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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:
DoingDiddlySquat · 03/08/2020 14:54

Sorry to hear about your gran. The home should try and give her whatever food and drinks have been recommended. If you were to go in for 30mins a day then how much would she realistically have in that time. Why dont you ask the home to keep a food and drink diary to see how much she can take.

Original poster
berryberry44 · 03/08/2020 14:56

It's so she at least gets a glass of water.
She's only tiny so anything is better than what she's been getting

OP posts:
ineedaholidaynow · 03/08/2020 14:58

If she is only getting a glass of water a day and has advanced dementia what sort of life does she have?

Original poster
berryberry44 · 03/08/2020 14:59

@ineedaholidaynow what do you mean?
What's the alternative ? Not give her fluids and let her die ?

OP posts:
ineedaholidaynow · 03/08/2020 15:01

I am so sorry she is ill but surely she can't live on a glass of water a day for very long.

Nacreous · 03/08/2020 15:04

I think I would be thinking about this as a safeguarding issue. If the home try and give her liquids but she won't take them and they know there is an alternative (notify them by email/in writing) then it would seem to me that refusing someone access who could facilitate that would be a safeguarding issue for a vulnerable resident.

Is she enjoying her life when she can have food and water, OP?

Georgieporgie29 · 03/08/2020 15:05

No matter what kind of life you think she has, you can’t starve her to death.

Op I’m so sorry to hear this, is there anybody higher up at the home that you could speak to? It’s sounds awful that they know how she would take food and drink but that they won’t implement it. If they still won’t let you then I would certainly ask for the book idea as mention by a pp.

Polnm · 03/08/2020 15:10

Think objectively about what she would have wanted when she was able to make a decision and act accordingly.

Baaaahhhhh · 03/08/2020 15:15

I am assuming she was discharged to a care home from the hospital after breaking her hip, and then ended up in hospital again with a UTI? Is that right?

It is very sad, but at her age, with advanced dementia, and following a broken hip, her prognosis is not good, hence it would seem the doctors/carers have her on an end of life care plan. Have you been involved in this decision? This is a very sad time for you, as you have been her carer, and you need to be involved in decision making, and be able to feel that everything is being done, that can reasonably be done, in order for her to remain comfortable. Keep in regular contact with the home, they shouldn't mind, you are showing you care, but unfortunately at the moment, this rule of visiting applies to us all whatever the circumstances.

Rosiesma · 03/08/2020 15:16

I'm terribly sorry you are facing this. It must be very distressing for you to deal with and I can see why you're so upset.
However with advanced dementia, your gran will also refuse food/drink completely as that is the sad nature of the illness, and is it for the best for her to prolong what's happening for longer?
I agree with asking for communication regarding your grans intake of food/fluids, so you can see what she is taking daily. And also speak with her GP to find out if they are involved and supporting your gran within the home might be a way to go. The hospital have said no more admissions/iv fluids for a reason, it won't help your gran get better or improve in any way, and they maybe see it as not in her best interests now at this stage.
I'm sorry, I know how hard it is to accept this type of situation. Speak to her GP and raise it again with the home manager and request that you're kept informed of intake/output, from my experience of looking after people like your gran we had charts detailing both daily, when and what was offered and if accepted/refused.
Do you have any other family members that can support you/her at this time?

Leaannb · 03/08/2020 15:20

Allowing OP to visit everyday is a safeguarding issue for the other residents in the home. Since the hospital has said no more IV fluids this is turning into palliative care. A glass of water a day is not going to keep her alive

Original poster
berryberry44 · 03/08/2020 15:29

She was eating mash and gravy and yoghurts with me
She had a cup of tea with biscuits dipped in

OP posts:
Original poster
berryberry44 · 03/08/2020 15:30

No no other family In the UK
I feel like if I don't go in she will starve to death.

OP posts:
PotteringAlong · 03/08/2020 15:32

She is 99. She had advanced dementia.

Do you want to extend her life for her or for you?

