End Of Life Care - Nursing Home not helping !!

[shandy123]

My lovely mum has been in hospital twice in the last 3 weeks due to Aspiration Pneumonia, She is still there after being admitted last Saturday. We have been told that she will be on 'End Of Life Care' if she goes back to the nursing home.
Unfortunately the hospital need the bed and told the nursing home last Thursday she could be discharged, even though she had been on Nil By Mouth for 5 days. The nursing home refused to have her back unless the hospital had tried to 'risk feed' her first - plus '' the care home manager was going on holiday '' until this Thursday and did not want to leave her staff to take care of mom if they hadn't tried to feed her, otherwise when the carers fed her on discharge she might aspirate again.

I am starting to loose my patients with all this faffing around, the hospital need the bed and the home don't want her unless she can eat and drink ( a little) and the care home manager wants her holiday !!!! and in the middle is my lovely mom who is suffering. The hospital are trying to Risk Feedher and she is managing very small amounts. I was wondering if anyone has any experience of taking someone with dementia out of a nuring home and putting them into a Hospice where she can be properley cared for in 'end Of Life'

thanks

Shandy

 

[Fed Up]

No but I sort of understand and would ask why the hospital is not doing more as its not fair to discharge a patient that ill really. I'd be cross with the hospital, not the home your mum deserves to end her life with dignity and compassion not in a situation where the staff might not be able to cope with her needs and cause her pain. I hope all goes well and ask the hospital why can't she stay if the end is so near. Please accept my sympathy it must be so hard to cope with as well.

 

[Brogues]

Hi, I wish I had an answer for you, my mum's not there yet but one thing that makes me shudder - the hospital saying they "need the bed"

Your mum needs it she sounds really poorly <3 I hope you can get a solution sorted soon, but it does sound serious and I would be really upset if my mum was that ill and the hospital was saying that to me xxx

 

[helly71]

Yes, I think the CH is doing the right thing for your mum...it's. The hospital that should not be letting her home unless they know she is safe ,is swallowing.
Forget the bed being needed, your mum needs it!!

Good luck

 

[Saffie]

I, too, think that this is not the Nursing home being unhelpful but rather being cautious. The hospital may well want the bed but your mother is in need of it at present. How will the hospital react if your mother returns there in a matter of hours because she has aspirated again?

I can also understand the manager not wanting to heap this responsibility on the shoulders of her staff when she is away and she is also entitled to have a break. She surely cannot be expected to cancel it simply becasue the hospital need your mother's bed.

It is hard being stuck in the middle. I do hope your mother is not in pain and that this situation will be soon resolved.Best wishes.

 

[Grannie G]

I feel for you shandy because no one seems to be prepared to step out of the box.

Yes people should be cautious because we live in a litigation society and yes people are entitled to their holidays but I`m really sorry you feel no one wants to take responsibility for your mother .

I don`t know what to suggest. I have been in a similar situation recently and thank goodness the care home was happy to care for my husband in his final days.

If the nursing home won`t accept your mother back without conditions, the hospital surely is duty bound to find a bed for her. She can`t be discharged to nowhere.

 

[Noorza]

Call the PALS department of the hospital, they are there to support you in supporting your mum. The hospital has a duty of care to facilitate a safe discharge, if the nursing home can't cope with feeding her (have no experience with this side of things) they she can't go there and she can't be discharged.

You could also ask for a meeting with the REACT team whose role it is to oversee the hospital discharge.

I found putting a letter to the ward manage outlining my concerns and the need for a safe discharge, their responsibility in facilitating this sharpened their focus and the discharge they were trying to rush through on Easter Thursday a couple of years ago was all put on hold. It becomes a part of their medical records and go file meaning you'll have proof that you informed them of the issues.

You don't need this right now but that's what I've had to do in the past.

 

[Saffie]

I found putting a letter to the ward manage outlining my concerns and the need for a safe discharge, their responsibility in facilitating this sharpened their focus and the discharge they were trying to rush through on Easter Thursday a couple of years ago was all put on hold. It becomes a part of their medical records and go file meaning you'll have proof that you informed them of the issues.

Yes, of course, the Bank holiday weekend approaching will have played a big part in the hospital's desire to discharge your mother. I'd forgotten this was the day before Good Friday!

 

[starryuk]

Yes, of course, the Bank holiday weekend approaching will have played a big part in the hospital's desire to discharge your mother. I'd forgotten this was the day before Good Friday!

My mum was discharged the day before Good Friday as well. She was sent back in to another hospital on Saturday night.

 

[Jools67]

My experience

I have removed my father from the nursing home he was in. I went to visit and found him slumped in a chair with his mouth wide open and looking like he was about to die. He is in the final stages and has almost lost his ability to swallow but I feel the home left him in the chair to die and just ticked off a half hour observation chart. I demanded a doctor be called and the ambulance came and took him to hospital - his heart rate was 190, his blood pressure very low, temperature 35 and he was seriously dehydrated. I didn't want him to die like that and in that home so he is currently in hospital awaiting a move for palliative care. The home are denying negligence but there were gaps in his care and there was food left for hours in his mouth which he couldn't swallow. This same scenario had occurred only 2 weeks previous but this time there is no going back. In hospital, his drip has now been removed and fluids and food are being offered but he is refusing all of it. I know he will pass away very soon, possibly within days but at the moment, he is in a clean bed and he is comfortable, not slumped in a chair all alone. This is a really difficult time for anyone in this position and our parents have the right to receive proper care. My father's wife, who has remained in Spain during his last 7 months, has appeared now he is near end of life (I hate her for it). She's furious that I have taken him out of the home but my father had no dignity where he was and I was the only one here to make a decision for him. Alzheimer's has cut his life short and robbed me of my father. Hopefully the new home will be less than a 55 mile round trip like the previous one and the nursing staff will ensure his comfort and dignity to the end. I'm ready to say goodbye to him now as I know this isn't the existence he would want for himself. I've told him all the things I wanted to say and I just hope I am there at the end to hold his hand and he falls asleep for the last time.

