Worried about my Dad leaving ICU: Hi everyone. My... - ICUsteps

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Worried about my Dad leaving ICU

NICOLETTE2020 profile image

Hi everyone. My Dad has been in ITU for 6 weeks after suffering a ruptured aneurysm and then bowel ischaemia during the repair surgery. He developed pneumonia and renal failure also but both seem to have improved now. He got his trach tube out today and is managing fine and will be getting moved in next day or so to HDU briefly and then general ward. However, I am very worried about the standard of care he will receive in general ward. He can barely move by himself in bed and is very weak and hasn't been in any way mobile. I have been reading of other's negative experiences and my worry is made so much worse by the covid-19 pandemic and hospital visits being banned now. I cannot bear the thought of him spending hours not getting the help he needs such as help to the loo, help with eating and bathing etc.

I am just hoping that some of you folks can offer any words of wisdom and I am very sorry for everyone's health troubles and not being able to visit loved ones in hospital amid pandemic.

21 Replies

Hi Nicolette

What wisdom can I share with you - how did I get out of hospital quicker - the best way to help your father is not pick up further infection whilst in hospital. Firstly, encourage your father to ‘gel’ his hands every time he has his ‘OBS’ done. The staff might clean the outside of the machine but they tend to miss the inside of the clip that goes over your finger, the OBS machine goes from patient to patient within a bay. If he goes anywhere within hospital, put on surgical gloves and encourage him never to touch his face before he has washed his hands. Virus & bacteria live on surfaces that are touched by others, so try not to touch things that others touch.

I also made sure that I did as much physio as I could manage each day, the more I did equated directly with how quickly I would get out of hospital.

I know that your father will experience an exhaustion that is indescribable but he has to push himself through that.

Does a patient get the care that he/she should is dependent on the staff, ward & hospital, I’m sure. To say he won’t get the care he deserves is unreasonable in these unprecedented times. NHS staff, often paid very little, are putting your father’s welfare ahead of their own( and their own families) every time they turn up to work.

I know others have had an unsatisfactory experience with a particular NHS trust - in truth, my 94yr old demented Grandmother was treated appallingly 12yrs ago in the lead up to her death.

I owe my life to the diligence & dedication of several hospitals & NHS trusts.

I am sorry to hear your Dad has had a tough time but pleased to hear he is improving.

I think the current situation might mean he is actually better off in a general ward rather than staying in ICU if he no longer needs ventilating. I am sure it's a very worrying time for you. I wish you and your Dad all the very best. (Remember that the people who are really happy with every aspect of care received are unlikely to seek support from this site.)

Thank you all for taking the time to reply. Well he only moved to HDU yesterday and today he is going to general ward which I am very worried about. I have talked to nurses and they say an ICU liaison nurse will see him regularly but I am sceptical on what is classed as regular. He only had breathing tube out 2 days ago and I did assume he would be in HDU atleast another day or two.

Sepsur I am worried about him picking up infection and this is made so much worse by me not getting up to see him because I would be taking some detergent wipes and hand gel in. My Dad seems to have slumped in to a depression and has been quite unpleasant to the nurses and the physios get it too but he does need to accept the help and be willing to put the effort in, otherwise he will be in for longer.

Mark I am so sorry for your loss. Did your Dad stay in ITU after you complained? I will certainly contact the complaint team if I am not satisfied he is given the level of support he needs.I feel like I have taken the high standard in ICU a little bit for granted now he is no longer there.

Stayloose I am worried that the nurses in general ward wont be as stringent with hand washing and cross contamination as ITU. I am hoping that since all non essential surgeries have been cancelled the ward will be a little less busy but that is probably clutching at straws.

I was told my Dad can wear pyjamas instead of the hospital issue gown once in general ward but I can see this will be a problem because I need to bring it all to hospital to hand in. Even something as basic as wearing his own clothes will make him feel a little more human.

