Please help, hospital not letting him eat

[Joco]

Hi all,

This is a long story so I'll do my best to be brief. Dad is 64, in the late stages of Alzheimer's. He was diagnosed with aspiration pneumonia last week and was admitted to hospital.

He is making very slow progress, is on antibiotics and oxygen, fluids through the iv also. He hasn't eaten for 10 days now. They are saying he can't eat until he is assessed by a SALT, however they came to see him today before visiting times and said that as he didn't respond to them they can't assess him. I am so angry and upset, he doesn't respond to any of us! He was eating really well prior to this, no issues but he doesn't communicate with us verbally anymore as he has lost this ability. So are they just going to leave him to starve as he can't respond? What can I do? I'm so worried he is just going to fade away and no one cares.

They also haven't given us any test result, the nurses won't share and say we have to make an appointment with the dr next week. I don't understand why. My mum has an EPA but not LPA so it doesn't cover health and welfare.

Do we just go in and try him with milkshake or soup? We know him so well and they haven't got a clue about his needs and I'm worried they don't care what happens to him. Or do we leave him and contact the SALT on Monday? Can't bare to think that he is starving.

Thanks for any advice.

 

[Beate]

You've put your post in the End of life care section. Does that mean he's on palliative care? Because if someone has aspiration pneumonia you can't just feed him and hope for the best. He sounds like a very sick man. Is he awake? Does he want to eat? When my OH was put on end of life, he was not able to cope with eat or drink anymore so they withdrew everything. He did not die of that - he died because his organs could no longer cope with food and fluid. I know this is very hard to understand but you must speak to a doctor to find out what's going on before you try any feeding. They should be around on a ward on a weekend too.

 

[Joco]

Hi Beate

Thanks for your reply. He is not on palliative care so apologies if I have put this in the wrong place, I was in a bit of a panic when writing.

The nurses have categorically stated that they can't share anything with us and we will have to make an appointment with the dr next week. They are saying no one will be available to speak with us over the weekend. He isn't really awake that much, I don't know if he wants to eat but he couldn't communicate he wanted food prior to the pneumonia either, we would just offer it and he would take it.

Sorry again if this is not the right board but appreciate your response.

 

[Tin]

Hi all,

This is a long story so I'll do my best to be brief. Dad is 64, in the late stages of Alzheimer's. He was diagnosed with aspiration pneumonia last week and was admitted to hospital.

He is making very slow progress, is on antibiotics and oxygen, fluids through the iv also. He hasn't eaten for 10 days now. They are saying he can't eat until he is assessed by a SALT, however they came to see him today before visiting times and said that as he didn't respond to them they can't assess him. I am so angry and upset, he doesn't respond to any of us! He was eating really well prior to this, no issues but he doesn't communicate with us verbally anymore as he has lost this ability. So are they just going to leave him to starve as he can't respond? What can I do? I'm so worried he is just going to fade away and no one cares.

They also haven't given us any test result, the nurses won't share and say we have to make an appointment with the dr next week. I don't understand why. My mum has an EPA but not LPA so it doesn't cover health and welfare.

Do we just go in and try him with milkshake or soup? We know him so well and they haven't got a clue about his needs and I'm worried they don't care what happens to him. Or do we leave him and contact the SALT on Monday? Can't bare to think that he is starving.

Thanks for any advice.

This must be terrifying for you. My understanding of aspiration pneumonia is that one of the causes is food has entered the lungs and caused an infection. So yes, he would have been eating well, just not all the food going into his stomach. Not a good idea to try and feed him yourself until you have spoken to the Doctor and a member of the SALT team asap. If I am wrong about this then sure someone will be along soon to give you more helpful information.

 

[LadyA]

@Joco This is so hard to deal with. My husband got aspiration pneumonia and died in 2015. He could no longer swallow, although the nursing home staff managed to get small amounts of thickened fluids and teaspoons of things like yogurt into him for some weeks.

Aspiration pneumonia though is not just an ordinary infection. It's caused by particles of fluid and/or food getting into the lungs, because the swallow reflex has become so poor. Sometimes, this can be a result of temporary weakness due to another illness, and the person can recover. Usually, though, and particularly at the late stage of dementia, it's caused by a progression of the dementia itself.

Do talk to the doctors. They are best placed to know what the prognosis is for your dad.

 

[Joco]

Thank you all. I will not do anything with regards to attempting food then as I wouldn't want to make it worse :-(

LadyA how do they know it is definitely aspiration pneumonia? Does it show differently on the x ray? (I know I sound desperate for this not to be happening)

 

[Tin]

Breathing problems when he entered hospital. xrays or a ct scan would confirm this.

