Left with no choice and receiving no empathy for how this might feel

[Melilaw]

Mum was in care home for only 3 months . In hospital twice and still there but to be discharged to nursing home.
Has covid but mild symptoms ( very interesting thread about symptoms in elderly) . Care home refusing to take her back ,saying to staff she’s too frail now and has covid but to us saying something different...

Apparently 10 nh have refused her because of covid positive....while I appreciate they don’t want covid I suspect her ch had it and surely staff should be caring as if residents have covid?

So now going to nh that I haven’t seen, is miles away from family ( once we can see her again) and told by social worker when I raised my concerns and distress that I should basically pull myself together and pull my britches up as this is difficult times!

Have we any say in this? It feels like my mum is being let down by those deciding all of this without taking into account the significant distress that mum will experience with yet another strange place to get used to as well as our own feelings of distress and helplessness as we see our mum being passed from place to place.

 

[Grannie G]

I would find this as distressing as you do @Melilaw

I can understand care homes which are COVID free feeling anxious about admitting someone with COVID, however mild the symptoms, because others may have a more severe attack if they then become infected.

What I find hard to understand is why your mother`s original care home refuses to have her back.

You may be able to get some constructive advice from the careline.

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

 

[Melilaw]

Thank you GrannieG, the care home have said she to me that they can take her back but she needs a rotunda which helps her out of bed. I have seen other residents requiring assistance of two there. The hospital are saying they won’t have her back because of her baseline is now lower but also hospital staff said they wouldn't take her because of covid. The home say they are shocked and have not had much contact from hospital whereas hospital say they have been in constant touch.

She was in hospital for a few days after a fall and then returned to the care home. She was a then back to hospital , without anyone from the home accompanying her because of staff shortage ( denied by manager) . She was tested positive on arrival so I’m afraid the care home must have others with symptoms.
I just feel is always been a bit of a struggle for communication and for it to be reliable . Hence my anxiety about another place of which I know nothing. As mum’s voice and responsible for getting the best for her it feels a terrible dilemma. I’m sure others in the community feel the same.

 

[Louise7]

@Melilaw Welcome to the forum and sorry to hear that your mum is in hospital with covid-19. It does seem that the issue here is communication. It's not too clear, but is her current care home residential and the hospital are saying that your mum now needs a nursing home?

We were in a similar position after mum had a fall which reduced her mobility - her residential care home was saying one thing with regards to why they couldn't take her back and the hospital were saying another. We also found that the hospital social worker and discharge team staff lacked any real empathy - their focus seemed to be on getting patients discharged asap and it did feel that they were treating mum as just a number rather than a human being - so I can appreciate how you are feeling about the situation. If your mum's current home were genuinely happy to take her back then the hospital would have sent her there by now so clearly there is an issue.

A change of care home is not ideal but may not be as distressing to your mum as you think it might be and it could turn out for the best. For various reasons mum was moved into 3 different care homes in the space of 9 months - and we weren't able to visit the first two homes in advance to see what they were like - but she has settled in really well at the third home and has now been happy there for almost 2 years.

Like GrannieG I can understand why care homes would be reluctant to take in someone with covid-19, but don't assume that your mum caught it in her care home as it's quite possible that she caught it during her first hospital admission. The important thing now is to get your mum out of the hospital, as they are not good places for those with dementia, and into a home that will fully meet her care needs. Unlike a residential home, a nursing home will mean that your mum will have 24hr access to a registered nurse which it sounds like she needs at the moment due to her covid diagnosis.

The current situation means that the usual discharge process has changed and patients are being moved into care homes on a temporary, rather than permanent, basis. So although your mum will be going to a placement miles away from family think of it as temporary due to the current covid situation, and confirm with the social worker that this is a temporary arrangement for the moment with a view to moving nearer to the family once the situation improves:

During the COVID-19 pandemic, patients will not be able to wait in hospital until their first choice of care home has a vacancy. This will mean a short spell in an alternative care home and the care coordinators will follow up to ensure patients are able to move as soon as possible to their long term care home.

https://assets.publishing.service.g...9_hospital_discharge_service_requirements.pdf

Hope this is useful but if there continues to be ongoing problems I'd suggest contacting the hospital PALS team to see what they can do to help - and as a tip, get everything in writing eg email the care home and social worker if you can to make sure that there is an audit trail in case it's needed in future.

 

[Melilaw]

Thank you so much for your reply Louise7.
It does sound a similar situation and I’m glad your mum has been settled for a while.

I do understand the current situation but am in despair regarding the lack of empathy. I have just been told that mum only came in with her nightdress and the carehome has not provided any overnight bag at all so she has nothing that is familiar with her while in hospital let alone on discharge to a new home. I find all this so thoughtless and inconsiderate when we have to rely on the professionals during this time to be thinking of this on our behalf. What about those patients that don’t have a family asking these questions? I’m at a loss for words.

