Advice needed please- phone problems among state of chaos…
Our daughter lives alone in council / social housing flat.
She is a vulnerable adult, she has schizophrenia and possibly undiagnosed ASC.
She keeps loosing her mobile phone.
She has memory problems.
My husband and I are her carers.
She regularly tells her care coordinator she does not want them to contact us, she will then need our help and she will often not allow social care in to her flat to support her. They may have withdrawn the workers no way of us knowing.
Currently she changes her mind about everything on a daily basis.
It’s an endless battle to ask mental health team or adult social care to communicate about issues such as when she needs to see GP but avoids or is too unwell to plan to do this. If someone has moved in and is controlling her, a regular occurrence.
We keep visiting her to do basically everything, wash up, clean, help her with food.
Sometimes We drive over and cannot get her to answer the door and when we can get in she needs help desperately, and mostly does talking to imaginary voices or dancing whilst we try to make things in her flat safe.
She is just about functioning.
We buy things like phones and laptops but she gives them away to others for money or looses them.
It is a challenging chaos.
We want to make it so she can call us but how can we get a landline when they are stopping offering this service and she does not trust landlines and might throw it in the bin anyway.
She has not agreed to have internet . She is suspicious of it.
Writing this I cannot see how anyone can advise really.
We will have to write again to her mental health support worker which we do each week but often don’t hear back.
Oh hum Ula
Advice needed please- phone problems among state of chaos…
Well, it sounds a big problem for you. Either way your daughter needs help. If she is doing some of the things like give things away, don’t replace with something that just costing you money as she does needs to learn that you have not got deep pockets. If it causes a issues then challenge it as, many of us have the same issues where you can’t keep replacing things or buying more due to costs. It might be worth her being in a place where there are full time carers as she is so vulnerable and there boundaries to help her understand better how she can live a normal life without putting more worry on.
Thanks for your reply Michael
Your words reflect well all we try to balance.
At the moment we wish she was in supported living but she declined the offer after leaving hospital,
Although it is a difficult situation we are glad she has had another chance at independence.
I am so grateful for your post as it helps me to know / remember I need to be as careful of my own funds as I can.
I am trying to save to retire.
The idea about her not being aware of boundaries is v helpful I can use this in my next letter to mental health team.
I appreciate the thought / care you have given
Stop rushing in to solve her problems. This is part of the entire issue. Maybe also see if she qualifies for external support. If she is on disability benefits she should do.
Cannot really add anything sadly or offer advice but sending hugs. I agree Supported Living might be the best option but difficult if she is an adult with ‘mental capacity’ and has refused this option. I can well understand you want her to have her freedom. But it sounds as if she may be a danger to herself now? I also agree re protecting your own funds, and will the MH team be more likely to respond if you ‘step back’ and do not try to help? I realise this will go against all your instincts as a very loving mother. I guess you have tried talking to MIND or SANE for advice? It sounds like a total nightmare and I really do feel for you as the love you have for your daughter shines through and it is really heartbreaking to read with regard to how hard you try to help her.
Thank you caring friends.
We will contact mind and sane x
It is about the dance of stepping back and stepping forward with thoughtfulness
I will swim in the sea to keep calm and care on today xxx
Ula, such a difficult situation and so stressful, never knowing what you’ll walk into.
Very hard when emotionally involved.
Are her social care workers consistent and does she have a rota to know who is coming?
I doubt she’d agree to a keysafe?
Would a lifeline or similar work for her, preferably fixed to the wall? Can’t imagine her ‘friends’ would want to take that and it would prevent her losing it.
@Ula I really feel for you.
You and your husband are doing so much and from what you share in the forum I know this is all taking a huge toll on you, and your husband too I’m sure ( I hope he has something like your painting to help him too).
I’d like to offer some food for thought as well as practical ideas, hope that’s ok . As a creative person, I’m sure you’ve already had lots of thoughts and ideas, it certainly sounds like you’ve explored lots of options.
(Caveat to my thoughts - as you know I’ve only cared for Mum and Dad - and Dad had vascular dementia, so I’ve no direct experience of caring for someone with mental health issues, although I have some indirect friend & family experience)
As an observer-reader, my understanding is that you’re trying hard to manage & navigate your daughters behaviors whilst the mental health team, and adult social care / care coordinator manage her living and health/wellbeing directly. My interpretation is that the support they’re offering is inadequate/not enough or doesn’t meet her needs plus you’re not being given the right level of communication & information for you & your husband to feel reassured that your daughter is safe.
Sorry if that states the obvious.
I’m guessing you’ve explored a lot of support groups, other mental health services. However, underlying her behaviors and for your peace of mind, it really sounds like you need more mental health support. Her reasoning capabilities and self awareness for her own safety and everyday needs is not the same as ours and even if the current mental health team can help it doesn’t sound like it’s improving her ‘functioning’ or capabilities to live alone.
There are ‘gadgets’ like the Sure safe completely mobile ‘button’ or bracelet which connects the person to 5 contacts, Products - SureSafe or GPS trackers the size of buttons which people use in their luggage / handbags to ‘find something’ if its lost. BUT like all the tech you’ve got these are easily lost…Unless she can change/learn a new ‘habit’ the behavior will repeat.
As, with all families, there are established histrionics/ dynamics it will be difficult for you & your husband to persuade or change her behavior. However, perhaps a new psychologist/psychiatrist or specialist can help her? She may resist ‘sheltered’ housing, but perhaps a new support group or professional introduced as part of ‘her team’ could help?
I’ve no idea about how to organise private sessions or what support groups are available - I only found this: https://www.rethink.org/ and wondered if the housing people could reach out to her / promote the idea of housing/extra support to her?!? Housing
Sending big empathetic hugs and hope something above helps!
Key safe idea is a good one.
It helps me reflect that daughter is changeable in the extreme, one part of her would want that, the times when she is afraid. Very helpful idea to offer over time.
Her friends also struggle, they have psychosis as well, but they all care for one another in a slightly turbulent way.
Social care have had to step back a bit we think, limited knowledge of this as she changes her agreement with teams to share. She is suspicious of everyone at times and locks them out.
I agree with all your points.
I have had long term therapy and can return when I feel the need.
We learnt yesterday she is to have a psychologist alongside the psychiatrist and this is feeling positive.
The changeable cycles are rapid, and she know is more lucid, two days later.
I will keep reading and reflecting on your posts and I will explore support from rethink.
Sheltered housing is in the background as an option but not yet.
She is due a medication change and they are trying to support her to have the maximum freedom.
In the end we need to be just parents and stop doing as much, we will have to for our and her well-being.