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.
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