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Just appalling - re previous post Crying night after night

Susan11

Registered User
Nov 18, 2018
2,418
UPDATE......Mum collapsed and banged her head in the bathroom early yesterday morning and was unconscious for 5 minutes. I called an ambulance. She was not fully with it until they got there 20 minutes later. After travelling to our nearest hospital 3/4 hour away, Mum was refused admittance and the ambulance was turned away due to being an 8 hour wait!! We then had to travel to another hospital a further 3/4 hour away and were seen straight away. Did all the normal checks and Mum was smiling and seemingly ok until she had a CT scan and was separated from me and then went totally ballistic. She then turned totally against me, screaming and telling me she hated me. She was shouting at all the nurses, ripping off her tubes and canula and trying to run down the corridor. It was heartbreaking. I know hospitals are frightening for a pwd but I've never known Mum to be that bad. I kept apologising to the staff and nobody seened able to calm or help her. Eventually after several hours, they found a space off the ward in a side room. She was given her own 1-2-1 nurse. Bless her, she wasnt very old and I felt so sorry for her. Despite the charge nurse and doctor and other nurses trying to get her "wired up" again she kept pulling everything off and refused to take bp meds, as by then her bp was sky high. Eventually the doctor came and spoke to me to tell me they couldn't find anything wrong with her. Bloods ok, no apparent infection, heart ok, nothing showing on ct scan of concern, just high bp. He told me to go home and get some rest and they would keep Mum in overnight and once her bp is ok she will be discharged! I wanted to stay with Mum but with feeling so unwell with a chest infection, I decided to go home. As I left, Mum wouldn't kiss me but continued to scream she hated me, it was all my fault being there and that she never wanted me near her again. I looked back through the door to see her holding hands with the nurse and smiling and kissing her cheek. Hearbreaking is not the word. I'm now waiting to hear how she is this morning.

Thank you for your responses and my heart goes out to all of you who are going through/have gone through similar. I will try and get to replying to each of you but just wanted to let you know the latest.
Thank you so much for replying and what a terrible time you have had. Such a lot to cope with . I'm sorry to say this but I think you definitely need to tell them you can't take your Mum home. You are worn out . You both need time apart to resolve these issues . Please think seriously about this . It is not in your Mum's interest for you to be worn out. Susan
 

Louise7

Registered User
Mar 25, 2016
2,367
From experience hospitals seem to want to get people with dementia out as soon as possible, not spend time assessing/reviewing them. Your Mum needs to be properly assessed by a dementia specialist. As above, I agree that you can not have Mum back in her current condition, for both her and your sake. If the hospital discharge her home you will be in the same position as you were prior to her admission. You must stand your ground and as per the above advice inform them that she can not be discharged home as you have a chest infection and are in no fit state to look after her. Ask to speak with a dementia nurse if the hospital has one but as various others have already suggested, a period of respite would do you both good. You would have time to get better and your Mum could get properly assessed. As she is self funding you will probably find that the hospital social worker will not want to get involved but they may be able to provide you with a list of homes which can offer emergency respite. You need to consider the impact to both your Mum and you if she returns home. Placing her in respite care is not 'failing', it is taking steps to improve the situation. Obviously wait to see what the hospital have to say this morning but if they haven't found any health problems they are unlikely to keep her in.
 

canary

Registered User
Feb 25, 2014
13,381
South coast
As she is self funding you will probably find that the hospital social worker will not want to get involved but they may be able to provide you with a list of homes which can offer emergency respite. You need to consider the impact to both your Mum and you if she returns home. Placing her in respite care is not 'failing', it is taking steps to improve the situation.
I seem to remember that there is a further complication as, although her mum is self-funding, tryingmybest is not the POA - there is a deputy appointed by the Court of Protection who administers the finances that tryingmy best will need to approach
 

Louise7

Registered User
Mar 25, 2016
2,367
I seem to remember that there is a further complication as, although her mum is self-funding, tryingmybest is not the POA - there is a deputy appointed by the Court of Protection who administers the finances that tryingmy best will need to approach
It is a complication, but not necessarily a bad one in terms of delaying the hospital discharge until respite can be arranged, if that is what tryingmybest wants to do.
 

nita

Registered User
Dec 30, 2011
1,907
Essex
I hope that @tryingmybest can see the ward doctor and have a proper talk with him. She needs to strongly suggest her mother sees a mental health/geriatric psychiatrist to be assessed before any thought of a discharge. If she speaks to the ward clerk by phone she can arrange an appointment to speak with the doctor. It is sometimes difficult as you need to be on the spot to catch them. Does the hospital have a dementia champion - a nurse specialised in supporting people with the illness? Maybe an idea to speak to the SW even If self-funding as they may be involved in delaying discharge.
 

