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..
Thursday, March 31, 2011
Monday, March 28, 2011
Care Giver Blues
I think that Jude & I are starting to get to the hard bit in our journey. I know for certain that Jude is finding day to day things a real struggle & needs more & more help to cope. The down side of this is that I am finding that I have less time for my safety valve outlets. Every day now it seems that I have to think of new ways of organizing my day so that I can get enough "me" time in to get by. The kicker is that at the moment, the worse she gets, the more time I need & the less time I get. Just another of lifes little conundrums to figure out I guess. At least I know now what my problem is & can work on it. Little things, like remembering to give Jude her evening feed before I start beating something to death for myself, so I don't have to stop halfway through mine to do hers.
One major innovation I have come up with is the purchase of a cordless doorchime. The chime bit isn't much bigger than a pack of cigarettes & so fits handily into the pocket of my cargo shorts that I tend to wear. The buzzer bit fits neatly into a soft mobile phone case & hangs on a lanyard around Judes neck. It has a range of give or take, 30 metres, so pretty much works anywhere round the house. The whole set up for under $30.00.
Whisper has found a friend. There is a 6 month old brown male Dachsy halfway along the road that I walk every morning. He's a nice little chap except that his head & nose seem too big for the rest of him. maybe he will grow in to it. Just like I guess I will grow in to the way things are now.
One major innovation I have come up with is the purchase of a cordless doorchime. The chime bit isn't much bigger than a pack of cigarettes & so fits handily into the pocket of my cargo shorts that I tend to wear. The buzzer bit fits neatly into a soft mobile phone case & hangs on a lanyard around Judes neck. It has a range of give or take, 30 metres, so pretty much works anywhere round the house. The whole set up for under $30.00.
Whisper has found a friend. There is a 6 month old brown male Dachsy halfway along the road that I walk every morning. He's a nice little chap except that his head & nose seem too big for the rest of him. maybe he will grow in to it. Just like I guess I will grow in to the way things are now.
Sunday, March 27, 2011
Loving her was easier.
Well, Cory & Rob have gone & are safely home in Texas. I couldnt play for them as the tail piece on my guitar broke. Its now replaced & my trusty old Eko is all better & tuned now. It took a couple of days. You dont just throw the strings onto a 12 string & wind em up & hope to play it, specially one as old as mine. Like all of us, they take a little while to settle in & take up the load. You can't hurry it. Its better to leave it sit over night a note or so lower than concert pitch. You can hear it creaking while you put the load on.
The next day sees you right to hook up the tuner & set it up properly. There is a timeworn joke that goes like this.......
How long does it take to tune a 12 string ?
Nobody knows because its never been done.
I will admit it does take a while & unless you have a good ear, (I don't) then a fitted pickup & an electronic tuner are pretty much a must. You know when you have it right, because the instrument comes alive, resonating beautifully. Would you guess that I'm a fanatic when it comes to 12's? I've only been playing one for 45 years, so yeah I guess.
Anyway, I haven't touched it in a while & I have opened my big trap & agreed to do a lunchtime recital at our local library sometime in May as part of New Zealand music month. I also have vague promises of a couple of other gigs round & about the place. So, today being a bit of a too much of nothing sort of day & having already cleaned all the paper & crap out of the garage, I decided to set up a practice corner in the garage & start dedicating at least half an hour a day to practice. So, I dug out my music etc., & started working my way through my music. I was going great guns too until I flipped over to this song & started playing it...
The next day sees you right to hook up the tuner & set it up properly. There is a timeworn joke that goes like this.......
How long does it take to tune a 12 string ?
Nobody knows because its never been done.
I will admit it does take a while & unless you have a good ear, (I don't) then a fitted pickup & an electronic tuner are pretty much a must. You know when you have it right, because the instrument comes alive, resonating beautifully. Would you guess that I'm a fanatic when it comes to 12's? I've only been playing one for 45 years, so yeah I guess.
Anyway, I haven't touched it in a while & I have opened my big trap & agreed to do a lunchtime recital at our local library sometime in May as part of New Zealand music month. I also have vague promises of a couple of other gigs round & about the place. So, today being a bit of a too much of nothing sort of day & having already cleaned all the paper & crap out of the garage, I decided to set up a practice corner in the garage & start dedicating at least half an hour a day to practice. So, I dug out my music etc., & started working my way through my music. I was going great guns too until I flipped over to this song & started playing it...
Wednesday, March 23, 2011
Parting is such sweet sorrow
For the past three weeks, we have had the pleasure of Cory & Rob's company in this country. They are from Texas & were here for a well earned honeymoon. We haven't had the pleasure of their company in our house for very long, 24 hours on their way in & a couple of days on the way out, but just long enough. Just long enough to make a friendship that I am sure will last a lifetime. Just long enough that, unusually for me, I shed tears on our parting this afternoon. Just long enough that the house feels very empty without them here. Come back soon guys. You were here just long enough to make me feel that I have known you all my life. I love you both dearly.
Monday, March 14, 2011
For whom the bell tolls
I got some very sad news today. A lady that we met while we were on holiday has just passed away. We didn't really know her at all. She was pretty much in the same boat as Jude in as much as she couldn't speak either, so they just sorta sat there & smiled at each other a lot. To complicate matters, she also had early onset Alzheimers. We found out a bit about her from her husband though. She was a school teacher as well as a music teacher, so all in all, a very clever & intelligent lady. Now she's gone. Its very sad. You could tell that she was a lovely & dignified sort of a person. Rest in peace, Judith Angus. Life treated you unfairly. May you be at peace where you are now.
