Overwhelming guilt: Hi everyone, I'm new to this and... - Mencap

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Overwhelming guilt

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gilliansexton

Hi everyone, I'm new to this and haven't posted anything like this before.

After thirty years of caring for my daughter who has Autism and learning difficulties we have made the heartbreaking decision to find a supported living placement for her. I am feeling overwhelmed with guilt as she is so vulnerable and other members of my family do not agree with the decision I have made. I was wondering what others have experienced during a difficult time like this and how you have reached a place where you can cope with letting them go?

16 Replies

Hi Gillian I feel your pain and I understand your feelings of guilt, I think it’s so unfair of your family to judge you in this way. I know the turmoil we go through to get to this decision. My son is now 28 he went into a residential school young epilepsy at the age of 5. I would never ever had considered doing this with any of my children but my son had such complex needs and his epilepsy was so out of control and there were also other issues health wise. I had to also consider all the others in the household as he was often up for hours in the night and that was affecting everyone it was making me ill through sleep deprivation and my daughter was getting none of my time at all because every minute of every day was taken up caring for my son. So he was placed at the school and he came home Fridays and returned back on a Monday and was home all holidays. I cried for weeks on end when he first went there so I know how you feel Nd the guilt eats you up because our job as a mum is to care for our children not hand them over to others to look after. But he did very well there with a few bumps in our journey. They were able to do lots of activities on site and they were able to get his seizures better controlled and to understand his autism and manage that. So he was happy there and had a more fulfilled life and I was able to actually have time for my daughter Nd the rest of the family. I’m sure once your daughter settles in she’ll be fine among those her own age and when COVID settles hopefully she will get out and about and start having some fun. You will then start to feel more relaxed about it all. I would talk to your family and tell them how hurtful it is that they’re saying these things as you haven’t taken this decision lightly and you’ve had to weigh up everything to come to this decision so ask for their support with this and not to judge unfairly as they don’t walk in your shoes. Take care and be kind to yourself. Happy to discuss further if that would help you.

Hi Jo, thank you so much for your kind response to my post. I feel totally eaten up by the guilt and the turmoil inside is making me ill. It's an impossible place to be. As a mum I feel I'm doing the opposite of what I'm supposed to do which is to love and protect my child (even though she's 30!) but the stress and exhaustion of thirty years of caring and dealing with the challenging behaviour is just too much to cope with. I'm only doing this because I don't want things to get to crisis point and for her then to be placed somewhere in an emergency which is then totally inappropriate for her. I can't see the positive at the moment. It all feels negative. I can't imagine her being happy, I only imagine her suffering because the carers won't do their job properly. She has no speech and is extremely vulnerable so I also worry about abuse. I don't think I'll ever be at peace!! You obviously made the right decision for your family, hopefully it will get easier as time goes on?!

Hi Gillian bless you I can imagine how hard this decision must have been for your family, to be honest my health is still an issue even now due to the constant stress and sleep deprivation and I didn’t have him at home anywhere near as long as you did. I know the guilt you describe but remember you have given her 30 years at home most children would have left home yonks ago. You need to think this is a normal process and she’ll find new friends at the care home in her own way and she’ll also need to get used to her environment and staff. My son doesn't talk either so he is also extremely vulnerable so that fear and anxiety and concern will always be there trust takes time to build, Its also hard because you can’t explain what your doing and why so that adds to the stress and guilt. You will need to take one day at a time and you’ll need to find yourself again as we become one with our special needs child so it will take time for things to settle and for you to move forward and find your identity again. But you’ll be seeing your daughter regularly In sure having her home when your able to it will all work out I’m sure. My only advice is I would highly recommend you get deputyship for her property and finance and health and well-being I’m so glad I did as it helped me a great deal when I run into problems at a home he went to at 25 as he could no longer stay where he was it was not a good home at all and we had to work really hard to find him somewhere else as remove him from there. He’s now in a fabulous care home and I couldn’t be happier, Once they become 18 everything changes so it’s good to have this in place. You can do it yourself but the forms take time but you’ll be fine I’m sure.

Hi there

Your post will resonate with so many of us on this site. Yours is a situation experienced by so many - myself included- who are parents to disabled children. Nobody knows what it’s like to be that parent apart from someone who has been through it and it’s so unfair of people to judge you. I know you will be finding this situation incredibly hard: guilt being the overriding emotion I’m sure. You are not making this transition for your daughter in a time of crisis which is so often the case. I’m sure it can be done as a well managed process with you being able to have lots of input into her care.