 

[angecmc]

I have removed my father from the nursing home he was in. I went to visit and found him slumped in a chair with his mouth wide open and looking like he was about to die. He is in the final stages and has almost lost his ability to swallow but I feel the home left him in the chair to die and just ticked off a half hour observation chart. I demanded a doctor be called and the ambulance came and took him to hospital - his heart rate was 190, his blood pressure very low, temperature 35 and he was seriously dehydrated. I didn't want him to die like that and in that home so he is currently in hospital awaiting a move for palliative care. The home are denying negligence but there were gaps in his care and there was food left for hours in his mouth which he couldn't swallow. This same scenario had occurred only 2 weeks previous but this time there is no going back. In hospital, his drip has now been removed and fluids and food are being offered but he is refusing all of it. I know he will pass away very soon, possibly within days but at the moment, he is in a clean bed and he is comfortable, not slumped in a chair all alone. This is a really difficult time for anyone in this position and our parents have the right to receive proper care. My father's wife, who has remained in Spain during his last 7 months, has appeared now he is near end of life (I hate her for it). She's furious that I have taken him out of the home but my father had no dignity where he was and I was the only one here to make a decision for him. Alzheimer's has cut his life short and robbed me of my father. Hopefully the new home will be less than a 55 mile round trip like the previous one and the nursing staff will ensure his comfort and dignity to the end. I'm ready to say goodbye to him now as I know this isn't the existence he would want for himself. I've told him all the things I wanted to say and I just hope I am there at the end to hold his hand and he falls asleep for the last time.

I am so sorry and sad to read about your poor Dads terrible treatment. It is a disgraceful way to treat anybody. I hope he is now comfortable and has peace for his final journey. My thoughts are with you xx

Ange

 

[Jools67]

RIP dad xx

I am so sorry and sad to read about your poor Dads terrible treatment. It is a disgraceful way to treat anybody. I hope he is now comfortable and has peace for his final journey. My thoughts are with you xx

Ange

My dad finally lost his fight tonight. I saw him earlier in the evening then got a call at midnight to say he had passed away so did the 25 mile journey back to hospital to say my final goodbye. Whilst I'm devastated about his passing, it is also a relief that it's over and he is finally at peace. He was very comfortable at the end and that was so important to me. I've found TP very comforting in recent months and will pop back periodically but for now I need to grieve for the father I have lost for the second time.

 

[Izzy]

I'm so sorry to read your news about your dad. Sending condolences and wishing you strength for the days and weeks to come.

 

[angecmc]

My dad finally lost his fight tonight. I saw him earlier in the evening then got a call at midnight to say he had passed away so did the 25 mile journey back to hospital to say my final goodbye. Whilst I'm devastated about his passing, it is also a relief that it's over and he is finally at peace. He was very comfortable at the end and that was so important to me. I've found TP very comforting in recent months and will pop back periodically but for now I need to grieve for the father I have lost for the second time.

I am so sorry to hear your sad news, please accept my condolences, he is indeed now at peace from this vile disease, I wish you strength for the coming days xx

Ange

 

[LYN T]

So sorry to read of your loss.

Wishing you strength for the times ahead

Take care

Lyn T

 

[cragmaid]

Sorry to hear your sad news. I wish you peace to remember the smiles and time to forget the heartache. Maureen.x.

 

[shandy123]

I am so sorry to hear of the sad loss of your father, Try to remember the good times over the bad ones .


shandy xx

 

[geum123]

Dear Jools67,
I'm so sorry to read that your Dad has passed away.
What a blessing that he had you, ensuring
that his final days were spent in comfort and dignity.

Please accept my condolences.
Look after yourself in the coming weeks.
Love
Geum xxx

 

[blandford516]

Hi Jools67,
So Sorry to hear about your loss . Twice yes we can identify with that . Thinking of you and hoping you find the strength .You cared and did the right thing for your father x

 

[Jools67]

thank you

Thank you for al the kind words and condolences following the death of my dad from Alzheimers. His funeral last Friday was difficult as his wife, for whatever reason, tried to prevent me from attending but I knew my dad would want me there and I was not going to miss out on the chance to say my final farewell to him. I can only describe the funeral his wife arranged for him as cold. My father was a former catholic and always wanted to be buried. He was cremated without any prayers or hymns and the reading for my father totally excluded me from his life - very hurtful when I spent the last 7 months ensuring he retained his dignity. His wife and her children stood around my dad's coffin posing and chatting as though it were some sort of show. It was embarrassing and clearly an attempt to goad me into some sort of reaction. How I managed to keep my dignity I will never know but in my heart, I know nothing she can do will ever take away those last months with my dad, particularly the last days and hours when I told him all the things that I wanted to - she didn't get that time with him because she couldn't be bothered to make the journey. I believe you reap what you sow in this life and I hope she can live with herself for all that she has done.