I don't enjoy receiving news like that. it reminds me somewhat uncomfortably of the uncomfortable inevitability of this dreadful disease that we are facing. There is no get out of jail free card, no last minute miracle cure & no hidden exit. We don't like looking at that. We know where we are heading. Every day brings something new pointing the bony finger in the only direction that it can point, be it having to spend more time each day on the BIPAP machine, sleeping more, or getting more unsteady on her feet. Not only does it make life harder for her, it also limits the amount that she can do every day, so I am learning a new skill. That of organising time out of the house to achieve maximum results. We have the library to a fine art now. I slowly push her down one or the other of the aisles. She points out books, I retrieve, she peruses & decides if its readable or not. Meantime I keep an eye open for myself & books on the higher shelves that she can't see because of her inability to lift her head very far now.
She gets a lovely massage Mondays & Fridays, they help her a lot. We have asked DSL if we can have our carer in to shower & dress her 7 days a week now. I could carry on doing it, but I feel awkward. I know that Jude can feel that, but bless her she doesn't say a word. So its easier to let Colleen do it. Its what she does for a living & she does it very well. Add to that the fact that she has been a personal friend for a lot of years & you get the idea. Depending on what time I wake up, I get an hour or so in the morning to puddle on line without having to keep an ear open for Jude needing help. 3 claps means she needs help. Anything else is approval of something on TV or in a book or what ever. Anyway, I usually wait till she is out of bed, gone to the loo & settled in front of one or the other of the tellies. She hasn't said anything, but I think the TV in the bedroom might be a little high for her. Something to check on. Once she has settled, the little dog & I go for our morning walk. I have found a definite benefit to waiting until I get back before I have my breakfast. I don't feel so sluggish & an empty stomach helps the thought processes.
The rest of the day basically revolves around me trying to do the non noisy stuff while she is sleeping. I can generally get a nap for an hour or two in the early afternoon while she is watching her home renovation & cooking shows. Strangely, at this time of year anyway, I actually look forward to bringing in the washing. It's very quiet & peaceful in the back yard. All you can hear is the Tuis Pigeons & starlings all having their late afternoon chats. All accompanied by a little dog happily munching on her bone. I buy her beef soup bones. They have a lot of meat on them & make a pleasant change for her from chicken necks. I used to just haul the washing off the line, dump it in the basket, then maybe sort & fold it while watching TV in the evening, but I have found a certain enjoyment in folding sun crisp washing & sorting it as I go. less crinkles & wrinkles as well.
So, here I am at 1100 pm, at the keyboard with my post Jude bed time scotch on the rocks. It helps settle me for the night. That & a 5 minute walk so that the little dog can have her last potty stop of the day before she curls up by my head, gives a couple of happy piggy little grunts, carefully puts her head on my shoulder, I suspect to try & make sense of what is written in the book I am reading. It never fails to amaze me. She sleeps not 6 inches away from me all night & yet in the morning we have a mad gallop round the lounge with enough enthusiasm that you could be forgiven for thinking she had been locked in a shed at the bottom of the garden all night. She has boundless enthusiasm for what ever she does, be it going for a walk, going out in the wagon or curling up for a nap with me. I honestly don't know where I would be mentally without her, she is such a joy to have about.
So there we are. Judith Angus has gone on. She is free of the indignity of having to have other people having to care for a body that increasingly won't do what the brain tells it to do. I can only imagine what that must be like. I have an inkling, because I live with it & see the frustration on Jude's face when she can't even do simple tasks like pull up her own trousers, or watch people sit down & eat. Its not a nice disease.
I don't enjoy receiving news like that. it reminds me somewhat uncomfortably of the uncomfortable inevitability of this dreadful disease that we are facing. There is no get out of jail free card, no last minute miracle cure & no hidden exit. We don't like looking at that. We know where we are heading. Every day brings something new pointing the bony finger in the only direction that it can point, be it having to spend more time each day on the BIPAP machine, sleeping more, or getting more unsteady on her feet. Not only does it make life harder for her, it also limits the amount that she can do every day, so I am learning a new skill. That of organising time out of the house to achieve maximum results. We have the library to a fine art now. I slowly push her down one or the other of the aisles. She points out books, I retrieve, she peruses & decides if its readable or not. Meantime I keep an eye open for myself & books on the higher shelves that she can't see because of her inability to lift her head very far now.
She gets a lovely massage Mondays & Fridays, they help her a lot. We have asked DSL if we can have our carer in to shower & dress her 7 days a week now. I could carry on doing it, but I feel awkward. I know that Jude can feel that, but bless her she doesn't say a word. So its easier to let Colleen do it. Its what she does for a living & she does it very well. Add to that the fact that she has been a personal friend for a lot of years & you get the idea. Depending on what time I wake up, I get an hour or so in the morning to puddle on line without having to keep an ear open for Jude needing help. 3 claps means she needs help. Anything else is approval of something on TV or in a book or what ever. Anyway, I usually wait till she is out of bed, gone to the loo & settled in front of one or the other of the tellies. She hasn't said anything, but I think the TV in the bedroom might be a little high for her. Something to check on. Once she has settled, the little dog & I go for our morning walk. I have found a definite benefit to waiting until I get back before I have my breakfast. I don't feel so sluggish & an empty stomach helps the thought processes.
The rest of the day basically revolves around me trying to do the non noisy stuff while she is sleeping. I can generally get a nap for an hour or two in the early afternoon while she is watching her home renovation & cooking shows. Strangely, at this time of year anyway, I actually look forward to bringing in the washing. It's very quiet & peaceful in the back yard. All you can hear is the Tuis Pigeons & starlings all having their late afternoon chats. All accompanied by a little dog happily munching on her bone. I buy her beef soup bones. They have a lot of meat on them & make a pleasant change for her from chicken necks. I used to just haul the washing off the line, dump it in the basket, then maybe sort & fold it while watching TV in the evening, but I have found a certain enjoyment in folding sun crisp washing & sorting it as I go. less crinkles & wrinkles as well.
