18 - 5 - 19
Saturday morning, 11am, I have been up for a few hours waiting and listening for a sign that he is awake too. The familiar violent dry reaching sound tells me he is and that he needs some anti-nausea meds . . . me scurrying off to mix up a batch of stuff to put in a syringe . . . someone needs to develop Pantoprazole in a powdered form as the granules don't like being put in a syringe, the little fuckers stick to the sides. Pantoprazole is for his stomach lining.
Being home and on the mend hasn't gone quite how we wanted. He is supposed to be having 2 bags of 1 litre feeds each day. 100mls per hour. So 20 hours of being attached to the pole dancing machine. His water intake on top of that is supposed to be 2.97 litres. Mostly via his tube but he is supposed to try sipping as well. He is struggling to get that amount in. Of both. We have had 2 days of no feed at all and the most water in one day he has managed is 1 litre. More like around 720mls. He is really struggling with dry reaching, coughing, extremely sore throat and me nagging. So as you can imagine he is not healing in leaps and bounds. His dietician, speech pathologist and oncologist would all like him to go to ED just so he can be hooked up to a 24hr drip of fluids so that he stops being dehydrated, but he flatly refuses. So we are having a bit of a battle. We are having arguments. I am bursting into tears. He is frustrated with me suggesting he should go, and gets very angry when I suggest he try some more water or a bit of pureed food etc. All the professionals have given us guidelines and plans to try and follow but for now we are at a standstill. He must try to swallow more as his muscles will forget how to otherwise. Being dehydrated has all kinds of effects on his body and mind. I reached out to my sister a few days ago as she went through the same issues we all had with our dad and she is well educated in the area now, as am I, so I thought he might listen to her. He did listen and he was very thankful for the visit and the 3 different types of custards said sister made for him. She and I went shopping and bought almost every flavour of pureed baby food we could carry so he had a selection to try. We bought dark grape juice too which we were told helps to thin the mucous in your mouth. Being dehydrated causes thick mucous in your mouth. So we are now fully stocked with all manner of things for him to sip on to help with his swallowing . . . . but how to get him to do it? . . . I have a close friend who's son has endured the PC battle too and he went through a stage of feeling out of control, so to gain back some control he became stubborn in certain situations. Another wise friend told my custard making sister the same thing . . maybe this is his way of having total control over what is happening to him day to day. Up til now he has had no control. Interesting. Doesn't stop me feeling even more out of control though. Geezus, what to do. How to go about my day, each day. These are some of the feelings and thoughts I have been having more recently. Self self self I know. They may seem very negative or irrational or fatalist, however they have been real.
1. I cannot sit here and watch you wither away and die.
2. You are so skinny and weak, how will you get better if you don't try.
3. For Fuck's Sake! just do it!
4. My poor man, how can I help you sweetheart? here have some of this, or this, or this, or this, or this, maybe this? Do you need anything? A drink? Some pain relief? Some tissues? Some sleep? Are you warm enough?
5. Off to the bathroom to be alone and sob, then make myself look fine and come out.
6. Let me out of here! off we go daughter and I to the Op Shops for some fun.
7. I can't leave the house because he needs me too much.
8. What if he is deliberately doing this so he doesn't get better. Like my dad did in the end.
9. Let's treat this journey like a Motorcycle Enduro. This is stage one. You have a goal to finish. You can do it. You were a fierce competitor.
10. Right. That's it I am now backing off. You can control your own fate.
11. What a nasty wife and partner I am being. How dare I. How would I feel in his shoes. Be more empathetic.
12. Ok we can do this together. Gently gently. Patronise patronise.
13. Number 12 doesn't work at all.
14. Maybe I am expecting too much.
15. He will be all back to normal at christmas. Won't he . .
16. I shouldn't be thinking all these things. Just be positive all the time, he needs you to be.
16.5 Smile.
17. I just give up.
. . . . . . . . he has regained his sense of humour which is wonderful. Delightful. And a pain in the arse as most of you know. It's nice to be able to have a fun conversation with him again. He can't talk for long, and for everyone that has called him, he feels sorry that he hasn't been able to answer. Talking promotes coughing, coughing promotes violent dry reaching . . . . at the moment. This will change over the coming weeks and months. So you will be able to chat to him at some point.
