much. It's now next to impossible for her to operate the joystick with it. I checked & it was an easy thing to swap it to the left hand side, but even though she has a little more use of her left hand still, it wasn't easy for her. Well, you have surely tried to do things with your off hand & you must know how difficult it is. It ended up with her doing what Di laughingly called donuts on the foot path. It ended with me driving the chair home for her. Once again, she was that tired she skipped a meal.

I know there is a variety of joysticks available for her chair but we need to think very seriously as to if it is actually worthwhile to keep it here. For the little bit she goes out. I think a conventional chair may be easier to manageI need to talk to the occupational therapist to see if a chair with bigger wheels might be easier to manage. The other thing worthy of consideration is the possibility that the outings may not be worth the toll it takes on her in the form of exhaustion & missed meals.

Spring time is always a time of hope & growth. All the plants & seeds that I have planted have germinated despite my hamfisted agricultural efforts. We have the Webb Ellice Trophy safely within our grasp despite, what to me, was a somewhat lacklustre game despite the nail biting second half, The oil recovery from the MV Rena is going well & the weather is holding off, the weather is lovely at the moment & the washing is coming in from the line with that sweet fresh smell that only a sunny day & a gentle breeze can give & I'm making headway with the gardens. Surely a time for renewed hope & optimism. I'm certain that if I tell myself that enough I will end up believing it.

They shoot horses don't they ?

I went to the Doctors today. You see, some years ago while in the throes of a mid life crisis, I bought a motor bike. Not a great ravening beast of a Harley, but a modest Honda 25o. I rode one for a while when I was younger, so I guess it was Glory Days. Anyway, the inevitable happened & I fell off. Not at any great speed, about 10 km/h in loose metal to be exact. When I went down, my left foot took the weight of the bike care of the chain sprocket landing on it. I broke a couple of bones in my foot. My first experience of plaster was not a happy one.

Anyway, it's sore again. Quite markedly so. Hence the visit to the Dr. He's from Colorado,. hence the allusion to horses. He reckons its probably injury related arthritis & has prescribed accordingly. This is on top of things like Judes illness & my Mum in a vegitative state due to advanced senile dementia. About 4 years ago, she had to have one of her little toes amputated due to cancer. I was told at the time there was a possibility that it may have spread. Apparently it has. The home phoned the other day to tell me that she has a lump in her groin. So much for her dying peacefully in her sleep. I have made a conscious decision not to go & see her any more, because it is so upsetting & I need my energy & emotional strength to care for Jude. That doesn't mean I don't love my Mum any more, I do, but the dried up little husk that I sit & watch sleep for half an hour really isn't my Mum any more. I don't know where my Mum is. I wish I did. I love her dearly still & find the thought of her dying of cancer is one that I find very distressing.

All this makes it just that little bit harder to get through every day, but I did get at least one bit of good news:- my blood pressure is a very healthy 120 over 80. The pills I take for that go a fair way towards that, but its good news none the less. I hope that I get some good news soon. I don't think I can deal with a lot more bad news.

Progress I guess

It's strange when you think about the word progress. It can mean so many things. In our own particular case, it rests with having a health care system that open handedly dishes out equipment to make our lives easier. I did a mental inventory yesterday. Aside from providing Fortisip, which is literally Jude's life sustainer these days we have, A BIPAP machine, a suction machine, a hospital bed, a motorised wheelchair, an ordinary wheelchair, two commode chairs, one with wheels, one not, a powered patient lifter, a pressure free topper pad for the bed, a transfer seat for the bath (soon to go) & access to a supply of monthly consumables that Jude needs to make her life comfortable. We also have, funded by ourselves, a walk in wet area shower, which makes Jude's life a lot easier. We have a care giver that showers & dresses Jude twice a day & a cleaner that comes in twice a week to give the house a clean up, because as you well know, real men don't do vacuuming.

I'm extremely grateful for all this help. its a double edged sword though. By providing all this gear, it means that Jude stays home & frees up bed space in either a home or a hospital & the staff needed to care for her . That's OK though. There is no way Jude will ever be going in to a home.

Still, I can't help but think of other areas that progress would be nice in:- A miracle cure for MND. Hearing my darling say , "I love you" again. Taking her out for dinner. Sitting in the boat in the middle of the Gulf reeling snapper in. Watching her enjoy her garden again. I could go on, but whats the point. So many things we have both irredeemably lost, yet so much we have both found because of this cursed illness. We have found love & strength that I don't think either of us dreamed possible. I personally am learning a care & compassion that I never thought possible & I am learning a huge respect for the strength & determination that Jude has.

