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Issues with dad's swallowing confirmed.

stanleypj

Registered User
Dec 8, 2011
10,707
North West
I've only just caught up with this thread and just wanted to say to Gwendy and others in the same position that you have my heartfelt sympathy. We might recently have been where you are now and I'm sure we will be eventually, but I can still barely imagine how you must be feeling. I wish you the strength that we shall all need some day. It's such an appalling condition.
 

Gwendy1

Registered User
Feb 9, 2016
414
Glasgow
I've only just caught up with this thread and just wanted to say to Gwendy and others in the same position that you have my heartfelt sympathy. We might recently have been where you are now and I'm sure we will be eventually, but I can still barely imagine how you must be feeling. I wish you the strength that we shall all need some day. It's such an appalling condition.
Thank you, Stanley. Strength is what we all need. I wish it for all here who are struggling too. X


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annii1

Registered User
Jul 5, 2012
194
west sussex
Hello Gwendy. My heartfelt best wishes go to you and your family. I am
in a similar position as you. My poor mum is in a similar state it's so hard and difficult to cope with x
 

Gwendy1

Registered User
Feb 9, 2016
414
Glasgow
So.. GP saw dad today at CH. He has yet another chest infection.. More antibiotics. She's happy with dad continuing to choke, cough, aspirate because.. well, I don't know. Maybe because it's not her dad. She knows it's distressing him, but she feels he's not 'ready' for palliative care??? What does that even mean.? My understanding of palliative care is that you focus on reducing pain (dad isn't in pain, so fair enough) and distressing symptoms towards the end of life. Dad is distressed, every day, every time he eats or drinks. I'm beginning to despair... this is a brick wall. Please, anyone got any suggestions??? I need to know I've tried everything. Despairing.


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Red66

Registered User
Feb 29, 2016
363
Oh Gwendy what a nightmare. Bet you feel like butting a wall, it's so frustrating and distressing. When Dad was at this stage they stopped his meds and actually stopped his food, only giving fluids, he reduced these naturally himself. It's tough because I know your Dad stopped meds earlier in the year. Does he still respond to antibiotics? It sadly may be a case over time when he doesn't respond and that's when they say to start palliative care. So sorry Gwendy xxx
 

The Chewtor

Registered User
Feb 6, 2016
295
64
Gillingham, Kent
Hi G, I know you are despairing and can do nor say anything to help with that except to say you must not, and should not ,be despairing in any way about what you have done or are doing. You have never flinched away from ANY obstacle thrown in your path. It is just not possible for you to have done more, invested more of yourself, put in more time, heart, love, devotion.
Despair that nothing is being done or even maybe can be done but do not despair about you......... be proud, be sure of yourself and your performance through-out. Dad is!!!!!



Wayne
Thinking of you all, yourself, Dad and S.

Love to you xxx
 

Gwendy1

Registered User
Feb 9, 2016
414
Glasgow
Oh Gwendy what a nightmare. Bet you feel like butting a wall, it's so frustrating and distressing. When Dad was at this stage they stopped his meds and actually stopped his food, only giving fluids, he reduced these naturally himself. It's tough because I know your Dad stopped meds earlier in the year. Does he still respond to antibiotics? It sadly may be a case over time when he doesn't respond and that's when they say to start palliative care. So sorry Gwendy xxx
I think that is the case, Red, we have to wait. He doesn't respond to antibiotics, just finished one course, then waits for the next, really. But, he does 'keep going' in a semi unresponsive state. Then he wakes, eats half a side plate of dinner, chokes- and goes back to sleep- chest gurgling. I'm so angry that he is suffering like this. No matter how many reports you read about managing this stage, it doesn't happen in real life, across the board, obviously. I'm so glad your dad had professionals who were 'on the ball'. It gives me hope. Thank you. Xx


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Gwendy1

Registered User
Feb 9, 2016
414
Glasgow
Hi G, I know you are despairing and can do nor say anything to help with that except to say you must not, and should not ,be despairing in any way about what you have done or are doing. You have never flinched away from ANY obstacle thrown in your path. It is just not possible for you to have done more, invested more of yourself, put in more time, heart, love, devotion.
Despair that nothing is being done or even maybe can be done but do not despair about you......... be proud, be sure of yourself and your performance through-out. Dad is!!!!!



Wayne
Thinking of you all, yourself, Dad and S.

