Very end now, and,chest infection but constantly asking for fluid?

Carrie1984

Registered User
Jun 18, 2016
9
0
My grandad is now bed bound at the home and has entered his very last stage .
Today I visited him for the first time in almost 2 weeks as I live away. He's been in an out of hospital with various falls (falling out of bed) and infections. After each hospital stay he rallied a little with the help of the iv antibiotics and fluids. But now he's taken the biggest dip and they aren't going to give him any more anti biotics. He's been back in the home for about 10 days.
Today when I saw him, He's constantly asking for a drink, but when sips are given, juice through a straw, he's coughing terribly and getting very distressed. It ended up with him coughing uncontrollably and I thought This could be it. I felt I was to blame as I'd kept giving him the sips of drink he was begging me for.
It's obviously been going to his lungs and probably caused infection.
Then he was wailing and shouting in distress while the carers tried to make him comfortable. He'd soiled himself badly and it was all very distressing for him and I came away in shock. I just feel like I'm in a daze.
I hate seeing my poor Grandad so unwell, so immobile, so close to the end. I just hope when he does go, it won't be in the distressing state I saw today? Please no.
 

Ed1964

Registered User
Jan 18, 2012
121
0
One thing is for sure, Carrie, you are not to blame. Who would refuse fluid to someone so ill? Infection is very likely to cause thirst. What a dreadful situation to be in, take care.

Ed
 

lemonjuice

Registered User
Jun 15, 2016
1,534
0
England
So feel for you. It is so distressing to see our loved ones like this.

With Mum if she's nil-by-mouth (a regular occurrences after an ASC) they have swabs to moisten the lips, so they don't actually need to swallow. I'd ask if that could be done. Can even be done with a bit of apple juice /joghurt.
 

stanleypj

Registered User
Dec 8, 2011
10,712
0
North West
It astonishes me that someone who is in a 'care home' cannot apparently be protected from falling out of bed.

On the thirst and swallowing it is very surprising that you are not being given explanations and offers of help, like the sponge lemonjuice mentions.
 

Carrie1984

Registered User
Jun 18, 2016
9
0
Thank you everyone for your replies.
I have my Grandads cries for help stuck in my head. The carers were only trying to sit him up to stop his coughing try and change him after he'd soiled himself but he sounded so distressed and desperate.

I also think he has another infection but no more anti biotics have been prescribed . His thirst is unquenchable and his cough terrible.

I'm sure a lot of you can relate to this. It is so strange how he perked up briefly with every hospital visit (due to the iv anti biotics and fluid I assume) to the point he would even eat a little (he hasn't eaten in the care home for 2+ months) and would even seem happier , and more alert, yet as soon as he was back in the home, he'd quickly deteriorate again.
They won't send him back to hospital again. I know a hospital environment isn't pleasant especially for a confused, frail and very poorly person. I understand why they didn't send him back. I just have a guilty niggle that we haven't done enough for him. I know deep down he needs to be free from all this though.

Regarding falling out of bed - the home he is in is ridiculously understaffed. It is only recently we have come to realise exactly how hazardous this is. We looked into moving him at one point, but he has always seemed settled there, and the staff that are there do seem very caring. It's also a stones throw from my mums house. We didn't know what to do for the best, and now he's at the final stage, no point dwelling on it.

Thanks for listening X
 

cragmaid

Registered User
Oct 18, 2010
7,936
0
North East England
Carrie, the What ifs and the If onlys need to be shut away. They cannot change anything now. The guilty feelings that we could have done more.....shake them off and bin them. Nothing can change the passage of time nor the final progression. Instead, fill your heart with love and your mind with warm memories of happier times. Dig deep...those memories are in there, hidden but waiting to be remembered. A laugh, a smile a " Do you remember..." will do you all more good than any regrets..... and just be with him as much as you can. Thinking of you, Maureen.x
 

Carrie1984

Registered User
Jun 18, 2016
9
0
Thank you for your kind words Maureen.
I will try and fill my mind with the happy memories of grandad looking after me and my sister when we were little. There's only me, my sister and my mum , so a very small family. We need each other right now X
 