So, here I am at 1100 pm, at the keyboard with my post Jude bed time scotch on the rocks. It helps settle me for the night. That & a 5 minute walk so that the little dog can have her last potty stop of the day before she curls up by my head, gives a couple of happy piggy little grunts, carefully puts her head on my shoulder, I suspect to try & make sense of what is written in the book I am reading. It never fails to amaze me. She sleeps not 6 inches away from me all night & yet in the morning we have a mad gallop round the lounge with enough enthusiasm that you could be forgiven for thinking she had been locked in a shed at the bottom of the garden all night. She has boundless enthusiasm for what ever she does, be it going for a walk, going out in the wagon or curling up for a nap with me. I honestly don't know where I would be mentally without her, she is such a joy to have about.
So there we are. Judith Angus has gone on. She is free of the indignity of having to have other people having to care for a body that increasingly won't do what the brain tells it to do. I can only imagine what that must be like. I have an inkling, because I live with it & see the frustration on Jude's face when she can't even do simple tasks like pull up her own trousers, or watch people sit down & eat. Its not a nice disease.
Friday, March 04, 2011
Magnolia, you sweet thing
I did a double take when I walked past the internal garage door late this afternoon. The reason for this is that my next door neighbor finally lost patience with having to sweep out his garage every morning. You see, he operates a sign writing business from his garage & the detritus from his Magnolia tree is not very conducive to attaching decal type signs to vehicles, which 90% of his trade is.
To be honest, I'm not really upset about losing the tree. Yes, Magnolia's are beautiful, but only if they are in the middle of a field, some considerable distance from the nearest house. When you have a 50 footer that is not much more than 10 feet away from 2 houses, its a pain. The branches, until I pruned them have rubbed the paint off a substantial part of my garage roof. The leaves don't exactly help when they clog the guttering up most of the time either. So, I'm not sad to see it go. I won't have to sweep the courtyard so often either. What I will have to do though is split up a whole heap of firewood, because I scored the trunk. Whats even better is that its cut to convenient length & has been stacked on my side of the fence nice & close to my wood bin. I don't know how good it will be, but I have plenty of Pin Oak & kiln dried pine to mix it with, so it should be fine. It will all keep Jude warm for the winter anyway, which is all that really matters to me.
We are now giving Jude 2 different tablets for different reasons via her peg tube. One lot we dissolve & put through at the start of her morning meal. The other, Amitryptelene, we give her as she goes to bed at night. The early one is no problem as it all gets flushed through with her feed, but the evening one has taken a bit of sorting. See, the Amytrip doesn't dissolve all that readily, so we have taken to putting it into about half a syringe full of water at least an hour previous to her bed time. If you draw air in as well, it allows you to give it a vigorous shake to dissolve it properly when you are ready to administer it. The other thing that I figured out today & did for the first time tonight, is put enough air into the syringe to flush all the liquid through the PEG tube. Common sense I know, but it took me a few days of worrying about her not getting a full dose to come up with it.
I'm glad it's not just me. I have been really worried about a lack of energy & a general lethargy for the last week or so. I've wondered at it's cause. Depression, the weather, altered medication have all crossed my mind. It's been really bad. All I have wanted to do is sleep. So I have. Nothing has changed but at least I'm not alone. Jude's caregiver told us that she feels the same way as well. If I can summon the will power & actually drag myself to do something, I'm OK, but it is really difficult to even summon the energy to take the dog for a walk in the mornings. That I do grit my teeth & do. She gets really disappointed if I don't & it's good for my health as well. Or so the Doctor tells me anyway.
To be honest, I'm not really upset about losing the tree. Yes, Magnolia's are beautiful, but only if they are in the middle of a field, some considerable distance from the nearest house. When you have a 50 footer that is not much more than 10 feet away from 2 houses, its a pain. The branches, until I pruned them have rubbed the paint off a substantial part of my garage roof. The leaves don't exactly help when they clog the guttering up most of the time either. So, I'm not sad to see it go. I won't have to sweep the courtyard so often either. What I will have to do though is split up a whole heap of firewood, because I scored the trunk. Whats even better is that its cut to convenient length & has been stacked on my side of the fence nice & close to my wood bin. I don't know how good it will be, but I have plenty of Pin Oak & kiln dried pine to mix it with, so it should be fine. It will all keep Jude warm for the winter anyway, which is all that really matters to me.
We are now giving Jude 2 different tablets for different reasons via her peg tube. One lot we dissolve & put through at the start of her morning meal. The other, Amitryptelene, we give her as she goes to bed at night. The early one is no problem as it all gets flushed through with her feed, but the evening one has taken a bit of sorting. See, the Amytrip doesn't dissolve all that readily, so we have taken to putting it into about half a syringe full of water at least an hour previous to her bed time. If you draw air in as well, it allows you to give it a vigorous shake to dissolve it properly when you are ready to administer it. The other thing that I figured out today & did for the first time tonight, is put enough air into the syringe to flush all the liquid through the PEG tube. Common sense I know, but it took me a few days of worrying about her not getting a full dose to come up with it.
I'm glad it's not just me. I have been really worried about a lack of energy & a general lethargy for the last week or so. I've wondered at it's cause. Depression, the weather, altered medication have all crossed my mind. It's been really bad. All I have wanted to do is sleep. So I have. Nothing has changed but at least I'm not alone. Jude's caregiver told us that she feels the same way as well. If I can summon the will power & actually drag myself to do something, I'm OK, but it is really difficult to even summon the energy to take the dog for a walk in the mornings. That I do grit my teeth & do. She gets really disappointed if I don't & it's good for my health as well. Or so the Doctor tells me anyway.