Love to you xxx
Thank you, Wayne. And don't you worry, I'm not finished fighting for dad !- just don't know how to go about it yet. Frustrating, upsetting, but ...life's like that sometimes.?❤️love to you too. Xx


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Red66

Registered User
Feb 29, 2016
363
Could you ask for a second opinion? In terms of antibiotics I mean, if they are not working have they informed you what's next? Has a 'just in case' pack been prescribed at all? It's so sad xx
 

Gwendy1

Registered User
Feb 9, 2016
414
Glasgow
Could you ask for a second opinion? In terms of antibiotics I mean, if they are not working have they informed you what's next? Has a 'just in case' pack been prescribed at all? It's so sad xx
Hi Red, yes dad has those meds ready- since his last hospital admission in January. I'm counting around 5 lots of nasty chest infections/antibiotics since then.. and not counting that even when he's not officially diagnosed with one, he's been struggling due to the extensive lung damage from the pneumonia. Dad was never a smoker, and was a really active guy, so I think that's got him thru.(I'd have been long gone!)The GP told the staff dad should still be eating/drinking because he was able to. I've decided to see how this week goes, and attend the next 'surgery' on Monday. I'm thinking of recording dad when he's eating, to show the GP then??? In the meantime, dad was visited by his lovely oldest friends from abroad today, who left in tears having witnessed him choking over a thickened juice. Sorry for long postX


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The Chewtor

Registered User
Feb 6, 2016
295
64
Gillingham, Kent
Don't be so silly my dear friend, sorry about long post, as if!!!! we all want and need to know what is going on so whenever you get half a second, again 'as if', please post more xxx
:)
 

Red66

Registered User
Feb 29, 2016
363
Oh love I feel for you I really do. That's so hard for you. Good idea about filming your dad eating/drinking, I can't imagine them being present at meal times. Being 'able to' would the GP want to continue eating themselves when they were choking all the time, it's like force feeding in a way. My Dad still used to open his mouth like he wanted it, that's what I couldn't understand, when one tip of a spoon could make you choke. His friends must have had a shock seeing him choke, it's not something you would know about unless you had lived with this. You must be so stressed out, throwing you a big hug and some strength to keep you going xxx
 

Gwendy1

Registered User
Feb 9, 2016
414
Glasgow
Thanks cookie. I'm keeping on, keeping on. Whoever would've known this would all happen in life? Nightmare. Love to you and your family. ❤️X


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Red66

Registered User
Feb 29, 2016
363
Hi love, did you manage to record your dad at all with any success? Hope you're doing ok xx
 

Gwendy1

Registered User
Feb 9, 2016
414
Glasgow
Hi love, did you manage to record your dad at all with any success? Hope you're doing ok xx
I'm doing ok, thanks. Dad had a couple of days where he looked brighter. Then yesterday and this evening he was really sleepy, chest sounds absolutely awful. Antibiotics course finished yesterday too. Sadly, it was so easy to record dad for the doctor, the choking is inevitable almost every mouthful. He was so tired yesterday he missed his lunch and dinner, they couldn't wake him up, I tried and failed too. The Gp review tomorro, I'm at a loss as to what they'll say- probably more antibiotics..?? His chest sounds worse than before he started them, so sad.


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Red66

Registered User
Feb 29, 2016
363
Oh dear so sorry to hear that. Sadly there may come a point where they no longer administer anti biotics, that was the case with my dad. They said if he gets a chest infection or pneumonia again we will keep him comfortable. Didn't get that far to be fair. I was told that his saliva was just trickling straight down to his lungs. That's when they gave up feeding him, that's how it seemed, made me mad in a way but I had to let go and feeding him was killing him anyway. It's so so hard. TRY and stay strong. Watching them choke is frightening, you can't win. Thinking about you all the time and looking out for your posts. Let me know how things go at GP review. Xx
 

fizzie

Registered User
Jul 20, 2011
2,730
I'm doing ok, thanks. Dad had a couple of days where he looked brighter. Then yesterday and this evening he was really sleepy, chest sounds absolutely awful. Antibiotics course finished yesterday too. Sadly, it was so easy to record dad for the doctor, the choking is inevitable almost every mouthful. He was so tired yesterday he missed his lunch and dinner, they couldn't wake him up, I tried and failed too. The Gp review tomorro, I'm at a loss as to what they'll say- probably more antibiotics..?? His chest sounds worse than before he started them, so sad.


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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
 

Gwendy1

Registered User
Feb 9, 2016
414
Glasgow
Oh dear so sorry to hear that. Sadly there may come a point where they no longer administer anti biotics, that was the case with my dad. They said if he gets a chest infection or pneumonia again we will keep him comfortable. Didn't get that far to be fair. I was told that his saliva was just trickling straight down to his lungs. That's when they gave up feeding him, that's how it seemed, made me mad in a way but I had to let go and feeding him was killing him anyway. It's so so hard. TRY and stay strong. Watching them choke is frightening, you can't win. Thinking about you all the time and looking out for your posts. Let me know how things go at GP review. Xx
Things didn't go, Red.. I got stuck at work due to manic Monday, and the doc never saw dad, staff didn't ask her to. It's became 'normal' for them, how dad is. Feel like life is conspiring against me- half my work off with various bugs...sadly,Dad is exactly the same. He's going to keep eating, drinking and choking until, well, until he stops doing it, or gets another pneumonia. He's in the same poor state, but he can still cough at times, salt team said that was protecting him to a degree. I'll need to make appt to see the GP who visits the CH at her own surgery after work, if they'll let me do that-not my doctor, so that may be tricky.? Close your ears... aaaghh!!! My dad would kill me if he knew how I was stressing out about him. Hope you're doing ok. Thank you, I appreciate you 'listening' to my rambling. X


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