Flowers
Baaaahhhhh · 03/08/2020 15:35

She was eating mash and gravy and yoghurts with me
She had a cup of tea with biscuits dipped in

But this was before her broken hip? She has had a fall, broken a bone, and been in hospital, and then got an infection. She is unfortunately not the same as before. All of that at 98 years old is traumatic, and the body can only take so much at that age.

ineedaholidaynow · 03/08/2020 15:35

When was she eating mash and gravy? Why did you mention just giving her a glass of water? Has she changed what she can cope with even if you are feeding her.

Life expectancy after breaking a hip especially when there are other health issues isn’t always good either.

VWGolfmk2 · 03/08/2020 15:39

Op, it is not the care home making the decisions about the visits, but the Government. The care home are following Govt regulations and rightly so, they will get into serious trouble if they don't adhere strictly to guidelines. It is very distressing for you, but its for the greater good of the many vulnerable residents and staff.

If your grandmother is on end of life care, the home does have the option to do a risk assessment and if they deem it suitable they could allow you a one off visit, but only if they feel they can control the risk. There's no way around the strict 30 minutes once per week policy I'm afraid at this point. At some point in the near future the visiting will be changed to allow tightly controlled internal visits, but again only if the home risk assesses and deems it suitable.
Very sorry for your distress over this, its a very hard time for all concerned but it sounds like the home are following the rules and its not personal.

jessycake · 03/08/2020 15:39

You may be able to appeal on the grounds of her mental health .Sadly we were unable to see my mum again until she was unresponsive. Its all very cruel

TheFaerieQueene · 03/08/2020 15:43

My wonderful father died last year of advanced dementia- so before the pandemic. Eventually he wouldn’t eat or drink anything from anyone. This final stage happened as a result of his last uti which developed into sepsis. He lost his ability to swallow, which sadly might well happen to your GM, so feeding her isn’t going to be recommended due to the risk of aspiration. It is a hard thing to accept as it goes against all our instincts, but he didn’t suffer at all, it is believed that the thirst and hunger triggers don’t exist at this point. Please dont beat yourself up over this. Make sure that they are providing regular mouth care to keep her comfortable

Samcro · 03/08/2020 15:45

so sorry your going through this.
sadly its the way care homes are at the moment re visiting.
its a horrid situation ( i get to see my dd once a week in the garden.)

VWGolfmk2 · 03/08/2020 15:45

Also worth noting that all care home visiting protocols are tightly controlled and regulated, and have to be signed off by public health or other bodies depending on your location. Care Home visits are being highly regulated by several inspecting organisations. Care Homes are between a rock and a hard place; if they allow an unauthorised visit, they can be reported and face enforecment action, or worst case senario potential prosection on H&S if they break protocol and there is an outbreak. But care homes are desperately aware of the impact restricted visits are having on both residents and family, but are really unable to do anything other than follow government regulations.

MorganKitten · 03/08/2020 15:48

You get an appointment a week!! We get one every two weeks if we’re lucky.

hellsbellsmelons · 03/08/2020 15:51

What's the alternative ? Not give her fluids and let her die ?
It sounds harsh but that is the alternative.
We had to make the decision for my mum not to continue with any help.
We wanted her to go with a bit of dignity as she'd lost most of it already.
It was heartbreaking and they kept her pain meds topped up so she didn't suffer.
I was able to be with her though. Day and night, in February, just before the pandemic really hit.
It does go against everything you want to do.
But you may need to accept that this is it.
I'm so sorry OP. It's an awful time and nothing will make it any easier.
We just didn't want my poor mum to suffer any more.

Rosiesma · 03/08/2020 15:56

It's so very sad, but as a pp said, the home are tied by government regulations. They should tell you however how she is being supported within the home and what is being done to manage the situation.
She's been through an awful lot for anyone, never mind someone of 99 with other illnesses. She's just been moved again and it may take a little time for her to settle again too.
Do you know for certain she's refusing everything but a glass of water? The home should be able to tell you what they're offering and when, and what was taken and what was refused, and the GP how she is being supported by them by means of medication and how they are advising the home to deal with the refusal of any food/fluids.

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