Help

[busylizzy2]

Mum at end of life care in hospital. for three days Mum has had no food or drink and they are refusing to give her any iv fluids. Mum is very dehydrated and they said she is only comfort feeding but being dehydrated is not helping her. This is the worse hospital I have ever seen. As a power of attorney I have requested iv fluids to be given, nurse said no and no to seeing a doctor until tomorrow by which time it may be too late. So worried what can I do?

[NannaB]

This sounds terrible. Is your mum in distress or sleeping peacefully? I don't know what to say. People can go about 7 days without water. If she is near the end are they thinking they will be prolonging the inevitable? If my husband was aware and uncomfortable I'd wan't him to have any help he could to make things bearable but if he wasn't in pain and near the end I'd probably think like the nurses but demand a doctors opinion.

I'm so sorry your mum is going through this and hope she is made comfortable for the time she has left.

My thoughts and prayers are with you at this very distressing time.

Sending you are big hug and wishing I could do more.

X

[abirke]

Call the head of the hospital, tell them you have ....medical power of attorney (?) and that you would like your mothers quality of life no matter much left to be maintained by giving her food and water.

AVB

Tim it's your turn.....he and KM know alot about this stuff

[busylizzy2]

thanks guys. It is very distressing for the family. the hospital are getting very shirty with us and especially me. I have to travel 6hr round trip to see Mum and tomorrow I am going to visit. The ward sister is suppose to be on holiday tomorrow but is coming in because I am. They said I am causing trouble for them because I am ringing who ever I can talk to to try and help Mum. I am neither aggressive or loud but I ask questions and expect Mum to be given her basic human rights, after all, I love her with all my being and she is Mum. I am aware that Mum is at end of life care but that does not mean her comfort , quality of life and basic human rights have to be denied. My sister phoned me today very distressed and I phoned and questioned the ward, spoke to site manager who spoke to 2 doctors for me. still they refused to give fluids; I have power of attorney but that seems to mean absolutely nothing. They have raised a safeguard saying that my sister has force fed Mum which is totally untrue. After they did this, they then kept asking all family members including my sister to feed Mum! Now after we questioned them about it, they have now stopped any family member giving Mum any fluids or food. Mum will not take any food or fluids from the nurses and while my sister visited this afternoon, never once did any nurse come and try to give Mum any food or fluids. They have told my sister that because she has spoken to me and I have in turn phoned various people today to try and get her on IV fluids they are very angry with her and if the ward sister hears my sisters name again then she said she will stop her seeing Mum altogether. No doubt I will shouted at tomorrow when I go to visit Mum and have a meeting with them. I am really distressed at the lack of care and even more at the lack of treatment, knowledge and basic care, it is not just us that are having a moan, it has been other patients and their families too. No wonder the hospital has a terrible CCQ report.The ward Mum was on before got her out of bed for a couple of hours a day; on this ward, Mum has not been out of bed for 6 weeks, having to use an uncomfortable cardboard bed pan, no shower given, no physio, no stimulation, not even a bit of music. It really makes me want to cry to think they are going to force Mum to stay on this god forsaken ward from the dark ages and let her die in a place that is hostile and with no compassion.

[abirke in reply to busylizzy2]

Well MUST she stay?

[Tugun in reply to busylizzy2]

Hi,

I have also been through this with both my aunt and mother in two different hospitals in Australia. I also don't believe that my mother or aunt should die of dehydration. I have also been told outright lies from certain doctors in order to get their way and had one of those doctors go behind my back to lower the amount of intravenous fluid to next to nil. Luckily I checked. ( I wonder why I felt the need to check?!) I was also told that my aunt was brain dead - She came back to consciousness 5 days later and certainly was not brain dead.

a) If you have Power of Attorney - You have full rights to demand fluid even over the doctor. If he says that her organs are failing - which I doubt if she is taking food- ask to see the results of the tests to ensure they are telling the truth. Tell them you are seeking legal advice.

b) They cannot stop you from feeding her unless they get a court order. Tell them it will need that but that you will continue to feed her. I doubt they will go that far. Just go in and feed her.

c) Don't deal with the minor people around you. (That includes doctors) Go to the top and first, if possible, check with a lawyer concerning your rights in this area. The Admin. of hospitals are concerned over legal rights and will ensure that even doctors don't overstep this.

d) Even though you want to - don't shout - as they could use this as an excuse to say you are trouble to other patients and ban you from the hospital. They cannot ban you for disagreeing with them.

e) If all else fails - Start a Petition or go to the press. The hospital is interfering with your rights. They won't like that and you are not alone. I am sure there are many more people out there with a similar problem.