That , I guess, is certainly progress beyond price.

Message for Deirdre

I found you on Facebook, but you haven't got an add friends button on your page. I would very much like to add you to my list of friends. If you are happy with this, I am James Leslie, Thames new zealand. looking forward to hearing from you. For some reason, your setup for comments wont let me post comments on your blog.. Take care , James

Tears & Fears

It's Jude's birthday on Monday. She is basically getting a 3 day birthday out of it. Today, her 2 sons came down to see her, one being able to stay the night, one not. Chris & Mel, as they always do, made a huge fuss of her with flowers, some beautiful sarongs as a present & a lovely birthday cake, which sadly she can't eat. I couldn't sing "Happy Birthday" for her. The tears just welled up in my eyes, but the others did & she loved it. Later on, something happened which I'm not going to detail, that drove it into me how much she is deteriorating. I had to go outside & cry. The little dog of course came with me & sat on my knee for a while gently licking the tears from my eyes. It was one of those truly desolate moments. Mel , bless her, realised that something was amiss & came out & Joined me. We sat & quietly talked for a little while. I was so glad to have someone there to talk to that would just listen & not try to equate what I was feeling with something that had happened to her. Too often I end up doing my crying on my own. Whispa tries very hard to understand, but she is a dog after all.

Sharon is coming down tomorrow, hopefully bringing the kids with her. That will fulfil my wish of Jude getting to see all her kids & grandchildren. Monday, our dear friends Grant & Annette are calling in for an hour or so which will crown a lovely birthday for her.

I haven't brought her a present. What I have been doing though is tidying up her gardens for her. I have done what I think is a very creditable job on the front garden, weeding it, transplanting some Flag Irises & planting out a heap of other plans & seeds. It just about needs weeding again, but I am too scared to until the seeds I planted come to something identifiable. I've just about got the shade house useable again & intend to sort out her sadly neglected orchids there. I've made a start on the garden in the center of the back lawn & still have the rockery to do. Its amazing what you can accomplish in half an hour or so a day, but like the cheese ads say, "Good things take time."

A week of it

We have had a busy week with visitors. It really came to a head Thursday afternoon. We ended up having a sort of summit conference here. We had already arranged for our doctor to be here, but then the Palliative Care team from Waikato Hospital Phoned & said they were coming about the time the doc was due, so I figured we may as well get our caregiver & the district nurse here as well, so that everybody is working off the same page. As well as all that, our Hospice Waikato field worker turned up for a visit as well.

It was a very productive session. We will be getting a set of crisis management sheets, so that if something goes wrong I will know what to do, instead of going by guess & by God & feeling like my ass is hanging in the breeze somewhat, I will now have a very definite set of guide lines to go by. So for that matter will anyone else that I entrust with Jude's care, such as Christopher. All sorts of new meds for pain management have been prescribed as well. Friday saw the arrival of the rep that markets the patient hoists. The one we had wasn't particularly satisfactory, with Jude tending to slip through it. We now have a different one that is much easier to manage. It is making my life a lot easier now that I don't have to bodily lift Jude around so much. It certainly makes getting her into bed a lot easier & we have sorted out her nightly commode visits so they are easier for both of us.

The weekend sorta slid by, as wet weekends do. Saturday night Lorna from next door came over for tea. It was great to cook for someone else & to be able to sit down & chat over a meal. I miss that dreadfully with Jude. We used to chat a lot at meal times. We also got Troy from next door number 2 to come over & give us a quote to redo the little bathroom as a wet area. It was a good quote, so we accepted it. I was intending at the least, to take up the old vinyl, but as usual, once I got started, I am ending up doing a lot more. It will save us money in the long run& I am happy puddling around doing it. It is a little frustrating having to work around Jude's sleep time, but I'm making good progress, so will plod on & should have quite a bit done ready for when Troy starts in earnest on Thursday.

Wel, thats about it. We get to meet our new MND Field Worker, Graeme, on Friday. The poor bugger has been lumbered with not only all his own clients in Tauranga, but all the Waikato ones as well, theoretically accomplishing all this in 20 hours a week. Optimism is a wonderfu; thing isn't it ?

Thoughts on lessons

I talk to a lot of people about MND, both those with it, those who care for someone with it & those who know or have known someone with it. I am starting to recognise a commonality with nearly all of us. We seem to without exception. ask the question, "WHY?" For some reason, this ailment seems to be selective. Without exception, all folk that I have come in contact with that devlop this illness, are nice people. I have yet to meet anyone with it that isn't a nice person, which makes the question "WHY?'' all that much more pertinent.