Thursday, March 03, 2011
The air that I breathe
Well, its been an eventful week. As well as our visitors on the weekend, we had an appointment with the Neurologist on Monday. We got given some news there that I am going to have to pass on to Judes kids, so forgive me if I don't share it here until I've told them. Needless to say I'm not looking forward to doing it & it is, at the moment added stress that I don't need.
Jude is starting to become more & more reliant on her BIPAP, both during the day & also at night. Physically, she is getting very unsteady on her feet, can't dress herself & can't even roll on to her side when she goes to bed. We are, I think, both starting to get a little scared. WE do have very good help around us, but it's not there 24/7. Most times , its just Her & I. I'm hoping that cooler weather will bring some relief for us both, but I'm not holding my breath. Neither is Jude. She is actually having difficulty getting enough air into her system anyway without interrupting the flow in any way.
Jude is starting to become more & more reliant on her BIPAP, both during the day & also at night. Physically, she is getting very unsteady on her feet, can't dress herself & can't even roll on to her side when she goes to bed. We are, I think, both starting to get a little scared. WE do have very good help around us, but it's not there 24/7. Most times , its just Her & I. I'm hoping that cooler weather will bring some relief for us both, but I'm not holding my breath. Neither is Jude. She is actually having difficulty getting enough air into her system anyway without interrupting the flow in any way.
Sunday, February 27, 2011
Hands Across The Water.
OK, so I used that caption on my Face Book page as well, but I really can't think of a more appropriate title. We have had the pleasure of the company of international guests for a very hectic 24 hours.
Not just any international guests, mind you. We had Cory & her husband Rob with us. Cory is the niece of my dear Texan friend Kathy, with whom I have corresponded in one form or another for the last 45 odd years. Cory & Rob are lovely people. Right from the first hug across the barrier at the airport, I knew we were going to get along fine. I think the only time the 3 of us stopped talking was when we finally collapsed exhausted into bed last night. We had a blast. I took them for a drive up the Kauarenga Valley & stopped for a swim at what is, in my estimation, one of the most beautiful fresh water swimming holes in New Zealand, complete with a cliff to jump off at different heights. Rob, to his credit, did launch himself from the mid range ledge. Cory & I discovered pressing engagements at the other end of the pool.
The nicest thing about it , I think, is that for just a little while, I could relax, & do something normal in good company. Sadly, Hoffman's Pool is out of the question for Jude now as it is a fairly rough track to get there. Lying back in the water brought back some lovely memories of times past when we used to go there to relax. Sadly, our time together had to end all too soon as they had reservations to fly to Queenstown to do some tramping, but they will be back for a few days at the end of their trip, so hopefully we will be able to spend some time on the water & include Jude this time, so , for now, its Haere Ra, Haere Ra & Haere Mai Haere mai.
I'm getting concerned for myself. I'm starting to find simple pleasures in life out of such mundane things as hanging out the washing & doing the odd spot of gardening. I've thought about this a fair bit & I think that the main factor is time. When you work, things like gardening & washing are chores that you rush through so that you can get on with the main business of relaxing in your leisure hours. I don't have that problem now. Our back yard is a quiet & gentle place where mostly all you hear is bird song. While I'm there, the little dog is generally busy snuffling round, either very carefully picking flowers or rosehips & eating them, hunting for God knows what in the garden, or lying down crunching a bone. Either way, its relaxing. If I'm weeding, which to tell the truth I really don't enjoy, she is right there with me investigating every clump of grass that comes out. I enjoy pruning the roses now as well. It gave me great satisfaction tonight to bring in a modest bunch of red & white roses to put in a vase for her to enjoy. I know she loves them so.
Healthwise, she has stabilised somewhat; I think the cooler weather is helping a bit. She even managed the trip to the airport & back without too many visible signs of distress, although I must admit that I did enjoy my afternoon snooze as well. She has an appointment with the neurologist tomorrow afternoon, the first in a while. I think that traumatic as it has been, she has stabilised at the next level of her illness & I guess we will both just have to get used to it. It's not easy though.....
Wednesday, February 23, 2011
The Nutty Gritty of it all
Its absolutely dreadful what has happened in Christchurch. It's very hard to get your head around the mortality of it all & just how ephemeral human life is. My heart does really go out to the folk in Christchurch. I will admit that I have got to the point where I prefer not to watch the news any more. It all has a depressing sameness about it all.
Anyway, with all due respects, I feel at the moment that I have enough problems on my own plate at the moment. Things are starting to get a bit scary for both of us. Jude is starting to have serious problems with her breathing & is also getting very frail. I'm having problems dealing with it. Watching the one you love most in the world fighting for breath with a look of genuine panic in her eyes because she can't express herself has to be the absolute pits when it comes to experiences. Closely followed of course by the feeling of powerlessness when you can't do anything to help her.
At the beginning of all this, I blithely assured myself that I would find the strength to cope with everything as it came to pass. but I'm finding it more & more difficult to get by each day. One of the hardest things I think is that at a time that is proving to be difficult, a dear friend & confidante has left the country. I can still talk to her on line, but it isn't the same as a sit down over a cup of coffee. On the bright side, we are anticipating the arrival of some new Friends from the states on Saturday. Also today, I made a good contact to get me out doing a few music gigs again. I have the room in the garage now to set up my gear, so all I have to do now is get motivated enough to not only do it, but also get my head in the right space to sit & practice for half an hour a day. Watch this space.
