To think this rule is awful

[Clappingforjoy]

Dm is in a carehome and doctor has confirmed she is in the last stages of dementia and is end of life.
Visits are now allowed but only the ever the same 2 people because of covid there are 4 of us meaning 2 will never see our DM before she passes.
I'm really upset.

I'd bring her home if you possibly can

Even if it wasnt in her best interest? Because last visits to people with dementia arent necessarily for the benefit of the patient, sometimes they are for the benefit of friends and family. Which is fine - they're important too- but their needs shouldn't actually trump the needs of the person dying.

OP if you think it would truly benefit your mum to have you all visit, then I'd start by challenging this rule with the care home managers.

I’m so sorry. This must be unbearable for you and your family.

On a practical level, to get accurate advice about the rules, and the amount of discretion care homes can apply in end of life situations, I’d have a chat with the Alzheimer’s Society. They’ll be able to answer all your questions and provide support - 0333 150 3456.

Could you speak to your MP and see if they can help?

That's terrible. I'm so sorry, OP.

Its a ridulous rule that needs to be given more thought. If you are entering the home wearing masks, have, no symptoms and are only going directly to patient room then i dont see why you cant visit when its end of life. I understand reducing regular visits but it is not acceptable. Different care home staff are probably working with different residents and then going home and mixing with the wider public. It is no different. Someone needs to petition the government on this.

@Clappingforjoy

I'm too fat for a disguise 2baz lol the others are slim.

Wear a very large dress and smuggle one in under your skirts? Seriously though, I wouldn't obey the rules here - just sign in with the name of allowed visitor - or take her out? Can you get her transferred to a hospice like the marie curie end of life care? They are very compassionate there.

Statistically - how does this make any sense. If you allow a visitor to visit on any given day, or once a week, or whenever - it can't possibly matter whether it's the same person who visited the previous week. They will both have been exposed to other people in the intervening week, so insisting that the same person always visits doesn't reduce the probability of transmission. Baffling.

@Porcupineinwaiting

I'd bring her home if you possibly can

Even if it wasnt in her best interest? Because last visits to people with dementia arent necessarily for the benefit of the patient, sometimes they are for the benefit of friends and family. Which is fine - they're important too- but their needs shouldn't actually trump the needs of the person dying.

OP if you think it would truly benefit your mum to have you all visit, then I'd start by challenging this rule with the care home managers.

I heard a lot of that kind of thing when my relative with dementia was in hospital having end of life 'care'. I wish I'd brought her home to die in peace. They said it was not in her best interest to move her. She was given no food or water for days and when we begged for some water and gave it she revived and lived a good time longer in a much better state. I wish we'd realised and brought her home before she got an infection there and died anyway.

What @BlackSwan said. That's ludicrous.
Am so sorry for you, @Clappingforjoy - but if it's any consolation, my own mother was demented at the end (2012) and thought I was her mother or her younger sister, when she was in hospital. So long as there is someone by her side who loves her, she won't know anything else. I think and hope.

Are you absolutely sure it’s government rules because when my FIL was end of life family were allowed ? Most care homes are private management even if funded by council ?

There is some information on carehome.co.uk about the guidelines . It might be worth doing a bit more research .

I feel so sorry for you and your family , this is not acceptable at all.
When this is all over there will be some explaining to do and accountability .
So much heartbreak for family's in the same boat as you, i can't imagine being denied contact with a loved one at their end, unforgivable .
And all the people with chronic/ terminal illness having treatment halted /delayed.
What a nightmare we are in .

Prior to visits being allowed in care homes, the director of public health in every area should disseminate their view on the suitability of visiting in the local authority area, taking into account infection rates and the wider risk environment. The decision on whether or not to allow visitors, and in what circumstances, is an operational decision and therefore ultimately for the provider and managers of each individual setting to make.

