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 ?

My mother in law died last week in a care home. She had stopped eating approximately 3 weeks prior and was on fortified drinks, but in the end refused those too and died very peacefully. She was 90. It is all part of the process, although she didn’t have dementia she had a tumour that caused encephalitis and gave dementia symptoms

Just to add to it, we’re in Portugal and my husband isn’t able to travel for the funeral due to quarantine restrictions

I’m sorry for your situation, but I think you need to accept the reality of the situation

Oh my heart goes out to you, it is so clear how much you love your grandma and I am sorry that you are in this position.
I lost my mum when I was a teenager and my grandma stepped in as a surrogate mum to me. 5 years ago her dementia got worse. As a family we all rallied around to care for her, taking it in turns to stay over and make sure there was someone with her 24/7. She only let me assist her in the shower and with doing her hair. It was a struggle being heavily pregnant/with a newborn. But I was determined because we wanted her at home with her family.
3 years ago she got a UTI and ended up in hospital. The hospital discharged her to a care home. After that she declined rapidly and social services determined she needed 24/7 care in a care home and it was no longer safe for my grandma to live at home.
In October she stopped eating and drinking, having the odd sip of tea or a couple of biscuits. In February she fell and broke her hip. Mainly because she was so malnourished and dehydrated she was even more unsteady on her feet. The 2 weeks she was in hospital was like seeing a different person. She was on powerful painkillers and was bed bound. She started eating and drinking when we were there, My aunties took that as a sign she was getting better. Sadly that’s not the case with dementia. A lot of the time when people are at the end of life they kind of get a second wind for a few days. Especially when they are on strong drugs and in a different setting like a hospital. My grandma was released back to the care home in March the day before lockdown. A few weeks later the home had an outbreak of COVID. My grandma was very poorly and was refusing to eat or drink and the doctor said all they could do is keep her comfortable in her last few days/weeks. We weren’t allowed to visit and honestly although I fully understand why I am angry and I am hurt. Not by the care staff. They were wonderful they FaceTimed us so we could talk to my grandma and sat and held her hand so she wasn’t alone and honestly did everything they could. She passed away in April and has honestly left the biggest hole in my heart. But she is free now and she is not in pain and for that I am thankful.

@Costacoffeeplease they tried her with some drinks called fortisip which apparently have lots of calories in.
She was drinking them at first but now not so much.

So sorry for your loss.
This is so similar to me.
My mum passed away when I was 14 and my gran is my second mum.
Brought me up since mum died,it was always the 3 of us together.
She gets frequent uti
Since the last one three weeks ago she's gone so downhill.
Before this uti she was eating ,drinking fine.

Hi. This sounds so hard for you. If the drs have decided she's not for IV fluids and not for escalation I'd imagine they've also made her DNAR?
I suspect that she is slowly coming to the end. Not wanting to eat or drink, sleeping loads can be a sign that someone is 'actively dying'. It's a natural process of letting go. Intervention at this point would be cruel.
I think you might need to prepare yourself now. The main thing is that she's not in pain, is treated with dignity and is cared for. I'm so sorry covid means you can't see her.

@DeeDimer yeah she's DNR too.
They said she's too frail to resuscitate

Yes that’s the same as my mother in law, she gradually stopped taking the drinks too, in fact the staff went to give her one for breakfast last Tuesday, she refused it and slipped away in front of them

@Costacoffeeplease I'm sorry about your mother in law,it's such a sad time.

This must be so hard for you as it sounds like your Gran is reaching the end of her life and no longer wants to eat. The nursing homes are in a difficult predicament, in my husband’s nursing home we are allowed one visit week this works out at 8 a day, 56 a week one for every resident. If they allowed one family in every day another family would not get a visit. Everyone with a family member in a nursing home is finding this heartbreaking.

Berry, I know it's hard but it really seems like it nearing her time to go.

My Nan died in June. None of us could visit, she died without family there. We haven't even had a funeral as my mum is shielding.
Yes the dementia will stop her from wanting to eat, eventually she will lose the ability to swallow. This must be near if they are giving her purées. When she can no longer swallow, if you try to get her to eat or drink it will choke her, possibly go into her lungs and give her pneumonia. Not eating is the bodies way of going peacefully. Don't try to prolong her life, this will not be the best for her.

OP - you should be proud of everything you've done for your gran. She is clearly loved so much, and she will feel that.

There's nothing you can do now. Her death will not be anyone's fault, there is no one to blame here, and you've said yourself she's comfortable and not in pain.

I'm in a not entirely dissimilar situation with my husband who was admitted today for palliative care. He was being cared for by me at home but it became too difficult to manage with a boisterous toddler. I feel a lot of guilt, especially since my circumstances mean that it's unlikely I will be able to visit. But the death itself is inevitable, and he knows he is loved.