My spiritual faith says to me that the whole of our life consists of lessons that we have chosen to learn. Caring for someone with MND has seen some pretty big waves battering at the breakwater of my faith , as I have mentioned elsewhere here. It's very difficult to come up with something positive to be learned from coping with something like this.

I was talking to an old friend yesterday whose beliefs run along similar lines to mine. He is one of those eternal optimists who can find good in every situation. Well. nearly always anyway. I hadn't talked with him in a while & even he was struggling to find anything positive to say about MND. We chatted for a while, then suddenly, in a flash of insight, I came up with what I believe the lesson to be learned from MND & diseases like it, is. In a word, acceptance.

None of us really want to be in the situation of having to deal with MND either first or second hand. One thing that I realise now is that I deal with it in what is maybe a strange way. Other than finding out what the theory of MN is & how it affects the body, I have deliberately not delved too far into how it affects the body. Some may feel this to be a head in the sand attitude, but I don't agree. As each stage of the disease happens, I deal with it in my own way. Part of that is not worrying about things that haven't happened yet.

It would be very easy, under the circumstances to fall into the trap of the "Why me?" syndrome. It's a dreadful disease & it is difficult to understand why it should be inflicted on ANYONE let alone nice people. This is where the acceptance comes in. WE don't know why, we don't think its fair. But there it is. Right in your face. You need everything you have to deal with it. So... acceptance. you just have to accept that it's a huge part of your life now. You don't have to like it, just accept it. Save all your energy for dealing with it. You will sure as hell need it.

A rite of passage

Chris came down to see us this weekend. You know Chris, Jude's youngest son & my strong right arm. I'm glad he did, because this weekend was the biggy for Jude & I. We have had a Hospital bed sitting in the garage all week & I have been going out , looking at it & contemplating the significance of it. You see, Jude has reached a point where she is no longer able to support her own weight & needs a commode & a wheelchair to cope with life now. Our bedroom is quite big, but there isn't really enough room around our bed for me to manage her in & out of bed any more. Hence the hospital bed. To accommodate it has required a major rearrangement of all 3 bedrooms. I won't bore you with the details, but it was very much a case of all hands to the pump. The inimitable Colleen, our care giver & good friend, came round & helped as well. To be fair, her & Chris did most of the work, & I sorta hung round like a spare wotsitsname at a wedding looking lost. The bedrooms are all sorted now, with just a bit of fine tuning to do, but everything is useable now. I must admit to feeling sad looking at our double bed in the spare room now & 2 single beds in our room. I will admit though, that the increased ease of managing Jude in & out of bed helps ease the hurt a bit.

We also have a patient lifter waiting in the garage as well, but we can't use it yet, as it was minus $1600.00 worth of battery pack & lifting sling when we got it. That will help a lot with the nightly shifts from bed to commode & back. I am as gentle as i can be, but I know I hurt her arthritic leg every time I lift her.

The animals are very unsettled, with Tigs, who likes to snuggle up between us spending most of last night going from one bed to the other. Fattums isn't much better & the little dog isn't at all happy about being relegated to the foot of the bed, but there just plain isn't enough room for her up by my pillow any more. They will adapt, as will I. Time heals most things I guess.

I had to go down to The Red Shed To get a couple of things this morning, so i took advantage of Chris still being here to give the little dog a walk down in Victoria Park as well. We both love it down there. As soon as Whispa knows we are going there, she starts yipping & mooing with excitement, jumping up & down huffing & snuffing out her window. Sundays are always a nice time down there, especially with the lovely weather we had today. Sunday is the day that the Miniature Railway runs & it really is a big rite of passage for all Thames grandparents to proudly take their grand children down there & pretend that its just for the little ones that they ride it as well. I know, because I've done that. For the princely sum of $1.00 a ride, its an inexpensive way to enjoy a spring morning with the little ones.

So Whispa & I go for a walk. Its a great way to vicariously share the joy & excitement. We both enjoy the walk round under all the beautiful old Pohutukawa trees as well. The little dog gallops madly round in the wet grass thoroughly enjoying herself, while I pretend not to hug the trees. Its a lovely way to destress & recharge the batteries for the coming week.

The Secret Garden

I don't know if it is a pensioners complaint or not , but I am actually starting to enjoy gardening. Those that know me well enough will tell you that I am more a hunter gatherer than a farmer, but in spite of my self, I am starting to enjoy it. You see, Jude is gradually becoming more & more intensive in her care needs. Sometimes I find it very painful just watching her try to do something for herself. She never gives up, but there are a lot of things now that she just simply can't do for herself. Simple things that you & I take for granted, like getting out of bed, or feeding herself. Even putting a rug over her knees. Suffice it to say that the gardening that she loved so much is only a fond memory now.

