I'd rather care than support, care that understands mental illness but not therapists

pip

This discussion was created from comments split from: I'm Debbie and I work on Scope's helpline. I have a lead role in Benefits, Finance & Housing..

pip

Dear Debbie I have sent an email too, and this is a better edited version if I may; I've lived with parents from my mid 20s when I started with mental illness (trait anxiety personality disorder with recurrent depression) and the disabilities and impairments that go with it, I am 59 soon still much mental instability and very vulnerable socially etc etc, and still live at home with my elderly and mentally frail mum, 89, we care for eachother. if I lost my dear mum I can carry on living here, my sister would expect me to live independently with or without support which I think unrealistic, nor would she let me live with her, nor would I want to live in a flat on my own with this condition. mum says go in a care home, which I thought were for the very elderly, supported living doesn't appeal but extra care housing originally suggested to me by charity independent age does, and there is one in Llandudno called tan y fron- mum is sometimes interested in living back in north wales (we live in Grimsby), adult social services, my GP and mental health team, even independent age tell me it's not urgent or imminent, but to me it is, even while I continue caring for dear mum, and are unresponsive any further. what appears missing is the knowledge of continuing mental illness as a disability: your living is unstable and your range compromised and you already feel extremely vulnerable; and as cumulative over a lifetime: at nearly 60 things like being single, bereavement, new ailments, loneliness can impact me significantly on an already impaired and weakened nervous system and person. and then theres the whole thing of social care: I'd rather care than support, care that understands mental illness but not therapists, care that's familial if not actual family (I am single unfortunately). thankyou for reading, may you advise me sympathetically? pip 

Debbie_Scope

Hello Pip,

Thanks for your post, I received your email too, thank you. I'm really sorry for the late reply. I hope that you'll take comfort from the fact that I completely empathise with you and your situation, that's why its taken a little longer than normal to reply. It's all too easy to be given the run around and told you can't have something or its not the right time but rarely are we ever given a reason why. This can be hard to understand.

It's natural to feel the way you do and you're not alone in feeling like this. It can be very hard to understand why other people don't regard your issues with the same urgency that you do. Of course you want to make plans for your future, it's a natural thing to want to do. We crave and need the security of a stable home and good support networks. We all have different ways of coping with all the things that life brings us and for some of us we want to plan ahead, take control of the situation and get things in place for when the time comes. Others prefer to live from one day to the next not thinking too far ahead, not worrying too much about what the future holds. Anxiety is a growing concern at the moment and why wouldn't we be anxious?! We have so much to be anxious about, so many expectations to live up to. There's so much uncertainty about the future and not knowing what might happen in the future can cause panic and alarm. Our bodies aren't equipped to deal with continuous, prolonged anxiety and eventually becomes overwhelmed. When we're told that your case isn't urgent and you don't have immediate needs, it can be hard to understand why people aren't taking your concerns seriously. This leads to even more anxiety. You get caught up in a vicious circle and it can be really hard to see a way out.

In housing, social care, health care and many other areas, laws govern these systems. All of these authorities have legal duties and many of those duties will take effect at different stages but we tend to only realise this in emergency or crisis situations. With limited resources across the board the authorities have to ensure that they can meet their legal obligations to help people in the most need.
What we often don't realise, is that some of those legal duties don't always align with what you want and you may not be faced with as many choices as you would expect. Knowing what sort of help you're legally entitled to can make a big difference. A case like yours will quite possibly cross over multiple areas of law and if this is the case, there will be multi-agency involvement in your future.  
There are lots of factors in your situation and it's near on impossible to predict the future. You're already doing a great job in researching what the best living arrangements are for you and all you can do is continue with that for now, but in the meantime it might be a good idea to work on all the other issues including your mental health. You need to be strong enough to cope with whatever the future brings and the difficulties that will probably come along too. Maybe its time to start building up that support network? You've already got good, strong foundations, you just need to build on them so that you're in the best position you can be. Aside from support networks from friends, family and/or neighbours, it's also important to look at what your community offers you and what you want from your community. 

I think you can rest easy and take some reassurance from the fact that if in the future all the things you fear come true, you will receive all the help you need at the time. There's no harm in planning ahead but our needs can change at any time. You may plan for a certain scenario in the future but when it comes to that particular time anything may have happened before then which could completely have changed your circumstances and options. This means it's back to the drawing board. The disappointment can be a bit tough to deal with when you spend so much time planning and then things don't work out in the way you expect or want them to. 