I’m actually going through a similar situation right now. My brother in law had complications after a cancer removal surgery and was in coma for couple of weeks. He has pneumonia and got a bacteria on the hemodialysis access recently. He stayed in the icu for 5 weeks and just got moved to a general ward last week. He is getting better everyday but he can’t move very much. He needs help for everything. He had a lot of muscle waste and is not able to lift a cellphone himself. I just thought that the doctors think he’s well enough to be out. They said they want him out of the hospital asap probably in 30 days or so-if he shows enough improvements. They said being at the hospital he is susceptible to get infection. I bet it’s the same for your dad. They wouldn’t move him out if he didn’t think he is well enough. Praying for God to give you peace and to guide doctors for good decisions.

My father was in icu for 5 weeks back in March of last year, an infection of his intestine and bowel which turned into sepsis, he's 73. When he had his trac removed he was in ICU for a further week due to ICU team wanting to make sure his vital signs improved more before they moved him to HDU. He was in HDU for 1 week, then moved him to a general ward but 1 day being in general ward his surgery wound created complications so he was moved back into HDU for another week where he began to stablizse. Then they moved him into a general ward where he was seen by a physio twice a week to help him regain the strength in his muscles, mainly his legs. It's been a year since he's been out of hospital and he still has not gained the full strength of his legs.

During his stay in general ward his wife (my step mother) would notice things that had not been done properly, not been given enough liquids to drink, not cleaning his surgery wounds as much as they should have, not emptying his bodily waste function bags as much as they should have, little things BUT could have had a big impact on his mental wellbeing.

On top of all the problems my father has had, he has just been diagnosed with bowel cancer (last) week. He has a tumour not far from where the original surgery was done and now he needs to go in to chemotheraphy which given the current situation hospitals are in, not only frightens him but the rest of the family too, so i can understand the pain and hurt you are going through right now.

If you are concerned about anything, always try and speak with the doctor who was in charge of your father whilst he was in ICU. My fathers wife would ring up the ICU unit and speak to the nurses if she just wanted a general update on how her husband was doing but if there was anything that concered her, she would always contact the doctor who was in charge of my father. I am sure your father would have been assigned a doctor/surgeon. If so, speak to that person about any fears or concerns you have.

Hi,

I actually discharged myself from the general ward as I couldn’t sleep properly there and I knew I would recover quicker at home. I’m only 37 though and I have my husband who is fit and healthy who helped me out. I wouldn’t advise self discharge for everyone but as soon as I got home and became able to rest properly and eat what I wanted, my recovery progressed a lot quicker.

I would say that your Dad needs to try and eat as much as possible and engage with all the physio sessions. I honestly believe me being able to sleep properly again helped a lot too. There should be an ICU outreach nurse that visits your dad everyday on the ward. It’s hard at the moment as o know everyone will be stretched. Your Dad has come through the worst and the only way is up now.

V xx

Well my Dad was in HDU less than 24 hours and now in general ward. I am already unimpressed. I must have called ward 4 or 5 times asking them to make sure his mob phone is charged and connected to wifi for facetiming. Hours went by and when i called last time they hadn't even bothered to get any of his belongings out bag so his phone was flat. I have yet to talk to a nurse who is looking after him because when i call it seems whatever nurse answers goes and asks the assigned nurse how he is and then relays message back to me. Anyway i called later and spoke to my dad and he sounded terrible, so out of breath and now i am worried sick about his lungs because he had pneumonia and i am sure he wont be on any monitor overnight and what if his oxygen saturation goes down again and no-one picks this up? This is worse than when he was in ICU because atleast he was being well looked after and the staff so lovely and not dismissive like today.

The staff in all the hospitals need to understand how difficult it is for everyone with a relative in the wards because of visitors being banned. A vague update 2 or 3 times a day isn't enough so I am insisting on talking to a doctor tomorrow.

I am so sorry for everyone going through this sort of stress either as relative or patient.

I also found out that PALS do not seem to operate in Scotland so shall look in to who I can contact if I have any complaints.

Thank you for taking the time to reply. It's nice to know that others understand all the issues we face.

Sepsur profile image
Sepsur in reply to NICOLETTE2020

My heart goes out to all those who cannot be with their loved ones in hospital and ICU. The only thing that kept my wife going when I was in a coma in 2016 was being able to see me every day and talk face to face with staff.

