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.