oh dear, aspiration pneumonia

[thebes]

My lovely OH became very ill very fast on Sunday night and is in hospital . I had no idea this could happen so quickly. I had taken him to the walk In Centre earlier that day as he sounded hoarse and I was worried he had laryngitis. After a check up was told it was probably reflux. No temperature, chest clear etc. only 18 hours later blue light transfer to Aand E.
He is responding to antibiotics BUT his poor swallowing which has been causing some problems, and probably caused this is much much worse. He can only have about half a spoonful of mousse like food at a time and needs strong encouragement and reminding to swallow. And sometimes still coughs it back. Thickened fluids are just as bad. I can't imagine how he will get enough nourishment or fluid, let alone the time each snack or drink takes. Yet dread even the suggestion of any sort of tube feeding. help!
Would welcome comments and advice from your experience of this difficulty. Thanks.

 

[Beate]

I haven't really got any advice, just some hugs. Are you allowed to stay with him to help him getting fed?

 

[thebes]

Yes ward staff very dementia aware thankfully and also can see the common sense of me or other family members being there most of the time except overnight. With the level of staffing they have I cannot see how they could do these very slow feeds. His section of the ward has other high need patients and the staff are constantly busy. Have to commend the very detailed and painstaking assessments that are going on prior to decision making about the next step.

 

[Chuggalug]

Thebes, I'm so dreadfully sorry you and your loved one are going through this. My hubby never got that bad, but he had to be monitored closely in recent weeks, and towards the end of last year when the swallowing difficulties began. He has since improved and now lives on a soft food diet and manages it very well.

It sounds like your hubby may be a bit frightened of swallowing after what happened to him. Gentle persuasion from everyone caring for him seems to be the answer. I do hope he improves and feels better.

 

[nita]

So sorry to hear this news. I imagine your husband has been put on a drip to feed him while he is having this difficulty and it is something he may with time get over. Everyone on here speaks of the SALT team - have they been brought in? It is a good sign that he is responding to antibiotics.

I hope you have better news tomorrow.

 

[Gigglemore]

So glad that the hospital staff are understanding and that you are allowed to help with feeding. Sorry, no advice or experience just wanted to say that it must have been so frightening for you and OH and hope that his swallow improves as he recovers from the pneumonia.

 

[thebes]

Thanks everyone, it is so helpful to hear from people who really understand. He is on IV fluids and antibiotics still. Salt team assessed yesterday and were the ones who raised alarm bells with me as said now severe swallowing delay of 4-5 seconds. She was the one who set up the feeding regime,saying he was at high risk; with a year long history of declining swallow and recent worsening before the infection she was not optimistic about much improvement .
I will be doing every thing in my power to help him recover some strength in those muscles, but am also trying to be realistic and think what I can get set up at home so we can have him back ASAP, which he is wanting to do.
Spare a thought for my dear step children, whose mother died from suddenly from a dementia related illness this week last year. Adults they may be and busy professionals, but at presentthey look like frightened children. Off to the ward at 8 for the day. Catch up later.

 

[Chuggalug]

Thanks everyone, it is so helpful to hear from people who really understand. He is on IV fluids and antibiotics still. Salt team assessed yesterday and were the ones who raised alarm bells with me as said now severe swallowing delay of 4-5 seconds. She was the one who set up the feeding regime,saying he was at high risk; with a year long history of declining swallow and recent worsening before the infection she was not optimistic about much improvement .
I will be doing every thing in my power to help him recover some strength in those muscles, but am also trying to be realistic and think what I can get set up at home so we can have him back ASAP, which he is wanting to do.
Spare a thought for my dear step children, whose mother died from suddenly from a dementia related illness this week last year. Adults they may be and busy professionals, but at presentthey look like frightened children. Off to the ward at 8 for the day. Catch up later.

Even adult 'children' feel the bite of illness when something arrives to someone they are close to. I wish I could wrap you all up with a hug.

Hoping for improved news. Take care, Thebes. Sounds like you're having a long, tiring day.

 

[truth24]

Hope your husband's condition improves soon. This is such a horrible thing to happen and very frightening. Thinking of you and your family.

 

[LadyA]

Oh, thebes - so sorry to read this. This is what happened with William at the end of May. He spent a week in the Acute Medical Unit with aspiration pneumonia, only getting IV fluids and antibiotics. He couldn't swallow at all without choking while in the hospital, and after a week, he was sent back to the nursing home, and I was told that once he was off the iv fluids, he would only survive 6 to 8 weeks. The nursing home staff basically looked at me and said "Pah! We'll see!" when I told them. Gradually, they got him eating a pureed diet and "drinking" very thickened liquids - he gets his drinks half a teaspoon at a time, the consistency of baby porridge. It can take 20 minutes to get a glass of juice into him - but they take their time, make absolutely sure he has swallowed one bit before offering the next, etc. Also, they make sure he is sitting upright before feeding.

Part of why he couldn't eat at the hospital was simply the infection - but mostly it was the unfamiliar environment, the unfamiliar staff, the unfamiliar routine. People with that stage of dementia are completely unable to cope with the unfamiliar.

So your husband may improve and be able to swallow a bit better, once he's out of hospital and in his familiar environment. But - aspiration pneumonia is caused by the failing swallow reflex. And as it was explained to me, it won't go away. It may clear up this time with the antibiotics, but it's not so much a case of if it happens again - it will happen again. The staff and doctors explained that yes, they can puree the food, and thicken the drinks - but they can do nothing about his saliva, for example. And even when he doesn't choke on food, he is "silently" aspirating occasionally - inhaling particles without noticing.