Anyway, with all due respects, I feel at the moment that I have enough problems on my own plate at the moment. Things are starting to get a bit scary for both of us. Jude is starting to have serious problems with her breathing & is also getting very frail. I'm having problems dealing with it. Watching the one you love most in the world fighting for breath with a look of genuine panic in her eyes because she can't express herself has to be the absolute pits when it comes to experiences. Closely followed of course by the feeling of powerlessness when you can't do anything to help her.
At the beginning of all this, I blithely assured myself that I would find the strength to cope with everything as it came to pass. but I'm finding it more & more difficult to get by each day. One of the hardest things I think is that at a time that is proving to be difficult, a dear friend & confidante has left the country. I can still talk to her on line, but it isn't the same as a sit down over a cup of coffee. On the bright side, we are anticipating the arrival of some new Friends from the states on Saturday. Also today, I made a good contact to get me out doing a few music gigs again. I have the room in the garage now to set up my gear, so all I have to do now is get motivated enough to not only do it, but also get my head in the right space to sit & practice for half an hour a day. Watch this space.
Sunday, February 20, 2011
Hot nights feeling shitty
It's still far too hot. At least at night there is a vestige of cooler weather, with the faintest hint of a breeze when I walk the dog late at night. Even Fattums has condescended to come on the odd occasion, much to the little Whippy Dog's concern. Last night was dreadful. For one, the dog got it into her head that she had to sleep between my pillows. Yes she does sleep on the bed. No I'm neither apologising for it or making excuses. The worst thing about hot nights is that it makes it even harder for Jude than usual. As it is she is quite noisy at night, but I have mostly gotten used to it, but the heat makes it a lot harder than usual for her. She is finding it really difficult even though she doesnt say anything. I can tell that it's doing her hard, because she has noticeably less energy during the day. The BIPAP during the day is working well. We went to see the Respiratory Specialist on Thursday. Struck a different guy than we have had in the past with a new take on stuff. He has prescribed an asthma inhaler for her. Not because of any help with her lungs, but because it helps dry her mouth out. The irony is that she is now on 3 different drugs, all prescribed because of their side effects.
I'm living in a state of excitement & expectation at the moment. I have a dear friend in Texas who, though we have written to each other since our early teens, have never met. her niece & her husband though, are coming to New Zealand next Saturday & are coming to stay with us for a few days. Can hardly wait.
I guess I will have to clean up a bit though. I have left sweeping the courtyard as the Magnolia tree that causes 90% of the mess was supposed to be coming down last week. Not before time either. Although they are very beautiful, the only place they should be grown is out in the middle of a paddock. Not where their branches overhang the roofs & yards of 2 houses. I won't be sorry to see it go. My vege garden is amazing me. The tomatoes have now grown higher than the stakes, with some beautiful trusses of fruit forming. I have pruned all the lower foliage right back in an effort to get as much sunshine onto the fruit as I can. I'm hopeful that I will get at least some fruit off them before winter sets in. Everything else, including the weeds is growing as well. I do pick away at it it most days, so it doesn't look too bad. That is if you squint & look over your left shoulder....
I'm living in a state of excitement & expectation at the moment. I have a dear friend in Texas who, though we have written to each other since our early teens, have never met. her niece & her husband though, are coming to New Zealand next Saturday & are coming to stay with us for a few days. Can hardly wait.
I guess I will have to clean up a bit though. I have left sweeping the courtyard as the Magnolia tree that causes 90% of the mess was supposed to be coming down last week. Not before time either. Although they are very beautiful, the only place they should be grown is out in the middle of a paddock. Not where their branches overhang the roofs & yards of 2 houses. I won't be sorry to see it go. My vege garden is amazing me. The tomatoes have now grown higher than the stakes, with some beautiful trusses of fruit forming. I have pruned all the lower foliage right back in an effort to get as much sunshine onto the fruit as I can. I'm hopeful that I will get at least some fruit off them before winter sets in. Everything else, including the weeds is growing as well. I do pick away at it it most days, so it doesn't look too bad. That is if you squint & look over your left shoulder....
Tuesday, February 08, 2011
Summer Nights
Can somebody please turn the thermostat down ? It's way too hot & sticky for both of us. Jude especially is having a lot of difficulty with it, needing both the fan & the evaporative cooler going all day to cope. Even with them, she is still getting a lot of phlegm on her lungs. We have tried Robitussin Chesty, but that doesn't seem to help. On another MN sufferers blog, we have found out that he uses his BIPAP for a couple of hours before bed, which helps break down the stringy bits in his chest & makes it easier for him to get rid of it, so we have tried that & yes, it works. The other thing that is helping is a nightly Amitryptelene tablet. It seems to help break down the phlegm & the soporific effect also helps her get a good nights sleep. Just remember, that if you are putting it through a PEG tube, that it needs a good half hour or more to dissolve in water. What I do is put the tablet into the syringe, half fill it with water & sit it upside down in a glass so it doesn't run out.
The garden is thriving. So are the weeds. I'm hopeful that with light showers forecast for today that it will get cool enough for me to be able to get out & start emptying out some of the pots around that only have weeds in them. My ultimate aim is to get round the shade house tidied sufficiently so that Jude can get out there in her wheelchair & potter round a bit if she wants to. There must be something wrong with me. I'm actually starting to enjoy doing a bit of gardening...
The garden is thriving. So are the weeds. I'm hopeful that with light showers forecast for today that it will get cool enough for me to be able to get out & start emptying out some of the pots around that only have weeds in them. My ultimate aim is to get round the shade house tidied sufficiently so that Jude can get out there in her wheelchair & potter round a bit if she wants to. There must be something wrong with me. I'm actually starting to enjoy doing a bit of gardening...
Monday, February 07, 2011
Thursday, February 03, 2011
How does your garden grow ?
