Cycle of not drinking, dehydration then IV fluids

Lynmax

Registered User
Nov 1, 2016
1,045
0
My mum has had a sudden down turn since December when she was treated with antibiotics for a UTI. Her resistance to help with personal care made it very hard to get her to take them and to accept toileting help so the care home staff struggled - a lot of shouting, swearing, biting and lashing out! She wasn’t eating well either so lost weight and became unsteady on her feet so had to use a wheelchair, which caused even more stress and anxiety.

After several visits by the GP, district nurse and paramedics, mum was admitted to hospital on 4th Jan to have IV fluids. She also had a couple of stage 1 pressure sores on her heels, caused we think from kicking the foot rest when carers tried to put her feet on them to move the chair. Mum was in for six days, against our will really as she was very aggressive on the ward and it was obvious from what the nurses were saying that they could not cope with her, we were not allowed to visit. She was heavily sedated for most of the time, kept in bed and is now incontinent. They actually told my brother that mum was refusing to eat or drink because she was at end of life.

Unfortunately, after three days back at the care home, she tested positive for Covid, along with several other residents and staff so the home went into lockdown. Even though I have ECG status, I could no longer visit as mum was deemed to have Covid, luckily with no apparent symptoms. There were still problems with mum eating and drinking enough, it was taking the staff a long time to persuade her to eat or drink, she refused to allow them to help her which made it hard. She then had more antibiotics for another UTI and possible oral thrush - not that she would let anyone look in her mouth without trying to bite them! I had a long conversation with the doctor about future treatment plans and we agreed that she would not go to hospital for any aggressive treatment ( already got a DNA in place) and when the time came, end of life meds would be administered at the care home - but the doctor did not believe that Mum was end of life yet, she just needs to eat and drink more!

Yesterday, the Manager called the district nurse out to look at a new sore on her thigh and to assess if she was in pain as she was slumped in her chair at times. The nurse said she could feel some fluid around the hip joint which could be an indication of a fracture so an ambulance was called and I met it at A&E. To but this very long saga short, Mum does not have a fracture but was dehydrated ( not a surprise) so back on a drip and she was also some given paracetamol through the drip as well. I kept saying she was not to be admitted, the care homes were happy to have her back but my wishes were totally ignored, the consultant seemed to ignore the reason for her being taken to hospital and just wanted to blame the care home for poor care! Luckily the care home did a full body map after she returned last time which shows that she had more sores on discharge than when she went in.

Eventually, after 11 hours, I had to concede that admittance to a ward was necessary to get her fluids up adequately. By this time, Mum had not been given any thing to drink and as she’d been asleep for ages with her mouth open, her mouth was dry, her tongue furry and teeth were black, she looked awful. I did manage to get some water but she was not able to drink it then and they did not have any mouth swaps or other means to wet her lips and tongue. It had taken me six hours to get them to change her pad by which time she needed totally changing, ( nightie, sheets and blanket), it was only after she was moved from the triage area to a different part of the ED that I managed to find a helpful nurse.

So, after ignoring me again when I pointed out that it was pointless to do a PCR test ( not recommended within 90 days of having Covid as there are still traces of the virus in the body) Mum went to a ward and I went home. Today, my brother found that she is on a Covid ward as her test came back positive! She is on a drip for fluids and also antibiotics for a UTI - which was news to us! She has to wait until Monday at the earliest to be assessed by the Tissue Viability Nurse due to all the sores.

Apologies, I’ve realised that this has ended up in a rant about the hospital! I started the thread to get your advice about how we can get her to drink enough when she goes back to the care home to avoid this negative cycle of dehydration, IV fluids in hospital, not drinking, dehydration again etc etc. The home have already tried different things to tempt her and do spend a lot of time with her but she needs more 1 to 1 care for constant reminders, she was able to reach out to pick up a glass when I visited on Wednesday as she drank half a glass of lucosade that I’d taken. We’re having a meeting with the senior staff early next week to get the care plan updated so I want to have some ideas what we might be looking at. I’ve thought of ice chips, mouth swabs, thickened drinks, sippy cups and “ wet” food. They have already tried the new jelly type sweets that dissolve, a straw, yogurt, ice lollies and a few other things but mum rejected them vigorously. My sister wants us to apply for CHC funding for 1 to 1 care. Is there any thing else we can do?