 

[JeffAjaxSmith]

Hi all,

This is a long story so I'll do my best to be brief. Dad is 64, in the late stages of Alzheimer's. He was diagnosed with aspiration pneumonia last week and was admitted to hospital.

He is making very slow progress, is on antibiotics and oxygen, fluids through the iv also. He hasn't eaten for 10 days now. They are saying he can't eat until he is assessed by a SALT, however they came to see him today before visiting times and said that as he didn't respond to them they can't assess him. I am so angry and upset, he doesn't respond to any of us! He was eating really well prior to this, no issues but he doesn't communicate with us verbally anymore as he has lost this ability. So are they just going to leave him to starve as he can't respond? What can I do? I'm so worried he is just going to fade away and no one cares.

They also haven't given us any test result, the nurses won't share and say we have to make an appointment with the dr next week. I don't understand why. My mum has an EPA but not LPA so it doesn't cover health and welfare.

Do we just go in and try him with milkshake or soup? We know him so well and they haven't got a clue about his needs and I'm worried they don't care what happens to him. Or do we leave him and contact the SALT on Monday? Can't bare to think that he is starving.

Thanks for any advice.

Hi @Joco, post

Having read this am very shocked YOU mum should be on high nutrition shakes.

Having aspiration pneumonia don’t mean your near end.

My dad has bouts of that then recovers.

Hospital have to have safe guarding policy ITs for those with memory problems so hospital don’t neglect or starve them.

Ask to see it ALSO the have a getting to know us pack THAT is all about safe guarding.

Also if your getting nowhere see hospital pals teams and make them go see what’s going on HOSPITAL should have dementia Alzheimer’s nurse.

If all that fails get in touch with qualty care commission AND tell them what’s going on If they feel
there is issues and safeguarding issues they will intervene there and then and make sure hospital is following safeguarding policy.

All this is assuming you are in UK tho.

Lot of hospitals neglect dementia patients as they need more time than regular vocal patients.

Don’t let them rip you of time and your mum.

Also you can read even complain this no notes at bottom of bed and the not kept upto date.

My dad had sepsis and shock via hospital neglect AND hospital would prefer to admit notes was note kept than admit the neglect.

Aspiration pneumonia is when the hold food in the mouth YOU can tell if cheeks puff out when eating.

I would ask about UTI and make sure you mum is drinking and eating.

 

[jenniferpa]

Aspiration pneumonia is when the hold food in the mouth YOU can tell if cheeks puff out when eating

I'm sorry but no it's not. This is called pouching and can lead to aspiration but aspiration can occur without this behaviour.

It's extremely important that @Joco father is assessed by a salt professional as a matter of urgency.

make sure you mum is drinking and eating.

I consider it extremely reckless to encourage the feeding of a person with aspiration pneumonia without medical guidance.

 

[JeffAjaxSmith]

I'm sorry but no it's not. This is called pouching and can lead to aspiration but aspiration can occur without this behaviour.

It's extremely important that @Joco father is assessed by a salt professional as a matter of urgency.



I consider it extremely reckless to encourage the feeding of a person with aspiration pneumonia without medical guidance.

Hi @jenniferpa i think someone being in hospital with out food or fluids for ten days is reckless.

Am no doctor clearly and just give one example of aspiration pneumonia I had encounter with my dad.

When my dad was in hospital is correct there is no sense of urgency AND that is refected in mortality sats.

Only have to ask sepsis trust re scandals of hospitals saying dementia patients died of pneumonia rather than documented sepsis.

Lucky for my dad he survived sepsis only coz of my due dilagance NOT hospital neglect

 

[Amy in the US]

The first post says Joco's father is on IV fluids.

If there is concern that the swallow function has been affected, then the hospital will want that to be assessed. That's where the SALT team comes in. Dementia can and does impact the swallow reflex in patients, unfortunately.

I'm no doctor, either, Jeff, but pneumonia is inflammation/infection of one or both lungs. Aspiration pneumonia is when something that shouldn't go into the lungs, like food, fluid, mucus, or vomit, does, and causes an infection. Those things can carry bacteria that do not belong in your lungs.

A person with an impaired swallow reflex is at greater risk of aspiration pneumonia and also plain old choking. That's why we are encouraging the OP to be careful and talk to the doctors about what is and isn't safe for their dad. As he has already been diagnosed with aspiration pneumonia, I'm sure they want to prevent this from happening again. The SALT team may recommend thickened liquids, a puréed diet, et cetera.

