Issues with dad's swallowing confirmed.

[Gwendy1]

Past couple of weeks, dad has been getting even worse eating/drinking. The SALT team has assessed him again today, and are now saying that he has 'forgotten' how to swallow as a result of his dementia..basically his food is just at the back of his throat and it's just chance which tube it goes down. We discussed peg feeding, I said no. So, dad still to be offered small amounts of puréed food etc carefully with a teaspoon. I knew this discussion would come(peg feeding), and I knew what I felt is right, and that dad would've hated such a thing. Now I feel we're in limbo. Dad still trying to eat, poor soul, so I still fear he may actually choke. SALT team can't do anything more for dad, they said. What now?


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[Toddleo]

Gwendy, a timely post from you, Mum is due to be assessed by the SALT team next week due to her swallowing problems, like your dad, it seems that she has "forgotten how"

It is too horrible to contemplate isn't it, my dad passed away with cancer of the oesophagus, and I feel like I am going through it all once again.

Thinking of you and your dad, and I will be interested to hear the thoughts from those folk on TP who have "been there before"

Toddleo

 

[Red66]

Sorry Gwendy just saw this post after commenting on another. Just awful. You did the right thing re peg feeding for sure. It's unfair and it doesn't promote the quality of life. I am so sorry to say but it's just watch and wait. They may discuss removing him off all meds if that hasn't been done already. He perked up a little in himself and became a little more aware, started smiling more, but I knew it was false hope. Dad's nursing home stopped feeding him at this point as he was choking and going beetroot for fear of him aspirating again, they asked me was I happy for them to do that and it had been discussed with doctor. Just gave thickened fluid, day by day he dropped the intake himself. So sorry Gwendy and Toddleo xxxx

 

[lemonjuice]

Past couple of weeks, dad has been getting even worse eating/drinking. The SALT team has assessed him again today, and are now saying that he has 'forgotten' how to swallow as a result of his dementia..basically his food is just at the back of his throat and it's just chance which tube it goes down. We discussed peg feeding, I said no. So, dad still to be offered small amounts of puréed food etc carefully with a teaspoon. I knew this discussion would come(peg feeding), and I knew what I felt is right, and that dad would've hated such a thing. Now I feel we're in limbo. Dad still trying to eat, poor soul, so I still fear he may actually choke. SALT team can't do anything more for dad, they said. What now?


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Much may depend on your Nursing Home and the carer's ability to hand-feed. Mum's inability to recognise food and the need to swallow was noted in her CHC funding years ago. I'd already told the Home when she went in that she didn't want any tube-feeding and I was assured it was never used. So I expect the Home has particularly proficient carers.

Mum has been hand-fed for over the 2 years now, with not one episode of aspiration pneumonia or problems. It does take an age- they say between 45 mins to an hour to feed her as they have to allow huge gaps for gravity to allow the food to go down the gullet and I have seen them prompting her by touching her cheeks. (Personally I can't bear to see her basically force-fed with no thought for whether she wants all that food or not, but thankfully I don't have to do it. )
Then they ensure she is propped up for at least half an hour to an hour to avoid any problems.

 

[Gwendy1]

Sorry Gwendy just saw this post after commenting on another. Just awful. You did the right thing re peg feeding for sure. It's unfair and it doesn't promote the quality of life. I am so sorry to say but it's just watch and wait. They may discuss removing him off all meds if that hasn't been done already. He perked up a little in himself and became a little more aware, started smiling more, but I knew it was false hope. Dad's nursing home stopped feeding him at this point as he was choking and going beetroot for fear of him aspirating again, they asked me was I happy for them to do that and it had been discussed with doctor. Just gave thickened fluid, day by day he dropped the intake himself. So sorry Gwendy and Toddleo xxxx

Thanks Red. I'm usually a very practical person...It's easy when it's not 'your own' tho.sitting here now thinking I've decided my dad's fate. Not a nice feeling. In reality, I knew everything they were going to say b4 they said it today. And dad has yet another chest infection diagnosed today. All dad's meds were stopped in January, except for aspirin. Dad been going beetroot- good description- for last 2 weeks. I guess, I'll keep watching, you've travelled this path- it's so very sad. ❤️️X


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[Gwendy1]

Much may depend on your Nursing Home and the carer's ability to hand-feed. Mum's inability to recognise food and the need to swallow was noted in her CHC funding years ago. I'd already told the Home when she went in that she didn't want any tube-feeding and I was assured it was never used. So I expect the Home has particularly proficient carers.

