To think care home should let me visit? What do I do?

[berryberry44]

My gran is 98 nearly 99.
I was her carer up until 3 months ago when she broke her hip.
She has advanced dementia.
She would not take food or drink from carers and had a uti and that led to kidney failure.
In the last month since she's been in the home she's ended up in hospital on a drip with severe dehydration as she won't drink unless I give her it.
She weighs under 5 stone.
I've been allowed to visit in hospital for a hour a day which has been fantastic.
I was feeding her and she was drinking (only from me) if the nurses tried she would scream and cry.

Today she's gone back to home ..they won't let me visit to feed her.
The hospital have put a plan in place where it's not recommend any more hospital admissions for IV drips (so this is life or death now)
The home have said I can't go in her room to feed her (she's bed bound ) even with ppe.
I said can you bring her outside in garden for a garden visit .
They said yes your allowed 1 30 min apt a week.
I said she won't eat or drink unless I give her it.
Can I come daily for 30 mins ?
They refused saying they have 30 people in home who all want to see family..my gran can't have daily visits.

So she will become dehydrated again and no drips so this is a death sentence to her.

Aibu to think this isn't right ?

Did social services feel she would be safer in a carehome with 24hr care because you and any carers coming in couldnt offer the level of care that she needs. Did you live with her.

I'm sorry you are going through this.
I would not be able to watch this happen to my parent or grandparent.
I would be doing everything I could to make sure I was able to spend time with them even if that meant taking them out of the care home.
Unfortunately from what you have said I'm not sure if that is an option for you and whether it would now be in the best interest of your grandma especially if she is really frail.
I'm sorry I couldn't be of further help.

@berryberry44

Would everyone on here be the same if it was them loosing a member of their family? Probably wouldn't be as easy to accept.

My grandma died two months ago. Wasn't allowed to see her in the hospital or in the care home where they essentially sent her to die. It was awful but I'd never have pushed to visit as the lives of all other residents have to be taken into account. It was awful and we felt robbed, sadly there was nothing we could do. Some even missed her funeral due to the new rules... we're in the middle of a pandemic

I just can't believe this is actually happening

I am assuming that if the hospital have said no more drips then they realise that your gran is nearing the end and it is palliative care only. My heart breaks for you OP as she obviously means so much to you. I hope you have some support in RL.

My DF had cancer and dementia and soon after his cancer was diagnosed as terminal he had a fall and ended up in hospital. He started to refuse to eat and drink and there was nothing we could do. At the time I couldn’t understand why they wouldn’t give him a drip but when you look at it with your head rather than your heart you know it is the right thing. My DF died a couple of years ago so pre COVID and it must be so much harder when you have such restrictions with visiting.

Even if I give her a yoghurt and a cup of water. It's better than nothing. That is just prolonging her death though which is cruel. If she won't accept anyone in the whole care home to feed her then she wants to die.

I do this for my job OP. And I'm on the otherside of it with my two grandparents so I understand. I manage the care home and we allow indoor visits to those at the very end of their lives only.

For those asking the OPs grandmother would need hoisting and turning by the sound of it which one person can't safely do. And many counties don't provide community care at night.

Yesterday she was singing and asking for biscuits.
I don't want to let her down.
I just can't let her down,she's looked after me all my life.

Maybe wait and see how the staff manage, youre assuming she wont eat or drink with them. A yoghourt and a glass of water is not enough for anyone to survive on. They may try and see if she will take fortified drinks. You could visit but she may still refuse, isnt well enough, could be asleep.
Carehome staff risk their health every shift and have made amazing sacrifices to look after residents so I am not so sure the covid increases are because they are out socialising.

@berryberry44

Even if I give her a yoghurt and a cup of water. It's better than nothing.

It's not - it's worse. That amount isn't enough to sustain her. It's drawing out her death and turning it into a long painful one. I'm sure you don't want her in pain and discomfort for her remaining days.

@berryberry44

Yesterday she was singing and asking for biscuits. I don't want to let her down. I just can't let her down,she's looked after me all my life.

She's 99 though. It's a phenomenal age. I think you need to accept this.

They've never said she is dying.
They said they have seen people pick up before.
They said they can't predict what will happen.
She isn't in any pain.

I am sorry your grandma is ill. My mother had dementia and eventually stopped eating, there was nothing anybody could do to get her to eat or drink because her body has just given up. Her quality of life was already practically zero due to the dementia so it was a release when she passed away. I think your grandma is just nearing the end and, although you would like to be there to help, in reality there is not much you can do.

that's probably from the staff who will be having a social life out of work. Meeting with people /going to pubs etc

I am so sorry you are going through this at the moment. And I truly understand having lost my mum last year in very similiar circumstances. I remember being confused by the lack of fluids given by the end. It seemed cruel until I understood it. Sadly, of course, there are thousands, perhaps tens of thousands of relatives who are having to be apart from their loved ones in hospital and care homes, as they reach the end of their lives. And of course tens of thousands of patients are dying without their loved ones by their side. It is heartbreaking, but this is the reality of the pandemic.

The care home will have absolutely no choice in being unable to grant more visits. It is way beyond the control of the manager. And of course every resident/patient has their own personal tragedy that we are unaware of as we only concentrate on their own loved one. It simply cannot be done.

However, although I understand your anger, please don't take it out on the staff or condemn them for a social life. My son in law is the manager of a care home and he and the staff have made so many personal sacrifices over the past months, risked their own lives on a daily basis to care for others, so often putting those they care for above the needs of the their own families. It is heartbreaking for them too.