We have been discussing for some time now "when should we add another four legged person to the family?". We have always had 2 dogs, or a dog and a cat, and Vader really needs a companion other than the 2 of us. Also having one dog means that one of us misses out on dog cuddles, and it's usually him as Vader is attached to me a bit obsessively. I have been researching rescue sites for a few months thinking that we would look at adopting when he is a bit more able to get around the house and do a bit more physically. Small dogs are highly sought after so when one particularly cute little girl popped up in googleland last week I started a conversation with her rescuer. Tilly was surrendered by her owner because she was barking all day long and the council was getting complaints. She was left alone outside most the time, not even toilet trained at 5 years old. No-one played with her or gave her any attention it seemed. We were "interviewed" last night at our forever home by her rescuer Susan, and after about an hour of chatting she said "Tilly is in the car you know". We weren't expecting that. So Tilly came in to meet Vader, first outside, then inside . . . Some animals are just meant to be with certain families aren't they . . . . Tilly slotted in like a jigsaw piece. Vader and she didn't argue at all. They just did the initial canine sniffy thing and went on their "only child" ways. Tilly adores humans and spent the next hour or so wagging her tail lots and visiting each of us in turn. She took a shine to our daughter and her man and met their cat Miss Charlotte Recluse Resting Bitch Face Fluff Bum . . . . My man fell in love with her as did I. After some very quick decision making and full approval from Susan, Tilly is now having a 2 week trial sleepover at our forever home.
Last night went really well. 4 of us in the big bed no dramas. No messes on the floor . . outside for a big wee, breakfast went smooth, too easy. She and Vader shared my blanketed lap on the foggy verandah for morning coffee and bird feeding activities while we waited for him to wake up.
He has just now come out to join us and Tilly is happily sitting on his lap . . he is very happy. I think Tilly has come along to help us in this journey. Thank you Tilly . . . I have a smile on my face right now . . .
FUPC
Saturday morning, 11am, I have been up for a few hours waiting and listening for a sign that he is awake too. The familiar violent dry reaching sound tells me he is and that he needs some anti-nausea meds . . . me scurrying off to mix up a batch of stuff to put in a syringe . . . someone needs to develop Pantoprazole in a powdered form as the granules don't like being put in a syringe, the little fuckers stick to the sides. Pantoprazole is for his stomach lining.
Being home and on the mend hasn't gone quite how we wanted. He is supposed to be having 2 bags of 1 litre feeds each day. 100mls per hour. So 20 hours of being attached to the pole dancing machine. His water intake on top of that is supposed to be 2.97 litres. Mostly via his tube but he is supposed to try sipping as well. He is struggling to get that amount in. Of both. We have had 2 days of no feed at all and the most water in one day he has managed is 1 litre. More like around 720mls. He is really struggling with dry reaching, coughing, extremely sore throat and me nagging. So as you can imagine he is not healing in leaps and bounds. His dietician, speech pathologist and oncologist would all like him to go to ED just so he can be hooked up to a 24hr drip of fluids so that he stops being dehydrated, but he flatly refuses. So we are having a bit of a battle. We are having arguments. I am bursting into tears. He is frustrated with me suggesting he should go, and gets very angry when I suggest he try some more water or a bit of pureed food etc. All the professionals have given us guidelines and plans to try and follow but for now we are at a standstill. He must try to swallow more as his muscles will forget how to otherwise. Being dehydrated has all kinds of effects on his body and mind. I reached out to my sister a few days ago as she went through the same issues we all had with our dad and she is well educated in the area now, as am I, so I thought he might listen to her. He did listen and he was very thankful for the visit and the 3 different types of custards said sister made for him. She and I went shopping and bought almost every flavour of pureed baby food we could carry so he had a selection to try. We bought dark grape juice too which we were told helps to thin the mucous in your mouth. Being dehydrated causes thick mucous in your mouth. So we are now fully stocked with all manner of things for him to sip on to help with his swallowing . . . . but how to get him to do it? . . . I have a close friend who's son has endured the PC battle too and he went through a stage of feeling out of control, so to gain back some control he became stubborn in certain situations. Another wise friend told my custard making sister the same thing . . maybe this is his way of having total control over what is happening to him day to day. Up til now he has had no control. Interesting. Doesn't stop me feeling even more out of control though. Geezus, what to do. How to go about my day, each day. These are some of the feelings and thoughts I have been having more recently. Self self self I know. They may seem very negative or irrational or fatalist, however they have been real.