Mum has been hand-fed for over the 2 years now, with not one episode of aspiration pneumonia or problems. It does take an age- they say between 45 mins to an hour to feed her as they have to allow huge gaps for gravity to allow the food to go down the gullet and I have seen them prompting her by touching her cheeks. (Personally I can't bear to see her basically force-fed with no thought for whether she wants all that food or not, but thankfully I don't have to do it. )
Then they ensure she is propped up for at least half an hour to an hour to avoid any problems.

Hi lemonjuice, I know from your posts your mum has been struggling for a long time. It's so awful, and a constant worry. Dad seems to have deteriorated at an alarming rate, every time I think it surely can't get worse- it does. Thank u. I'm learning all the time here, just want my dad to be as comfortable as he can be, I'll pass on these suggestions to reduce the aspirating. X


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[Gwendy1]

Gwendy, a timely post from you, Mum is due to be assessed by the SALT team next week due to her swallowing problems, like your dad, it seems that she has "forgotten how"

It is too horrible to contemplate isn't it, my dad passed away with cancer of the oesophagus, and I feel like I am going through it all once again.

Thinking of you and your dad, and I will be interested to hear the thoughts from those folk on TP who have "been there before"

Toddleo

Hi toddleo. It must be especially difficult for you having watched your dad suffer too. I too am searching for others to give their experiences and prepare us for what may come. Very difficult, I'm thinking of you and your poor mum too❤️️X


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[Red66]

Thanks Red. I'm usually a very practical person...It's easy when it's not 'your own' tho.sitting here now thinking I've decided my dad's fate. Not a nice feeling. In reality, I knew everything they were going to say b4 they said it today. And dad has yet another chest infection diagnosed today. All dad's meds were stopped in January, except for aspirin. Dad been going beetroot- good description- for last 2 weeks. I guess, I'll keep watching, you've travelled this path- it's so very sad. ❤️️X


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So sorry Gwendy. It's awful. Stay brave, you're doing great xx

 

[Gwendy1]

Worry, worry, worry.. Today, I had a conversation at the CH, about the conversation I'd had with SALT team yesterday. I'd thought the salt team advice could not have been clearer, and she had said the CH staff would be made aware, care plan changed etc. However, the CH Staff told me today that dad had managed his breakfast, and they're encouraging him to keep his 'independence' when he's eating?? Dad was clearly frail today, and only managed 2 teaspoons of yoghurt from us b4 choking and becoming distressed. The advice from salt team was to give full assistance, stop trying if any signs of aspirating. More worryingly, was a speech from the Carer about the 'duty of care' the home has for dad to 'keep eating', which I assume means even though he's struggling, they'll persist. Of course I want dad to eat when he's able.. But I cannot stand the thought he's coughing and spluttering through. It's also in my mind that I asked for the referral to SALT, the staff hadn't picked up on the problem increasing, or if they had, they hadn't acted. Stressed out.


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[angecmc]

Hi, have you got a copy of letter SALT team would have given the care home, if not ask for a copy, they always put in writing the result of their visit, once you have this ask to speak to the Manager and point out what was recommended by them for your Dads care. If you have no joy, I would contact Social Services. Xx

Ange

 

[Gwendy1]

Thanks angemc, I've got the leaflet now. Today was not a good day. Dad totally unresponsive this morning so I returned later on. His face has changed, he looks drawn. His feet are swollen too. He was awake for 5 minutes when I went back, but looked much happier when he was sleeping, so I let him be and just held his hand. He'd ate his breakfast b4 I visited this morning, but staff said he'd been ill after it (coughing/sick) although he'd been ok when he was actually eating it. He's deteriorating so rapidly now. I'm taking comfort in the fact he looks peaceful when he's asleep, at least. Guess I'll see what tomorro brings. X


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[fizzie]

Thanks angemc, I've got the leaflet now. Today was not a good day. Dad totally unresponsive this morning so I returned later on. His face has changed, he looks drawn. His feet are swollen too. He was awake for 5 minutes when I went back, but looked much happier when he was sleeping, so I let him be and just held his hand. He'd ate his breakfast b4 I visited this morning, but staff said he'd been ill after it (coughing/sick) although he'd been ok when he was actually eating it. He's deteriorating so rapidly now. I'm taking comfort in the fact he looks peaceful when he's asleep, at least. Guess I'll see what tomorro brings. X


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Gwendy have you contacted the hospice? They are really good at advising at this stage. It might be worth just popping into your local hospice and asking for help and advice.