The last post is from gov uk

@Clappingforjoy

I know others have posted but look at this link

www.gov.uk/government/publications/visiting-care-homes-during-coronavirus/update-on-policies-for-visiting-arrangements-in-care-homes

The care home should have a visiting policy, ask to see it. I would print of the guidance above and go through and highlight what it state about visiting

They are not being fair

God that’s awful. I’m so sorry

In all cases exemptions should be made for visits to residents at the end of their lives.

This is from gov uk.

I do feel tha care homes are in a difficult position tbh . But I don’t think what you have been told is the law.

Unfortunately some of this is local government . We had this with funerals . Some councils said No mourners some said 10.

A lot of this is guidance for good reason but not necessarily the law as you have indicated .

TBH whatever happens it is going to hurt when she dies. I didn't see my father for some time before he died during lockdown. It didn't make any difference to my grief that it was a long time between last seeing him and his death, it was only through an incredible bit of 'good fortune' that he wasn't alone when he died a slow, painful death. It was a terrible time and TBH not being able to go to the funeral because of Covid was far more upsetting because that was the last thing I could do for him. He only had one family member at the funeral because of it
Sorry that you are going through this.

My Dad’s care home locked down 2 weeks before the National lockdown in March. With the good weather & easing of lockdowns, we could book a 20 min outside, socially distant & masked visit, once a week. Temp would be taken when you arrived, 2 adults only per person. Specially areas with a shelter for each ‘ward’.

Residents are tested every 7 days and visits only restarted late in June after no more residents were returning from hospital & the home had been COVID clear for 14 days.

Two weeks ago, they had their first positive case on the floor in this wave. Everyone is now isolated for 14 days with no regular visitors. And the clock restarts every time there is a positive case. COVID aside, the weather doesn’t allow for 20 min visits outside.

I last hugged my Dad on the 6th March. He’s extremely vulnerable & if he got it, I’d be shocked if he didn’t die. He doesn’t have dementia, but has poor movement & health after a series of strokes.

I am so sad, but I have to keep believing this is for the best. If he became so ill, we could have a ‘final’ visit - just one person - and I’m one of a set of identical twins. Who do we choose to say goodbye?

This is why, though I’m usually a bit of a live & let live sort, everyone who posts that it’s against their personal rights to wear a mask, or looks for any wiggle room in restrictions, or just doesn’t believe in this all being real, I am just unbelievably angry at.

Love to all who understand. And a big fat up yours to those who do not take this seriously.

Maybe it's to do with the area I'm not sure It might well be. My aunt's home sent us a copy of the public health letter which said no visits allowed in their area.

I think it is difficult, homes and carers were criticised for the number of deaths but then when they do what they think is safest they are criticised for that. In my aunt's home I don't think me visiting would be a big risk but if every resident (think there is about 40 of them) had 4 visitors that is 160 people coming into the home and who knows how many might be asymptomatic.

I was talking to my aunt's named carer and she said my aunt actually seemed happier and more settled since lockdown, she thinks the home is calmer with no visitors and the staff lived in during lockdown so far less coming and going. I feel bad about not visiting as she has no one closer than me but she is safe so I take comfort in that.

If you are wearing masks, hand sanitising, social distancing from staff and other patients and only visiting your DM's room then I fail to understand the basis of this decision. I am so sorry for what you are going through, how awful for your family. I hope you Mum is comfortable.

I think it happens in hospitals as well, Kate Garraway was saying her husband's parents haven't been allowed to visit him and he's been in hospital for months. She didn't say if she had visited him.

It’s awful. Our family had similar with an aunt who was in a hospice - cancer. The staff wheeled her bed to the window and we spoke to her from outside. It really is a barbaric way to treat the ill and dying.

I’m so sorry you are in this position @Clappingforjoy and pray every night we As a family are not put in this position with dgm. We haven’t seen Her in person since February and it’s So upsetting.

I’ve no advice for you, I kind of get their reasoning of keeping others safe, but there has to be another way for them to do it (Masks/gloves/full ppe?) and hope you find A solution and peace with the situation.