I appreciate that at 89 years old, it is possible that Mum is at end of life but only a few weeks ago she was walking around, going to the toilet with just a bit of support, eating and looking reasonably well. Now she is frail, in a wheelchair, incontinent, gaunt, has sunken eyes, cracked lips, skin sores and her teeth are disgusting. She must be in pain and uncomfortable. I just want to get her to take fluids orally to avoid another hospital visit. Or to allow her peace and support to die at her care home.

Gosh, if you have read all this, you are really kind but I’m so upset and dread this situation repeating over again. My siblings are all in agreement fortunately but I don’t want to unburden myself on them.

Thank you
 
Last edited:

SERENA50

Registered User
Jan 17, 2018
433
0
My mum has had a sudden down turn since December when she was treated with antibiotics for a UTI. Her resistance to help with personal care made it very hard to get her to take them and to accept toileting help so the care home staff struggled - a lot of shouting, swearing, biting and lashing out! She wasn’t eating well either so lost weight and became unsteady on her feet so had to use a wheelchair, which caused even more stress and anxiety.

After several visits by the GP, district nurse and paramedics, mum was admitted to hospital on 4th Jan to have IV fluids. She also had a couple of stage 1 pressure sores on her heels, caused we think from kicking the foot rest when carers tried to put her feet on them to move the chair. Mum was in for six days, against our will really as she was very aggressive on the ward and it was obvious from what the nurses were saying that they could not cope with her, we were not allowed to visit. She was heavily sedated for most of the time, kept in bed and is now incontinent. They actually told my brother that mum was refusing to eat or drink because she was at end of life.

Unfortunately, after three days back at the care home, she tested positive for Covid, along with several other residents and staff so the home went into lockdown. Even though I have ECG status, I could no longer visit as mum was deemed to have Covid, luckily with no apparent symptoms. There were still problems with mum eating and drinking enough, it was taking the staff a long time to persuade her to eat or drink, she refused to allow them to help her which made it hard. She then had more antibiotics for another UTI and possible oral thrush - not that she would let anyone look in her mouth without trying to bite them! I had a long conversation with the doctor about future treatment plans and we agreed that she would not go to hospital for any aggressive treatment ( already got a DNA in place) and when the time came, end of life meds would be administered at the care home - but the doctor did not believe that Mum was end of life yet, she just needs to eat and drink more!

Yesterday, the Manager called the district nurse out to look at a new sore on her thigh and to assess if she was in pain as she was slumped in her chair at times. The nurse said she could feel some fluid around the hip joint which could be an indication of a fracture so an ambulance was called and I met it at A&E. To but this very long saga short, Mum does not have a fracture but was dehydrated ( not a surprise) so back on a drip and she was also some given paracetamol through the drip as well. I kept saying she was not to be admitted, the care homes were happy to have her back but my wishes were totally ignored, the consultant seemed to ignore the reason for her being taken to hospital and just wanted to blame the care home for poor care! Luckily the care home did a full body map after she returned last time which shows that she had more sores on discharge than when she went in.

Eventually, after 11 hours, I had to concede that admittance to a ward was necessary to get her fluids up adequately. By this time, Mum had not been given any thing to drink and as she’d been asleep for ages with her mouth open, her mouth was dry, her tongue furry and teeth were black, she looked awful. I did manage to get some water but she was not able to drink it then and they did not have any mouth swaps or other means to wet her lips and tongue. It had taken me six hours to get them to change her pad by which time she needed totally changing, ( nightie, sheets and blanket), it was only after she was moved from the triage area to a different part of the ED that I managed to find a helpful nurse.

So, after ignoring me again when I pointed out that it was pointless to do a PCR test ( not recommended within 90 days of having Covid as there are still traces of the virus in the body) Mum went to a ward and I went home. Today, my brother found that she is on a Covid ward as her test came back positive! She is on a drip for fluids and also antibiotics for a UTI - which was news to us! She has to wait until Monday at the earliest to be assessed by the Tissue Viability Nurse due to all the sores.