@Joco, I hope you can get some information soon, and best wishes. Hospital stays are hard.

 

[philamillan]

Hi Joco.

The problem of an unsafe swallow is complicated to manage especially in a person with dementia.

I suspect that the aspiration is presumed as he is probably coughing on attempting simple swallows. The fact that there is an infection will make it worse and his infection will have to improve in order for the swallow to get better.

The fact that he has not been fed for 10 days is more of the problem and I would think that they must have considered the use of an Nasogastric Tube. The dietitians are usually very worried about weight loss after 4 to 5 days and maybe trying to speak with them will give a more objective answer about the plans.

Maybe he is too agitated and will not tolerate it? Whatever the reason that is the question to ask.

Finally, what do you think should happen if his swallow does not improve? Should they feed him with risk of further aspiration? That may be considered to be a pre terminal decision with the understanding that another infection could be very serious.

This is difficult and there are no easy answers.

Speak directly to the SALT and Dietitians on the ward. Have to go early, usually about 10:30am or ask the ward sister to make them call you on your phone. That is the starting point.

Hope this helps.

 

[Saffie]

Hi @jenniferpa i think someone being in hospital with out food or fluids for ten days is reckless.

Am no doctor clearly and just give one example of aspiration pneumonia I had encounter with my dad.

When my dad was in hospital is correct there is no sense of urgency AND that is refected in mortality sats.

Only have to ask sepsis trust re scandals of hospitals saying dementia patients died of pneumonia rather than documented sepsis.

Lucky for my dad he survived sepsis only coz of my due dilagance NOT hospital neglect

I notice that you have only recently joined us here on TP so I hope you will find as much help and support here as I have done over the years. I’m sorry that you have obviously had a far from positive experience in hospital. You will eventually notice that very many members here have lost loved ones through Aspiration Pneumonia as have I. My husband died in his NH after a mild short chest infection from which he appeared to have recovered with the help of a course of antibiotics. His death was sudden and unforeseen.
Yes, some people recover from such bouts - you have been fortunate - but many do not as their bodies are already too weak to overcome the infection. To encourage someone who has AP to eat, against the advice of doctors, is reckless and could be dangerous.
As others have said the illness itself is caused by foreign matter in the lungs and is a common cause of death in people for whom dementia has advanced to the stage that the swallowing reflex has failed. Most of the people with whom I have become close to on TP have lost their husbands in their way.
It is to be hoped that Joco’s father will be re- assessed by the SALT team and the appropriate action taken.
He is being treated, according to Joco, so is not being neglected simply because he is not given food by mouth.

@Joco
Your father is having AV fluids so is being treated and not neglected. I presume the reason for withholding information maybe because of the lack of a H&W LPA though may also be because they want to be sure that they are following the best course of treatment for your father and therefore, as Jennifer has said, another attempt at an assessment from the SALT team is vital. I hope you have a positive outcome for this visit. Best wishes.

 

[la lucia]

Hi all,

This is a long story so I'll do my best to be brief. Dad is 64, in the late stages of Alzheimer's. He was diagnosed with aspiration pneumonia last week and was admitted to hospital.

He is making very slow progress, is on antibiotics and oxygen, fluids through the iv also. He hasn't eaten for 10 days now. They are saying he can't eat until he is assessed by a SALT, however they came to see him today before visiting times and said that as he didn't respond to them they can't assess him. I am so angry and upset, he doesn't respond to any of us! He was eating really well prior to this, no issues but he doesn't communicate with us verbally anymore as he has lost this ability. So are they just going to leave him to starve as he can't respond? What can I do? I'm so worried he is just going to fade away and no one cares.

They also haven't given us any test result, the nurses won't share and say we have to make an appointment with the dr next week. I don't understand why. My mum has an EPA but not LPA so it doesn't cover health and welfare.

Do we just go in and try him with milkshake or soup? We know him so well and they haven't got a clue about his needs and I'm worried they don't care what happens to him. Or do we leave him and contact the SALT on Monday? Can't bare to think that he is starving.

Thanks for any advice.

Hi, so sorry that you are going through this but if it helps my mother is also in hospital with aspiration pneumonia after being admitted just before xmas. She probably inhaled a little vomit, a month previously, but despite repeated examinations she was sent home from hospital initially. Then readmitted.

My mother already had a diminished swallow and was also 'pocketing' food so we already had her on pureed food. Having said that, she didn't eat/wouldn't eat anything for the first couple of weeks.

