Am I being overprotect and unreasonable?

[Sandy47]

My husband, who has Alzheimer's which has affected his speech and communication, had an UTI and was constipated but because the GP refused to come to the house to see him he told me to ring the emergency services. It was not an emergency but eventually he was admitted to hospital. He went in fully mobile, active, sleeping upstairs, able to feed himself and attending a day centre twice a week.

He has been there for 2 months and during that time has become completely dependent, has lost a lot of weight and when he comes home will need a hospital bed downstairs and carers 4 times a day to help me do everything for him. He will be bedridden because he has so much muscle wastage and has been left lying in bed for most of the time.
I have brought up various issues with PAL's but although these have been resolved theoretically, nothing has changed in practice.
Yesterday was the last straw. I was told in no uncertain terms by one of the nurses in front of everyone else in the ward that I was taking liberties (I had over run the hours visiting time), taking the mickey, was selfish, endangering other patients and staff, that I thought I was special and if I didn't leave, the matron and security staff would escort me off the premises and she would get me banned from the hospital.

I have been visiting MH everyday (a 3-4 hour round trip) for one hour. Often he is asleep for the entire hour. I have tried to time the visit so that I can feed him as he can no longer do that himself and the nurses don't have the time to do it and this sometimes takes me over the hour but no one has objected before.

A few weeks ago he had recovered and was waiting for a care package. He was clearly not drinking enough fluids, which I brought up over and over again with the nursing staff and eventually he got another UTI and was back on anti biotics.

I am posting this, apart from getting it off my chest, because I am beginning to wonder if I have been unreasonable in my expectations having never experienced NHS hospitals except as a day patient.

These are some of the issues I have expressed concerns about:
The need for my husband to have help with food and fluids rather than it be left on his tray.
He has on at least 2 occasions (I was present at the time) been given another patients meal instead of the one ordered for him.
The need for him to be got out of bed and work done on his mobilisation.
The need for him to have some stimulation. There is a radio/TV but it is hardly ever on because it's a small ward and would disturb the other patients.
I mentioned he was wearing another patients T shirt on one occasion despite his own being on his chair next to him and the reply was " well at least it's clean".
His finger nails became encrusted with dried food where he was trying to pick soft food like mince up with his fingers and were only cleaned when I asked for some water and a nail brush.
Invariably when I go in his feet are like blocks of ice sticking out the bottom of the bed. Sometimes the hospital socks are nearby, sometimes they are nowhere to be seen.
Surely I can expect my husband to be treated with dignity and respect?

I am so tired of fighting his corner with the NHS and getting nowhere.
Am I now over reacting, should just accept it as it is and hope my husband will be home soon?

 

[Shedrech]

oh my @Sandy47
such a sad situation, no wonder you are feeling as you do ... I certainly don't think you are unreasonable ... and am appalled at how you have been spoken to

I believe each hospital has a dementia matron (or similar designation) so ask to speak with them ... it doesn't seem that the staff are taking account of your husband's dementia and his inability to communicate and sort out simple things for himself eg cold feet ... I thought the auxiliary carers (not sure of the up to date name) were there to ensure a patient was fed and comfortable ... and if your husband is resistant at all, there should be staff able to cajole him, rather than neglect him

other members have posted here that hospital is just not a positive environment for patients with dementia, for your husband this appears true

have a chat with one of the advisors on the Support line as they may well have suggestions for you and be able to direct you on to more help

Dementia Support Line

If you need dementia support, we’re here for you. Get personalised information, support and advice by calling us on 0333 150 3456.

www.alzheimers.org.uk

 

[Duggies-girl]

@Sandy47 I am so sorry that you have been treated in this way and no you are not being overprotective. You are your husbands advocate and have every right to expect and make sure that your husband receives good care while in hospital. For goodness sake if you don't keep a watch on him who will. I won't go into all the details of dads three week hospital stay other than it was horrendous for him and for me. For a member of staff to speak to you in that way is unprofessional and certainly not necessary. To speak to you in front of other visitors and staff is bullying and should not happen. She needs reporting. I worked in a hospital and you simply do not speak to anyone like that.

