Father being malnourished in hospital

[rosy apple cheeks]

Hello, I am hoping to get some advice to help me help my Father.

He is basically being starved to death and is receiving very poor care in hospital.
I’ll give some background and then I he current problem.
Dads 79 and has complex health needs diabetes, heart failure, slow healing leg and foot wounds. He has had some kind of memory decline for 6 years but still has no diagnosis for various reasons.

The last time I saw Dad was 3 days before he was admitted to hospital and he was walking with the aid of a stick and holding a conversation and interacting with people and recognising people he knows and remembering some dates.

He went in to hospital and I saw him a few days after and he was sleepy but had a good colour and his leg wounds looked good and dry. He went in for a UTI and I was not at all worried as this had happened a few times and he get antibiotics and comes home.

The next time I saw Dad was 7 days later and he looked really really ill. He’s lost lots of weight, was catheterised, delirious and look like he’s had a stroke. He cannot speak and his jaw is juddering. He mostly makes noises and random words. Sometimes he says a whole sentence.

I’ve been in 3 hours a day for 3 days trying to get water and food in to him. I’ve managed about 4 small cups of water and 10 tiny mouth fulls of food.

I’ve not seen any attempt to really communicate with Dad, he’s had no physio, and is not on IV fluids. No one came to feed him or offer water while I was there.

I want to advocate for him and have talked to PALS who have spoken to the sister and she just tried to reassure me. I want action not platitudes.

He has been in for 10 days snd they are only just checking his leg wounds for infection ?

I want to violently shake them all. They written him off to just die.

Help me please.

 

[Jessbow]

What happens at meal times, Is he not given food, or is he just not eating it?

Surely if he isnt being given food he should ( minimum) be on a drip? have you asked why he ist?

 

[rosy apple cheeks]

What happens at meal times, Is he not given food, or is he just not eating it?

Surely if he isnt being given food he should ( minimum) be on a drip? have you asked why he ist?

Hello, thank you for answering. Food and water are available ie put on the table in front of him but he can’t co ordinate himself to eat it. He is very weak and can barely lift his arms. He is also totally out of it 95% of the time.

I can get him to sip water if I stand next to him and encourage him and hold up his head. He can’t hold the cup.

I can get him to eat a few mouthfuls of food during the few moments he is awake but it takes 100% commitment from me to to even this tiny amout in the 3 hours I am there.

I have been assured they are helping him.

All I see is a husk in a bed wasting away. He needs to get food and water in him.

I’m so desperate.

 

[canary]

Im so sorry.
I think you need to speak to the doctor and have a very open and frank conversation about what has happened and what they expect to happen now. Please ask for an appointment if they cant get hold of anyone at the time. You need to know what what is happening.

 

[rosy apple cheeks]

Im so sorry.
I think you need to speak to the doctor and have a very open and frank conversation about what has happened and what they expect to happen now. Please ask for an appointment if they cant get hold of anyone at the time. You need to know what what is happening.

Thank you. I have had a quick chat with the dr.

Am I asking if this is end of life care?

His OT came to me for a ‘frank discussion’ and said he was not safe to be discharged home. Which was very clear to me. We discussed Dad going in to care/respite to see if the delirium resolved.

I’m realistic but always hopeful of one more go around the loop. I can see he is very ill and may not recover. In the meantime I think food and water give him a chance of improvement.

 

[canary]

I cant make that diagnosis of End of Life, but I must say that it is something that occurred to me. When someone is at End of Life due to dementia one of the main symptoms is that they stop eating and drinking because the body can no longer process food or fluid and no longer requires it. Many people think that they starve to death, but this is not so - they are not eating and drinking because they are already dying.

Im not saying that this is what is happening in your dads case, only a doctor can say that and it may not be true. But it might be, so you need to talk to the doctor and find out.
xxxx

 

[Wildflowerlady]

Hello @rosy apple cheeks am so sorry to read your post, A good chat is needed so that you know what is really happening as your dad may recover or possibly be at End Of Life stage. My dad went into hospital in December last year and was put on an IV drip for just over two weeks but we were told by the doctor they couldn't leave a drip in for long. Tests revealed my dad had a ulcer in his stomach and a small stroke. The ulcer was cauterized successfully but my dad didn't eat or drink again. The drip was removed and I queried the lack of feeding feeling like you my dad was actually being starved. Dad was so thin not ever having been a large man it was horrible to see. I asked if dad could be offered something and in fairness the nurse asked him if he would like a bit of yogurt but dad said no same regarding some tea he wasn't awake much but a couple of visits he managed a little chat and smiled at me. The doctor I spoke with said that there was a risk of aspiration into the lungs but she said they would offer dad something and was up to him if he wanted it. I believe this was because I was upset and said well he will die if he doesn't eat anyway. I didn't really understand what I was asking of them other than I wanted my dad to recover and be returned to the care home that he had only gone into a few weeks earlier. The manager at the care home dad was returned to for his palliative care said that at the stage dad had reached Advanced Mixed Dementia and the complication of a small stroke that hunger and thirst was not as we knew it to the person that had reached his stage of End Of Life and they assured me dad was not suffering or being starved but he had just reached the end of his life. My dad by the time he went back to the care home he wasn't really awake again, sadly he just wasted away until he passed a couple of weeks later. My dad was 86 years so your dad is somewhat younger so may well have a better outcome. Thoughts are with you at this trying time.