So I have stepped into the gap. I know she worries about the gardens & my ability to cope with them because she has asked the District Nurse how to go about getting a disability grant to get them done. I have always tried to tailor jobs around Jude's routine, but as she is now sleeping a lot more, it becomes difficult to get things done that require leaving her home on her own, as the simple task of taking her mask off, getting out of bed, coming to the lounge, sitting in a chair & putting a rug over her knees is beyond her now, so a trip to the super market instead of being a leisurely thing is now a frantic dash to get home in time to put her to bed, or help her go to the toilet. Fortunately, an ex workmate's wife has offered to sit with her for me which will be a big help.

As a consequence, I find myself with time on my hands. A simple chore like hanging out & bringing in washing is pleasant, but you can only stretch it so far. Enter gardening. I have always looked after the vege garden, so have started with that. I have resolved to do at least half an hours gardening a day, until they are looking at least as if someone may actually give a passing thought to them if not actually love them. So far its working. The vege garden is looking respectable again & I intend to start on the front garden today, because thats the one that Jude looks at the most. I intend to get her gardens tidy then plant them with masses of ground cover so that I will mostly just have to prune her beloved roses.

The Secret Garden ? That's in my head. On a sunny afternoon when you're on your knees with a little black dog snuffling around beside you, your hands in soft fertile earth, it's an awful lot easier to try & make some sort of sense out of life. At the very least it provides half an hour or so where you can let your mind take flight & soar in places that are just memories now. I still don't like gardening & its a form of self discipline that I need to do it , but aside from pleasing Jude, the side effects in my head are well worth it.

The Taking of Pelham 123 & other stuff.

I sat & watched the 2009 remake of this movie tonight starring Denzel Washington & John Travolta. I've never watched either it, or any of its predecessors, although I had heard of it. Its a damn good movie. Its a very credible action movie with a certain amount of related violence that shocks with it's gritty realism, not entertains because of its improbability. The fact that it has been remade 3 or 4 times kind of speaks for a very strong story line. It kept my eyes open for 90% of it anyway, which is doing real good for me at the moment. we seem to be having a bit of a time of it at the moment you see, which makes for very broken nights on both our behalfs.

I explain. When Jude was in hospital, she naturally had her BIPAP machine there with her. Easier than using a hospital one as hers is set up for her & she trusts it. Trust is an important factor for her these days. Anyway, our BIPAP is somewhat newer than the hospital ones & different to operate. Sadly, Jude had nurse Hamfisti assigned to her for one of the night shifts who obviously thought that the way to turn it on was to press the on button as hard as you can while screwing it remorselessly in a counter clockwise (I think) fashion. This as I eventually found out has the lovely effect of making the button part company with its housing & partly disappear down it's own fundamental orifice. This has the ongoing effect of sending the machine into paroxysms of test modes, spontaneous startup/shutdown cycles & all sorts of fun things that , at 2.00 AM, present all the entertainment of a slow motion train wreck.

I finally figured it out, figured how to get it useable & phoned the Sleep Clinic at Waikato to make arrangements to uplift a replacement. The next hurdle was getting someone to sit with Jude while I was away. (4 hours is just a bit too long on her own) Our usual person had an important appointment on the day & couldn't do it. We ended up double booked, but the main thing was that I could go off & not worry about her which was great. Enter the new BIPAP machine. Apart from it sounding like no.2 engine on a 747, it worked well. Too well in fact. Way too well. Jude started complaining of wind & it got to the point where I was literally having to deflate her every hour or so during the night via her PEG tube. We nutted it out between it that this thing was pushing too much air into her & because of her reduced muscle control, a substantial amount of it was being pushed into her stomach. Another trip to the sleep clinic on Saturday afternoon revealed that the original technician that set the machine up didn't set the flow right & it was pushing through half as much again as it was supposed to. All is now well, with the noise greatly reduced & Jude getting the right amount of air that she is supposed to. The moral of the story ? If you are being given equipment of any kind, particularly replacement stuff, Don't be afraid to get it operating while you are still at whatever clinic you're at. It could save you trips & sleepless nights later on. Jude is doing OK. She is recovering as well as can be expected, but I do have a sneaking suspicion that she did get a hairline crack in at least one of her ribs during resusc. She doesn't complain, but I can see it in her eyes when I turn her over at night. I know how it feels, because I've done it myself 2 or 3 times & the only healer is time, about 6 weeks of it.

