Issues with dad's swallowing confirmed.

[Gwendy1]

Gwendy I am so sorry for your emotional pain and your Dad's physical pain. You can ask that there are no more antibiotics and that you/he want him to be kept comfortable and pain and discomfort free and that you insist he is referred for palliative care. That is if you want to - it is a hard decision and you would have to stand your ground but his quality of life at the moment is very poor from what you are saying.
Thinking of you and sending hugs and love
xxx

Fizzie, I absolutely know that I will have to make a stand. The nearer I get to doing it, the more I feel the enormity of doing so. I was in a similar position with my mum, fighting for everything.. it was easier in that mum was fighting too, mentally strong. I feel very alone fighting this one. Don't get me wrong, my brothers agree, but I'm the 'voice' if you know what I mean. I'm watching my dad suffer daily. God alone knows how he feels when he's alone, struggling to get a breath. As I've written to Red, I plan to meet GP. Hopefully, something positive will come out of it. Surely, there must be something to make him more comfortable. Thank you, your comments make me feel stronger! X


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[Red66]

Oh Gwendy you sound so stressed out and I completely get why. You 'ramble' all you like I am happy to listen. I know how I felt when I was going through it and real life people that surrounded me didn't 'get it'. Do you have poa for your Dad? I would think it may be easier to see GP at home if you don't but you should be able to get an appointment at surgery if you do have poa surely?! Keep on going you're doing great you know, you really are xxx

 

[Gwendy1]

Oh Gwendy you sound so stressed out and I completely get why. You 'ramble' all you like I am happy to listen. I know how I felt when I was going through it and real life people that surrounded me didn't 'get it'. Do you have poa for your Dad? I would think it may be easier to see GP at home if you don't but you should be able to get an appointment at surgery if you do have poa surely?! Keep on going you're doing great you know, you really are xxx

I only have financial poa for dad- organised by my mum several years ago when she was dying. Mum and I just thought that dad would always have some level of capacity, I guess... it was beyond our imagination what would happen-learning curve for anyone else who ever happens to read this. Also, I think my mum thought I was such a 'strong' person that I'd take anyone on, so it wouldn't be an issue. She was right, to an extent! (as usual ). But, I'm another 2years down this line, and I'm getting so tired, frustrated, stressed and sad. ? None of which is dad's fault, so.. time to stop feeling sorry for myself and step- up!! Or at least try. And keep trying. Thanks, Red. ❤️️X


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[Red66]

You are trying and you keep pushing back to get things right for your Dad. So your Mum was right wasnt she? Mother knows best! Keep pushing to meet with the GP. Xx

 

[Gwendy1]

This evening, dad had a new, and very obvious, 'twitch' on the left side of his face... also, when I was giving him his drink(thickened obviously) it ran out of that side. His eyes were fine tho, really bright. And he ate all his dinner! He looked more alert than I'd seen him for ages. So, he's holding his own. As always, I gave him a shave, applied all his lotions and potions, gave him a manicure. Looked in his blue eyes and saw total confusion and fear(?)... hate this illness.


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[canary]

((((hugs)))) Gwendy.
I dont often post on your thread, but do read it and I wondered how you and your dad were doing.
Its such a roller coaster isnt it?

 

[Red66]

Hi Gwendy, Dad used to get a twitch and it was also on his left side. It concerned the nurse at the home one time as it coincided with a temperature. But it was then put down to involuntary muscles jerks / movement's. His eye was even twitching with it. Very strange. I remember 'the fear' in Dads eyes too, very upsetting and alot to take it. Was he choking as much when he ate/drank? X

 

[Gwendy1]

Hi Gwendy, Dad used to get a twitch and it was also on his left side. It concerned the nurse at the home one time as it coincided with a temperature. But it was then put down to involuntary muscles jerks / movement's. His eye was even twitching with it. Very strange. I remember 'the fear' in Dads eyes too, very upsetting and alot to take it. Was he choking as much when he ate/drank? X

Hi red, twitch still there.. dad's coughing/choking far less dramatic past couple of days-still doing it, but quietly, if that makes sense. I really don't know anymore. He's changed, that's all I know. I can see it, but I am accepting that he's going to fight all the way..in his way. I realised tonight that he hasn't smiled at all recently. Just stares at me. I still pray for peace for him. No one can know that empty, confused, scared look in someone's eyes, until it's someone they love who has it. Love to you, and your family. X


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[Gwendy1]

((((hugs)))) Gwendy.
I dont often post on your thread, but do read it and I wondered how you and your dad were doing.
Its such a roller coaster isnt it?

