Aspiration pneumonia

[Red66]

Dad could walk, talk, go the toilet, feed himself and go for a wander in November. It was going for a wander that got him sectioned.

He became aggressive, extremely aggressive and was on a cocktail of medications. Whether it's the progression of the disease, ie alzheimers, vascular dementia and lewy body or the works of the tablets I don't know but my poor Dad in less than 2 months was wheel chair bound, doubly incontinent, and can't feed himself or do any general daily tasks, oh and hallucinates.

Lost his swallow and on thickened fluids and pureed food. What on earth has happened?????

He is now bed bound and has aspiration pneumonia since Monday night. Anti biotics have worked but the fluids he is on is like a false sense of security, he seems bright, yet before the pneumonia he was just awful, had already lost his swallow.

No doubt he will suffer aspiration pneumonia again quite quickly, I had already checked his card ex at the hospital and end of life meds are already lined up. I don't even know why that was a shock, just listening to his breathing on Tuesday well 1150 on bank holiday Monday onwards, that was enough, thought he was going to die there and then.


Trying to make my family understand that once he comes off the iv fluids he is going to return to the way he was, they're not really listening, and then I feel bad for making a drama. He drank 200mls yesterday, some days less, he clamps his teeth down to not let the spout of the beaker in.

Feel like I am going mad, sorry for the rant, but no one seems to truly understand. My dad is only 73 and I am 36 with 2 children, one 3 and the other 1 years old. Life is hard at the moment, I am not self pitying, just watching my mum and dad and caring for a family, is tiring!

It's dreadful witnessing everything.

Red

 

[canary]

Hello Red. It sounds like the dementia has progressed really fast - it can happen, but it comes as a shock to family.
This is a horrible time and the waiting is awful. Im glad the hospital has organised meds so that there will be no delay when he needs them.
Be gentle with yourself (((hugs))))

 

[100 miles]

Red

It seems as if your family are still dealing with the changes that happened over the winter and haven't caught up with the present position.

There are lots of people here who understand. All we can do is keep going one day at a time. Tiny children are exhausting, but hopefully you can enjoy their laughter.

Carry on ranting.

 

[Red66]

Thank you for your kind words x

 

[Aisling]

Dad could walk, talk, go the toilet, feed himself and go for a wander in November. It was going for a wander that got him sectioned.

He became aggressive, extremely aggressive and was on a cocktail of medications. Whether it's the progression of the disease, ie alzheimers, vascular dementia and lewy body or the works of the tablets I don't know but my poor Dad in less than 2 months was wheel chair bound, doubly incontinent, and can't feed himself or do any general daily tasks, oh and hallucinates.

Lost his swallow and on thickened fluids and pureed food. What on earth has happened?????

He is now bed bound and has aspiration pneumonia since Monday night. Anti biotics have worked but the fluids he is on is like a false sense of security, he seems bright, yet before the pneumonia he was just awful, had already lost his swallow.

No doubt he will suffer aspiration pneumonia again quite quickly, I had already checked his card ex at the hospital and end of life meds are already lined up. I don't even know why that was a shock, just listening to his breathing on Tuesday well 1150 on bank holiday Monday onwards, that was enough, thought he was going to die there and then.


Trying to make my family understand that once he comes off the iv fluids he is going to return to the way he was, they're not really listening, and then I feel bad for making a drama. He drank 200mls yesterday, some days less, he clamps his teeth down to not let the spout of the beaker in.

Feel like I am going mad, sorry for the rant, but no one seems to truly understand. My dad is only 73 and I am 36 with 2 children, one 3 and the other 1 years old. Life is hard at the moment, I am not self pitying, just watching my mum and dad and caring for a family, is tiring!

It's dreadful witnessing everything.

Red

Dear Red,

It is dreadful for you. You are not making a drama. Some people seem to have difficulty trying to understand. At times I get so angry inside myself as I believe there comes a time when we have to face the awful things that life can bring and that other people should help you by supporting you. You can't do everything but sadly so often one person is left coping while others are getting their heads around it. Hope I am not offending anyone. Not my intention.

Am sending you loads of support and love,

Aisling.

 

[d4109125]

So sorry to hear this. I'm sure things have been discussed but PEG (percutaneous endoscopic gastrostomy) can be used when a person is unable to eat/drink via mouth. It is often used when a person is unable to swallow or suffers aspiration upon eating/drinking. Did he have a stroke? Was he checked for that?

It's a very difficult situation to decide what to do. I wish you the best.

 

[Red66]

So sorry to hear this. I'm sure things have been discussed but PEG (percutaneous endoscopic gastrostomy) can be used when a person is unable to eat/drink via mouth. It is often used when a person is unable to swallow or suffers aspiration upon eating/drinking. Did he have a stroke? Was he checked for that?

