My 96 year old Mum has vascular dementia. Two weeks ago on New Years Day my Mum went into hospital by ambulance. 24 hours later I got a phone call to say she was medically fit and being discharged. I have been in isolation since the beginning of the pandemic due to medical conditions and so mum has a carer. This carer had sent Mum to hospital and then walked out, so she couldn’t go home. They put her in an overflow ward and said they would contact social services. When I found out where my Mum was, as no one had told me, I phoned the ward to see how she was. A Nurse told me she was comfortable and a doctor would see her in the morning. I couldn’t get through to the ward until the following afternoon and when I asked how my Mum was they told me she was fine but hadn’t been eating or drinking. I asked them if they could please try and make her eat, but more importantly get her to drink. They told me, rather abruptly, that they couldn’t force her if she didn’t want to. They knew she had dementia. I asked them what the doctor had said and was told there was no doctor on their ward as it was a Bank Holiday and she wouldn’t see anyone until after that, I told them she had been ill a couple of weeks ago and her GP had prescribed her fluid supplements and could they try those. They said no because they didn’t have access to her records. I asked if they could get her on some IV fluids but they said that was up to the doctor so she’d have to wait. I wanted to talk to my Mum, so she shouted over to someone to get her to the phone. As she got near the phone I heard her say to them, rather weakly, out of breath and sounding very distressed, to please not let her fall again. When I spoke to her she was crying that she wanted to come home and I tried to persuade her to eat and drink to keep her strength up so she could come home but she said she felt sick. They then took her away and by this time I was in a state of shock at how my mother sounded and asked the person on the phone why she was out of breath and she said that’ it was because she has been walking around all day. Following this I was distressed myself as the ward had been so unhelpful and I was worried for my Mum. Not long after this a nurse phoned me and told me a patient in my Mum’s bay had tested positive for Covid so she would have to stay in isolation for 10 days. I then told this nurse about my Mum and her not eating and drinking and she said although she wasn’t on that ward she would look at her notes. She did and said she would make a note on them. In the morning I phoned again and was told she’d had breakfast. That afternoon a doctor phoned me and said that about lunchtime my Mum had been found on the floor with a broken hip and a head injury. He said her breakfast was on the side uneaten. I told him I wanted my Mum off that ward and he said that he didn’t blame me, he wouldn’t want his Mum on there. He put her on I’ve pain relief and she had her operation the next day. I would like to say things have improved for her now on the orthopaedic ward but they haven’t. She has been out of isolation for the past two days but the ward is closed to visitors. She is not doing well and has had to have a blood transfusion and has another infection. When I phoned her she was always distressed but when I phoned a couple of days ago she had a complete breakdown and begged me to get her out of there and started screaming. It was terrible to hear and the ward staff didn’t seem to know what to do. I haven’t phoned since so as not to upset her. I’m really at my wits end. Every day since her operation I have been told a doctor would phone me and they haven’t. She has lost even more weight and again I was told every day that a dietician was going to see her, but I believe she didn’t see them until yesterday. One day I begged to talk to a doctor and the registrar came on and was obviously annoyed at having to talk to me. She told me my Mum was fine and when I told her the nurse had said she wasn’t she got very angry with me and said something to the nurse and then went on about my Mum’s age. Since then the nurses are always busy when I phone and I’m not getting any detailed information. I really don’t know what to do . Although I’m 73 I am usually able to cope with things but feel total despair. Any advice would be gratefully received.
Mum in Hospital
- Thread starter Spearoelo
- Start date
Hi @Spearoelo and a very warm welcome to Dementia Talking Point. As you've discovered hospitals are not the best place for people with dementia, specially at the moment when they are so under staffed and overwhelmed with covid. That doesn't excuse the nightmare you've had the last few weeks, not helped by you not being able to see her.
I'm sure others that have had more experience of problems in hospital will be along shortly with their advice, but I suggest contacting the hospital social worker about what happens next. Also talk to the PALs service at the hospital. Maybe use what you've written here as the basis of your complaint.
Do have a look round the site, it is a very supportive place and there is wealth of experience among the members of it.
I'm sure others that have had more experience of problems in hospital will be along shortly with their advice, but I suggest contacting the hospital social worker about what happens next. Also talk to the PALs service at the hospital. Maybe use what you've written here as the basis of your complaint.
Do have a look round the site, it is a very supportive place and there is wealth of experience among the members of it.