 

[Gwendy1]

Gwendy have you contacted the hospice? They are really good at advising at this stage. It might be worth just popping into your local hospice and asking for help and advice.

Fizzie, I did think about it, but didn't know if they got involved when CH has nursing care?? Marie curie were brilliant with mum when she was dying, but she'd been at home..don't get me wrong, the staff are lovely to dad, I just don't think they 'see' the end of life/palliative care picture. An obsession with charts and routines, I fear. D'you think hospice would have an input? I'm very lucky(?) to have an excellent Marie Curie near me.x


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[Hezzy]

Hugs to you Gwendy, you are doing everything you can xx

 

[Red66]

Hi Gwendy, so sorry to hear about your Dad's deterioration. We didn't need a hospice, our nursing home could deliver palliative care so it wasn't a problem. The carer's were prompted if Dad started coughing to stop immediately from giving fluid, the were also told this with foods before the last 12 days of his life (when he only had fluid and not much). The last day of his life the care assistant was giving him fluid and I had to tell her to stop, he was choking and she was still giving. He had 6 HEAPED spoons of thickened juice and he was beetroot but she kept on shovelling because even though he was coughing and struggling to breathe he kept opening his mouth for more. It was as if he still wanted it but he body couldn't. I am glad your Dad looks peaceful asleep, it's the best way. I too would point out things the nursing home, I used to check his bum for bed sores and the state of his backside and they wouldn't have dressings on. I would note feeding or drinking and they like I said before would shovel it in, some carers were great but others didn't seem to get the information or didn't care. I feel for you Gwendy. This bit is tough, really tough. I feel for you xxxx

 

[sleepless]

D'you think hospice would have an input? I'm very lucky(?) to have an excellent Marie Curie near me.x


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Reading your posts with much sympathy but no experience I'm sorry.

But it surely would be worth calling in to the hospice for a word with them, explaining your worries?

 

[Red66]

Reading your posts with much sympathy but no experience I'm sorry.

But it surely would be worth calling in to the hospice for a word with them, explaining your worries?

Would a move to a hospice not be too distressing at this stage? I have no experiences of hospices but I did stop dad from going to the hospital as the move was distressing. If the NH offers palliative care then to me that would make sense. My Dads last hours on this earth was very peaceful in his own room at the nursing home and therefore familiar surroundings to him. Red x

 

[sleepless]

Would a move to a hospice not be too distressing at this stage? I have no experiences of hospices but I did stop dad from going to the hospital as the move was distressing. If the NH offers palliative care then to me that would make sense. Red x

I was thinking more along the lines of receiving input from the hospice by way of advice, not admission to the hospice. Your own upsetting experiences with some of your dad's carers, and some of the things Gwendy is worried about just make me wonder if speaking to someone with even more knowledge might be helpful? Or at least reassuring.

 

[fizzie]

Fizzie, I did think about it, but didn't know if they got involved when CH has nursing care?? Marie curie were brilliant with mum when she was dying, but she'd been at home..don't get me wrong, the staff are lovely to dad, I just don't think they 'see' the end of life/palliative care picture. An obsession with charts and routines, I fear. D'you think hospice would have an input? I'm very lucky(?) to have an excellent Marie Curie near me.x


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Yes I do, they will often provide palliative care help and advice in a nursing home because it is so specialist, just go along and talk to them about your fears, concerns and your wishes that they are involved to help smooth the way xxx

 

[Germer]

Excess saliva

My husband has Young onset and until recently was feeing himself. He swallows his food but He now needs fed and is constantly soaked from drooling. His poor bottom lip is swollen and his teeth appear to be receding. Anyone have this symptom and any advise for me?