I am very aware that I won’t be around forever and whilst I have a trust in place to help financially with my lovely son I am so worried about everything else .
Unfortunately it is just him and me but who steps in the help make caring arrangements or review if they are working and that he is happy ??? It’s all so confusing and just keeps me awake at night … Or is it just a social worker that manages this ? Ideally I would like to appoint someone (have no idea if thes people exist !!!) who can look after his affairs ….
I suppose that’s my question is there anyone in this situation that can be appointed if you have no family members or friends that can step in ? To manage both financial and care arrangements ?…
Sorry for rather rambling post xxx
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suzi9381
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suzi9381 , I'm in the exact same position and the unknown overwhelms me. I've managed to get a good friend to be executors/trustees, and can only trust that they will be able to help with adult social services etc as required. This will be in my Letter of Wishes.
As the mother of an adult son with ASD and learning disability I can completely relate to your fears.
I think it’s vital to start the transition to supported living in whatever shape or form suits your son best, whilst you are still around to have an overview and influence on this process. If this transition is done gradually with your input and involvement hopefully it will be far less stressful for your son than having it done in an emergency or crisis situation when you are no longer around.
I completely understand that these are very difficult conversations to have particularly when there are no other family members to support you.
whilst I understand this view, to 'set your son up' for the future, every single person I know that has done this, the arrangement has broken down at some point. It is false to assume you can make an arrangement and it will still be in place and working for their lifetime.
Every case is different. I can only speak from my own experiences as our son is very happily settled in supported accommodation with wonderful staff and fellow residents. We have been fortunate but have worked hard to make this happen whilst we are still fit and able.
I'm really glad you have a good set up Lindy. Long may it last. I'm sure it works for some. But of all the people I know in this situation, things have broken down at some point. People have settled their child in supported accommodation, only for at some point down the line things change, the staff changes, the company changes, the funding changes, the system changes and things fall apart. Then the child comes home and the process starts again.
Perhaps it is still the right way to go. But you cannot settle a person into a system in, say, their 30s and hope all will be the same for the rest of their life
And I suppose that is where I am coming from. Having my son settled is one thing but if there is no family or trusted friend about to lol out for him is there anywhere you can turn to in advance that provides a service to check the basics (I.e that his care needs are being met and that he is happy ?).
From my research so far I can appoint Mencap trust services as a trustee which will ensure his finances are managed but I am stuck when it comes to someone who will ‘have his back’ when it comes to looking at whether he is being cared for properly etc. Does any advocacy type service cover such things ?
there are advocates services - professional and voluntary - obviously the professional ones cost money. this is the area I am looking into. I am putting it into my letter of wishes for the trust. I need to do more research though.
I don't know the answer but I think this is something that Mencap could help with. Tel or email will be on their website. I think I would email them as they tend to be busy, and I find it easier to write stuff down. A lot of us are in this situation.
As a sister and welfare guardian of 2 learning disabled adults, I would very definitely encourage that you consider starting the process to find the type of home and support that you think is right for your son whilst you still can. Both of my siblings were settled in their homes with their care packages in place several years before our mother died. This was tough on Mum as she was, at 93 years old, still looking after my brother who lived at home with her. We had some tough conversations that not allowing my brother to have his own home with staff that he was familiar with before she died would make it harder for him as he would lose his Mum and home at the same time. I think that there was an element that Mum didn't want to be on her own. In my brother's case, the process of getting assessments, finding suitable accomodation, fighting for appropriate care budgets took about 4 years. My sister needed more care and had been in a small care home for LD adults for 20+ years before Mum died.
Hi there is an organisation called supporting together coop which is setting up individual service funds for families to help manage finances and care packages. I would get in touch with them to see what help they might be able to offer.
I'm in the same position, it's just me and my son, everyone else that loves him is older than me. It's the biggest thing I worry about. What I do know, having lost my husband in his 40s, that we cannot assume life will pan out in a set order.
So far I have made a will that will set up a trust. I have put in my instructions that I want an advocator to check in on his welfare and make sure he is living the life he wants to , as much as he can. Not sure if this will work, but best I can think of.
I've talked to my son about how much easier it would be for him if he was settled elsewhere before I fall off my perch, but we both know this would make him considerably miserable. He says he would rather live happily for now, and worry about later later. Having gone through the grief of losing his Dad you can see why he thinks this. I have expressed there might come a time when I can't cope anymore, he accepts this ( but jokes about us moving into an old peoples home together)
tbh I think it will be a tragedy for him, when I am gone. But he feels it would be a tragedy if I pushed him out now. We both, having lost someone dear, have a sense of enjoying today and not putting all our efforts into a tomorrow that might not come. Still has to have some planning though.
My best plans, atm, are to live a bit longer, and prepare him to be as independent as possible, and maybe, with that growing independence, he will change his mind. In the meantime he will become better equipped to manage.
hi, I’m not sure if there’s no family to care for your son. My mum was the same with my brother and used to worry daily about it even through I told her I would care for him. In the end I had to sit her down and tell her he would be fine with me I think after this mum was at peace with it (well at least a bit)so if I was you I would sit down with the socal worker or whoever helps you as soon as possible to get a solution that your both happy with and then you won’t be as scared. I’m 100% sure you are not the only mother in this position. But don’t stop until you’re happy with the outcome.
Hi suzi9381,I'm sorry I cannot give you any help or advice but I am in almost the same position (nothing in trust though).
I just wanted to thank you vert much for raising this as virtually everything I read about making arrangements for my dear daughter when I am no longer here tells you to involve friends and family which I no longer have.
I do have both POA for my daughter but they're obviously completely redundant when I'm no longer here. I would imagine, if funds were unlimited, it would be possible to pay for a solicitor/firm to act in the role of guardian at some level (or is that too Charles Dicken's of me...); that may be something the trust could fund, I don't know, just thinking out loud really.
Most of all I wanted to reach out to you and say I understand how hard it is, all the thoughts, all the fears, all the tears and sleepless nights and send you my heartfelt love and a big virtual hug 🤗
I am sure you will get some really good advice from the wonderfully kind people here and I hope that brings you a little peace of mind.
Sue love,My terminally ill 88 year old mam who was the sole carer of my beautiful learning disabled sister asked me to write on her behalf to say you both are in her thoughts and prayers as she goes to sleep at night and wakes up in the morning thinking the same thing and has done for 50 odd years(I am her son who has come back home to Liverpool to help look after them both-and it has been the biggest privilege of my life that I have been able to do it🙏)-She says you are in the best place to get proper advice from a MENCAP advisor as we have done and they will help, but also the best place because everyone here is/has been in the same situation and are all sending their love and support to you and your lad.God bless.
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