It's a very difficult situation to decide what to do. I wish you the best.

I am waiting for the 'next discussion' about Peg or nasogastric tube. I have read that the nasogastric tube doesn't prevent aspiration pneumonia, it's seems cruel artificial feeding, prolonging life and not promoting quality of life. It's no life lying in a bed, hallucinating.

No stroke that we are aware of, he has had scans at the end of last year and there were none up to that point.

I have also read that the mortality rate after aspiration pneumonia is 46.7%, but there is a 50/50 chance to everything eh? I don't want my Dad to die by any means but I dont want my big strong Dad to be 8st 12 and living a cruel existence. He just looks awful to what he once was.

Artificial nutrition seems cruel but it obviously can help. Fluids should be finished today, they took bloods as I left the hospital last night and they were to make a decision whether he needs more or not at this stage. His breathing is fine now and he looks better than he has done for a long time because of the fluid (and that is saying something) but once they are taken down he is back to his 200mls of water a day.

It makes me guilty for talking like this, but I suppose I am being realistic.

Red

 

[jaymor]

Have sent you a pm Red

 

[LadyA]

So sorry to hear about your dad, Red. Yes, dementia can progress dramatically in just a few months - some forms more so than others, particularly vascular, I think. My late husband was also walking around and quite well although he was gradually, slowly, losing weight, until he got suddenly very ill and was hospitalised last May. Aspiration Pneumonia was diagnosed, and from then on he couldn't walk or stand unaided, and could no longer eat except for pureed food and thickened liquids - and not much of those. The difference from your dad's case was that the AB's no longer worked. So, he was sent back "home" to his own bed in his own room at the nursing home where he was so happy, for end of life care, and he lived happily until August.

 

[jugglingmum]

In my time on this forum I have continually read that PEG feeding is not considered ethical by many medical professionals for dementia sufferers.

It is certainly not a route I would chose for my mother if she reached that stage, in fact I would fight tooth and nail to prevent it, as it just appears to be a method of cruelly prolonging life.

A colleague at works mum was offered PEG when her swallow went (she was in final stage breast cancer) and when she was taken to theatre she was deemed to frail to undergo the op.

 

[canary]

Mum is now only eating and drinking very small quantities. I would not want PEG or NGT feeding for her, but fortunately no-one has suggested it.

 

[Red66]

Thank you

Thank you so much for all your posts. I can to talk to friends, husband and extended family all day long but I think it is different when it's your loved one, and no doubt worse being your husband/wife.

No one really understands except you guys - strangers that offer support and words of comfort.

Much appreciated

Red xx

 

[Gwendy1]

Hi Red, my dad was in a similar position at end of January with his 2nd bout of aspiration pneumonia, he's on puréed diet etc.. He returned to care home and is stable, so far. He still coughs and wheezes when eating/drinking, but so far he's holding his own. I too read all the stats re prognosis following aspiration pneumonia and am constantly on the 'look out' for any illness with dad. ... You have a lot going on, hope you're coping ok. X

 

[Red66]

Hi Red, my dad was in a similar position at end of January with his 2nd bout of aspiration pneumonia, he's on puréed diet etc.. He returned to care home and is stable, so far. He still coughs and wheezes when eating/drinking, but so far he's holding his own. I too read all the stats re prognosis following aspiration pneumonia and am constantly on the 'look out' for any illness with dad. ... You have a lot going on, hope you're coping ok. X

Hi Gwendy,

The hospital are having problems with dad as he keeps pulling out the canulas and now there is talk of putting a line directly into his stomach for fluids. He is eating the pureed food at the moment, I say eating, it's not much, probably a full meal all day which is better than nothing. He just won't drink, you offer it to him and he clamps his mouth shut.

Hard to understand that some food goes in, but little fluid. It was like a blood bath earlier and I just know he will pull it out of his stomach too.

So unfair.

Red

 

[Gwendy1]

Hi Red, hope things have settled down and you're all ok? Was just thinking about u.x

 

[Red66]

Hi Red, hope things have settled down and you're all ok? Was just thinking about u.x

Hi Gwendy1,

That is so touching and thank you for your post. Been to see dad earlier in hospital, he is not fluids as they are just seeing how he is going, he has eaten dyaphagic diet apparently but wasn't clear on how much and has had about 250 mls of fluid. He is poorly in himself and seemed even more confused if that is possible.

What is also so sad was that he was doubly incontinent in the bed and all the sheets were soiled, he does this thing were he pulls all the covers up for all to see too. Thank god he has his own room!