I finally got out for a walk this afternoon. Just lately its been a case of commitments that don't allow it or weather that precludes much more than the obligatory 100 yard dash to let the little dog do what she has to, but today was beautiful. I couldn't get out this morning because of visitors, washing & other stuff, so we went this afternoon. There is something rather nice about a Sunday afternoon stroll. It's surprising how many people are out & about either with or without their beloved pets. One thing I love about walking with a dog is that it acts as a superb icebreaker & allows me to meet all sorts of interesting people. Today, I met this lovely young couple feeding the ducks. They are Tasmanian (we wont hold that against them) & have been working at Wanaka. She is now working for DOC in Thames doing work in the Biodiversity Field, whatever that is & they are living up the Kauarenga Valley. We had a lovely chat. Its small pleasures like this now that keep me reasonably sane & happy..

Catching Up

I am in catch up mode a bit. Life has been somewhat eventful for the last week or so. You see last Thursday week Jude ended up in hospital yet again. Fortunately, this time it was the local one, so there was minimal traveling involved. What happened was effectively my fault, but I'm not beating myself to death about it. I do feel guilty, yes, but not in an all encompassing, soul destroying way. If Jude held me responsible for what happened, then yes I would feel substantially worse, but she doesn't, bless her, so we both just put it down to live & learn.

Lately, we have been trying her with small cups of coffee & a taste of wine on her toothette sponges just to moisten her mouth & at least give her the taste of it. Anyway, I was eating a particularly tasty orange Thought a tiny morsel of it might bee good to suck on just for the taste of it in her mouth. Jude agreed. It wasn't, so out came trusty Igor, the suction unit. Jude started to get a little panicky as she was getting very short of breath & reflexively bit down hard on the suction tip & dislodged a tooth.. Lots of blood & mucous & the 3rd call for an ambulance in as many weeks. He thought it was incredibly funny when I asked him for frequent flyers points. I followed along with her BIPAP & a change of clothes & got there just as they were transferring her from the ambulance stretcher to a hospital bed. AS I got there, the driver said, "Is her face always that color?" "No! " says I, then all hell broke loose.

The upshot was that it took 4 doctors something like 4 minutes to get her back for me & in the end it took shock paddles to do it. I know this terrible affliction will eventually reach out a cold bony hand & take her from me, but thankfully, it wasn't this time. It wasn't right, it wasn't time & I wasn't prepared to let her go at that point.

She is home again & recovering now, but still very frail & fragile. I can't praise the hospital doctors & nursing staff enough. Admittedly, either Jude has worked with them as a Friend of the Emergency Department, or I have grown up & gone to school with a lot of them as well but still... It's a lovely new hospital wing with very enlightened views. I was even allowed to bring our little dog into the room & have her on the bed, where she sat with her head on Judes arm gazing soulfully into her eyes, but all is right with the world now. Jude is snuggled up in bed with a cat curled up with her & the little dog has deserted me for the warmth of the fire in the lounge.

We've had problems with her BIPAP as well. Wouldn't shut off, wouldn't turn on, going in & out of test modes & all sorts of weird things, which are bloody wonderful at 2.00 AM when you are trying to get her in & out of bed for a potty stop. I was all set to go through to Waikato for an evening appointment with the Sleep Clinic, but I managed to fix it. All it is is a worn stop start button that you have to very carefully pick out of its hole every once in a while. I'm going to send a picture of it through to them & see if a replacement is available. It's useable now though which is good.

Then there was the saga of our new cordless paging system, (Wireless Doorbell) It's been working intermittently for a while now. I replaced the batteries but that helps sometimes, sometimes not. I tracked it down though. You see I tape the bell push to Jude's get out of bed frame, which is made of steel tubing. The body of the bell push has an adhesive pad on the back of it which I haven't to date used, but it has compressed to being paper thin & this has been killing the signal. A small bit of hardboard attached to the sticky pad has solved THAT problem.

Now for the good news. We've had a good weekend. Jude has been spoiled rotten. Chris & Mel came down for the day on Saturday, bought some lovely flowers down with them & Phil & Jean came down as well, stayed the night & left about lunchtime today. We haven't really had all that much to do with Jean, but she is a lovely lady & really went out of her way to make a fuss of Jude which was nice. Its all left Jude very tired, but the weekend is a good tired with some happy memories.

Well that's about it. This coming week I'm going to see about getting Jude's teeth cleaned up, getting her hair tinted & trimmed & I'm going to try & overcome a personal phobia I have regarding paper work & get some done that seriously needs doing. All good positive stuff.