If it's anything like mine at the moment, like a damn rocket. Those of you that are actually paying attention will remember when I planted everything in my vege garden. My tomato plants are nearly a metre high already & have got fruit formed. Sage & parsley are useable & I'm having trouble keeping up with my Kos lettuces. Mind you , there is a down side to this. The weeds are growing at the same rate. A friend has given me a surefire natural spray for Oxalis, (2 tablespoons of bicarb of soda per litre of water) & it works, so I have been hanging off hoeing until the wind died enough to try it. I think the fact that the air feels like the inside of a green house at the moment probably has something to do with this.
A dear friend sent us this link Written by a gentleman who also has MND, though from the tone of his writing, he is more advanced than Jude in some respects. We have gotten some really good hints & advice from it, So its definitely worth a look. Other than that, Jude is holding her own (just) although we are both praying for a drop in temperature & humidity. Winning llotto would be nice as well.
A dear friend sent us this link Written by a gentleman who also has MND, though from the tone of his writing, he is more advanced than Jude in some respects. We have gotten some really good hints & advice from it, So its definitely worth a look. Other than that, Jude is holding her own (just) although we are both praying for a drop in temperature & humidity. Winning llotto would be nice as well.
Friday, January 28, 2011
Come for a walk.....
Me & the little Whippy Dog go for a half hour walk every morning. We thought you might like to come with us..... The first bit is up our driveway.. It's always a good place to start I suppose.. I normally let her choose which way to go at the end of the drive. She normally turns right, because that is by far the most interesting way to go.
Invariably our first stop is next door, because thats where Woofy lives, & Woofy just adores the little Whippy dog...
We carry on up the hill. This fellow always says "good morning " to us in a big gruff voice. I don't know his name, because we haven't been formally introduced yet..
We carry on up the hill till we get to the old concrete bridge . From there the walk gets pretty as we follow the creek up through a newly established native tree reserve.
Then comes the Whippy Dog's favourite bit. We come out into about 5 acres of reserve. There are all manner of interesting things here for a little dog to sniff at....
Dad to check on every once in a while Horses to look at across the valley...
Up the steep driveway that makes Dad gasp
& wheeze & say rude words....
This is a ginger cat that swore at the little dog
& swatted her nose, thus proving that ginger
cats are the same all over... Attitude.......
The top at last
This pic shows the Race Course in the fore ground with the Waihou river behind & some of the gardens with the beautiful Hauraki Gulf as a back drop..
More of the town & the Gulf & our friend Joy's house..
The race course & on down the hill,....
Last straight heading for home & across the bridge...
Along to Aunty Irises place. She is nice. she gives us bones for the Whippy Dog...... Back into our street at last !
And home at last.. Are your feet sore ? Are you ready to sit down & relax over a cup of coffee? Have you got a good honest sweat up ? Yes to all 3 for me. The benefits ? A happy little dog, the knowledge that I have gotten some good exercise in & a nice clear mind ready to face whatever the day should choose to throw at me. Yes, we both enjoy our morning walk. We hope you have as well.
Tuesday, January 25, 2011
The rain, the Park & other things
We've had a few days rain here. Other parts of the country got a bit of a hammering what with floods & all, but we had it relatively good here. It was good steady rain that has really soaked in & is doing the vegetables a power of good. Sadly, the lawns & the weeds seem to have found new purpose as well, but hey, thats OK I guess. Give me something to do at the very least. The little dog is not, I have found, terribly enamoured of weather, having to be physically dragged out of the house on her lead if there is more than a heavy mist in the air. Once past the end of the drive, she will plod along with dogged determination, making it plain to all & sundry that she is NOT enjoying herself even though she is off the lead. As compensation, I took her up the hill to the park, where she usually gallops around sniffing all sorts of interesting smells, but noooo.. Not when its raining.. All the grass means when its raining is that you get your belly wet as well as your back. As for any potty stops ? Surely you jest sir. Damn she can save it up, but everything started working again with a vengeance yesterday morning. Today it was back to being interested again. Lots of places to stop & sniff that she had been too miserable to give attention to in the last few days. We have a small creek at the back of us, that lately has been that low that it hardly seemed to be flowing at all, with lots of green weed in it & all the detritus that uncaring folks seem to throw over their back fence rather than dispose of it properly. Its now flowing briskly on its way to the river, with the stream bed nice & clear & clean again, looking quite rejuvenated.
Sadly, the humidity is back. I don't enjoy it & it knocks Jude about rather badly. It hurts to see her struggling for air. The new cooling fan is a help, but bed times haven't been all that pretty lately. We have an appointment with our doctor on Wednesday to see if he can recommend something to clear the phlegm from her lungs, Joan from Hospice Waikato due in this afternoon, Sally the physio coming Thursday & a massage with Val on Friday. We have only just gotten back to going to Val. We used to go all the time before we went down South & it just sort of slipped by when we got back. Too much of everything else I guess.
We had a good weekend. Chris & Melanie, Jude's youngest son & his wife, came down & stayed Saturday night. It was his birthday, & they were good enough to come down & spend it with his Mum. They are being very supportive, which is wonderful. Well, I better go. precious pot plants to bring in now they have had their drink of rain, Mealybugs to spray for on a couple of them, tomato plants to tie up & cabbage tree leaves to rake up ready to mow the lawns when they dry out. Who said retirement was a life of leisure?
Sadly, the humidity is back. I don't enjoy it & it knocks Jude about rather badly. It hurts to see her struggling for air. The new cooling fan is a help, but bed times haven't been all that pretty lately. We have an appointment with our doctor on Wednesday to see if he can recommend something to clear the phlegm from her lungs, Joan from Hospice Waikato due in this afternoon, Sally the physio coming Thursday & a massage with Val on Friday. We have only just gotten back to going to Val. We used to go all the time before we went down South & it just sort of slipped by when we got back. Too much of everything else I guess.