[honjen43]

I feel for you too buzylizzy2. I am going thru same with my man. I too have had meetings with staff and questioned their methods. In the past week he has eaten very little. He can't speak easily but keeps his mouth closed so can't put much food or fluid in.

It is his decision. I can help myself by giving jelly, icecream, yoghurt. All count as fluid. Sips of water need to be given carefully so as not to 'drown' him.

Power of attorney here probably same as here in NZ. It does not include telling what drs can/should do. They in end make those decisions.

Make sure your mum is comfy, turned regularly and treated compassionately, and remember they will have seen end of life before if she is in such a ward. Give her hugs, show you care, help where you can, but above all, remember if she is able to communicate a decision to Dr, that is the one they will listen to, not yours, even with POA.

Accept that she feels ready to leave and show her you care, but let her go with your love. It may be a trial run she is experiencing, and if she comes through this, she will be less able to recover next time.

Thinking of you!

[Finoni]

I am so sorry about your experience, but I agree with honjen. It is so hard to see a loved one suffer and feel helpless. If she is truly at the end of life, can you get her home for her last days and take care of her with the help of hospice? It is quite possible that she is not hungry or thirsty, just very dry. Lemon swabs and small chips of ice can be enough to make her comfortable towards the end.

I recently heard the expression 'I choose heaven not hospital' from a young dying child. Makes a lot of sense.

Take care.

Finoni.

[kryste]

Tell them to FUCK OFF and give her some water.

What are they going to do put you in jail I suggest if she has trouble swollowing get some thick in to mix with it and take a straw hold your finger over the end and let her have a little bit of the time they are not in the room all the time I know I would not want to lay there and I bet your mom dont either, I am going to do what my Aunt wishes and no one else and if she wants a drink I am damn sure going to make sure she gets it/

Lots of hugs Kryste

[blackcushion in reply to kryste]

Well said, drs, nurses, in my experience with my mum they didnt give a fuck cause the didnt know anything about this awful disease x

[Joeglad]

It is an unhappy place to be watching someone you love die. I am supposing she is not conscious enough to take fluids - which is sadly what happens at the end of life. IV fluids will only delay the inevitable and in all honesty will not really help your mum. You could moisten your mum's lips with water or ice - being careful not to use too much water that may dribble into her mouth and make her choke.

When people are at the end of life the internal organs start to shut down and it is likely that her kidneys could not cope with the IV fluids - it wouldn't help.

Please remember hospitals are very familiar with death and dying and see it every day. They are not blase about it and just because you have power of attorney does not mean you can demand certain treatment anymore than anyone else could.

When you see your mum hold her hand and talk to her gently about memories or even what you have been doing. Don't spend these last precious times be filled with rancour and argument with nurses etc. I know you want the best for your mum but sometimes accepting the inevitable is the best way.

[GilliW in reply to Joeglad]

As we watched our husband and father slip away. We just wanted to make sure he was comfortable and not in pain. We swabbed his mouth and just held him, told him we loved him. Stroked him. The nurses changed him, bathed him. As much as you don't want them to leave you, you have to let go. Don't forget the medics see this all the time and do know what to do. Play their favourite music. Fill the room with joy. Just love them

It's hard but they are on their final trip make it good for them.

Please be calm. It's so hard but it's time to say goodbye.

[Joeglad]

Sorry - forgot to mention there is some information on Macmillan site. Google Macmillan end of life - it will explain a lot.

[Hidden]

Dear Busylizzie2, I think that you must be very careful as seemingly the medics in this country are all powerful. You may well end up being banned from seeing your mother or only allowed supervised visits. This is what happened to me and my poor father. I think you should speak to a solicitor who specialises in this field as soon as you can and get him/her to contact the hospital to let them know that they are being 'watched'. Try not to get cross with them or be rude as it will get you nowhere. You need to get legal protection for your mother and quickly as seemingly it is nearing the end for her. Honestly, this is such a traumatic and devastating time. You certainly are in a terrible hospital and there are so many around. They just add extra distress and suffering to all concerned and after all us carers have gone through, watching the disease progress it really is a disaster and takes some time, if ever, to recover from. Forget about our poor suffering loved one. It is just such a cruel and unnecessary horrible end to it all. Seek legal advice and either get a letter to put the hospital on notice or as time is short, get the lawyer to phone the director or manager of the hospital. I don't think you will get a satisfactory outcome any other way. They treat relatives with such disrespect. Best wishes. I am so sorry to hear of your problem but it is not uncommon in our hospitals. Any hope of a hospice or is it too late? X