He was that thirsty his top lip had curled under yet was told that they keep trying to give him fluids.

Also, he is meant to have his eyes bathed 3 times a day as they are permanently yellow and crusty and lo and behold they hadn't been cleaned. They had finished the chloramphenicol on the 6th but he still looks like he has conjunctivitis to me.

I know he doesn't drink when you try him, he clenches his teeth but all the other stuff the nurses could have dealt with, on top of feeling so sad I feel angry at the level of care in the hospital.

Each day yet more surprises, it's awful.

Sorry for rant again!

Red x

 

[d4109125]

I would ensure that the eye cleansing routine is noted in his care plan so that they have to sign they have done it, and thus will have no excuse. Ask the nurse for some glycerine swabsticks, they tend to come in lemon or blackcurrant and they are very nice for the patient to suck on and/or for you to moisten the lips. Helps prevent cracked lips.

It might also be suggested to use some Vaseline around the eyes as that will help prevent encrustations. Have a word with the Dr to have some antibiotic eye drops added to the medication to be on the safe side.

 

[Gwendy1]

Sadly, hospital care is not what it should be, or dare I say, used to be.. It's a sad situation, but I've found you need to be 'on their case' constantly. On one of dad's admissions I had to shave him, wash him and stay with him eventually ( guess I was lucky I could- took a week off from my very supportive work). All this, and the nurses refused to call him his first name because the computer printed his middle name on his wristband!!! Waited for me to meltdown before they changed it. I really feel for you. Stay strong.x


Sent from my iPhone using Talking Point

 

[Northern75]

Hi Red. Just wanted to send you a virtual hug - I have read your posts on this thread and the situation your family is in at the moment reads as a mirror of ours. The speed of your dad's (and my dad's) decline is frightening. The rapid loss of mobility, the incontinence, the pureed food, thickened drinks, the hallucinations and the aggression - my heart goes out to you and your family.

I am 33 and dad is 71, so similar ages to you and your dad. How you are managing this whilst bringing up young children I don't know - be kind to yourself, as you are doing an amazing job. Sending thoughts to you all. I've had the 'going mad' thoughts - I suppose they are inevitable. Stay strong xx

Dad could walk, talk, go the toilet, feed himself and go for a wander in November. It was going for a wander that got him sectioned.

He became aggressive, extremely aggressive and was on a cocktail of medications. Whether it's the progression of the disease, ie alzheimers, vascular dementia and lewy body or the works of the tablets I don't know but my poor Dad in less than 2 months was wheel chair bound, doubly incontinent, and can't feed himself or do any general daily tasks, oh and hallucinates.

Lost his swallow and on thickened fluids and pureed food. What on earth has happened?????

He is now bed bound and has aspiration pneumonia since Monday night. Anti biotics have worked but the fluids he is on is like a false sense of security, he seems bright, yet before the pneumonia he was just awful, had already lost his swallow.

No doubt he will suffer aspiration pneumonia again quite quickly, I had already checked his card ex at the hospital and end of life meds are already lined up. I don't even know why that was a shock, just listening to his breathing on Tuesday well 1150 on bank holiday Monday onwards, that was enough, thought he was going to die there and then.


Trying to make my family understand that once he comes off the iv fluids he is going to return to the way he was, they're not really listening, and then I feel bad for making a drama. He drank 200mls yesterday, some days less, he clamps his teeth down to not let the spout of the beaker in.

Feel like I am going mad, sorry for the rant, but no one seems to truly understand. My dad is only 73 and I am 36 with 2 children, one 3 and the other 1 years old. Life is hard at the moment, I am not self pitying, just watching my mum and dad and caring for a family, is tiring!

It's dreadful witnessing everything.

Red

 

[Red66]

Hi Red. Just wanted to send you a virtual hug - I have read your posts on this thread and the situation your family is in at the moment reads as a mirror of ours. The speed of your dad's (and my dad's) decline is frightening. The rapid loss of mobility, the incontinence, the pureed food, thickened drinks, the hallucinations and the aggression - my heart goes out to you and your family.

I am 33 and dad is 71, so similar ages to you and your dad. How you are managing this whilst bringing up young children I don't know - be kind to yourself, as you are doing an amazing job. Sending thoughts to you all. I've had the 'going mad' thoughts - I suppose they are inevitable. Stay strong xx

Hi Northern75,

Thanks for your post. I am sorry to hear about your situation too, it's an awful disease. Worry what's to come, my dad was so strong, he is bed bound now, has been for just over a month and essentially eating baby food and wearing nappies. How strange is life? That's how we start out!

What is your story Northern75? I am in the North too!

Red xx