MIND has some excellent information about Housing and it's worth reading to get a sense of what help is going to be available to you. http://www.mind.org.uk/information-support/guides-to-support-and-services/housing/living-independently/#.V2gdPY-cHIU

You can also find care homes, extra care housing, respite, Mental Health hospitals and much more on www.Carehome.co.uk. You can search the whole country and you can even look at what's available in Wales if you do decide that you want to move there.
Another recommendation is www.housingcare.org which looks at retirement housing and care homes. From all of these sources of information you'll see a whole range of different living arrangements, some you might not even have known about before.

I hope that this has been a helpful reply. I'll send you a follow up email and please feel free to get in touch anytime. If, when you're carrying out your research you come across information which would be helpful to other people, please share it with us here on the community and keep us up to date with the progress you make.

Best wishes
Debbie

pip

thankyou Debbie very much, your paragraph below made me think:
'Knowing what sort of help you're legally entitled to can make a big difference. A case like yours will quite possibly cross over multiple areas of law and if this is the case, there will be multi-agency involvement in your future.'
do you mean learn about the care act 2014? find a specialist advocate or legal person, ask for a case manager? ive heard that housing, social care and mental health operate in silos, uncoordinated, so how come multi agency? who does the coordinating, me? who will take my care seriously if it's urgent cases first or only?
Thankyou again. 

pip

Debbie, I'm sorry if I was ungracious in my last reply, I wasn't feeling very well yesterday, sorry. A year ago I contacted independent age charity and they mentioned extra care housing, I've also recently heard of almshouses, I think I will start a thread about them.

pip

Debbie: I'm going to look at carehome.co.uk  and housingcare.org as you said there's a variety of places there to live, you also said knowing legal rights would help, where can I find that simply explained? Thankyou.

Debbie_Scope

Hi Pip,

Sorry you were feeling unwell, I hope you're feeling better now. My post was probably a bit too much to take in so I apologise if I upset you or caused any misunderstanding.

I think that what I was trying to get across is that it's not easy to understand all the legal rights a person may have and it can be hard finding out what those rights and laws are. I can point you to resources, and I could quote lots of different legislation covering various areas of laws, but understanding how one area of law affects another, which legislation has changed (there's been lots of this in the past few years), and how they impact on an individual is all very complex.

If you don't mind I'd like to be able to provide some ongoing information by email so that I can tailor it to your situation.

Best wishes
Debbie

pip

dear Debbie thankyou and for offering further help- do you have my email address? philip

Debbie_Scope

I do and I've just sent you a brief email

pip

dear debbie, I just want to write an update. Mum and I looked at a couple of extra care housing in Llandudno when we were there last month an area we both like, she liked one but didn't put her name down, we are back in her own home, we like over there though it would be a big step for us both, mum is frail and I suffer mental illness which part disables me. 

pip

dear debbie
may I update you here? when in Llandudno last month mum and I saw inside some extra care housing, though mum didn't put her name down and we are back home in Grimsby where we both live in the family home. sometimes I consider whether we'ld be better suited to other accommodation- mum is more frail including her memory and I suffer more with my nerves/ mental illness which leaves me quite weak and vulnerable, though mum seems ok living here in her own home and I'm not sure what type of housing or care setting would be reasonably suitable for us together or how a move would affect us, we haven't advice on this currently.

pip

Debbie_Scope

Hello @Pip,

What were your thoughts about the extra care housing scheme you visited?

You mentioned in earlier posts that you and Mum care for each other. Have you ever had a care needs assessment to see if there is any help the local authority can give you so that you can both remain in the family home?
What would your preference be at this stage, is it to remain where you are or both move into alternative accommodation together?

If Mum is happy staying put but needs more help then it's worth contacting the Adult Social Care department at your local council to see if they can come and carry out an assessment. Age UK may also be able to provide you with some advice and they have a service covering North East Lincolnshire. 
http://www.ageuk.org.uk/northeastlincs/ 

You could also try First Stop who have a helpline you can contact about housing and care issues. They might be able to explore this in more depth with you taking into consideration both yours and Mum's needs.

I hope this helps.

Best wishes
Debbie