1. I cannot sit here and watch you wither away and die.
2. You are so skinny and weak, how will you get better if you don't try.
3. For Fuck's Sake! just do it!
4. My poor man, how can I help you sweetheart? here have some of this, or this, or this, or this, or this, maybe this? Do you need anything? A drink? Some pain relief? Some tissues? Some sleep? Are you warm enough?
5. Off to the bathroom to be alone and sob, then make myself look fine and come out.
6. Let me out of here! off we go daughter and I to the Op Shops for some fun.
7. I can't leave the house because he needs me too much.
8. What if he is deliberately doing this so he doesn't get better. Like my dad did in the end.
9. Let's treat this journey like a Motorcycle Enduro. This is stage one. You have a goal to finish. You can do it. You were a fierce competitor.
10. Right. That's it I am now backing off. You can control your own fate.
11. What a nasty wife and partner I am being. How dare I. How would I feel in his shoes. Be more empathetic.
12. Ok we can do this together. Gently gently. Patronise patronise.
13. Number 12 doesn't work at all.
14. Maybe I am expecting too much.
15. He will be all back to normal at christmas. Won't he . .
16. I shouldn't be thinking all these things. Just be positive all the time, he needs you to be.
16.5 Smile.
17. I just give up.
. . . . . . . . he has regained his sense of humour which is wonderful. Delightful. And a pain in the arse as most of you know. It's nice to be able to have a fun conversation with him again. He can't talk for long, and for everyone that has called him, he feels sorry that he hasn't been able to answer. Talking promotes coughing, coughing promotes violent dry reaching . . . . at the moment. This will change over the coming weeks and months. So you will be able to chat to him at some point.
We have been discussing for some time now "when should we add another four legged person to the family?". We have always had 2 dogs, or a dog and a cat, and Vader really needs a companion other than the 2 of us. Also having one dog means that one of us misses out on dog cuddles, and it's usually him as Vader is attached to me a bit obsessively. I have been researching rescue sites for a few months thinking that we would look at adopting when he is a bit more able to get around the house and do a bit more physically. Small dogs are highly sought after so when one particularly cute little girl popped up in googleland last week I started a conversation with her rescuer. Tilly was surrendered by her owner because she was barking all day long and the council was getting complaints. She was left alone outside most the time, not even toilet trained at 5 years old. No-one played with her or gave her any attention it seemed. We were "interviewed" last night at our forever home by her rescuer Susan, and after about an hour of chatting she said "Tilly is in the car you know". We weren't expecting that. So Tilly came in to meet Vader, first outside, then inside . . . Some animals are just meant to be with certain families aren't they . . . . Tilly slotted in like a jigsaw piece. Vader and she didn't argue at all. They just did the initial canine sniffy thing and went on their "only child" ways. Tilly adores humans and spent the next hour or so wagging her tail lots and visiting each of us in turn. She took a shine to our daughter and her man and met their cat Miss Charlotte Recluse Resting Bitch Face Fluff Bum . . . . My man fell in love with her as did I. After some very quick decision making and full approval from Susan, Tilly is now having a 2 week trial sleepover at our forever home.
Last night went really well. 4 of us in the big bed no dramas. No messes on the floor . . outside for a big wee, breakfast went smooth, too easy. She and Vader shared my blanketed lap on the foggy verandah for morning coffee and bird feeding activities while we waited for him to wake up.
He has just now come out to join us and Tilly is happily sitting on his lap . . he is very happy. I think Tilly has come along to help us in this journey. Thank you Tilly . . . I have a smile on my face right now . . .
FUPC
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