Susan11

Registered User
Nov 18, 2018
2,418
Hi How's things ? I hope you are managing ok . How is your Mum ?
I wish I could find something useful to say but I hope the advice given above has been useful for you and the Drs and staff at the hospital are able to help.
Perhaps you have had the chance to get a little rest .
With best wishes
Susan
 

tryingmybest

Registered User
May 22, 2015
644
UPDATE......Mums still in hospital. When I visited yesterday , they had done her hair and she was sitting in a chair looking much better and more with it.

A hospital psychiatrist contacted me friday for more info and said he would be doing an assessment. However when I last spoke to tbe doctor she said nothing was wrong with Mum other than mobility problems which led to her fall.......NO, she has mobiliy, but had a fall due to the new meds!! She seemed to think Mum needs physio sessions before they can discharge her. I said I totally disagreed and made it clear (as suggested on here)I will not be taking her home until she has a proper mental assessment and I get some support via a CPN or somebody plus she has something to keep her calm at night in order to keep her at home which is what we both want.

I am so poorly at the moment with a chest infection and so very tired so I have decided not to go in today. I should really be making the most of this enforced respite but am too ill. I will let you know tomorrow what transpires.
 

Louise7

Registered User
Mar 25, 2016
2,367
It's good news that your Mum is a bit better and the psychiatrist is going to assess her. Well done on standing your ground too, and also taking a break as you need to look after yourself.

I hope the doctor takes notice of what you are saying. We had an awful time when Mum was in hospital last year due to staff who seemed to think that they knew Mum better than the family did and put everything down to 'dementia'. It's stressful enough having to attend the hospital and deal with any subsequent care issues without having to fight to get the 'professionals' to listen to what you are saying to them. I hope things improve tomorrow.
 

Susan11

Registered User
Nov 18, 2018
2,418
UPDATE......Mums still in hospital. When I visited yesterday , they had done her hair and she was sitting in a chair looking much better and more with it.

A hospital psychiatrist contacted me friday for more info and said he would be doing an assessment. However when I last spoke to tbe doctor she said nothing was wrong with Mum other than mobility problems which led to her fall.......NO, she has mobiliy, but had a fall due to the new meds!! She seemed to think Mum needs physio sessions before they can discharge her. I said I totally disagreed and made it clear (as suggested on here)I will not be taking her home until she has a proper mental assessment and I get some support via a CPN or somebody plus she has something to keep her calm at night in order to keep her at home which is what we both want.

I am so poorly at the moment with a chest infection and so very tired so I have decided not to go in today. I should really be making the most of this enforced respite but am too ill. I will let you know tomorrow what transpires.
I agree it's good to hear your Mum is a bit better And the psychiatrist is going to do an assessment. You'll have a better idea when the psychiatrist has done this . Have you got some medication for your chest infection? Try to rest today . Best wishes Susan
 

myss

Registered User
Jan 14, 2018
439
@tryingmybest I just read the whole thread, my heart goes out to you. I've nothing to add to the good advice given by others, I just want to wish you well with the hospital and I hope the rest goes well into making you recover from your chest infection. All the best xx
 

Kat loves milk tray

Registered User
Jan 1, 2019
28
Sorry to hear your having a difficult time. Keep requesting an assessment by the Mental Health Team or a social worker informing them of your difficulties managing your mum.
As your mum is in hospital perhaps this is the best time for your mum to be discharged to a residential home rather than back to your home, so you can fully recover from your chest infection.
Also this can give you the time to think about future care.
My dad takes Lorazapan and I feel it is ineffective in reducing his agitation and aggression. He recently had to go to A&E and had to have an injection of Lorazapan to sedate him due to his challenging behaviour.injection worked very quickly. We have a review with his GP on Wednesday to discuss stronger medication & future interventions.
 

