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 ?

@berryberry44

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

But rhe issue is there if they let you visit in the garden every day then everyone else will want the same for their relatives who they love equally as much and that becomes a massive problem for the staff to try to safely do.

@Sirzy i understand but I'm assuming not every person in the home is close to death.

Objectively, the point seems to be your (understandable) distress at your beloved grandmother who is at the end of her life. Focusing on feeding her is admirable but @berryberry44 she’s a very elderly person who is very poorly with dementia. Sometimes prolonging life isn’t in that persons best interests, no matter how loved they are.
Please take care, do you have support in real life?

@berryberry44 are you in the south east by any chance?
Have you managed to speak with the GM today?

I'm sorry OP but if the only way she will eat and drink is if you feed her then either you devote your life to caring for her (including moving her in with you) or you except that her life coming to an end. At her age with advanced dementia I know which I'd prefer.

Have you contacted a local hospice for their advice?

From a practical point of view how does your nan mobilise? If she's bed bound then to hoist someone at that stage and who is in pain every day might be a bit too much for her. Yes she needs regular pressure relief but I'm not sure hoisting her in and out of bed every day and into a chair might not necessarily in her best interest. Also can you imagine how the staff would cope if they did this for everyone?
If (and I'm sorry if this is the case) she is now coming to the end I think to ask to sit with her would be an acceptable request. You could wear PPE. Most wards I know are allowing this to happen.
But unfortunately she's in a care home, where often staff capacity is an issue. I wouldn't at this point be too hung up on getting her to drink. Just allow her to be comfortable and treated in a dignified pain free way.

There will be other residents who are nearing the end of their lives, the staff are trying to do their best in very difficult times.

I am sorry you are going through this but they are following government guidelines and will be trying their hardest in these times

If she isn't eating or drinking there is little that can be done, it is horrible to see and I get it, my nan died in June from dementia and didn't eat or drink. She went downhill rapidly and if I'm honest although her passing was incredibly sad, I'm glad she is now at peace. Dementia is a cruel disease and no way to live.

One option we had was zoom calls from a carers phone, do you have this option at all so you can talk to her? It wasn't everyday for us but a few times a week. I'm really sorry you are going through this, it is so painful to see a loved one suffering, remember to look after yourself too

Sorry OP, it’s so hard

hi berryberry44, I hope you and your gran are doing as well as possible, I'm so sorry about what you're going through.

I don't know if I can really suggest anything very helpful- but I wanted to say how sorry I am.

I would keep trying to ask if you can be allowed in, on compassionate grounds. Like you say-even though they have other residents, if one is close to dying, you would hope they would try to let you see her.

If they do at all, or even if they would do it- you can give fortisip or water by mouth, using a plastic syringe like the kind used to measure medicine, if the person is propped up a bit.

I wonder if it would be possible to have your gran moved to hospital-especially as she has a uti, or even to a different home, ( but I don't know if that would be possible at the moment) maybe to one that is more actively a nursing home, although I know those might all be difficult as well, if she might be not well enough to be moved.

I feel so sorry for your situation, I hope you can manage to see your gran, and I'm sorry you lost your mum when you were younger, too.

Your gran will know how much you love her though, and she would know you'd want to be with her,

I hope you're able to see your gran, and I hope you're as ok as you can be xx

I’m so sorry. My Dad died in his care home a couple of months ago and it’s so painful knowing they are alone.

We wrote letters full of familiar names and places and asked the staff to read them to him frequently and begged for daily FaceTime calls. It was at the height of the pandemic and I was probably a complete pain but I said it was a vital part of his palliative care. We did eventually get a FaceTime or two.

I’d say be realistic and push for that and other things such as voice recording and letters that will comfort her. Familiar smells and music too.

Best wishes.