As for the tube or peg feeding - I decided against it, even had William not been able to go back to eating some himself. My understand is that a person would have to be either well enough to understand what the tube/peg is, and leave it alone, or so very ill that they leave it alone. I knew William would be too fidgety - he would pull it out. And also, they do leave a person much more vulnurable to infections, and in their weakened state, very elderly people with dementia don't really need to be made vulnurable to infections.

Best love to you - I know this is a very difficult and stressful time. xx

 

[thebes]

Thank you all for your support and PMs. Thankfully after a change of antibiotics late last night he is at last in a stable state, and showed some improvement and returning strength over the day today. So within the last 24 hours we have gone from one of those family meetings with the medics about what if, after a crisis yesterday morning, to a more hopeful discussion withe medics today about what medical issues need to be resolved before they will let him come home.
Small wonder that a couple of hours after that turn around, I collapsed with exhaustion and relief and was sent home to rest!
It may be helpful to others to know that yesterday when we were facing the fast deterioration that the medics were supporting us in our choice for no invasive nutritional interventions. They were of the view, often expressed here, that tube and peg feeding are not good practice in mid to late stage AZ. Though as his quality of life is still good within its limitations they were also glad that we were not instructing DNR at this point, though they said they would come back to us for review if he had to go to intensive care.
I have nothing but praise for their care, the SALT guidance on feeding is spot on with what others here have advised, and while painstakingly slow, it works. He has also been out of bed each day in a chair and encouraged to have a little walk with his rollator even when he had been so poorly.
I do accept that this will happen again and may be worse, and he may be weaker and not able to cope, but hope in the meantime that we get some more time at home together.

 

[truth24]

So glad he is improving. You must be so relieved.

 

[Izzy]

I'm so sorry I somehow missed this thread Thebes. I'm glad your husband seems to be responding to treatment and I hope he continues to do so.

My husband had aspiration pneumonia 2 years ago. He too was on IVs then a thickened/puréed diet. It was very scary but he fought back and was on a normal diet before he was discharged.

In April of this year he had an aspiration chest infection. Again he was very poorly but he's back to his normal again.

Sorry for rambling I just wanted to say they sometimes find the strength to overcome these infections. Goodness knows how. I hope your husband continues to find that strength.

Wishing you strength too - and some rest. x


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[nita]

Very pleased to hear of the turnaround. Thank you for coming online to post an update amidst it all. It is so strange that one minute you are in despair and things seem hopeless, the next things are improving and returning to more of a normality. I have experienced these crises with my mother, different scenarios. It is very draining. I hope you get some rest and feel recharged tomorrow.

 

[LadyA]

Delighted to hear of the improvement thebes.

 

[Jinx]

Hope things are better today.


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[thebes]

Slow progress

Finally tonight I am home early enough and with enough energy to post an update. Last week was very tough as initially my Oh did not respond to the drugs. Eventually they tried yet another antibiotic and it worked but his recovery is taking time. Last week made me realise the reality of the press reports about how we are running out of antibiotics that work as so many bugs are resistant.
The ward staff have in general been very supportive. I certainly know the value of being able to have myself or one of the immediate family with him all the time except when he is asleep at night. It is avery busy acute medical ward and when things get hectic, slip ups happen, not on the medical side but on the care side. I have several times found ordinary drinks put within his reach, despite a huge red notice warning that he can't have them. And despite the notice saying he has puréed food under supervision, only when wide awake, I once came back from a loo break to find a tray of ordinary dinner waiting for him to wake up. But most frustrating has been the poor selection of puréed food on the menu, which is much better for other foods. And then most of the time what we ask for is unavailable. Feel sorry for the dietitian and speech therapist working hard doing their jobs only to find the catering side can't or won't supply.
We are waiting for the delivery of a hospital bed etc ready for him to come home to when he is fit. A slight setback today as he now has an infected arm from the IV cannula site, no comments from anyone on how that's happened, just hope it doesn't set him back.
I am feeling nervous about his return, much as I want him home. Knowing his swallowing is now so poor and every meal or drink however carefully taken causes him to cough bits back, I hope the way we plan to look after him will be good enough to stop it happening again too soon.
Final comment, isn't predictable that the one professional who I have not seen despite asking every day is the social worker who needs to agree the extra care hours that we need. Or am I too cynical, sorry folks must be more tired than I thought.

 

[truth24]

You have had a difficult time. As you say, most of the problems in his care have been due to lack of common sense. Hope all goes well when he returns home. Its amazing the way social workers know how to disappear when most needed.

 

[Gigglemore]

Hope you get the equipment and can get him home soon. The swallowing does sound challenging but at least you will have access to your own kitchen and won't be travelling to and from the hospital all the time. You can also do feeding when your OH wants rather than having to fit in with the hospital's mealtimes.

Best wishes and hope you get the support you need to keep his quality of life as good as possible, without wearing yourself out.

 

[Lindy50]

Thebes, I'm sorry you've been having such a tough time. Just to address one issue, I find it extraordinary that so little attention seems to be paid to ensuring patients get good food in hospital, given that it is so vital to recovery....

Hope the social worker makes an appearance, you get the equipment you need, and that your OH is soon home where he belongs

All the best

Lindy xx