I was first admitted 4yrs ago yesterday. So I spent the day organising 35 face visors for my local ICU which hardly had any. Those nurses were stars. Later, when I moved towards discharge, not everyone was so fantastic but that’s just how it is. When I woke from 2 month coma, I couldnt believe how many great nurses, anaesthetists, consultants, junior doctors, cleaners, domestics, nursing care assistants, physios & dieticians played a part in me surviving.

I brought my Dad's clothing up yesterday and yet when I called tonight the bag was still sitting beside him unopened which also included a letter I had written for him and I had told his nurse. They gave him his first shower today and yet didn't even wash his hair. He hasn't had it washed in almost 7 weeks and the dry shampoo I bought him can only do so much. I am sure I will be getting a reputation for being a bit demanding but I cannot visit him. If I were I would be able to chat to the staff if something wasn't right. My dad is so breathless with even speaking so he isn't able to properly vocalise if he is unhappy about something. He is a proud man so unwashed hair and long nails are going to make him feel even more rubbish.

I am sure it's very distressing for you. Really your Dad needs to ask the HCA to wash his hair, whilst he's actually in the shower. Asking staff to do it when you phone will probably be forgotten in the list of tasks they have to do.

His breathlessness may be partly because he hasn't yet fully adjusted to having room air only and because he's exhausted. It will improve. Try and look after yourself.

Thank you x

Well yet again his hair isn't washed, he is in nhs gown and he is very very down. My dad is such a proud man who has never had to rely on anyone and he will be embarassed to ask them to wash his hair and cut his nails, especially if he is being showered or bed bathed. I think he only tells me so I have to speak to staff on phone. It breaks my heart that he is so down and non communicative on ward. He would cheer up atleast a little if I were visiting . In his mind he will be thinking there is nothing to look forward to.

It's so tough for you and your Dad that you can't visit. I feel for everyone in this situation. If you were there you could wash his hair and cut his nails and provide company and diversion for him. Sometimes even if you are there it is difficult to be able to speak to anyone or make things happen. On the positive side your Dad will I hope gradually feel less exhausted as time goes on and when he is able to move around etc. It sometimes only takes one really friendly encouraging physio/nurse/HCA/domestic to cheer up the whole day.

I know that parents can sometimes save the worst for you, offload and then feel better, but you feel awful. I'm sure it's very difficult for you to distract yourself but do what you can to self care.

Yet again I heard the same excuses as the day before. They have all said they will pass message on but it never happens. I understand they are very busy but this is his basic care not being done so I phoned the concerns and complaints team at hospital and the senior charge nurse is calling at 10am. Staff have said that my Dad should speak up but he is embarrassed and feels very self conscious as well as depressed. When I called ward yesterday the nurse was giving me a full update on a totally different patient and claimed that not many staff know how to use stand aid in shower. ...

I was surprised by my treatment once I left ICU. Staff seemed very unaware of what state I was in. I was suffering from chronic muscle waste which meant that I was dependent on all the staff to help me - at first I was unable to get to toilet - & even when I got there - I struggled to sit on it or get off it - not dignified at all. I was looked after by mainly nursing care assistants ( nurses tended to administer medication or procedure). Two years after discharge, we got included in the induction programme of local hospital - so that the staff became informed of what a critical care patient experienced dropping down from ICU. Delirium, weakness, neuropathy & cognitive dysfunction - the 4 horsemen of ICU

You might find this article insightful

ficmlearning.org/stepping-d...

Hi Nicolette2020

Firstly and most importantly, it is really good that your dad has come this far and is no longer in ICU, that is a positive you can take away but I get what you are saying so much! I can’t say 100% because when my dad was in hospital I was able to visit so I am really sorry that you are having to rely on vague calls etc!

When my dad had his tracheostomy removed everything seemed to happen so quickly and he was moved to the general ward after 48 hours but on that ward he was able to build his strength up so much more and was able to walk unaided after a few days! (My dad was also in ICU for 6 weeks!)

I think it was more of his determination to get out of there more than anything! I detested the ward! I don’t believe he received adequate care! They had zero idea of what my dad had been through and when an ICU nurse agreed with me she even stated that the staff in general wards thing all ICU nurses do is stand by the board all day🙄 and that she absolutely hates sending her patients down to the wards!