Apologies, I’ve realised that this has ended up in a rant about the hospital! I started the thread to get your advice about how we can get her to drink enough when she goes back to the care home to avoid this negative cycle of dehydration, IV fluids in hospital, not drinking, dehydration again etc etc. The home have already tried different things to tempt her and do spend a lot of time with her but she needs more 1 to 1 care for constant reminders, she was able to reach out to pick up a glass when I visited on Wednesday as she drank half a glass of lucosade that I’d taken. We’re having a meeting with the senior staff early next week to get the care plan updated so I want to have some ideas what we might be looking at. I’ve thought of ice chips, mouth swabs, thickened drinks, sippy cups and “ wet” food. They have already tried the new jelly type sweets that dissolve, a straw, yogurt, ice lollies and a few other things but mum rejected them vigorously. My sister wants us to apply for CHC funding for 1 to 1 care. Is there any thing else we can do?

I appreciate that at 89 years old, it is possible that Mum is at end of life but only a few weeks ago she was walking around, going to the toilet with just a bit of support, eating and looking reasonably well. Now she is frail, in a wheelchair, incontinent, gaunt, has sunken eyes, cracked lips, skin sores and her teeth are disgusting. She must be in pain and uncomfortable. I just want to get her to take fluids orally to avoid another hospital visit. Or to allow her peace and support to die at her care home.

Gosh, if you have read all this, you are really kind but I’m so upset and dread this situation repeating over again. My siblings are all in agreement fortunately but I don’t want to unburden myself on them.

Thank you
Hi

I can only send you a cyber hug ? I did read all your post and whilst I don't have any great advice I really do feel for you and your mum and your family too. I totally understand not wanting to unburden on your siblings. Maybe the one to one care will make your mum more comfortable, I can't see anything else you could do, you seem to be doing everything you can xx I am sure a few other people will come along and offer some more ideas but the lucosade sounds like your mum did find that palatable so maybe some one to one care will really help.
 

Sarasa

Volunteer Host
Apr 13, 2018
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Nottinghamshire
Oh @Lynmax what a nightmare. It sounds like your mum didn’t really have a chance to recover from the first hospital stay and now she is back again. I think applying for CHC sounds a very good idea. Although she may not be imminently at the end of life I’d try to fast track it if you can. I’d also ask to talk to the dementia nurse at the hospital and PALs about your concerns. Your mum might have gone downhill anyway but the hospital stays aren’t helping. She may not have a broken hip, but it does sound like she might be in pain from something else, so I hope they try to really find out what’s going on.
 

Jessbow

Registered User
Mar 1, 2013
5,888
0
Midlands
Do you have any idea how much she actually consumes in the way of fluids every day?

If she is urinating regularly she is possibly getting enough. id dh have a favourite drink atall? My late mother lived out her days on Fizzy pop! But at least it was fluids
 

Sandy47

Registered User
Aug 14, 2019
66
0
I am so sorry you have had to go through all this and it sounds very similar to my experiences when my OH got admitted to hospital recently. He came out in a totally different condition from when he went in and palliative care plans were put in place.

The hospital sent him home with several problems including bed sores, difficulty eating and drinking and total loss of mobilty but with proper care he has improved so I hope your mum will too. He also has trouble drinking enough and it is a constant worry, but it sounds like you and everyone at the home is doing all you can. The hospital told me they couldn't force him to eat or drink and I think we have to accept that. It is very hard to see someone you love
refuse things that you know will improve their well being but that is the nature of dementia and unfortunately there is little we can do to change that. I can't offer any solutions as it looks like everything possible has been tried but hope you can find a way to cope to with the situation to make it easier for you.
 

canary

Registered User
Feb 25, 2014
25,560
0
South coast
Sometimes when people with dementia reach end of life they can go downhill incredibly fast. My mum was chatty, able to feed herself, poor mobility but still able to get around with a frame - then she fell and broke her hip and within a month had passed away.
Your mum has had so much going on within such a short time that it may have all overwhelmed her and she no longer has the strength to fight anymore.
I think you will have to wait and see whether she recovers.
 

jennifer1967

Registered User
Mar 15, 2020
25,681
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Southampton
my nan went in a carehome and had a fall. went to hospital and was bruised on her face and neck badly. no broken bones. she refused fluids by closing her mouth tightly even with sponges etc, didnt allow them to put a trip in for fluids and refused all food. she died 6 days later. she always said if she went to hospital, she wouldnt be coming out again. her mind was made up and like everything else, she did it her way. she was 96yo. this was pre-covid and they just dont make people like her generation any more.
 