Thank u, Canary.❤️️a much needed hug. Rollercoaster indeed. Love to you too. Xx


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[Red66]

My Dad became too weak to cough, could see he was trying to though but he didn't have it in him to get it out. I am thinking of you all the time at this difficult period of watching and waiting. I pray for peace for your lovely Dad, anything is better than this. It is surprising just how strong they are, even though they are at their weakest Xx

 

[Gwendy1]

My update (for myself, really) is that dad appears to have another chest infection. I'm tracking our progress here, or lack of it,to be more accurate. When dad has an infection, he speaks! It's bizarre really. So tonight he was answering me-said he 'didn't feel too grand'. His chest is rattling away, but he's still eating and drinking/ coughing and choking. I could never have imagined such an awful 'stage' that seemingly will go on for ever. So very sad that such a lovely, caring and dignified man should suffer like this. Love to all who are travelling this road. X


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[Red66]

Hi Gwendy, you keep tracking. You are at such an awful stage, your Dad appears to be strong as an ox! Another infection, I feel so sorry for you both, it's an awful lot to deal with, I know, trust me. I have no wise words, but I just wanted to give you some support, you know I am always on the look out for your posts, I fear what's next. Thinking of you at this cruel time. xx

 

[Gwendy1]

I have never hated this evil illness more than I do right now. Just left dad, he's trying to cough and can't. He's trying to sit up in his chair, and can't. He's having a horrible insight into his life, and says he's 'lost' and tears rolling down his face. He knew me, and my friend. He said 'I'm lost' several times. He doesn't really speak anymore. I tried my best to reassure him, and have now left him because I'm crying like a baby and he really doesn't need that kind of 'support', that's for sure. Nurses keeping an eye on him.


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[Red66]

Oh Gwendy, what a sad post, I am sorry I didn't see it much sooner. Xx. Your poor Dad and poor you having to watch this cruel cruel illness, and they say there is a God. I don't get it because if there is he isn't working his magic. I wish for your Dad's own sake that he finds peace soon, it must be frightening to not know what is going on. You did the right thing to leave when you were so upset. It's good to cry, let it out and then you can get yourself together again and be there for him. xx

 

[Gwendy1]

Oh Gwendy, what a sad post, I am sorry I didn't see it much sooner. Xx. Your poor Dad and poor you having to watch this cruel cruel illness, and they say there is a God. I don't get it because if there is he isn't working his magic. I wish for your Dad's own sake that he finds peace soon, it must be frightening to not know what is going on. You did the right thing to leave when you were so upset. It's good to cry, let it out and then you can get yourself together again and be there for him. xx

Hey, Red, thank you. Very good advice about having a good cry..it was overdue, but believe me, I went for it! Back at the home today. Dad couldn't eat his dinner, too sleepy. That was a relief,to be honest. He's peaceful when he's sleeping. And I don't think I could've taken a repeat of yesterday's horrible visit. I've exhausted all avenues for dad now, I have to accept that this IS how his life will be, until he is freed from this existence. I hope that doesn't offend anyone. I love my dad dearly, always have. X


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[Hezzy]

Hugs to you

Gwendy you've been fighting so hard, having a good cry is probably well overdue. This is so hard but you know you've done and are doing all you can.
Hugs to you xxx

 

[Red66]

Your posts speak loudly about how much you love your Dad and how much you do for him. I was grateful when my Dad was asleep, all that coughing and choking, trying to think and move about it must be really tiring. I don't think your post will offend anyone at all, everyone wants their loved one to find peace one way or another, that's for sure. Make sure you are getting rest otherwise you will be at breaking point, trust me, I know xx

 

[Gwendy1]

Fortunately, no recurrence of dad having horrible insight. He's back into sleepy mode. The staff got the out of hours doctor out yesterday because he wasn't eating and his hand was swollen and black. He remains much the same, no better, no worse. Getting more blood tests done... Why? I don't really know! ..he wanted to eat today. Helped him with his dinner, then back to sleep- so awake for 20mins. He reminds me of my mum- she famously insisted that my partner cooked her a lamb chop, and ate it with her eyes shut(!) while waiting for ambulance to the hospice..from which, I have to say, she was discharged back home twice! He's in no pain, that is the main thing- all this other stuff aside. X


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[canary]

(((hugs)))) gwendy. Im glad that at least he is not in any pain and is sleeping most of the time.

 

[Red66]

Just saying hi and let you know that I am thinking of you. Glad to hear he is pain free xx