Yesterday she was singing and asking for biscuits.
I don't want to let her down.
I just can't let her down,she's looked after me all my life.

You're not letting her down, you have no control over this. The dementia and Covid are in control.
My grandad ate for me and no one else near the end because he loved me and I asked him to. He didn't want to, I can see that now, but he always put on a brave face for me, even in his last weeks.
That she'll eat for you suggests some level of recognise still and probably her instinct to protect you kicking in and doing it because she knows it's what you want.
Can you speak to her on the phone? Or would one of the carers face time with you to speak to her? It's not ideal but it may be better than nothing, and of comfort to you both.
There's worse things than dying a peaceful and dignified death after a long life and you did look after her, until it wasn't in her best interests any more - I know how hard that is to accept, and how hard it is to lose a loved one to this terrible illness. I'm so sorry OP 💐

To clarify the posters who have questioned my suggestion to discuss PEG/RIG I'll be honest, I was more hoping if the OP spoke to the GM she would be told the fact that it wasn't an option and perhaps that would help OP realise unfortunately the reality of the situation in terms of practicality. Sorry if it sounded naive.

OP I think you have to be honest that she is lucky to have had so long with you, as you are with her. It's horrible but you are going to have to let go soon one way or another.

I sincerely feel for you x

I just can't let her down,she's looked after me all my life.

You haven't let her down. Her body is starting to shut down because she's approaching the end of her life. I know it's hard, and it's sad, but it's the natural order of things. She's lived a good, long life.

So is it the dementia causing her to forget to eat?
Or is she just not hungry ?
Because she told me she was starving so I'm confused.

Don’t forget though with the dementia what she says won’t necessarily be how she is feeling. I remember my Grandma telling me they where starving her and she hadn’t eaten for a week - we arrived as she was finishing her meal.

Unfortunately losing the ability to eat and drink does come with the territory as horrible as it is

If she is on puree food then she has the reduced ability to swallow. Dementia can make people forget to eat and how to eat. Its a terrible illness. I would try and speak to the care home manager and possibly her g.p as you need to know what her quality of life is, is she comfortable, what are the future plans. If you dont you risk carrying grief, anger and guilt for the rest of your life when she dies. She has reached a great age and us obviously loved very much but she is very frail.

She can't stand now,she can't walk,she can't lift herself up in bed.
She needs help eating now.
She's my world .

My DF thought everyone was trying to plot against him or cause him harm when he was in the hospital. He would tell us how they had made him eat his dinner at midnight and how they had tried to push him over in the toilet (whereas they were holding him up as they walked there). It was horrible, I was glad that in his last week he seemed to reach a happy place in his mind, and smiled most of the time even though he had no idea what was going on around him.

Is there perhaps a social worker at the facility you can speak with, or can you contact Hospice? They have a lot of resources for families going through this. It sounds like you need someone to talk to.

Triggers for things that we do every day are affected by dementia.
If she were forgetting to eat, then when presented with food, she would probably eat it if she were hungry, from anyone, even if she didn't recognise the feeling of hunger and what it meant. The same with thirst.
When I did dementia training something stuck with me, if you showed someone with dementia a comb, they might not be able to name it, or tell you what it's for, but hand it to them and they'd likely comb their hair.
Refusing food and fluids is the next stage in dementia, and probably because of what she's been through she's probably genuinely not hungry or thirsty.
Falls and UTIs are unfortunately a part of dementia, but they also lead to deterioration of the condition too, which leads to a deterioration physically.
With reduced movement and her being very slight, her appetite will be very small anyway, even if she had one.
This is the nature of this horrible disease, but OP, she loves you so much that she still recognises you in some way even in the advanced stages - that's something to hold on to. She wouldn't if she felt at all like you'd let her down - which you're not.
Sometimes the best thing for them is the hardest thing for us. Find out what you need to know from her medical professionals. Ask what the procedures are going to be going forward should she refuse to eat and drink so you know what is going to happen and when.

I am really sorry you are going through so much heartache.
But your Nan is at the end of her life, from what you have said so far re her age, her advanced dementia and how very frail she is. No matter how tiny she is the amount of food and drink she is willing to take from you is not going to improve her quality of life or be likely to prolong her life for long.
The care home staff will not stop offering it to her and if she wants or needs it she will take it.
Dementia in itself is a terminal illness and she has sadly entered that terminal phase.
It is a natural thing for her to refuse food and drink and this is ok. Force feeding is not going to do her any favours.
Her body will be shutting down, she will not be feeling any ill effects of this, it is a natural process and the care home staff will be able to recognise when she has symptoms that need to be helped.
It is very sad that this has happened during the pandemic but please stop focusing on the fact that you cannot visit to feed her.
She is being given palliative care which sounds very appropriate. The most important thing for you to be concerned with is that she is comfortable and that any symptoms are well controlled. Prolonging life now is not in her best interest, dying can and should be a calm, dignified and gentle process if it is recognised and accepted as such.
Please try to come
To terms with the reality of the situation and focus on the fact that your Nan has had a very long life and is coming to her natural end.
You can seek counselling from your local hospice who will be able to support you through this.

berryberry44

She can't stand now,she can't walk,she can't lift herself up in bed.
She needs help eating now.
She's my world .

I just read this update.
I’m sorry OP I really am but eating is not what she needs right now, she is not going to get any better.
She needs good palliative care, she needs to be comfortable, that is all that matters now. It is the kindest thing for her and I have been there with my own family and that is what I would always wish for them.

I hope you are ok.