Lynmax

Registered User
Nov 1, 2016
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Thanks for your replies. The care home keep a record of how much she was drinking, sometimes as little as 200 ml a day. Unfortunately mum does not have a favourite drink, it used to be strong tea but she appears to have gone off hot drinks so juice is all I have seen her drink.

It’s pointless phoning the hospital to complain today ( Sunday) but we are going to try again to get some answers on Monday. I will be trying to contact PALs and the Dementia Nurse to see if they can help. I’ve just ordered some mouth swabs and bottles with pipettes so we cam wet her mouth which I’m sure will make her more comfortable. My sister is also going to ask to be a second ECG which is permitted in certain circumstances.
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,406
0
High Peak
Oh dear. I read your post nodding - it's so sad that this is how it is.

I think you're right about the only thing that might help, i.e. more one to one time with someone just trying to persuade her to drink/eat. So CHC would be a good plan, if you can bear to go through the procedure. Your mum's behaviour would 'help' the application.

My mum also went downhill very quickly at the end. Nothing in particular wrong, just 'off-colour' for a couple of weeks, possibly an infection they thought, and she was eating and drinking very little. I guess her time had come.

The important thing now is to get your mum back to her care home - hospital is the very worst place for her, so fingers crossed you can achieve that...
 

Duggies-girl

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Sep 6, 2017
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I read your post to the end @Lynmax and I am sorry that this has happened to your mum and that you are in this stressful position of trying to do the best thing for her.

I hope that things improve for you both one way or another because it's very hard and hospital is the last place you want her to be in my experience. I hope that they get her back to care home as soon as possible.
 

Lynmax

Registered User
Nov 1, 2016
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I spoke to someone on the ward today and could hear my mum screaming in the background! Hopefully they will get fed up soon and agree that a hospital ward is not the right place for her. This nurse was actually quite understanding, she was annoyed as I am that mum has been put on a Covid ward as she should not have been given a PCR test after contracting Covid mid January but it’s too late now to correct that. I was very blunt and said that all I want is for mum to be allowed to die as peacefully as possible in her own room with the carers she knows looking after her and her children visiting her. I now accept that as she is still refusing to drink orally she will die fairly soon but it is cruel leaving her alone on a ward.

The nurse told me to phone at 11 tomorrow when the consultant should be on the ward so that I can go through mums medical history and our reasons for not wanting any more hospital admissions. I’m also going to ask the manager of the care home to discuss the situation with their GP who visits the home every Monday and actually saw Mum last week.

I’m keeping it very simple in all my future discussions, we were forced to agree that Mum could go into A&E for an xray of her hip, it’s not a fracture so she should have gone home , end of. The dehydration is not new, as soon as they get fluid in her, she gets dehydrated again because she refuses to drink and we are in a repeating circle. Poor mum, since 4th Jan, she has had a week in hospital, then had Covid and is now back in hospital!

I’m not going to mention the waiting time on a trolly, the refusal to change her incontinence pad for six hours, the lack of food or drink offered during our 12 hour wait ( she might have tried something as I was there to persuade her constantly) , the going against protocol to do a PCR test, ignoring my wishes as NOK and POA and ignoring the DNA form which refers to no more hospital admissions, the mix up by the porters which led to a second unnecessary X-ray, the lack of reading of notes, no turning to relieve pressure sores etc etc. That can wait for now but I won’t forget!
 

Duggies-girl

Registered User
Sep 6, 2017
3,690
0
@Lynmax this all reminds me of dads horrendous hospital stay but that was pre covid and I visited twice a day just to make sure that that he was still alive and to see what other catastrophe had occurred overnight. I can't imagine what it must be like if you can't get to see her, I would be going out of my mind, you must be stressed beyond belief. It is just too cruel and like you say, none of this should have happened. I would be livid but sometimes all we want is for things to be made better.

I really hope you get a sensible conversation with someone this morning and that something good comes out of it and your mum is allowed to go back to the care home and die in peace as you would wish her to, surrounded by loved ones and kindness.

It is inexcusable to have all of this happen and just hope that today is better for you.
 

canary

Registered User
Feb 25, 2014
25,560
0
South coast
Hi @Lynmax
I got into a cycle like this with mum after her hip fracture and repair
Fortunately the doctor in the hospital believed her when she told him that she was eating and drinking normally, so he sent her back to her care home. Once back I spoke to her GP about not sending her back to the hospital. He agreed and put her on palliative care - she was already dying at this stage - and she passed away just over a fortnight later.