We had a good weekend. Chris & Melanie, Jude's youngest son & his wife, came down & stayed Saturday night. It was his birthday, & they were good enough to come down & spend it with his Mum. They are being very supportive, which is wonderful. Well, I better go. precious pot plants to bring in now they have had their drink of rain, Mealybugs to spray for on a couple of them, tomato plants to tie up & cabbage tree leaves to rake up ready to mow the lawns when they dry out. Who said retirement was a life of leisure?
Saturday, January 22, 2011
Covers worth Listening to
I originally hit Youtube looking for Bob Dylan singing "Just like Tom Thumb's Blues," but it's not there. I really wanted to share it with you so I went looking through the covers. I was drawn, strangely enough to the Grateful Dead's version, but they were really stoned (surprise surprise) & the camera work was, at best, erratic. So I stumbled onto Brian Ferry. Not an artist I have ever really listened to for no particular reason, just never got around to it. Imagine my surprise to find that he has covered Dylan fairly extensively. First is JTTB. An incredibly moving & , to me, extremely desolate song that brings tears to my eyes every time I hear it. Ferry does a masterful version. Enjoy....
Next on the list is Positively 4th Street. Dylan wrote this when he was going through a particularly messy break up with Joan Baez & it's a particularly bitter song. Baez retaliated with "Diamonds & Dust." A somewhat gentler & remonstrative reply. Once again, a very faithful & sensitive rendition of this song.
Speaking of faithful,(Like the segue there !) I found this by Marianne Faithful herself. I have a lot of time & admiration for her. She managed to recover from a very severe downward spin in her life & come back to be even better than she was. I just love her rich smokey, nightclub too many cigarettes voice that is somehow reminiscent of a glass of 30 year old Artillery Port sipped slowly on a warm summers evening.. Enjoy
Next on the list is Positively 4th Street. Dylan wrote this when he was going through a particularly messy break up with Joan Baez & it's a particularly bitter song. Baez retaliated with "Diamonds & Dust." A somewhat gentler & remonstrative reply. Once again, a very faithful & sensitive rendition of this song.
Speaking of faithful,(Like the segue there !) I found this by Marianne Faithful herself. I have a lot of time & admiration for her. She managed to recover from a very severe downward spin in her life & come back to be even better than she was. I just love her rich smokey, nightclub too many cigarettes voice that is somehow reminiscent of a glass of 30 year old Artillery Port sipped slowly on a warm summers evening.. Enjoy
Monday, January 17, 2011
Reflections on Serendipity
The word serendipity, so we are led to believe, is one of the hardest words in the English language to translate. It owes its origins to the old Persian name for Ceylon, Serendip, which I think is a much nicer name than Sri Lanka, Don't you ? It has come to mean over the years the art of finding something that you aren't looking for, or didn't know was lost.
Just over 12 months ago, Jude lost her engagement ring. She was very upset about this. Out of all proportion to the monetary value of it. You see, when we got married, we were on a very tight budget & couldn't afford an engagement ring, so a few years went by before we could afford one. We got this particular ring from a lady in Pukekohe. It wasn't incredibly expensive, but it was very pretty & it just felt "right." haven't you ever bought something that just felt right? So, the sentimental value far outweighed the monetary value. You can imagine then how distressed Jude was to have lost it. Not that we didn't search diligently for it you understand. In fact, we turned the house upside down looking for it. I even resorted to taking all the u bends out & checking them, but to no avail. We have both made half hearted searches both on line & in shops for a replacement, but nothing seemed right, so we went without, but I don't think Jude ever stopped feeling bad about losing it.
So, here we were yesterday afternoon, sitting in the lounge, sheltering from the heat & thinking up excuses as to why we weren't doing anything when Colleen breezes in. Colleen is Jude's caregiver. She is also a long standing dear personal friend & the most infuriatingly kind hearted & optimistic sweetheart you could wish to meet. So in she comes looking brighter & cheerier than normal." Have you guys lost a ring?" says she. "Why yes we have ," says us, ( really just me saying it with Jude nodding her head vigorously) so she opens her hand & there is Jude's ring!
Turns out that some time ago, Jude lent Colleen her jar of ring cleaner & Colleen had only gotten around to using it yesterday. On giving it the customary shake, she heard it rattle. Investigation showed Jude's ring nestling safe & sound therein. So everybody's happy. Colleen is happy because she has made a friend happy. Jude is happy because she has her treasured ring back & I'm happy because she is happy.
Now if somebody could find the thermostat & knock back the temperature & the humidity.......
Just over 12 months ago, Jude lost her engagement ring. She was very upset about this. Out of all proportion to the monetary value of it. You see, when we got married, we were on a very tight budget & couldn't afford an engagement ring, so a few years went by before we could afford one. We got this particular ring from a lady in Pukekohe. It wasn't incredibly expensive, but it was very pretty & it just felt "right." haven't you ever bought something that just felt right? So, the sentimental value far outweighed the monetary value. You can imagine then how distressed Jude was to have lost it. Not that we didn't search diligently for it you understand. In fact, we turned the house upside down looking for it. I even resorted to taking all the u bends out & checking them, but to no avail. We have both made half hearted searches both on line & in shops for a replacement, but nothing seemed right, so we went without, but I don't think Jude ever stopped feeling bad about losing it.
So, here we were yesterday afternoon, sitting in the lounge, sheltering from the heat & thinking up excuses as to why we weren't doing anything when Colleen breezes in. Colleen is Jude's caregiver. She is also a long standing dear personal friend & the most infuriatingly kind hearted & optimistic sweetheart you could wish to meet. So in she comes looking brighter & cheerier than normal." Have you guys lost a ring?" says she. "Why yes we have ," says us, ( really just me saying it with Jude nodding her head vigorously) so she opens her hand & there is Jude's ring!
