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AIBU?

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Original poster

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

137 replies

berryberry44 · 03/08/2020 14:45

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 ?

OP posts:
Cherrybakewellll · 03/08/2020 16:05

I work in a care home in an office capacity and I have also been personally in a similar situation many years ago.

From a care home point of view right now, it's so difficult. If they allow you in then they'll have to allow all other residents the same. Is there a DOLS order in place?

From a personal point of view I know how shocking it is to see a loved one like that. My aunt was always a curvy size 16, when she died the coffin was child like. That image will never leave my head.

I would speak to the general manager and request that the clinical lead at the home is also present and explain your concerns. Sadly this situation isn't uncommon in terms of people giving up eating but I do understand that you feel like you need to try. I suspect it would help you long term more than your grandmother as realistically she doesn't know what's happening where as if she was to pass away having not eaten you'll always feel guilty. Speak to the GM and CL.

Cherrybakewellll · 03/08/2020 16:08

Also just to confirm, have the home told you specifically that she isn't eating? They should have everything documented in her care plan which if you are next of kin, you have a right to access.

I would also ask the home if they have tried her on a liquid diet. There are stages of 'purée' they can prepare and it's something our chefs do all the time so it's no trouble. That would be my first line of thought on the practical side.

Unfortunately as you'll know, dementia patients require specific approaches to their care and it's a cruel disease. I really feel for you.

Cherrybakewellll · 03/08/2020 16:09

Worst case, ask them about PEG feeds. It's highly unlikely they would actually be able to do it but then at least you'll have explored all options.

Trashtara · 03/08/2020 16:10

What's the alternative ? Not give her fluids and let her die ?

They will offer her fluids, and food. And she may not take them. And she will die. She will die faster than if you were giving her them but she is starving to death, whether you are caring for her or not.

It is how many with dementia go. Dementia is a cruel, cruel disease.

Sirzy · 03/08/2020 16:13

@Cherrybakewellll

Worst case, ask them about PEG feeds. It's highly unlikely they would actually be able to do it but then at least you'll have explored all options.
At 99 that would be cruel, for one to go down the peg route involves a general anaesthetic. Even NG for someone with advance dementia I can’t see being a nice option.
AhNowTed · 03/08/2020 16:15

The home will be trying to stay Covid free. So no you can't visit. They have to protect all the residents and staff.

I do sympathise. My MiL is in a home. Allowed 1 visit every 10 days with masks and a screen. Absolutely no touching, nothing brought in from outside. It's like a prison visit.

notanothertakeaway · 03/08/2020 16:19

Towards the end of her life, my grandmother declined food & drink. It was distressing to watch, but healthcare professionals assured me that it was a sign her life was coming to an end and she wouldn't be hungry / thirsty

Flowers
balloonsintrees · 03/08/2020 16:27

A broken hip is absolute suicidal inducing agony - and that was when I was a 37 year old. God knows what pain your grandmother is in and even with a replacement there are still major, major issues for years.
This is not meant to be cruel in any way, but should your thoughts be turning towards a more palliative care rather than life extending?

sammylady37 · 03/08/2020 16:31

Declining food and drink is a stage at end of life, particularly in advanced dementia. And artificially providing them can be harmful as the organs are no longer normally processing them, so the patient may end up with fluid overload. There’s no evidence whatsoever that PEG or NG feeding is of any benefit in end-stage dementia, and plenty evidence that it’s harmful.

It’s a horrible situation op, and so much harder that you can’t be there with her. But it doesn’t sound like they’re neglecting her. And they have to follow guidelines for the sake of all their residents.

PatriciaBateman · 03/08/2020 16:43

In the nicest possible way, and having lost an older (very much loved) relative recently myself - try to let go.

There's a difference between someone fighting to stay alive - and being denied that chance, and someone fighting to die - and being denied that chance.

The natural course of dementia is to start refusing food and then fluid. They don't want it, they don't hunger for it. They will sometimes tolerate a very determined relative pushing it into them with the best will in the world. It doesn't help anyone.

I'm sorry, I hope you take this in the gentle way it's meant, and I'm so sorry for what you're going through.

MorganKitten · 03/08/2020 16:44

@Cherrybakewellll

Worst case, ask them about PEG feeds. It's highly unlikely they would actually be able to do it but then at least you'll have explored all options.
My mum had a RIG, and pulled it out twice, and memory issues and they are likely to pull it if the have the strength.
Alanna1 · 03/08/2020 16:45

Speak to a solicitor who specialises in this area of law, would be my suggestion.

countbackfromten · 03/08/2020 16:48

Sadly it sounds like she is dying @berryberry44. It is horrifically sad and my heart goes out to you but this is very common as someone is dying and especially with dementia. She has been through so much from what you have said and I cannot imagine how you are feeling. Be kind to yourself Flowers

Original poster
berryberry44 · 03/08/2020 17:11

I think your miss understanding.
When she was in hospital she refused anything from the nurses but ate mash etc from me.
She drinks from me but won't touch it off anyone else she asks for me.

OP posts:
Original poster
berryberry44 · 03/08/2020 17:20

And if this is her passing away ..and they are only allowing me 1 visit a week.
I'm missing out on all this time I could spend with her holding her hand and talking to her.
I can't cope not being able to spend this time

OP posts:
Sirzy · 03/08/2020 17:20

I think you are unfortunately misunderstanding what is being said, quite possibly due to an understandable level of denial.

Sadly care homes have no choice but to really restrict visitors because I am sure you agree they don’t want to risk Covid coming in at this point.

Ponoka7 · 03/08/2020 17:21

But you couldn't get enough food and fluid in her, unless you visited at least six times a day and even then, she will probably develop a UTI. That msy last a matter of weeks until she is refusing from you.

People aren't misunderstanding, she is at the end of her life.

Ponoka7 · 03/08/2020 17:24

It's tough but you'll have to cope and you will. I was very careful when my DH was dying not to make memories around his death bed. I'd done that with my Granddad.

There might be a possibility of a visit if she is now under palliative care, but not so you can feed her.

DoingDiddlySquat · 03/08/2020 17:24

Your previous posts sounded like you were hoping she will take a glass of water from you, we didnt know how much she could eat. The hospital must have known about her eating and drinking and that she might not have enough drinks to stop her getting dehydrated again . Was she seen by a dietician and speech therapist to see what is safe for her to have. Was there a plan in place for the carehome to help her eat and drink. Would it help to chat to the manager and the gp about her care needs and expectations.

Original poster
berryberry44 · 03/08/2020 17:25

The care plan states to watch out for uti and to prescribe oral antibiotics if need be.
She's only small the doctor says she doesn't need much food/drink to sustain her.

OP posts:
Original poster
berryberry44 · 03/08/2020 17:25

She was seen be a speech therapist and they've put her on a purée food diet.
They said she can have biscuits if dipped in tea etc

OP posts:
Original poster
berryberry44 · 03/08/2020 17:26

*by

OP posts:
Yellowfeather · 03/08/2020 17:29

To give that level of feeding, you would have to have her living with you. It is sad for you, but the policies on visiting are for the protection of all the residents, to minimise the risk of Covid getting into the care home.

It's hard for you, but it's for the protection of the residents. They can't make exceptions for individuals, and even at best you would just be prolonging the inevitable, sadly.

Original poster
berryberry44 · 03/08/2020 17:30

The hospital are allowing visiting for 1 hour per booked apt
What's the difference ?

OP posts:
SeasonFinale · 03/08/2020 17:33

There is a Pandemic.

Most Covid deaths are in care homes.

They cannot let you in.

Remember mask wearing is for the safety of others.

The no visit rule is for other resident's safety too.

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