 

[rosy apple cheeks]

Hello @rosy apple cheeks am so sorry to read your post, A good chat is needed so that you know what is really happening as your dad may recover or possibly be at End Of Life stage. My dad went into hospital in December last year and was put on an IV drip for just over two weeks but we were told by the doctor they couldn't leave a drip in for long. Tests revealed my dad had a ulcer in his stomach and a small stroke. The ulcer was cauterized successfully but my dad didn't eat or drink again. The drip was removed and I queried the lack of feeding feeling like you my dad was actually being starved. Dad was so thin not ever having been a large man it was horrible to see. I asked if dad could be offered something and in fairness the nurse asked him if he would like a bit of yogurt but dad said no same regarding some tea he wasn't awake much but a couple of visits he managed a little chat and smiled at me. The doctor I spoke with said that there was a risk of aspiration into the lungs but she said they would offer dad something and was up to him if he wanted it. I believe this was because I was upset and said well he will die if he doesn't eat anyway. I didn't really understand what I was asking of them other than I wanted my dad to recover and be returned to the care home that he had only gone into a few weeks earlier. The manager at the care home dad was returned to for his palliative care said that at the stage dad had reached Advanced Mixed Dementia and the complication of a small stroke that hunger and thirst was not as we knew it to the person that had reached his stage of End Of Life and they assured me dad was not suffering or being starved but he had just reached the end of his life. My dad by the time he went back to the care home he wasn't really awake again, sadly he just wasted away until he passed a couple of weeks later. My dad was 86 years so your dad is somewhat younger so may well have a better outcome. Thoughts are with you at this trying time.

Thank you for your reply. I am sorry for your loss.

I’ll try to have a chat tomorrow, Thank you all.

 

[Duggies-girl]

Hi @rosy apple cheeks my 89 year old dads story was different, he was getting around, joking with people, having a good life really, although wobbly with a stick and obvious memory problems and a cancer diagnosis but otherwise happy and okay. He was admitted to hospital with pneumonia weighing 11 stone. His care was awful and he developed delirium, he also had a heart attack and a stroke bought on by stress in my opinion. I was visiting twice a day every day and out of my mind with worry. He came out 3 weeks later, and almost 3 stone lighter and his dementia was very much worse. He recovered to an extent, put a couple of stone back on and lived another year in his own home happily.

Your dad may or may not be at end of life and I know they are under a strain because of covid but basic care of at least offering food and drink is not a lot to expect. I think care/respite may be a better place for your father if it is at all possible. All we want is the best for them.

 

[Grannie G]

Food and water are available ie put on the table in front of him but he can’t co ordinate himself to eat it.

Hello @rosy apple cheeks

This was the bone of contention when my husband was in hospital

They wouldn`t allow me to stay with him but when we went at visiting time his food was untouched in front of him and he sat there looking bewildered.

He didn`t know the food was for him. He wouldn`t have been able to take the lid off a pot of yoghurt. The trays from other patients had been cleared away and my husband`s was still in from of him.

It is unacceptable treatment. I made a formal complaint to the hospital and action was taken.

 

[rosy apple cheeks]

Hello @rosy apple cheeks

This was the bone of contention when my husband was in hospital

They wouldn`t allow me to stay with him but when we went at visiting time his food was untouched in front of him and he sat there looking bewildered.

He didn`t know the food was for him. He wouldn`t have been able to take the lid off a pot of yoghurt. The trays from other patients had been cleared away and my husband`s was still in from of him.

It is unacceptable treatment. I made a formal complaint to the hospital and action was taken.

Hello, I just thought I would give you an update and say thank you for the advice.

I made a formal complaint and Dads care improved dramatically. The next time I saw him he was sitting up in bed, more alert, a good colour, more lucid and able to hold a cup and drink.

A Dr called me and I asked her to explain Dads dramatic weight loss. She was unable to said he should have had more support.

So everything I suspected was indeed true.

Dad was also catheterised which is not advised for patients with delirium. As if by magic that was also removed when I arrived the next day.

Dad had received iv fluids and vitamins.

They wrote my Dad off and harmed him with their lazy nursing. I am still beyond livid and will escalate the complaint until I feel less angry which could take a while as I feel quite violently about it.

Thank you Grannie G.

 

[Grannie G]

Well done @rosy apple cheeks

There is no need to go in all guns blazing but we do need to speak for those who cannot speak for themselves.

I`m pleased your complaint was upheld and your dad received better treatment. It shouldn`t have come to that and I hope the hospital will have the grace to make sure all future patients with dementia are not written off.