Turns out that some time ago, Jude lent Colleen her jar of ring cleaner & Colleen had only gotten around to using it yesterday. On giving it the customary shake, she heard it rattle. Investigation showed Jude's ring nestling safe & sound therein. So everybody's happy. Colleen is happy because she has made a friend happy. Jude is happy because she has her treasured ring back & I'm happy because she is happy.
Now if somebody could find the thermostat & knock back the temperature & the humidity.......
Friday, January 14, 2011
Not much change
It's still bloody hot. Well actually, more humid than hot, & I don't like humid. Jude is firmly ensconced in front of the tellie watching tennis. Me , I spend a lot of time watching paint dry, or grass grow. Not a big fan of tennis really, but it delays installing the new point & click games I have been given, thus keeping her occupied for a lot longer. I took her to the doctors yesterday. It seems she has been having dizzy spells since before Xmas. She didn't want to worry me ! Therefore she didn't tell me. So here was I fretting my heart out because I thought she was going downhill fast. Its a hardy annual argument/discussion that we have from time to time. i can't help her if she doesn't tell me what is wrong. The doctor seems to think that it might be due to electrolytic imbalances in her blood, so we have had blood tests done & should find out Tuesday or so.
As you know, I have been gardening lately. I keep telling myself that its good for the soul. I might even believe it soon. My little vegie garden has got useable parsley already & the cos lettuces are very close to being able to clip the odd leaf for a salad as well. I spent about half an hour outside, putting up a runner wire for the grapevine, running a hoe through my vegie garden to get rid of the Oxalis, (A never ending job) & having a look in the shade house to see what is in there in pots that I can transplant into the gardens. There is quite a bit actually. That I guess will be the next task. Its really quite pleasant out there now that the grape vine has grown enough to provide pleasant summer shade. All I need to do is empty some of the pots to improve access. Its actually quite pleasant out there with a little dog dutifully trailing behind & one of the Ginger Ninja's in attendance, (Fattums of course) strictly in an administrative role of course.
As you know, I have been gardening lately. I keep telling myself that its good for the soul. I might even believe it soon. My little vegie garden has got useable parsley already & the cos lettuces are very close to being able to clip the odd leaf for a salad as well. I spent about half an hour outside, putting up a runner wire for the grapevine, running a hoe through my vegie garden to get rid of the Oxalis, (A never ending job) & having a look in the shade house to see what is in there in pots that I can transplant into the gardens. There is quite a bit actually. That I guess will be the next task. Its really quite pleasant out there now that the grape vine has grown enough to provide pleasant summer shade. All I need to do is empty some of the pots to improve access. Its actually quite pleasant out there with a little dog dutifully trailing behind & one of the Ginger Ninja's in attendance, (Fattums of course) strictly in an administrative role of course.
Saturday, January 08, 2011
It aint half hot mum......
Damn but its hot here. I have actually refilled the spa pool & kept the temperature down to about blood warmth level, just to cool off. Jude has been doing it very hard. She has actually resorted to using her BIPAP machine during the day, but its awkward. Very difficult to either read or watch telly while wearing it. On Attilla's suggestion, I went looking for a dehumidifier, but with no joy. I did however find just purely by chance at the Red Shed, A thing called an evaporative cooler. Basically, you put ice & cold water in the top & cool air gets blown out the bottom. It helps immensely, for which I am very grateful as she was finding it very hard to cope..
We have had Chris & Melanie staying with us for a few days. Its been an absolute delight. Mel is one of these folk who just have to be doing something all the time. It's been wonderful. The washing has been done, hung out, brought in & folded, the kitchen gets miraculously tidied. All those hundred & one jobs that you don't realise how much you share until one of you is too ill to play their part. Christopher came down to help me tidy up the garden. Its been that hot, that we have just dashed out in the early evening to get about an hours worth done. Its been enough though. The gardens are now cleared to the point where I can see what I'm doing. I'm not sure what I'm going to plant in them though, but ground cover is going to be fairly high on my list, I don't like weeding.
But, they have gone home now sadly, so its back to the grind again. I guess I better go. Vegetables to water, Sherman to put away, washing to bring in, tea to cook, sweat to drip. God, I lead a busy life..
We have had Chris & Melanie staying with us for a few days. Its been an absolute delight. Mel is one of these folk who just have to be doing something all the time. It's been wonderful. The washing has been done, hung out, brought in & folded, the kitchen gets miraculously tidied. All those hundred & one jobs that you don't realise how much you share until one of you is too ill to play their part. Christopher came down to help me tidy up the garden. Its been that hot, that we have just dashed out in the early evening to get about an hours worth done. Its been enough though. The gardens are now cleared to the point where I can see what I'm doing. I'm not sure what I'm going to plant in them though, but ground cover is going to be fairly high on my list, I don't like weeding.
But, they have gone home now sadly, so its back to the grind again. I guess I better go. Vegetables to water, Sherman to put away, washing to bring in, tea to cook, sweat to drip. God, I lead a busy life..
Tuesday, January 04, 2011
Oh, P.S.
We got a pleasant surprise when we came back from Auckland at Xmas.. A sort of a late Christmas present I guess you could say. This was in bloom. pretty isn't it ? And, like all cacti, ephemeral. It only lasted a day or two, but absolutely stunning while it did.. Enjoy..

Oh, & a dear friend sent me this one suggesting I should modify Sherman accordingly... Cute Cwnda, cute...
Oh, & a dear friend sent me this one suggesting I should modify Sherman accordingly... Cute Cwnda, cute...
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