I visited dad twice a day every day just to check that he was still alive and I was sick with worry. I was lucky that the hospital was only 10/15 minutes in the car. Dad was admitted with pneumonia and before then he was ambling along nicely with help from me. The dad who came home was a shell of his previous self, needed 24/7 care and was in a wheelchair. I got him mobile and this is something that needs to be worked on everyday, the odd visit by physio will never make any difference. Our hospital did not allow visiting at meal times and I would always find dad with his plate sat in front of him, food untouched so I would take him something in to make sure that he got something.

I don't now what to advise you but you should definitely complain to PALS Patient Advice and Liaison Service and I hope that you get some improvements but I think sadly that this is a common occurrence with elderly dementia patients and it's truly awful.

We decided that dad would never go into hospital again and his GP agreed.

 

[lollyc]

Sadly, I don't think plonking a meal in front of a patient, and leaving them to get on with it, is an uncommon occurrence in hosptial wards. I know of someone visiting her dad, who ended up feeding the man in the bed opposite, because he simply couldn't manage it. And he didn't have dementia, he just didn't have a family. She was horrified, but her complaints fell on deaf ears - probably because she wasn't a relative.

 

[Sandy47]

@Sandy47 I am so sorry that you have been treated in this way and no you are not being overprotective. You are your husbands advocate and have every right to expect and make sure that your husband receives good care while in hospital. For goodness sake if you don't keep a watch on him who will. I won't go into all the details of dads three week hospital stay other than it was horrendous for him and for me. For a member of staff to speak to you in that way is unprofessional and certainly not necessary. To speak to you in front of other visitors and staff is bullying and should not happen. She needs reporting. I worked in a hospital and you simply do not speak to anyone like that.

I visited dad twice a day every day just to check that he was still alive and I was sick with worry. I was lucky that the hospital was only 10/15 minutes in the car. Dad was admitted with pneumonia and before then he was ambling along nicely with help from me. The dad who came home was a shell of his previous self, needed 24/7 care and was in a wheelchair. I got him mobile and this is something that needs to be worked on everyday, the odd visit by physio will never make any difference. Our hospital did not allow visiting at meal times and I would always find dad with his plate sat in front of him, food untouched so I would take him something in to make sure that he got something.

I don't now what to advise you but you should definitely complain to PALS Patient Advice and Liaison Service and I hope that you get some improvements but I think sadly that this is a common occurrence with elderly dementia patients and it's truly awful.

We decided that dad would never go into hospital again and his GP agreed.

Thank you for your reply. It is reassuring to know that your GP supported you with your dad. I've already decided that my husband will never set foot inside an NHS hospital again if I can help it. I will need to tell his GP that he will be unable to attend surgery now that he is housebound so will mention that to him as well. I cannot believe that the hospital staff are so indifferent to people with dementia and the thought of your poor dad having food put in front of him he couldn't eat is heartbreaking. It has happened a few times with my husband which is why I make a point of going in at mealtimes to help. I always take extra supplies and leave any he might like later but they are always left on his table for days.

 

[Jale]

Unfortunately similar thing happened to mum - she was in hospital for nearly 2 months and in that time was unable to feed herself and lost mobility. This is all before covid so things may be different now, but we (hubby and myself) went in every lunch time to help feed her and make sure she had something to drink. Her son (my brother) would go in at teatime but never bothered to try and help her. We also used to help a lady in the next bed, although she could feed herself she would sometimes get muddled with cutlery or unable to open sauce packets, as very often the food would be put on the table and the staff would leave. On the same ward (I think it was a dementia ward) another lady would be got out of bed and sat in a chair and she cried constantly to go back to bed, when I asked a nurse why they wouldn't put her back in bed I was told quite off handedly that she does it all the time.
Mum did get a couple of visits from the physio (I think) but they could not get her to understand what was needed for her to stand up and they didn't see her again as far as I know
Hospitals aren't always the best place for pwd to be - this is not entirely the staffs fault, as very often they don;t have the time to spend with each patient, but I think to be spoken to like you have written would have been a step too far for me especially if trying to help your husband, and in turn surely this would help the staff as well.
I would definitely be speaking to someone about the problems you/your husband have had and I know it is easy to say but try and stay calm.
Good luck