 

[kindred]

Thank you so much for your reply Louise7.
It does sound a similar situation and I’m glad your mum has been settled for a while.

I do understand the current situation but am in despair regarding the lack of empathy. I have just been told that mum only came in with her nightdress and the carehome has not provided any overnight bag at all so she has nothing that is familiar with her while in hospital let alone on discharge to a new home. I find all this so thoughtless and inconsiderate when we have to rely on the professionals during this time to be thinking of this on our behalf. What about those patients that don’t have a family asking these questions? I’m at a loss for words.

All sympathy, a lot of us on here have experienced lack of empathy and we are the ones holding fast to the position that our loved ones matter. This is a huge part of our task as carers dealing with hospitals or care homes. I hope you will experience empathy and care in the future. I coped with the lack of empathy in my case from the social services, it was dreadful but eventually a nursing home restored my faith in humanity.
Warmest Kindred

 

[Banjomansmate]

Thank you so much for your reply Louise7.
It does sound a similar situation and I’m glad your mum has been settled for a while.

I do understand the current situation but am in despair regarding the lack of empathy. I have just been told that mum only came in with her nightdress and the carehome has not provided any overnight bag at all so she has nothing that is familiar with her while in hospital let alone on discharge to a new home. I find all this so thoughtless and inconsiderate when we have to rely on the professionals during this time to be thinking of this on our behalf. What about those patients that don’t have a family asking these questions? I’m at a loss for words.

This is why we always say that we do not stop being “carers” when our loved ones go into residential care, our role may change from looking after them physically but we are still there beside them fighting for what is right for them!

 

[Melilaw]

hello @kindred im glad you managed to get your faith back! Human kindness sometimes seems so hard to get sometimes. I get so angry and worry that when I do try and voice concerns that they get fed up and even more unavailable! I’m hoping the new nh will be different.

 

[Melilaw]

Absolutely @Banjomansmate but how hard it is! Especially when we are grieving for all that has changed and anxious about whether care is good enough for our loved ones. Particularly when mum never wanted to leave her home in the first place. Such a huge responsibility

 

[Just me]

I feel for you @Melilaw .
Mum was recently admitted to hospital as an emergency and I was shocked at how difficult it was to get any information and saddened at the lack of compassion shown for an elderly lady with advanced dementia by ward staff and hospital social services.
i hope you mum is given a suitable place soon.

 

[Hoped]

I was so sorry to read your post.This happened o my Dad last month,his care home called an ambulance as he had had a fall and he was unaccompanied to hospital and discharged 4 days later when the care home manager went to visit him without any communication with the family.He was fit for discharge a few days later having had dehydration however more than 11 nursing homes declined him and he remained in hospital for 5 weeks with his dementia declining .By the time he got to a nursing home he was very weak and although testing negative on discharge 4 days into he nursing home he was having breathing problems so was readmitted to hospital where he tested positive we were told he was OK just weak.We kept on saying we wanted to take him home as we not allowed to see him,in the end we managed to have him transferred to a local hospice but when he arrived he was so weak he passed 3 days later.We were blessed to be with him but still in shock with the sudden turn of events and lack of communication.I wish you well.

 

[Melilaw]

Hello @Just me thank you for your message . It is difficult to get information . I know they are busy and having to give info and respond to lots of worried families at this time. It’s very scary time for everyone. But what helps me in these uncertain times is communication because if I feel that I am kept in mind by staff and responded to in a considerate way I can then feel that they are with my mum. Being kept in mind as mum’s representative if you like while my mum cannot hold me in mind anymore means so much .
I do hope your mum recovers soon .

 

[Melilaw]

Hello @Hoped what an awful experience for you and your family. It does sound so similar in places. I feel sad and angry too for you all- we feel very helpless on witnessing our loved ones decline through dementia anyway but this takes it to another level and makes it even more painful.
I am so pleased you managed to get to see him and my sincere condolences to you and your family

 

[Pepp3r]

Hi Melilaw , I've only just found this forum and have read your story and others in this thread. It shows the love we have for our families keeps us going in these very tough times . I'm sorry I have no words of wisdom , all I can say is somehow we do find the strength to keep going, fighting for our loved ones and doing the right thing! My thoughts are with you and I hope your mum finds a nh soon.

 

[Melilaw]

Hi @Pepp3r Thanks for your message and for your kind words. It makes a huge difference to know there are people like yourself who have responded and that you get it! Mum being discharged today to nursing home. I shall be in touch with them at some point today and hope they communicate better than I’ve had so far .