I cannot thank the ICU staff enough for giving me my dad back, I just really wish staff in other wards see what ICU is like. I think if they had that understanding then maybe patients will get the care they need.

I am really sorry you are having to go through all this with your dad, especially with the current crisis, my heart really does go out to you! You really need to be strong, stand your ground and keep your dad being as positive as he can be.

Please feel free to get in touch if you need to rant or anything!!

Xx

Well the senior nurse did call and took everything onboard and didn't make excuses as to why things hadn't been done. I must have spoke with her a good 30 minutes and when I called ward later on my Dad had been showered, hair washed and they were going to file his nails down because they do not cut or trim them. The nurse had also taken him out in wheelchair because I mentioned he is very much an outdoors man who likes hill walking so all in all a good day for him! The senior nurse also said that the ward was very adequately staffed so there was no reason why these things had not been getting done. I phoned my dad in evening and he sounded much brighter so I do hope they do take him outside atleast a few times a week because that really helped his mood. This charge nurse also said she will call me every morning Mon-Friday so I am very pleased about that.

Sepsur I shall have a good read of that link so thank you.

Lowek it is astounding that general ward nurses have such a ridiculous idea of what an ITU nurse does. They work every minute they can and I too couldn't fault the level of care my Dad got. I am hoping my Dad will find the same determination to get mobile and home as much as your Dad did. It is quite shocking how quickly muscles waste away. Right now even standing is too much for him. Did your dad have any issues with swallowing after the trach tube came out? My Dad's swallow has been assessed and there doesn't seem to be a problem but he said on phone that he is finding the thought of some foods unappealling because he has to chew until they are really mushy before swallowing. I wonder if he has developed a bit of fear over swallowing any foods because he got his NG feed again because he isn't eating anything.

lowek profile image
lowek in reply to NICOLETTE2020

Hi Nicolette2020

We had to keep explaining to my dad that it is not a race and he has to walk before he can run! He lost so much muscle and is still tying to build it up but for some reason he kept the strength in his legs so it wasn’t too long before he was walking unaided. He go for about a 2 mile a walk every two days and he’s legs will ache (he was doing it daily🙄 so I had to once again tell him about walking before can run) I also got him 1kg dumbbells as it is more upper body strength he needs to build up than anything.

Dad has to be fitted with a PEG in order to be discharged from hospital as he was unable to safely swallow (I have my opinions about all this mind you!). We recently got the all clear that he can now eat and drink as normal. Was about 8 weeks from the first assessment to the second one and he had exercises that he done 3 time’s a day (you can google these). Has you’re dad been seen by a member of the SALT team? If you could tell them your concerns they will be able to help!

Yes he has been seen several times by SALT team and they do not think he has any issues with swallowing. Today he is eating small amounts so it's a start. When I called for an update I asked if his nails had been filed down yet and was told that they did not do this on ward. Well the senior nurse said exact opposite to me so I promptly told her this and what an attitude she had. She sounded like she couldn't be bothered to do anything. I also asked if anyone could take my Dad outside again in wheelchair because it did him the power of good on Friday but was told this isn't possible at weekends and they need the physios for that. I didn't believe a word of it because the senior nurse assured me they were very adequately staffed and so this should not in any way be an excuse for not seeing to his basic needs. Anyway she went and got the charge nurse when i name dropped this senior nurse and when i called my Dad later he had his nails filed down. When the senior nurse calls me Monday morning i will be sure to tell her about it all. I feel that some nurses on general ward do not consider the impact on patients when no visitors are allowed because if I were going up I would be taking my Dad out in his chair. I hope he doesn't get this same nurse two days in a row...

The main event today was that he was put on antidepressants for his low mood. No doctor or nurse has mentioned this to me and infact I am still waiting on talking to a doctor since he moved to general a week ago despite asking to. My Dad didn't even want to talk to me tonight and i am worried that he thinks I consented to this when ofcourse I did not. This is not acceptable given that relatives are not allowed to visit hospital and quite a few nurses do not seem to consider this either. Sometimes when I call for update the nurse is vague at best. My Dad needs to be outside, even if for 15 mins a day. He was so happy on Friday and it did him the world of good. I shouldn't have to resort to almost begging them to do this.

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