 

[Jessy82]

Completely agree and so sad you are going through this. My mum was left with dried poo all over, fingernails, toenails, ended up showering her myself. I kicked up a fuss for them to clean the room as there was streaks of poo everywhere. She'd gone in with a blocked bowel, she was left in xa private room with a commode, which she couldn't sit on without assistance. I visited one day and a dirty poo covered nighty was hung up on her drip, where the couldn't take it off. It was a disgrace. They are there to make people well, nort starve them to death. This was our local hospital, when mum got sepsis a few years ago I wouldn't let her go back there, she was in the next town which was much better

 

[sirpandip]

Unfortunately similar thing happened to mum - she was in hospital for nearly 2 months and in that time was unable to feed herself and lost mobility. This is all before covid so things may be different now, but we (hubby and myself) went in every lunch time to help feed her and make sure she had something to drink. Her son (my brother) would go in at teatime but never bothered to try and help her. We also used to help a lady in the next bed, although she could feed herself she would sometimes get muddled with cutlery or unable to open sauce packets, as very often the food would be put on the table and the staff would leave. On the same ward (I think it was a dementia ward) another lady would be got out of bed and sat in a chair and she cried constantly to go back to bed, when I asked a nurse why they wouldn't put her back in bmed I was told quite off handedly that she does it all the time.
Mum did get a couple of visits from the physio (I think) but they could not get her to understand what was needed for her to stand up and they didn't see her again as far as I know
Hospitals aren't always the best place for pwd to be - this is not entirely the staffs fault, as very often they don;t have the time to spend with each patient, but I think to be spoken to like you have written would have been a step too far for me especially if trying to help your husband, and in turn surely this would help the staff as well.
I would definitely be speaking to someone about the problems you/your husband have had and I know it is easy to say but try and stay calm.
Good luck

did you mum manage to walk again ?

 

[Sandy47]

did you mum manage to walk again ?

Thank you for your reply. Did your mum improve enough to get some mobility back once she was home? Did she get any physiotherapy provided to help her become mobile?

Everytime I mentioned getting MH out of bed I was told he couldn't respond to the instructions and it wasn't safe as he was in danger of falling. Then they didn't do anything until I mentioned it again.
One day I went to visit him and found him on his chair, slumped forward with his head between his knees and only semi conscious. If he had tilted any further he would have fallen out of the chair onto his head. Eventually they hoisted him back to bed and then found he had contracted another UTI.
They sometimes tried to get him out of bed while he was still half asleep and said that he resisted by going stiff and became immovable. I do wonder if they have the first idea of what that is like for someone with dementia.

 

[Sandy47]

Completely agree and so sad you are going through this. My mum was left with dried poo all over, fingernails, toenails, ended up showering her myself. I kicked up a fuss for them to clean the room as there was streaks of poo everywhere. She'd gone in with a blocked bowel, she was left in xa private room with a commode, which she couldn't sit on without assistance. I visited one day and a dirty poo covered nighty was hung up on her drip, where the couldn't take it off. It was a disgrace. They are there to make people well, nort starve them to death. This was our local hospital, when mum got sepsis a few years ago I wouldn't let her go back there, she was in the next town which was much better

Thank you Jessy 82 for your reply. How awful for your poor mum and for you to have to witness that sort of treatment. It is absolutely inhumane.
I would have thought that cleanliness was a top priority for anyone in a hospital environment.
Interesting that the second hospital was better than your local one.
I have found that most problems could be addressed with a little more flexibility but the NHS are so rigid in their practices. A lot if it is to do with form filling and tick boxes. Most of the younger nurses have been lovely but can only do what they are told. The whole system seems shambolic.

 

[Violet Jane]

I’m afraid that I don’t share the ‘nurses are angels’ view at all. A lot don’t seem to be particularly caring and I sometimes wonder what they are doing crowded around the nurses station. Basic care seems to have been forgotten and the NHS doesn’t seem to have woken up to the fact that a lot of patients (frail, with dementia) need help with everyday tasks such as eating and drinking, washing, toileting and walking. When they don’t get this they leave hospital frailer than when they arrived and a good many are readmitted within a few days because infections haven’t properly cleared or the person has had a fall.