Thank you for your response and advice Sarasa. I will contact the hospital social worker, so thank you for that. I did talk to PALS and was told to email them and they would come back to me in 5-10 days, as they had to contact the doctors in charge of the departments and that would take a while. I must admit I was a bit surprised as I thought they may have discussed it with me then. Maybe they are very short staffed as well and I do realise it is so difficult for everyone. The trouble is you keep telling yourself it can't be helped and we all have to pull together, but then I think of a scared, confused, frail 96 year old lady who has been taken out of her safe place at home and is suddenly thrown into a place she doesn't know, in pain with a broken hip and surrounded by strangers and who happens to be my dear Mum and then my heart breaks. I am finding this site so informative and am comforted by knowing I am one of a great big community all going through the same thing, but in so many different ways. Bless you all.
hello @Spearoelo
a warm welcome from me too
so sorry to read of your mum's situation ... no wonder you are so concerned
I believe there should be a Dementia Matron (or similar title) in each hospital ... worth contacting them to let them know of your mum's treatment
Admiral Nurses are there to support carers, there may be one at the hospital and they have a Helpline
www.dementiauk.org
our Support Line are there to help too, and you can talk things through with a knowledgeable advisor in real time
www.alzheimers.org.uk
do keep posting ... wish we could help more
a warm welcome from me too
so sorry to read of your mum's situation ... no wonder you are so concerned
I believe there should be a Dementia Matron (or similar title) in each hospital ... worth contacting them to let them know of your mum's treatment
Admiral Nurses are there to support carers, there may be one at the hospital and they have a Helpline
Admiral Nurse Dementia Helpline
Call or email our Dementia Helpline/Alzheimer’s Helpline for reassuring and practical advice from our specialist team of Admiral Nurses.
www.dementiauk.org
our Support Line are there to help too, and you can talk things through with a knowledgeable advisor in real time
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
do keep posting ... wish we could help more
I am so sorry that this has happened to your poor mum @Spearoelo I had a similar experience of catastrophe after catastrophe with my dad which was awful for him and for me but this was long before covid appeared and I was able to visit twice daily. I imagine it is ten times worse if you can't actually see your loved one.
I don't have any advice other than what you have been given and yes try to contact the dementia matron if there is one and the PALs people again because it just sounds awful. The lack of communication and attitude of some of the staff is inexcusable.
I hope you have some support for yourself, someone to talk to at home or a good friend who will listen because it is an enormous worry for you. I hope things improve very quickly.
I don't have any advice other than what you have been given and yes try to contact the dementia matron if there is one and the PALs people again because it just sounds awful. The lack of communication and attitude of some of the staff is inexcusable.
I hope you have some support for yourself, someone to talk to at home or a good friend who will listen because it is an enormous worry for you. I hope things improve very quickly.
Oh my, what a catalogue of disasters.
You have been given some excellent advice, which I cant add to, but I just wondered - what caused the carer to call an ambulance in the first place?
You have been given some excellent advice, which I cant add to, but I just wondered - what caused the carer to call an ambulance in the first place?
Thank you Shedrech. I have been in contact with the Dementia nurse at the hospital and she very kindly went and saw Mum. She told me to send her photos and a letter to take into her as no one could see her. Unfortunately she has had to be off work because of illness and didn't get to see her, but hopefully will see her again in the coming week. I did contact the Admiral nurses but our hospital doesn't have one.
Hi, @Spearoelo . So sorry you snd you mum are going through this utterly dreadful experience. Just wanted to let you know that the Admiral Nurses are provided by Age U.K. and are not part of the NHS as such, although they do liaise. They do wonderful work, so contact your local branch of Age U.K and I’m sure they could help.
Thank you Duggies-girl. I am so sorry you have been through something similar with your Dad, but as you say it is the not seeing her to know what is going on that is affecting me the worse, but I can't imagine what it must be like for her. One day to be in the comfort of her home and then to have been all through what she has and not to see anyone she knows. When I do get to speak to her on the phone, that isn't very often, she sounds so scared and confused. I don't speak to her daily as they hardly ever answer the ward phone and she can't reach the phone as it is attached to the TV and a nurse has to put it in her hand. A nurse told me she asks for me every day and as she had been in isolation for 10 days we then thought she could have a visit today as she has dementia The lead nurse yesterday agreed with it but said before anyone went in to ask the nurse on in the morning and we have now been told it is 14 days, so couldn't go. I seem to get either no information or conflicting information. When I managed to get through this morning at 11.00 am I was told she was asleep so couldn't have a phone call. I have then been phoning all day but got no reply until 9.30pm tonight and told she was asleep. I do understand how short staffed they are but there must be a better way of doing things for patients with Dementia. I hope and pray my Mum comes through this but if she does I feel she won't be the person who went in after what she has been through. She has now been in the hospital 15 days. On this ward for 11 days and although promised that they would, no doctor has phoned to discuss her with me. I really don't know what to do.
Hi Canary, I've asked myself this as she had seen her GP the day before and then the hospital had given her a clean bill of health the following day. The carer then left.
Thank you Scarlet Lady. I will contact Age UK.