tryingmybest

Registered User
May 22, 2015
644
UPDATE .........first of all thanks for your replies and support. I'm now in a bit of a pickle. I went and saw Mum today and I'm really not happy. They've had a psychiatrist assess her and he said she has got severe vascular dementia and delirium from an infection, so actually nothing I didn't know already. They want to keep her in for a while and once they have a bed available, will be moving her into a oap ward as they cannot look after her where she. If I thought she was getting better treatment there than here I wouldnt mind, but I noticed when I took her to the toilet she has the behinnings of 4 pressure sores on her bottom which she's never had with me. She also really smells and I doubt has had a wash down there, let alone a shower. She has also got a very sore bit between her nose and lips where they hadn't got tissues so were giving her hard hand towels for her nose. I had taken in some special cream on saturday abd tissues together with a few bits and pieces in a bag and that's vanished and nobody knows where it is! They say she's not eating or drinking and I've told them she has to be fed but can drink if prompted. I feel as though now I'm feeling better myself, from my chest infection, I should just ask for her to be discharged as she is visably fading away under their care. What should I do?
 

Havemercy

Registered User
Oct 8, 2012
135
Personally I would go for keeping your mother in hospital on the promise that they are transferring her to a more appropriate ward. I would also be asking for an interview with the sister in charge of mum's present ward - so you can tell her about the poor care she is receiving. Please don't be "bullied/persuaded" into having your mum back home before a full assessment of her needs has been carried out by the hospital social work department. Best wishes for a positive outcome.
 

Jessbow

Registered User
Mar 1, 2013
3,069
West Hertfordshire
Try the other ward first. If nessesary put a large notice sellotaped to her table ( blow dignity!) ''I cannot feed myself''
''Please prompt me to drink''
 

tryingmybest

Registered User
May 22, 2015
644
LATEST UPDATE.......just to let you know Mum was been moved yesterday into another ward but in a side room. When I visited yesterday, she was very upset and crying, as she was understandably confused by what is now the 5th move in 5 days. She kept saying she thougt I'd left her there and never thought she'd land up like that and wants to come home..... most she's said in months as she scarcely talks now. I eventually calmed her with some sweeties and Glenn Miller videos on my phone and when I went, she waved me off quite happily.

After a long chat with the OT who was happy to hear I don't need anything and that I have everything in place for Mum at home and a physio checking her mobility, holding my hand down the corridor, the are happy from their perspective to let her come home. The medical team have said there is no reason for her to be kept in as there's nothing wrong with her apart from her dementia. I'm happy to have her back home but just hope to keep her calm at night and hopefully can do this with the Lorazapan I was given last week and which they've been using in hospital. She will certainly be looked after better here with me than the care she's had (or not had) in hospital. From the way she's been too, during her stay, it's made me even more certain that I could never try respite for my own selfish reasons. She has declined so much and many people do say that's a risk you take with respite. At least with my enforced respite of Mums hospital stay I've had a few days to rest a little and get over my chest infection! I shall visit again today then they said I can bring her home tomorrow.

I cant remember if I said previously, but a psychiatrist saw Mum on Friday but all that has come out of that was that he felt she has had delerium from an infection (I presume the chest infection) and severe dementia, most likely vascular. Nothing I didnt know, so assessment wise, that is all that has happened. Should something else have happened?

As for any emotional/practical support for me, zilch. The Foundation Trust is not taking any more referrals and there is no dementia support in my area. I had hoped I had missed something and they would point me in the right direction but no. I shall just have to muddle through on my own as I've done the past 4 years I guess. You hear of people having designated CPNs, Dementia nurses, various dementia support groups etc but sadly nothing here. It's very disappointing but as I thought. Onwards and upwards as they say!!
 
Last edited:

Sirena

Registered User
Feb 27, 2018
2,287
I'm glad to hear your mother is nearly ready to come home, hospital is not a good environment for people with dementia (although obviously sometimes necessary). I hope the medication works during the night.

I wouldn't compare respite with a hospital stay though. Respite should be aware of her needs and have time to deal with them. My mother spent 10 days in hospital and the care assistants could not comprehend that she needed help eating and drinking, they just kept noting that she wasn't doing either despite me telling them every time I went in. They also decided she was incontinent, but actually she just needed prompting to go to the loo, and help to get there. Whereas in her care home the carers are entirely on the case with all these things and give her all the help she needs.
 

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