I was terrified that my mother and my elderly friend would leave hospital having lost their mobility after lengthy stays. Fortunately, that did not happen as both were essentially quite physically strong and had very good appetites but many others receive almost no physiotherapy and leave hospital barely able to stand let alone walk.

The NHS needs to review its care of frail and cognitively impaired patients which represent an increasing proportion of in-patients.

 

[Feeling unsupported]

I agree, much of the NHS work, still appears to be conducted with tunnel vision. Mum has recently had a broken hip, she was taken to hospital alone, a very alien and scary environment, underwent a serious op. Several days later I received a call from the hospital's dementia team, who had been called in, as my mum appeared to be confused. Why were they surprised by this? It's as though she was placed on an orthopaedic ward and that was the only condition they could assist with. The lack of understanding and compassion for dementia sufferers is completely shocking and disgusting. We, their loved ones are expected to cope with whatever dementia throws at us and yet the so called health experts appear to have little to no understanding of the additional problems dementia causes.

 

[notsogooddtr]

I’m afraid that I don’t share the ‘nurses are angels’ view at all. A lot don’t seem to be particularly caring and I sometimes wonder what they are doing crowded around the nurses station. Basic care seems to have been forgotten and the NHS doesn’t seem to have woken up to the fact that a lot of patients (frail, with dementia) need help with everyday tasks such as eating and drinking, washing, toileting and walking. When they don’t get this they leave hospital frailer than when they arrived and a good many are readmitted within a few days because infections haven’t properly cleared or the person has had a fall.

I was terrified that my mother and my elderly friend would leave hospital having lost their mobility after lengthy stays. Fortunately, that did not happen as both were essentially quite physically strong and had very good appetites but many others receive almost no physiotherapy and leave hospital barely able to stand let alone walk.

The NHS needs to review its care of frail and cognitively impaired patients which represent an increasing proportion of in-patients.

I don't think many nurses claim to be angels tbh. That term is used as emotional blackmail to make them feel bad about comaining about pay and conditions. The NHS is chronically underfunded and therfore understaffed. It is a nightmare for the elderly in hospital but there just aren't the resources to look after people properly.

 

[Duggies-girl]

@Sandy47 All my dad needed was assistance to get to the toilet. Not one member of staff was able or prepared to do this, they insisted that he should go in his incontinence pants. My dad had dementia and he was not incontinent, he just needed five minutes help, no way was he going to do it in his pants and he shouldn't be made to. This resulted in three falls and being returned to A&E each time before being shipped off to another ward. Dad had to go for a head scan three times, I imagine that this is all rather costly for the NHS and all because nobody could help him to the toilet. It took two people to get him there but it was not that difficult. I and my husband managed but no staff could.

Eventually I offered to stay overnight in a chair, I would have been very unobtrusive and far cheaper than three head scans but no, they insisted that they could manage. This was long before covid so would not have been a problem and dad would not keep falling over. I could go on and on but you get the picture.

 

[Jale]

did you mum manage to walk again ?

Sadly no, she went from the hospital to the nursing home. The social worker at the hospital told us we wouldn't be able to cope with her other needs.

 

[RosettaT]

I'm afraid my experience of OH 12 week hospital stay is very similar to @Sandy47.
Some staff were very good, others must have walked around with their eyes closed. There were to many incidents that built up over time, far too many to mention here but it all blew up when they raised paperwork because they were concerned about the amount OH was eating and drinking then failed to fill in the chart and ended up giving him 7 ltr of fluids over the w/e by IV.
@Sandy47 If you feel the care is not up to scratch, then you must bring it to their attention. PWD often can't speak for themselves and need someone to do it for them.

 

[Sandy47]

I'm afraid my experience of OH 12 week hospital stay is very similar to @Sandy47.
Some staff were very good, others must have walked around with their eyes closed. There were to many incidents that built up over time, far too many to mention here but it all blew up when they raised paperwork because they were concerned about the amount OH was eating and drinking then failed to fill in the chart and ended up giving him 7 ltr of fluids over the w/e by IV.
@Sandy47 If you feel the care is not up to scratch, then you must bring it to their attention. PWD often can't speak for themselves and need someone to do it for them.