[Hidden]

Sorry, Nader here again. I forgot to say, is the hospital following the Liverpool Care Pathway? I think that this has now been banned. Get legal support to fight these bullies in the hospital. They have no idea of how to behave. As you say, their methods are out of the dark ages. X

[am2015]

I am utterly shocked at Reading your post, absolutely disgusting. Fluids can be stopped, but they must be taking care of your mother. Seeing a Doctor is your right. I have spoken to a Doctor and he has said that you need to record all names and then contact the switchboard and ask for the Duty Manager and inform them that you will be making a compliant. The Duty Manager should start the ball rolling as they really do not want a written complaint to come in.

So sorry that you are having to face these idiots at such a difficult time. I really hope this helps.

My thoughts are with you, my mum is also very poorly and dread to think that the hospital could be so barbaric.

Afshan

[cabbagecottage]

Is your mother aware , is she aware of the upsets between the family and nursing staff.

Try and keep as calm as you can be sit with her and hold her , talk to her and let her know that all the family are . As much as you don't want to lose her she feels the same .

My own mother passed away in distressing circumstances , I sat with her for days ,she was in a nursing home for days .

All her grandchildren visited along with a new granddaughter ,I heared a gasp and quiet sobs . I quietly told her what a marvellous mother / grandmother she has been .

She passed away that night .

She once told me we were her assets .

[Georgepa in reply to cabbagecottage]

Is there any possibility of moving her to a hospice?

[Amilazy]

George you beat me I was was going to suggest getting in touch with local hospice who may be able to intervene or advice you. Check out websites on end of life procedures Macmillan Nurses and Marie Curie. Hospital sounds like they are following an end of life pathway similar to the discredited Liverpool pathway, ask to see it and ask who authorised it without your permission.

Tim

[JB569]

Where on earth are you? Which hospital?

[Tttp]

I am so sorry to hear about your mom and the treatment, I would take my mother out of there right now.

[ketchupman]

So sorry to be hearing all of this. It's a tough situation and I can see both points of view on whether to administer fluids or not. Had you previously discussed with your mother her wishes about the end? What would your mom want? Did she have a Living Will? Not sure if you guys have those, but it dictates how you want to be treated in your dying days.

Please know that you have a Christian friend in the USA that will be praying for you and your mom from across the pond.

Ketchupman

[dibber]

I've just lost my mother only a week ago sinfully understand all your worries. Difference being my mum was already in a care home and had been for the last 4 and a half years. Food and fluid were withdrawn with our agreeance two weeks before she left us as she was aspirating and didn't want her to end up drowning. She also had slipped into a comatozed state and was only groaning on movement. A syringe driver was put in and 48 hours after chayne stoking she was gone. Peacefully we hope because after all the hours day and night we'd been by her bedside she chose to leave us when we weren't there. if it is near the end for your mother then she definitely deserves to go with dignity so she will only get that from a good care home or hospice. There is no way my mother would of lasted so long if she'd been in hospital. So get the ball rolling get a social worker involved and also apply for NHS continuing care. We were lucky to be awarded it for mum and she got it for the last two or more years.

Good luck and hope you and your mum get what she deserves. X

[Julieandrog]

hold her tight and keep whispering that you love her, you are frightened , understandabley so. if mum has been under the care of a hospice they will have 24hr phone number you can ring they will liase with hospital and may advise a syringe driver delivering small amounts of morphine if she is distressed. there will be a manager on call for the hospital she is in if you are concerned speak to them.

much love julie

[Tugun]

Hi

Just want to add that I have been dehydrated and it is hell. Headaches, feeling sick - I would not want to go that way!

[Sun16flower]

I am saddened to read about your distressing experience. As we near the end of life the body no longer wants food/fluids as it naturally shuts down. Is your Mum showing signs of distress because she is thirsty.

What you as a family need is the professionals to sit down and take time to explain everything to you,have they asked the palliative care team to get involved, if not request a referral ASAP.

What is needed here above all is understanding care and compassion for your Mum and you the family.

[busylizzy2]

It is with great sadness to say that Mum passed away at 12.05 yesterday morning peacefully. The hospital would not allow us to move her and they lifted normal visiting times only on the last day. Never let your loved one go in to Stoke on trent hospital, especially on ward 233.

[goldcap]

How is your mum faring?