@Spearoelo yes, sadly it did affect my dad and he came home a very different man. He lost a lot of weight over the 3 weeks he was in there and went from just needing a lot of support to needing 24/7 care and I had to move in with him. Thankfully he had no memory of the time he was in hospital and it didn't affect his character at all, he kept his good humour and his quick wit but his physical capabilities had declined very much.
I think I would have gone out of my mind if I had not been able to see dad. I hope you get to see your mum soon and that she is okay.
I think I would have gone out of my mind if I had not been able to see dad. I hope you get to see your mum soon and that she is okay.
in case it helps @Spearoelo
www.dementiauk.org
Book a virtual clinic appointment
Book an virtual clinic appointment with a dementia specialist Admiral Nurse at a time that works for you by video or telephone call.
www.dementiauk.org
I think the Admiral Nurses must be provided by several organisations @jennifer1967 . The two ladies I work with are definitely part of Age U.K.
i think they work on behalf of other agencies like the nhs but are part of dementia uk as the admiral nurse told me. it really doesnt matter who they are based with, they are there for the carers and family of PWD so another help in dementia journey and we can do with all the help we can get so use every support system available.
I haven't been on here for the past few days because TBH I have actually been mentally and physically exhausted from the stress of trying to work with the system that is in place in the NHS and discovered you can't! From my last post things have got even worse. Briefly, communication was abysmal, so much so, that although one person told me Mum was not medically fit to be discharged, I then discovered she was being discharged the next day when I managed to get through to ask how she was and a nurse on the ward told me she was being discharged to a care home for respite the next day. Nobody had told me! When I looked up the home she told me Mum was being sent to it was rated recently as inadequate and in special measures, the report was horrendous. I immediately got on to the discharge team to say she wasn't going there and was told you only get one choice and have to take it. I did speak to the hospital social worker but they couldn't help. This was the start of heated discussions with me and members of staff in senior positions who would not back down. Actually amazing, as no one had bothered to talk to me previously. They tried telling me that as the report was so bad the home would have put procedures in place to make sure it had improved before the next CQC inspection, although known of them had been there. I really did try to change to another home but they would not budge and said she had to leave the hospital. I spoke to the home and they said she would be on a unit with only two other new patients with two carers looking after them. As I am shielding, a family member met the ambulance when she arrived and said she was put in an acceptable bedroom on the unit with the two other patients and told this would be her room and her family photos were put in there. We were then told that unit would be in isolation for 10 days as they had come from hospital. This was not so good for the family as only one person had been able to see her for the few days she had been out of isolation at the hospital. Also, a bit rough for Mum as she was happier on a main ward. I then started to feel a bit more relaxed about things as the home seemed to be trying, but not for long. The next day I phoned the home to see how Mum was and told she was fine. I asked if she had eaten, they didn't know for sure. She then asked me if my Mum could weight bear on her leg with the broken hip? I asked them what the hospital discharge notes said, they did not have them! I then asked if I could speak to her allocated keyworker, she didn't have one, short of staff! I asked if she was out of bed as the hospital had said that was important, even if it was sitting in a chair. No, she wasn't. I have spoken to the management and they say that they are led by what the residents want, as it not a hospital and if they don't want to get out of bed or eat or drink it is up to them, but with her dementia she cannot always make rational decisions. The next thing I hear is that after only 36 hours in there she has now been moved to another room in a 20 bedded unit with two to three carers. They said no one can go to see her as no one is allowed in the home for another week, although they don't have any Covid in the home? I can't put in words what I am beginning to think. I can't even talk to her now as you can't get past the manager. She is 96 years old with dementia and delirium and I feel her and us have been treated appallingly. We are now desperately trying to get her out of there. I have to thank you all for your advice as the Alzheimer's Society, Dementia UK and the Admiral Nurses have been so supportive and have really picked me up when down. I can't sleep as all I can think of is how scared she must be. I'm sorry this is so long!
I am a quite new member on her too and my heart breaks for you and your poor mum when I have read through your post. I can't offer much in the way of help or advice but you will be in my thoughts. Stay strong and look after yourself too. X
It’s awful how your mum has been treated, I don’t really have any more advice than others have given but I just wanted to say how sorry I am for you. Unfortunately, your story is not unique, I’m going through something similar with my mum ( although by no means as awful as you) and have just posted a long rant and appeal for advice.
The situation with Covid for people with dementia in hospital is horrific, the nurses are worn out, short staffed and don’t have the time to support patients with advanced dementia. Fortunately on mums two recent admittances to hospital, she was allowed to have someone with her while she was being assessed in A&E but not on the ward. The hospital staff did not read the very detailed notes that her care home had sent with her but I did so was able to tell them what treatment and care she had been having. It appears that whatever the reason someone initially goes into hospital, they then investigate other things, which is great but the lack of an advocate is not helpful - asking mum questions is pointless. She is a very difficult patient, screaming and fighting as she is frightened and anxious and the staff have no idea what to do other than sedate her.
