Any advice greatly appreciated please

[AnnaBlush]

Question

Can anyone offer advice into possible steps to care for an elderly relative

In last two years her cognitive functioning has deteriorated drastically. At this point she needs someone to physically dress her, prepare all food, help her eat ( she forgets it there/ can't see food), medication, find a room, pay all bills, housework etc. She has diagnosis of dementia- she sees and hears things that are not there, yet she can be quite sharp at times. She is half blind and struggles with hearing.

In last two years care package has been unstable.She is currently entitled to 4 * 15 minute visits per day- but care agency can only complete this 2 days a week Apparently there is no other care agencies available.

Social worker has pushed that I recruit and manage carers and manage carers privately, but as someone who works, has 3 kids, struggles with paperwork I cannot take that on. My relative has one private carer, but the plan had been for her to be a 'bonus' companion (to enhance care package) The private carer can only cover some days and set times, although sometimes does extra hours which I am very grateful for.

Currently my Relative receives care between 6-9 hours a day Partially as she hates being by herself. She will go to bed the minute you leave her or will become so distressed, pressed emergency button and trashes house. Even if she doesn't press emergency button, often I will arrive and find her screaming and bang at windows

There is some albeit very very limited family support which is why we have managed week by week last 6 months. It has been unsustainable so given SW could not get carers - residential was only option. Maud is not agreeable but SW Accessed her as lacking capacity

I tried to take her to a residential two days ago - but my relative would not stay and given she was brandishing objects at me- staff said they could not keep her due to violence.

Social worker is now advising I need to maintain her at home till she arranges for Relative to get a space at the specialised unit ( at same place) and then it will be my responsibility again to take her there

My questions are
1)what would genuinely happen if I told the social worker - I will not be Co ordinating or covering my relatives care rota and give weeks notice?
Before when I have begged for help/ explained there are gaps in rota - she just says she has no options so family have to find a way. By family she means me

1. has anyone ever managed to get professionals to actually help transfer/ transport person to residential. SW does not want to be present as she says when it just escalates my relative. My relative will not be placated by telling her it is temporary etc
2. Any advice how to convince relative to actually go?
3. Any particular agencies you could signpost me to?

Oh and there is no power of attorney

Also to add thanks for taking time to read.
I am at end of my tether, I am stressed , I have to drag kids out of bed in middle of night to go to relative regularly, they spent majority of free time at her house , I honestly expect to get a warning at work- as I am so behind and distracted.

The short answer is no the social worker can't force you to do this. They can ask, as they probably really don't have any other options and for most people it's preferable that family carers step in as it's less distressing generally.

But if you cant do it you can't do it. Say that.

They are trying to dodge having to go to the court of protection for an order to convey. If you dont feel its going to work you taking her then ask them to arrange ambulance transport. They can do this if needed but will avoid doing so unless there is no other option.

Be firm with the social worker. Say no. If you can’t do something say so and be very clear. They will keep trying to push responsibility onto you if they can.

They can't force you. They will make out they can and pull on the heartstrings though.

You need to pull up the drawbridge, tell them that the responsibility is now totally on them and stand firm. It's a who blinks first thing and requires nerves of steel.

Thank you for all the responses

Totally appreciate the case of maintaining boundaries
Many times I have highlighted surely there are people without family and social services have to find carers, but she has rejected this.
Social worker has said it’s a joint responsibility and if my relative doesn’t get her medication WE are negligent.

Re transport to home- she has said ambulance could be there - but it would be my responsibility to open door and talk relative into getting into it.

@BelladiMamma, sorry but I've had to hide your post as it quoted the offending one

Have you got a local Carer Support type organisation who can support you through this as it sounds horrendous. Are you relying on social services funding? There are lots of elderly people with no family to assist in this sort of situation so SW must be able to facilitate this but they probably think she is more likely to cooperate with someone she knows well. Sorry not to be helpful but hope it is sorted soon. You need to stay sane and cannot keep getting up at night and waking the kids too Maybe next time tell the call bell people that you cannot leave the house for to dependents and ask them to call an ambulance or police to get her to a place of safety. They will soon get her from hospital to care home especially if she is already on the list for a bed.