Thank you for the reply Rosetta T. I have contacted PALs at the hospital twice by email and twice in person. The first time, PALs contacted the ward and I was allowed to speak to the doctor and nursing staff. Some of my concerns were addressed including MH being given finger food which at that time he could still pick up and eat. This never happened in practice.
The second time I contacted them about the lack of fluid intake, which eventually led to him getting another UTI, I was told that he was being offered fluid but refused it and they couldn't force him to drink.
This week the dietician came to see him and asked me what changes I would like the ward to make. I suggested that feeding instructions on the board behind his bed which has been there since he was admitted should be change to inform all staff that he is not "self-feeding" as it says now but he needs to be fed and/or assisted to feed and drink for himself. She agreed and would get the ward to change it. That was five days ago and as yet nothing has happened.
If PALs is unable to help, and even the hospital specialists are ineffective, I feel I am on my own and powerless.

 

[Sandy47]

I don't think many nurses claim to be angels tbh. That term is used as emotional blackmail to make them feel bad about comaining about pay and conditions. The NHS is chronically underfunded and therfore understaffed. It is a nightmare for the elderly in hospital but there just aren't the resources to look after people properly.

I don't think the NHS is underfunded but the system itself wastes so much of the funding it gets.
The tons of food thrown away each day is unbelievable.
The amount of time wasted by constantly changing the staff who are unfamiliar with the patients' needs.
The amount of time OT's, dieticians, physiotherapists and other health specialists waste assessing patients needs and then getting nothing done about them.
The organisation, right down to practices in individual wards, is so chaotic and badly managed that it isn't surprising there is a shortage of staff.

 

[Violet Jane]

Absolutely disgraceful, Sandy. The problem with poor care is that it goes on over a period of time and so everyone involved can ‘pass the buck’. Your experiences do point to something of wider concern: the patient history is not correct if the board says that your father is self-feeding when he can’t feed himself. Who recorded this and how did s/he reach this conclusion? Having enough to eat and drink is a basic part of recovery from illness / an accident / an operation and yet we’ve heard for years about frail elderly patients becoming malnourished because food is left for them on a tray and they can’t eat it.

In this Covid era I find it interesting that an 80 year Covid patient (well, a patient of any age) can have all the resources of the NHS thrown at him / her to cure and rehabilitate him / her but very basic things such as making sure that a PWD eats and drinks, is taken to the toilet and kept clean cannot be done for a PWD. Why is that?

I certainly think that there is a training issue. I watched one health care assistant try to move my elderly friend from the bed to a wheelchair. She didn’t seem to know how to go about it at all. Isn’t patient transfer part of basic knowledge?

Perhaps the NHS should just be honest and say that it doesn’t want to treat the frail elderly / people with dementia and that they should not be brought into hospital because they are likely to leave in a poorer state than that in which they arrived.

 

[Sandy47]

I agree, much of the NHS work, still appears to be conducted with tunnel vision. Mum has recently had a broken hip, she was taken to hospital alone, a very alien and scary environment, underwent a serious op. Several days later I received a call from the hospital's dementia team, who had been called in, as my mum appeared to be confused. Why were they surprised by this? It's as though she was placed on an orthopaedic ward and that was the only condition they could assist with. The lack of understanding and compassion for dementia sufferers is completely shocking and disgusting. We, their loved ones are expected to cope with whatever dementia throws at us and yet the so called health experts appear to have little to no understanding of the additional problems dementia causes.

Sadly, I agree with everything you've said. I tried to explained to the staff that before admission to hospital my husband needed very little care and had a fairly active life. He was not the person they saw lying in a hospital bed unable to move, eat or respond to questions. The trauma of being whisked away in an ambulance and deposited in this alien environment terrified him and suddenly having strange people prodding and poking him with no familiar face or voice to make him feel safe should have been recognised and acknowledged.
This was brought home to me yesterday by one of the nurses. She told me that he had commented on how nice her hair was and she said she didn't know he could speak! She has been attending him on and off for 2 months.