You now need to put your energies into finding a better care home for your mum, mum was also discharged from hospital to a care home at the start of the first lockdown in April 2020 but we were able to reject the one the social workers wanted and find one for ourselves but we were only given two days to do it! Hopefully visiting care homes will be easier from next week as the isolation time for Covid has been reduced for care homes so if you can visit, you might be able to have a meeting with the manager to see what has gone wrong. It might be possible to physically visit prospective new care homes now or at least have a video walk through.
Good luck
The situation with Covid for people with dementia in hospital is horrific, the nurses are worn out, short staffed and don’t have the time to support patients with advanced dementia. Fortunately on mums two recent admittances to hospital, she was allowed to have someone with her while she was being assessed in A&E but not on the ward. The hospital staff did not read the very detailed notes that her care home had sent with her but I did so was able to tell them what treatment and care she had been having. It appears that whatever the reason someone initially goes into hospital, they then investigate other things, which is great but the lack of an advocate is not helpful - asking mum questions is pointless. She is a very difficult patient, screaming and fighting as she is frightened and anxious and the staff have no idea what to do other than sedate her.
You now need to put your energies into finding a better care home for your mum, mum was also discharged from hospital to a care home at the start of the first lockdown in April 2020 but we were able to reject the one the social workers wanted and find one for ourselves but we were only given two days to do it! Hopefully visiting care homes will be easier from next week as the isolation time for Covid has been reduced for care homes so if you can visit, you might be able to have a meeting with the manager to see what has gone wrong. It might be possible to physically visit prospective new care homes now or at least have a video walk through.
Good luck
I am assuming that this is an assessment bed that is only for a limited time - usually 4 - 6 weeks. At the end there is likely to be a Best Interest meeting to decide where she should move to on a more permanent basis. Hospitals have contracts with a limited number of care homes to pay for assessment beds and there is unfortunately, usually little, or no, choice. The quarantine is unpleasant for elderly confused people, but is pretty much standard in care homes and if you moved her now the new care home would probably want to start quarantine all over again.
None of this is good news to you, of course - I do understand that and the communication has been abysmal. Now is the time to start looking for a permanent care home. I expect that she would need either a nursing home or an EMI home/unit due to the level of confusion.
None of this is good news to you, of course - I do understand that and the communication has been abysmal. Now is the time to start looking for a permanent care home. I expect that she would need either a nursing home or an EMI home/unit due to the level of confusion.
Update on Mum. In the care home she now has a UTI, pressure sore and on bed rest being turned every two hours and a BMI of 15 and weighs 35kg, when discharged from hospital it was nearly 41kg. Lost 5kg in 5 days in care home. I had to contact them and ask for her to see a doctor. She has been put on food supplement drinks that I had been asking for from when she went in there.
I had voiced my concerns to one of the support agencies and the home were contacted. I am now public enemy No.1 when I phone to see how mum is and feel really intimidated. They have even told me it is my fault that she has a pressure sore because I said it wasn't good for her to be in bed all day, as they had told me at the hospital, so she'd got it from sitting in a chair. I have spoken to my mum on the phone and she is so weak and distressed I feel she hasn't got the strength to fight anymore. Have been trying for another care home or getting her home with care, but lots of the homes have Covid and am told to get her home will need more assessments and time to get equipment in place, if they would agree to it. When I spoke to the social services they said they weren't going to see her to do an assessment for 4 weeks, so they can then see how she is doing and what her needs are.
I now find out from the home that the hospital would have known there was Covid in the home when she was sent there, although I am told there is none on her part of the home, although she had to go into isolation. The care workers and being tested once a week. Mum so far is negative. I know my Mum is 96 but before she went into hospital she was doing fairly well for her age.
Thank you all for your kind thoughts and advice.
I had voiced my concerns to one of the support agencies and the home were contacted. I am now public enemy No.1 when I phone to see how mum is and feel really intimidated. They have even told me it is my fault that she has a pressure sore because I said it wasn't good for her to be in bed all day, as they had told me at the hospital, so she'd got it from sitting in a chair. I have spoken to my mum on the phone and she is so weak and distressed I feel she hasn't got the strength to fight anymore. Have been trying for another care home or getting her home with care, but lots of the homes have Covid and am told to get her home will need more assessments and time to get equipment in place, if they would agree to it. When I spoke to the social services they said they weren't going to see her to do an assessment for 4 weeks, so they can then see how she is doing and what her needs are.
I now find out from the home that the hospital would have known there was Covid in the home when she was sent there, although I am told there is none on her part of the home, although she had to go into isolation. The care workers and being tested once a week. Mum so far is negative. I know my Mum is 96 but before she went into hospital she was doing fairly well for her age.
Thank you all for your kind thoughts and advice.