Glory Days

My old mate Hawkeye dropped me an email last night. You remember Hawkeye. The old lag from Fire Service days. We keep in touch regularly & try to keep each other relatively grounded. Doesn't always happen. Usually our conversations degenerate to,"Do you remember...?" or who was it that ....?" Or more pertinently, "What ever happened to......? We argue a lot, but that's not a bad thing. It's a bit like a script for a bad rewrite of "Grumpy Old Men.

Anyway, Hawkeye sent me this list entitled "Extinguished," That names all the Fire Fighters from our era that have gone to the great fireground in the sky. There is an awful lot of them. A lot I knew about , but some I didn't. Its not good to learn you have lost old friends by seeing their names on a list. Reminds you too much of your own frailties.

But here we both are. Still, by the grace of God & the Fickle finger of Fate, still plodding along. We both agree that someone should write a book about the Glory Days when Firemen were real men & actually put out fires by going into burning buildings with no breathing gear because we were too proud to admit to human weakness. Men of iron & steel we were . 10 foot tall & bullet proof, at least thats how it seemed at the time. Now when we feel the effects of years of abuse to our bodies, we know different. Yes, we should write a book, but what we be the point. Nobody would believe it anyway.

Sleep well old comrades. May all your night shifts be clear of calls & may all your standby's be on group training days..

Louisiana Rain

I was really looking forward to relaxing in front of the fire tonight with a little black dog on my lap, a glass of reasonable quality malt in my sticky little paw & some top quality Tom Petty playing on Prime in the show called Prime Rocks. Sadly, I was not to have it uninterrupted. It was one of Jude's worse nights. Up & down for most of the first half of it. The joys of being a caregiver I guess. We have , under the Dietician's supervision, been slowly changing her over to a full diet of the Fortisip Multi Fibre. We are at present at a rate of 4 of the multi to 2 of the ordinary, but its too much. She hasn't been feeling very flash, but it wasn't until the District Nurse came this afternoon that I found out that she is constipated. After the nurse left we had, yet again, another of our chats (one sided) about the value of keeping me up to date with regards to her symptoms. We are going to back her off to a 50 50 mix & give her something to soften her up & get her going again. I suggested taking her out on the back lawn & hooking the garden hose up to her PEG tube, but the District Nurse didn't seem to think it a terribly good idea. She did laugh though.

A dear friend some time ago suggested that a TENS machine might provide relief for Jude's hips & knee. I did check it out at the time, but they were a bit on the expensive side. I subscribe to one of those daily deal email things. Mostly, I just give em a quick scan & delete em, but today I sat up a bit. Out came the trusty old credit card & hey presto, 2 minutes later 2 TENS machines are on the way for a princely sum of $40.00 (I have joint aches as well & fight a constant battle with my lower back from lifting Jude round all the time) If they help, fine, if not then it's not a huge amount to shell out, as they had something like a 60% discount on them.

Anyway, to make the title of my post relevant, here is some classic Tom Petty. Smooth as.... Louisiana Rain... Enjoy

Victory

I managed to get Jude into the spa this afternoon. Her knee has been giving her hell lately & although I have found a way to get her in & out with little drama, it's taken till today to do it. Basically, I have a bar stool with a revolving top that's the same height as the spa pool. After a couple of experiments that didnt work, we found the best way is for her to back up to the stool on her walker , hitch herself up on to it as much as she can. I remove the walkerget the rest of her on the stool, turn it round & lift her legs in. From there its a relatively easy thing to take her gently under the arms & lift her into the pool with me.

She did enjoy it so, but like everything extracurricular these days, there is always a price. An early night, not even watching Castle. Still, I can always get that on TV on demand.

Stormy Weather

Well, it's been a lusty blustery few days here. Because we are so sheltered, we dodge the worst of the wind, but nothing alas, can shelter us from rain. So , armed with 3 days worth of washing I hit the clothesline this morning. For the record, I don't do lines in garages or clothes horses. Can't stand them. I will if the situation warrants throw the odd load in the dryer, but definitely prefer natures way the best. I got it all dry. I was enjoying my usual quiet time folding & sorting the washing. It's always the same. The little dog snuffles around the edges of the garden making it seem as though there is a regiment of hedgehogs on manoeuvres & Fattums the cat rolls round on her back playing with what ever bit of stick she can find. On a day like today when there is just enough wind to render the washing nice & soft as well as dry. I knew that rain was inevitable from the lowering black clouds approaching. Still it was a little disappointing to feel the first few drops on the backs of my hands when I was still only two thirds of the way through getting it into the basket. So that made for the usual mad dash of grabbing it all into the basket & inside before it got more than a few drops on it. I went inside leaving Fattums lying on her back in the middle of the lawn enjoying the feel of rain on her fat old ginger tum.