I do hope you can get your mum back to the care home and she can pass away peacefully in a place she recognises, tended by people who know her.
 

Sarasa

Volunteer Host
Apr 13, 2018
7,508
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Nottinghamshire
I hope you managed to get hold the consultant, and if your mum isn't on the way back to the care home yet soon will be @Lynmax . Hospitals are just the worst places for people with dementia.
 

Lynmax

Registered User
Nov 1, 2016
1,045
0
Still not managed to get Mum discharged! When I spoke to a doctor this afternoon, i was told that as Mum had no medical needs, she could be discharged. All they had to do was confirm with the care home that her room was available and mum could go. I heard nothing more so phones again to be told that the ward was just waiting to hear back from the home that they were happy with mums Covid status ( everyone now agreed that she’d had a false positive reading having just recovered from covid)

It turned out that no one had phoned the care home! So after yet more phone calls from the Manager and me, I was informed by a nurse that mum could not go home as they had put in a safeguarding referral regarding the pressure sores which are now significant. Basically they inferred that the care home were not providing adequate care. The person I spoke to was not aware that mum got some of the sores while in hospital earlier in the month as evidenced by the body map done by the care home as soon as she was discharged. Until the tissue viability niurse has seen mum and prescribed treatment and dressings, mum cannot be discharged - even if this nurse is too busy to see mum for a week!

The ward nurse was adamant that their safeguarding concerns over rule any POA or next of kin or mums wishes. She was rather unpleasant towards me and rude about the care home “ It’s only a residential home not a nursing home so the carers are not able to look after her pressure sores,” No consideration for the District Nurses who visit mum daily to change dressings nor the air mattress mum has. I pointed out that mum was not bed bound in the care home and sat in her chair most of the day so relieving the pressure on her heels and was turned every two hours through the night.

To complicate things, the care home have also raised a safeguarding concern about the previous care mum received in the hospital. So, lots more phone calls to make, both my brother and sister will be phoning and I will try to speak to the Dementia Matron.
 

jennifer1967

Registered User
Mar 15, 2020
25,681
0
Southampton
talk about claim and counter claim with your mum stuck in the middle. while they quibble about it, is your mum in bed because that will give her more pressure sores. i hope she gets back to the carehome soon and they can argue it out with each other while she is being cared for in her own surroundings.
 

Lynmax

Registered User
Nov 1, 2016
1,045
0
Well, thanks to information gained from previous threads, I emailed the Dementia Matron on Wednesday and had a wonderful, positive reply within three hours. She had contacted both Safeguarding and the tissue viability nurse to see what was happening and told me that the viability nurse could do an assessment at the care home ( not what I was told by a nurse on the ward) and I also had a phone call from a Safeguarding social worker.

The outcome was that the following day, Thursday, my mum was discharged back to her care home! Exactly what I wanted! The social worker was impressed with the timeline of medical interventions provided by the home and the safeguarding concern was dismissed. So four days after the hospital consultant said mum needed no more treatment and was ready to go home, she finally returned to her own room. On arrival at the care home, she was welcomed back and are a decent amount of food and amazingly gulped a whole glass of water! It was obvious that she had a vert dry mouth and had not drank much orally while in hospital - I should add that my mum hates drinking plain water!

She had a shower and put her own nightie on to settee down to watching her football team win the Premier League yet again on dvd! Im going to visit her tomorrow when hopefully she has had a good nights sleep.

I know mum will refuse to eat or drink again but hopefully our wishes , agreed with carers and the GP, to remain at the care home, will be honoured. The enthusiasm in the voice of her lead Carer during our phone call about her return made me cry.

I am so grateful for the intervention of the Dementia Nurse. I made it clear in my email to her that I was not making a complaint ( although I kind of was,) but was asking for her help was the right approach to get her help.

I will sleep well tonight for the first time in a week. Thanks to everyone here for your support and advice.
 

Palerider

Registered User
Aug 9, 2015
4,178
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56
North West
hmm in summary its like the day the McMillan nures dedided to hang fluids up on my sister as she was in her last throwing days because she said her urine was dark -I replied of course it is she is dying and take that down its completely inhumane to prolong life....and an hour later the fluid dissapeared.