Evie5831

Registered User
Nov 7, 2015
180
0
Hi Carrie,
I really feel your pain, my dad is in hospital with a severe infection with swallowing issues atm and I know how it feels to watch him like this.
One small thing that may help his comfort is giving your grandad his fluid on a spoon rather than through a straw. The speech and language therapist told me that for people who struggle to swallow a straw or beaker lid projects the fluid too far back in the mouth and causes aspiration in to the lung and starts the coughing off. Also does your grandad have his fluid thickened as this makes it easier for him to swallow.
My heart is with you at this difficult time
 

BR_ANA

Registered User
Jun 27, 2012
1,080
0
Brazil
If he ask for fluids he must receive it. Maybe on a cup or spoon instead of straw. If he cough he is defending his lung. Maybe a thickened fluid may help.

About falls. He may have something broken. Or hurt. It sounds me weird not calling help after a fall.

Sitting. Can he be sit on a chair with arms instead of bed? (As a wheelchair). I mean my mum falls to side but on chairs she moves her back until she slides to floor.
 

Carrie1984

Registered User
Jun 18, 2016
9
0
The care home have never suggested thickening fluids or mouth care. Or anything relating to end of life dementia care , despite claiming to be a dementia care home. They just say he has a few days left and he can have whatever we wants now a statement of intent is in place.
We don't think they have a clue to be honest. But they seem to do a good job in other respects and we can't move grandad now.

I was trying to explain to my mum about the aspiration pneumonia and how spoon feeding him liquid on our visits would be better. The problem with thickening fluid is that he may think we are trying to feed him and he is refusing any food and has done for 2 months. He is very very stubborn even at this end stage.

My question is - if he's still asking for fluid , (pleading and begging for a drink even, so we always comply at the moment) how and when will he slip away? Will he just end up choking from the fluid on his lungs? Or is there still a chance he will drift off peacefully ? He always said, he isn't scared of death, but scared of pain. I don't want him to have a traumatic end :(
 

nitram

Registered User
Apr 6, 2011
30,075
0
Bury
You refer to a care home implying that there are no nurses on their staff.

If this is correct you should consider involving district nursing, there may be a palliative care nurse, and also SALT (speech and language therapist) who deal with swallowing problems. This action may require a GP input.

You could also contact Admiral Nursing
There may be a local presence https://www.dementiauk.org/how-we-help/find-local-admiral-nurse-team/

or you could ring their helpline https://www.dementiauk.org/how-we-help/admiral-nursing-direct/

You can get special swabs to keep the mouth moist
http://www.medisave.co.uk/lemon-and...0-p-890.html?gclid=CLid8MuY-M0CFQhuGwoddmoM1w
and also plain swabs to used with iced, maybe flavoured, water
https://www.amazon.co.uk/foam-oral-...F8&qid=1468679664&sr=8-1&keywords=mouth+swabs

The GP can prescribe these, links only given as examples.

Unless the pwd is immobile the accepted practice to prevent them harming themselves by falling out of bed is to not use rails but push one side of the bed against a wall, lower the bed if possible, and position an alarmed bump mattress on the floor on the side not against the wall.
 

Carrie1984

Registered User
Jun 18, 2016
9
0
Thank you.
I spoke to my mum today about my grandad and there are definitely no nurses at the care home. There is a district nurse who visits to do procedures on the residents when required eg ear syringing.

There are no admiral nurses in the area unfortunately, not for quite some distance.
I have told my mum to speak with the GP and make some enquiries about getting mouth swabs etc, and get any more info on end of life care. I can't believe we haven't been told anything.

Who would administer the end of life medication if there are no nurses at the home? I assume GP prescribes it but then what?

Grandad still being given cups of tea that my mum holds in a beaker for him. I told her we need to look into thickening drinks and use spoon.

Thanks for all your help
 

nitram

Registered User
Apr 6, 2011
30,075
0
Bury
"Who would administer the end of life medication if there are no nurses at the home? I assume GP prescribes it but then what?"

The DN would normally be responsible for setting up the syringe driver for subcutaneous use using a dosage suggested by the GP.
 

Staff online

Forum statistics

Threads
138,123
Messages
1,993,170
Members
89,785
Latest member
MonkeyFeet