I have solved the problem of getting Jude into Sherman. I'm told that all by myself, I have re invented the transfer board. Whatever. It works. A nice smooth board with a handle on one end that I sit on the car seat, then sit Jude on it & slide her across. Much easier than bodily lifting her in.

One of the drawbacks of the patient/caregiver situation can be lack of human contact other than health care professionals & especially in Jude's case, I feel the lack of ordinary conversation. For some reason, friends, other than a very loyal minority, stop calling. This can be for a number of reasons, but chiefly I think because the sight of the patient scares them, they don't know what to say, or they don't want to tire the patient out. Well, we have had plenty of contact over the last few days. Thursday wasn't so hot. Jude had an appointment with the Respiratory Clinic in Thames for 10.30. basically, it was a waste of time, with me having to explain, yet again, why Jude can't do a respiratory function test. She hasn't been able to for the last 2 years or so. One would think the message would have got through after that long. After an hour, Jude was not in good shape & I was ready to tell them we were going home. Fortunately, they found her a bed to lie on & put her at the top of the list to be seen. Then we got seen by the new registrar, who proceeded to ask the same old questions that we have answered God knows how many times in the past & upset Jude by talking about a time when she wouldn't need the BIPAP. Basically a waste of time that took Jude most of Friday to recover from.

Saturday we had a lovely time. Packed Jude & the dog into Sherman & we went down to the market. It was a nice enough day weatherwise. Whispa very dutifully trotted alongside Jude's chair & we all thoroughly enjoyed being out & about & talking to people, not to mention coming home with a nice smoked Kahawai for me & a nice warm pair of hand knitted wooley gloves for Jude.

As if that wasn't enough, we had visitors Saturday afternoon. Both of us. Jude had her most loyal friend Joy come to see her, & Al dropped in to see me at about the same time. Al is an old workmate & one of the very few that has actually bothered to stay in touch after I finished working. It was a real tonic to sit down with an old mate & catch up on gossip over a few beers. Other than the washing & keeping up to scratch with dishes etc., I haven't really done a lot. But I do feel refreshed & recharged. Thats the main thing isn't it ?

A caring frame of mind

Some times its easier to be a carer than others. It's easy during the day, when you are reasonably awake. Tailoring my own requirements around Jude's increasing needs for help is an on going sort of thing that requires a certain flexibility of mind. It is a case now of doing chores & errands down town while she is awake & watching TV. This isn't so hard as I am finding that more & more she is becoming a creature of habit. My only regret s for the morning is that it isn't practical to walk the dog at the time I used to, namely when the kids are walking to school. That I regret, as the kids love to stop & give Whispa a pat, but the later time has its advantages as well. I get to have my walk uninterrupted, which gives me serious thinking time.

Night time is the time that I find hardest to cope with at the moment. There is quite a ritual. When she is finally turned on her side in bed, she needs her mouth suctioned out. She does that herself. Sometimes I help, but I have a rule that I refuse to put the handpiece past her teeth. The next is to make sure the BIPAP is set up properly, mask straps adjusted correctly, water in the reservoir, mask clean & most importantly, a strip of plaster across the bridge of her nose to stop it from chafing. Fitting the mask is something not to be rushed, as it's better to get it right first time. Then there is a thin pillow to go between her knees to pad her painfully thin legs & arthritic knee, the final roll over to her sleeping postion, adjusting her pillow to the just right position, snuggling the blankets up round her shoulders nice & warm, the kiss goodnight, me saying ,"I love you," her clenching my hand, which is her way of saying the same, turning the light out & off to the lounge.

Sometimes I get to sit & watch the Discovery Channel for an hour or so with the dog on my knee, her heaving great sighs of happiness, me with a whisky & soda in hand. More often than not its me just getting settled & Jude ringing the pager because her mask isn't right, or she needs to suction her mouth again. This can happen 3 or 4 times before she finally settles. Once I'm sure she is settled &/or what I'm watching has finished, the little dog & I go for a 5 minute stroll then go to bed. The hardest bit is when I get woken up an hour after I finally get to sleep because she needs to go to the toilet. That involves waiting till she comes back so that I can settle her down again.

You will therefore, understand why sometimes it is very easy to get a little bit short when you continually get your down time interrupted. I have on a couple of occasions walked out of the bedroom in sheer frustration at my inability to divine what is wrong & remedy it. Sometimes I need to stop before I go to her & remind myself of a few things.