OP, I strongly suggest you ask to discuss this with your gran's GP. From an ethical standpoint they can be objective.
I imagine what you want for her is for her to be well cared for and well looked after. Of course you don't want to lose her, but you do know that at some point you will be facing that. And you have done good for her, you should be very proud of yourself. Try to enjoy your visits and bring her treats and care for her (don't let your.last memories be fighting the home).

@DivGirl I am so sorry

You sound like a lovely granddaughter and you only want the best for your gran. Between her health, age and dementia sadly it would seem that she is nearing the end. It's awful that you can't see her more often and it's entirely different hospital visiting as there are many many more staff than in a care home for cleaning up, caring for patients . Nothing you do now will make any difference to the outcome. Make sure the care home have your contact number and they know to phone you at any time, day or night. Make sure that your phone isn't on do not disturb just in case they phone you from a different number that is programmed into your phone. She knows you love her.

She sounds like a wonderful woman and your rock.
However we are in the middle of a pandemic.
If you pass on Covid to your Gran or a carer/resident of the care home then you might be responsible for her death and possibly lots of others too.
Yes it's a big 'might' but it has happened to thousands of care home residents - google it.
The rules are there to protect as many human lives as possible. You through your grief might not think it's fair - but it's the closest to fair as it can be.

You could give up your job and bring her to your home, if you feel you need to, to care form your Gran 24hrs a day.
But the rules do apply to you to protect others - lots have suffered in this pandemic - it's not fair but it's not personal either.

@berryberry44
You sound like a loving, wonderful granddaughter. How lucky you have been to have had each other. Both of you sound like strong, caring women.
It’s exceptionally painful but she’s 98 and lived nearly a century, making her mark on this world and on you. Her legacy will live on in you. It’s hard to accept losing someone we love so intensely.

Sadly, it sounds like she is edging towards the end of her life and I’d focus on doing what you can to spend time together, take photos, have cuddles and remember the happy times. Dementia is a cruel illness and feeding her is prolonging the inevitable. It would probably be much more healing for you both to enjoy the time you have together instead of simply being there to feed her. Visit her, encourage her to eat and drink when you’re there but enjoy being with your lovely grandmother.

and unMN hugs to you.

So sorry you are going through this, it is very hard when you can't see her. Dementia is a cruel disease, as other have said if she is end of life. There will be something in place to make your gran comfortable, at 98. Care homes are way behind the NHS and some care homes are still on total lockdown.

Trying to make someone eat and drink on end of life, causes more damage.

I’d remove her from the care home, and get a private ambulance home. Which is similar to what we did with my gran she was discharged from hospital to her home by passing the care home they had planned. We cared for her at home, was terribly distressing for us all.

Speak to adult social services and see if they will help - we also had the district nurse come in to change dressings, they also arranged a hospital bed etc

End of life care plan was what it was called I think

I'm sorry you're going through this. You have not let her down, she's very old now and it seems it is her time. The giving up of eating, drinking is natural and her way of letting go. I know it's hard and I'm so sorry, it's time to prepare and to let go. Know you've done all you could do, you've been a lovely granddaughter and the best that can be done is to let her go peacefully. X

I know this is horrible but it will be very familiar to her carers. My gran was the same. She had dementia. She would take a drink if my dad offered it but not otherwise. At that point there was no point in prolonging the inevitable - she had no quality of life. Dementia is a horrible disease.

I’m so sorry. This must be so tough for you. I can completely understand what you’re saying.

You’re absolutely not letting her down. It sounds like quite the opposite. Try and focus on the fact that the care home will be spending time with her and coaxing her to eat. If she’s hungry she will sooner or later. They’ll be used to dementia patients.. Perhaps suggest which yoghurt she likes or send in her favourite biscuits? And look after yourself too.x

You also need to consider the needs and rights of the other residents and the staff. You going in daily increases the risk of them contracting Covid. My mum is in a home and I would be upset if someone was going in daily to visit. Your gran will be offered food and drink and helped to take it. Unfortunately Covid or not, you going in every day to give a small drink is not sustainable long term.

This is insane... you're not asking for free run of the care home, just half hour a day in the garden. I know they have to protect residents but realistically your gran is 98. She isnt going to be around that much longer anyway. I'm sure she would much rather take her chances and see you than have an extra few months left dehydrated and isolated. You could offer to take regular covid tests to minimise the risk to other residents?

My point was it was a garden visit I'm asking for.
Not inside the care home.
You walk around the back to the garden area.
I'm not asking to mingle with the residents.
I guess it is what it is