Advise please!

[ladyandthetramp]

Hi, my mother was diagnosed in late summer 23 with alzeheimers. She lives on her own, in a 1st floor flat with a balcony & stairs, bath no shower.

She has been proped up by myself or other retired residents living in close proximity to her for about 8 months. And is only now getting some care issued.

However I'm really struggling with the system to get the most appropriate care for her.

She has lost mental capacity... yet social workers are insisting she goes back home to her own flat.

Her mental health is rapidly declining being on her own. She is lonely and Wanders. A pendent alarm or anything else won't work as she can't use technology

The care worker is trying to find all ways possible of using tech, no care home, and little to no day care centre visits due to cost.

They want 3 / 4 touch points a day. Insist on a key safe.
Have installed key safe but they now want to log key code on their systems.

I'm not against safety, but do feel they are not working with me or in the best interest of mums care needs.

If I give out the code, is this purely for safety, or does it relinquish any other rights for my Mum and her care needs? (Yes suspicious i am)

Also, anyone with any ideas on how I can push for more care??... I can't believe the system thinks its fine to send someone home to an empty flat, to live on their own.. when they have no mental capacity to cope with their own care needs or safety.

Would they be happy to leave a 5 year old in a flat on their own??!

The system is ****! Sorry ranting on that one!

Ps. I work full time, live close-ish, but am only family member around for over 100 miles.

They keep asking me about a carers assessment... but im not a carer! I'm her daughter!!

 

[SAP]

Hello @ladyandthetramp, in answer to your post, if you don’t give out the key safe code, how will anyone get in to support, your mum is there is an emergency? I can’t see how it would relinquish any of her rights to care.
If your mum is funded by the local authority, then they will go up to 4 care visits a day. Once they get to this point then they will be looking at residential care, is this something you have thought about.
Has your mum been in hospital, you say she is going back home, where from? Has she been assessed as not having mental capacity by a social worker?
You may not see yourself as her carer but you are and having a carers assessment will highlight how difficult it is for you to support your mum whilst working full time. If social services think you can cope then frankly they will let you. We are all unpaid carers for our loved ones with dementia.
You are right, the system is shocking and you have every right to rant. Go back to the social worker, ask for the assessment,make it clear you can offer no level of support that will maintain your mum’s current living situation and) demand they take appaction. Let them know if anything happens, it will be on their watch.

 

[ladyandthetramp]

Yes social worker assessment has taken place and declared she no longer has mental capacity to care for herself.

Yet they will send her home!! How ridiculous is that! You can't lolm after yourself, yet for 75% of the day you will live on your own with no help or company! And that's humane? That's safe? That's looking after her wellbeing?

Yes currently in hospital, awaiting discharge once appropriate care package in place.

Yes funded by local authority.

I have been told they won't give her care home as her needs are not 24 hours.

I understand that by rushing to her care every few days I have been masking the real level of support she needs.. I will no longer be caring for her... only as a daughter visiting when i can.

The more I do, the less they will provide.. same for other elderly residents that live close by if they provide support to my mum.. so as soon as she comes out of hospital, I wont be supporting her.

Its horrible, but i need to be hands off now to get the social workers to step up!!

She was just starting 3 x a day care on the day she fell ill and went into hospital over a month ago.

So is a carers assessment good to do? I just don't want anyone to say I am caring for her... I am her daughter...not a carer officially!

 

[LouiseW]

Hi

So sorry that you and your family are having to endure this awful system.

It beggers belief that family carers have to pull back from their loved one in order to get Social Services to wake up.

I once assumed that Social Services, the NHS and families could work together to support a person with dementia - bitter experience has taught me that this is just not the case. The only way forward is for you to step back and tell averyone that this is what you are doing.

For many families - once you've got through this stage things improve alot so I wish you all the best.

You are not alone !

 

[ladyandthetramp]

Many thanks.. my personal experience already wants me to stand on the roof tops and shout to our government..
We are about to go through another change in leadership.. what person will stand up.. put their hand up and admit to our country getting NHS and social care wrong for so many years . That to change will require a massive overall, and some years down the line..but it would be worth it..better than ignoring people, sticking their head in the sand etc!.
The system needs to change urgently.. and I expect my words echo not just this forum but many areas of care.. we are all human, and most will go through this in our lives . Yet to ignore is wrong on all counts..

 

[SAP]

I suspect they will wait until 4x care visits have been tried and then look at residential care. It is criminal the way people are treated, I’m just so sorry you are having to face all of this. As your mum is wandering, these is an obvious safeguarding issue, if you can push hard in this fact.

 

[yoy]

If LA funded it seems normal practice for them to try 4 care visits a day at the PWD's home before considering a care home if this proves to be inadequate. However this does leave PWD alone for 20+ hours a day as you have said. And if she is wandering outside her home without knowing where she is then she is at risk of harm. I would write/email the social worker (to create a paper trail) telling them she is a "vulnerable person" at "risk of harm" and that they have a duty of care, and that only a care home would now provide the safety and care that she needs. List all the difficulties she has - wandering and anything else you can think of. Stress that you are unable to provide any care. And tell them that as a result, if she is sent home alone, then they are responsible. Good luck, you need to fight for what you think would be the best care for your mum.

 

[Ann1923]

If LA funded it seems normal practice for them to try 4 care visits a day at the PWD's home before considering a care home if this proves to be inadequate. However this does leave PWD alone for 20+ hours a day as you have said. And if she is wandering outside her home without knowing where she is then she is at risk of harm. I would write/email the social worker (to create a paper trail) telling them she is a "vulnerable person" at "risk of harm" and that they have a duty of care, and that only a care home would now provide the safety and care that she needs. List all the difficulties she has - wandering and anything else you can think of. Stress that you are unable to provide any care. And tell them that as a result, if she is sent home alone, then they are responsible. Good luck, you need to fight for what you think would be the best care for your mum.

I'm in a similar position with my dad who is 82 and has just had a no capacity assessment. He requires 24 hr care...I told them about his inconsistent locking of his doors day and night, inability to dial a number from his mobile or landline (he dials part numbers), my worry that he'd be unable to dial an emergency number if needed, and if he could wouldn't be able to make his need understood as his language skills are so severe. So, diagnosis 24 hr care needed.....but he's self funding so it's up to me to find a solution. Care homes I've spoken to are reluctant to accept him because he doesn't want to leave his home, despite me having LPA and he having no capacity. I'm in a neverending loop until he actually harms himself or someone else. The system sucks! There's little to no process. But keep fighting for your mum......I'm fighting to get the care I know my dad needs but good lord it's harder than it should be