You have no legal responsibility for your mother. If there is no LPOA in place then the state takes legal responsibility for her by default.

It is the social workers responsibility to make sure there are adequate arrangements in place and the social workers responsibility to make arrangements to get her on to the ambulance transport.

They can ask beg you to be part of that, and usually families do agree to be involved as its less distressing for the person that way than 'the men in white coats' coming.

But you can decline if you can't do it.

Put it in writing if you feel you aren't able to make it clear verbally.

There is sadly an attitude often in social services 'that family should be doing it'.

I've been on both sides as a family carer and as a social worker and I don't tolerate it if i hear colleagues doing it to families who are obviously at the end of their tether.

Tell them you at breaking point - you are no longer able to cope and she needs emergency respite care. If that does not happen you will have to take her to a and e as a place of safety as you are no longer able to cope.

If emergency respite doesn’t happen in a time frame you can cope with( they will tell you to support relative until placement is found) then take her to a and e. Then do not be available to support discharge. It’s brutal but if that’s what you have to do to preserve your sanity then you will neither be the first or the last.

My example is slightly different in that the person being moved wasn't fighting it. It was a discharge from hospital but they couldn't go home because it wasn't safe. Social services found the residential place, arranged the transport, visited her house and packed clothes for her. This was because her daughter who lives hours away said she couldn't/wouldn't do it.

If there are no carers to be had, where is it that you are supposed to magic them from? You can't do everything and you have to balance the needs of your children against the needs of your family member. You are not legally responsible for your relative, the SW is spinning you a line here. If you are being talked round then write a letter saying what you are no longer able to do, that you will no longer be responsible for XY and Z because of the impact on your ability to work and your children's sleep and education.

Hang in there, there will be an end to this and your life will get better.

A relative had some form of court order to be admitted to a specialist care home that she is not allowed to leave.
The police would have to attend and take her there if she didn’t go willingly. And if she was admitted to hospital, once the court order was in place, she would have only been discharged to the home. And that’s what happened in the end.
You must pull back and refuse to help. Letting her fail is the only way to make them help.

Time to say no. And mean it. My brother had SS support and they continually over the years tried to put me into his care plan rota. I had to be incredibly blunt to avoid this. I.e. when my mum was in hospital and couldn't look after him I brought him to my house for lunch on the first Sunday. The care plan was updated to say 'sister provides care on Sundays '.

When my brother was having falls daily, it was suggested that he be given a fall alarm. When I asked who would respond to this I was told it would be me! I had wised up by then and told the social worker 'no, I'm not doing that but how about you give your own mobile number and you can go?'

Now if I'm asked to do anything, anything AT ALL to help I say ' I'm not involved in any way with care. I'm just his sister, so I'll see him now and then'.

So sorry
I just realised I didn’t say Thank you to everyone again for taking time to answer. Really thank you for taking the time to read my mini essay and share advice. I think the fact the SW told me I would be negligent had been a stickler for me, and I had held on so long thinking ‘one more week’, ‘someone will start helping’’
everyone’s advice was really invaluable and held me up.

In the end I told the social worker in writing ( as she was ignoring me when I told her verbally I could not manage)
I gave two weeks notice. The social worker immediately rang me and said there were no options and it was down to me. When I disagreed with that and said I was walking away she then offered one night per week waking night staff and 2 hour sitter weekly ( which she had told me my relative was not entitled up until that point) . Tbh that offer almost annoyed me more, given I had literally cried multiple times I couldn’t manage, was having heart palpitations, kids were not managing etc

After a positive covid result, residential was delayed, then my relative ended up in hospital for assessment triggered by her due to wandering and assaulting member of public - partly cause I was not there 24/7)

My relative now has a care package! Albeit temporary and limited but I will not be pulled back in! I still provide significant support but at manageable level.

Thank you again

I'm so sorry you have been through this. The way you and your relative have been treated is criminal.