I had to lobby for intravenous fluids because hydration is the absolute bottom line which can have a dramatic impact on cognition and behaviour. Luckily for us, the hospital do mostly listen to my opinion and the overall demeanor of my mother changed a lot once she was rehydrated. Keeping her hydrated is another story....

First, the antibiotics usually used for pneumonia are extremely strong and often make people feel very sick. When I had them in a big London hospital an anti emitic was offered as policy, but that's not always the case. My mother wasn't given them and she was in a dire state for a while.

My mother looked dreadful for a couple of weeks and I really thought this was 'it' but despite being 97 with advanced dementia she rallied.

She's been on Fresubin high energy drinks which come already thickened for Stage Two (custard consistency they call it). She also has fluid and nutrition charts and I am encouraged to fill them in myself if I can get any food or liquid into my mother. I take home made soups in and spoon feed with teaspoons. But SALT came really fast to re-assess my mother and I was invited to observe. (It was really fascinating).

The slowness of the SALT assessment for your relative is appalling and likewise the lack of access to information and for that I strongly recommend that you get in contact with the hospital PALs team and calmly but clearly identify your concerns.

Try and identify also what exactly is the hospital's dementia policy and then insist that it has to be more than a tick box too. But keep it clear, calm and business like.

My mother's hospital has woken up to the fact that family is a great resource and enables staff to be able to get on with other things. But they weren't always like this.

I hope you get some resolution to this. It's really scary isn't it.

 

[Joco]

Hi everyone
Thanks so much for your messages this is such a supportive place and I'm so grateful you've taken the time to write such detailed responses.

Tin thanks so much for the support and advice.

LadyA I'm very sorry to hear you lost your husband this way, thank you for sharing your experience with me to help me understand better.

Jennifer thanks for clarifying re pouching -I think he is now starting to do this unfortunately.

Amy and Jeff thanks for sharing your viewpoints it's really helpful in considering this from all angles.

Phillamillan thanks for your advice and your helpful post. We have left a message at the ward and on the SALT team voicemail so hope to hear really soon.

Saffie so sorry to hear of the loss of your husband, thank you for sharing your experience and insights.

LaLucia I'm so sorry you're going through this too, but glad to hear your mum is pulling through and your hospital sound really good.

My update is a fairly good one thankfully, I visited this afternoon and he is no longer on oxygen which was a welcome surprise. They have also provided thickener and said we can try him with thickened squash and custard type dessert. We tried the dessert but he wouldn't swallow it, he held it in his mouth for a while but then it all came out again later. Mum offered him the squash and he did one swallow which is something. He actually hasn't been assessed still which bothers me but the nurse informed us we should try -they'd already tried before we arrived unsuccessfully.

We will be chasing up SALT first thing Monday to see what they advise moving forwards.

Thank you all again.

Jo

 

[Amy in the US]

TP does have a wealth of experience and advice available. I would be lost without it!

Jo, it's encouraging to hear your dad is off the oxygen. Low oxygen saturation levels don't help cognition, and would make him feel poorly, so that's good news that they are back to normal.

I hope you can connect with the SALT team very quickly Monday morning and get some information. The waiting around the hospitals for things to happen, is very tiring and frustrating. Hope you are able to get some rest and look after yourself a bit, in all this.

Best wishes and please keep us updated when you have the time and energy.

 

[Joco]

And we're back on the oxygen today
Poor dad now has an infection in both arms so has a cannula in each foot to get the fluids and antibiotics in. He didn't look as good today.... it's a real up and down process isn't it.

Good news is that SALT are coming tomorrow to assess so will see how that goes.

Hope everyone is well.

 

[JeffAjaxSmith]

And we're back on the oxygen today
Poor dad now has an infection in both arms so has a cannula in each foot to get the fluids and antibiotics in. He didn't look as good today.... it's a real up and down process isn't it.

Good news is that SALT are coming tomorrow to assess so will see how that goes.

Hope everyone is well.

Hi @Joco that’s disgrace AM no expert but you only get infections in arms from them leaving canulas in WELL that’s providing he had no skin lessons.

I would try read your dad’s bed notes.

 

[Amy in the US]

@Joco, I'm sorry to hear your update. I hope you're able to get some rest tonight and that you get some information tomorrow. Best wishes.

 

[Raggedrobin]

Jeff, her father is extremely ill and his immune system may not be working very well, hence infections. You clearly have a lot of anger about the situations you have experienced with your own father in hospital but I don't think it is helpful to assume the hospital staff in this situation aren't doing what they can to keep her fathee comfortable.
joco, I hope you get more information when the SALT team arrive, best wishes.