 

[RosettaT]

I'm pleased you have chased this up. I had something similar when my OH was in hospital. He was admitted with an infection that just kept getting worse. Usually he could feed himself but because he was confused and out of it most of the time had no idea he needed to. A number of times I went in at 11.30am to find his breakfast and a cold mug of tea on his table. I persistently told them they couldn't leave him to feed himself but they took little or no notice. They even raised an intake chart because he wasn't eating/drinking but failed to fill it in. I spoke to the ward manager and things did improve but to me it was obvious that most of the staff had no understanding of dementia and to be honest I'm not even sure they realised he suffered it. Eventually I went in twice a day (thanks to staying with my sister who lived13 minutes walk away, I was a 40 minute drive) to feed him myself.

 

[Duggies-girl]

@rosy apple cheeks I am so pleased that your dad is looking better and receiving better treatment and that is thanks to you. I know I should have complained about dads treatment but I was just glad to get him out alive and I was so worn down that I never did complain, I think this is common.

 

[Wildflowerlady]

Am so very pleased your dad is improving @rosy apple cheeks and for all you lovely people that were there for your PWD and supported them. I'm wondering if I questioned the doctor enough about my dad now and perhaps I should have tried harder. Because of Covid we weren't allowed to visit him in hospital until they deemed him EOL and he had already been there two weeks and on a IV drip. Getting through to the hospital during that time was really difficult but I did speak to someone on his ward every day. Now I'm feeling should I have insisted they let me see dad sooner been more active about them spoon feeding him ? My sister and I didn't feel the option of putting a nasal tube into dad to feed him was right and neither did they.

 

[RosettaT]

@Wildflowerlady, you can only do what you felt was right at the time, The day before my OH was admitted to hospital he was walking 3 miles a day. When he came out he was immobile, and his feet had flopped through being left in bed all the time (12 weeks) with no foot support, the OT tells me it is easy to prevent. I insisted on 6 weeks rehab for him, they too left him in bed for the first 3 weeks. Now I realise I should have just got him out of hospital asap and employed a private physio, the community physios weren't interested in him, they basically had written him off.
I kick myself sometimes but at the time I thought rehab was best.

 

[canary]

That sounds like an amazing recovery @rosy apple cheeks
Im so glad.
Im assuming he is being fed, or is he feeding himself?

 

[rosy apple cheeks]

Thank you everyone for your stories this is such a hard time and difficult choices to be made. I can’t imagine this situation during COVID lockdown. Without this forum I might have just accepted Dads situation.

I am for realistic but positive mindset. Dad is very ill and old but the last time I sat with him eating fish and chips and having a laugh I thought we could have years of this left.

My impression of the ward, other patients and the staff is that they are all very warm and happy looking. I saw dietitians, physio’s, volunteers visit every other patient except my Dad. I think they had written him off or just thought he was at the end of life?? I have no idea but I will continue to dig until I find out.

Dad is going to a respite hospital soon and as part of the complaint I’m going to request a gold standard referral to a rehabilitation program for elders. They need to fix this to the very best of their ability. If they don’t we’ll pay for it and then I’ll make them reimburse me. I’m still really angry and it will keep me occupied.

@Grannie G I’m not sure if Dad is feeding himself. I have seen him, in the last day, reach for water and drink it. He is very wobbly and it takes a long time but he managed it. I’m an oasis of tranquility on the outside, calm and polite ?

I would assume he is not because he has been put on to the red tray system which mean you have difficulty feeding and need a nurse. He’s only been on it a day.

I aim to go in just before lunch so I can feed him. And I call at breakfast and someone goes to visually check what he’s eating.

Thanks everyone I was really lost and confused and it’s all a bit clearer. I wish had found this charity sooner.

 

[Wildflowerlady]

@Wildflowerlady, you can only do what you felt was right at the time, The day before my OH was admitted to hospital he was walking 3 miles a day. When he came out he was immobile, and his feet had flopped through being left in bed all the time (12 weeks) with no foot support, the OT tells me it is easy to prevent. I insisted on 6 weeks rehab for him, they too left him in bed for the first 3 weeks. Now I realise I should have just got him out of hospital asap and employed a private physio, the community physios weren't interested in him, they basically had written him off.
I kick myself sometimes but at the time I thought rehab was best.

Thank you @RosettaT I have read many times how quickly someone with dementia can lose the ability to walk. I attended some classes not long after dad was diagnosed and I recall a gentlemen saying his wife had walked into hospital but10 days later when she had returned home she had lost the ability to walk and he was now having to use a hoist with help from carers. We all have our hindsight moments but we are always doing our very best at the time and given the circumstances we are faced with. I wish you and your husband well your post meant a lot to me.

 

[rosy apple cheeks]

Hello, just a quick update. The hospital have allowed Dads toe to turn black and die. He now faces an above the knee amputation.

He hospital are doing an internal investigation. They clearly think he had not received the correct care. I’m going to focus on helping Dad get the best out come from this situation. I hope he is well enough for the surgery.

I’m going to make a new post to see if anyone had been through the complaint and investigation process. Does anyone know how to find a he right part of the forum to find support or any advice at all about how to handle this?

I just feel crushed and overwhelmed.