I think back to when I had both Carpal Tunnels repaired & How frustrated I was that I couldn't even wipe my own butt. I remember what an independent lady Jude has always been, now she can't even dress or feed herself, let alone express herself. I think about how it must feel to know that it isn't going to get better, only worse. I think about the gardening, patchwork & helping people that she used to love so much. I stack all this up against missing a few minutes of TV, or having a broken nights sleep & its a bit of a no contest really. Yes, it is difficult at times as the level of care increases, but doubly maybe trebly so for your loved one. So when the tough times come, just try & remember the love & trust you are being shown in that you have the privelege of caring for someone so brave. That certainly helps me to put a smile on my face & a kind word in my mouth at my low times.

Sweet Home....

Well, my precious little family is all safely back in the nest. Jude didn't get an Ambulance home. She didn't really need it, she has recovered so much. We did have to hang around, however, till1.30 for an appointment with the sleep lab. Jude's BIPAP mask doesn't fit so well any more, so they wanted to fit her with a new one, which they did. Its a neat mask & has a lot of features that are better than the old one she had, but as far as Jude is concerned, it has one major problem. You see, it has these protruding arms that stick out for the head strap to hook on to. It's fine if you sleep on your back, but she doesn't. She sleeps on her side with her head snuggled quite fetchingly into her pillow. if she does this with the new mask, the arms tend to push the seal away from her face. I rang the sleep lab on Friday & asked for the old one back & in the meantime have repaired her old one with string & surgical tape to get her through till the new one arrives.

The little dog was overjoyed to see her mum. bouncing up & down, wriggling, hooting, squeaking & licking. All items in her repetoire of joyous action. And so diplomatic. She spent the whole trip over with her backside on Jude's lap, her tum on a cushion on the center console & her head & front paws on my lap. Utter bliss for a little black Dachshund.

One of Jude's nurses there had a trainee nurse under her wing for one of her shifts. She asked me if I could tell them both a bit about Motor neurone disease, management of patients with it & care & usage of BIPAP machines. I'm always happy to advance the cause in any way I can, but I must say that it felt a little strange to be lecturing health care professionals in a hospital, even though I do know what I am talking about these days. I learned a lot while I was there as well. I have changed my attitudes towards things medical & have decided to learn as much as I can in the field. I have learned that at Waikato, if you come to ED as a non urgent patient, you can wait up to 8 or 10 hours to be seen. I have learned that despite the shortage of staff, our hospitals still have some of the most dedicated compassionate & caring people that I have met in a while. I have learned how to reset an electronic drip & work the hospital suction system. I have even learned how to sleep in a hospital Lazyboy. No mean feat I tell you.

So we're home. Jude got a bit panicky trying to get used to the new BIPAP mask & because I couldn't find the panic button for her life link didn't want to be left home alone, so I had to phone her care giver to come round while I went out & got a few groceries. I've since found the button & she has settled to her usual calm self. She even came for a walk with me this morning. Now all we both have to do is get used to feeding her 6 times a day & work out new routines around it.

Ignorance is not always bliss

For the last few weeks we have had an ongoing problem with infection in Jude's stoma. She has also had increasing levels of discomfort & distention in her abdomen, with no relief forthcoming from any quarter. This came to a head with two ambulance trips to our local hospital & eventually a transfer to Waikato Hospital in Hamilton. Yesterday she finally got her colonoscopy & a new PEG fitted. The old one had degraded quite badly, & this tallied with my theory of it being cause for concern. The big relief was, however, that there was no sign of an ulcer which was what they were worried about.

I should explain that Jude's PEG was fitted very early in her illness on the advice of a remarkable proactive Neuro nurse. She didn't actually need it to live when it was fitted. All we needed to do was keep it flushed with water. As her needs changed, so did the use of her PEG & we just worked it out ourselves, as it never occurred to us to seek advice. So, we just didn't realise that we had been putting far too much into her poor old tum at a time, like 3 bottles of fortisip & 200 mls. of water at a feed. Apparently, one bottle at a time is quite enough with 50 mls of water each side.

So, I'm due to go over & collect her today. Hopefully, her pain levels have dropped substantially & hopefully, they will transfer her by ambulance. This will give a far more comfortable trip than poor old Sherman can provide. When she gets here we go onto a routine of 6 feeds a day for her. We will probably work those around her sleep periods. It will probably take a bit of adjusting to, but I'm sure we will cope. Will let you all know how it goes anyway....

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..