My own son is 31 and went into a supported living placement 3 yes ago and is very happy and settled and sees it as his home. I always worry about his vulnerability but I try to recognise that he also needs and wants a degree of independence.

I think as we get older we start to recognise that we will not be around to care for our children forever and ensuring they are safe and settled is vital.it’s also much harder for us to deal with challenging behaviour and the stresses and pressures of living with a child with autism.

Try not to look upon it as letting her go but rather giving her the space to grow. Please try not to let others make you feel guilty / it sounds as if you’re an amazing mum. You’re also deserving of a little space.

Hi Gillian this will undoubtedly be the hardest decision you make but the right decision. It is completely normal for you to feel guilty after caring for her all this time. My son was 41 when he went into supported living so I know exactly how you feel. I didn’t do this earlier as I was worried what other people would think. It is absolutely the right decision as her future needs to be sorted before you get older and it becomes more difficult. It will take time to find the right place for her that you both feel happy about but I’m sure you will both benefit in the long term. My son is happy, there are always issues along the way so it hasn’t been plain sailing but these get worked through. He will never be cared for as well as if he was at home but it’s the next best thing, and we have to remember we won’t always be around. It really is the right road to go down and I wish you luck. I was a single parent for most of my son’s life so had some difficult decisions to make and I’m proud to say they have been the right decisions. Do you have anyone who supports your decision? If not I recommend the Carers Centre who were an invaluable support to me. The support worker allocated to me was just amazing and we still have this lovely friendship after she retired meeting for lunch etc and I can still ring her if I need any advice, I feel very lucky. Take care and good luck, I’m sure in a few years time you’ll be asking yourself why you didn’t go down this road earlier.😊🌈

Hi, thank you so much for your kind and understanding reply to my post. How did you cope when you had to make difficult decisions? What helped you? I just feel in turmoil over it all, it's an impossible place to be. I can't imagine her ever being happy, I can only imagine negative things at the moment like the carers not looking after her properly etc. I'm exhausted and stressed after years of caring. Do you ever feel any peace? I've not heard of the Carers Centre is that something which is just local to where you live?

Completely understand how you are feeling

I have been the pretty much sole carer for my only son he’s 21 this year he is my absolute world. I am emotional every time I think about assisted living however the way I look at it is imagine the day you pass away he’s all of a sudden without you, in your home unable to cope etc etc SS will then choose what happens and where he goes which will be the first available place probably

I would much rather I could choose his place with him that suits him and see him settled and support him settling before I leave this world (I’m only 47 but we never know what’s round the corner ) I’m not considering it yet for my son but maybe by 30 is a good age to be doing it

Go with what your gut tells you your heart will follow hopefully it’ll be one of the biggest decisions we doting parents face

Xxx

Hi Gillian I like you didn't cope very well it's been a really hard life. I am now 72 and my son is 47. He has severe learning disabilities and needs support in every aspect of his life. He only went into supported living 5 yrs ago although I'd probably been thinking about doing it for about 10 yrs prior to it happening. I'm only able to talk about it now as I know if I'd left it till now, I really would have been struggling to cope even more due to my age and health issues. So your absolutely doing the right thing by starting now as it does take time. I was riddled with guilt had panic attacks and severe anxiety but I can honestly say I don't feel guilty now. I know this was the right thing to do after 41 years of being his sole carer, I needed some greatly deserved me time. My parents were my only support when they were alive, so I believe this made me realise that when I'm not here what would happen to Alan. I couldn't bear the fact he might just be placed anywhere so far better sort it now when I can still be involved.I'm from Newcastle in the North East and we have a Carers Centre in town and I'm sure most towns have one. Google it and find your nearest, unless you live rural which might be more difficult. I found it difficult asking for any kind of help but I initially went looking for some help in finding out what we could spend Alan's personal budget on as we were part of the pilot scheme at the time. This is probably going back 20 years haha, we've come a long way since then. Anyway she gave me the confidence to spend the money on what would make our life a little easier which I was so grateful for. Any organisation is only as good as their staff and I could go to her with anything and she would sort it, they are there to support carers who care for anyone, not just the learning disabled. Its worth giving it a try, they are run by the local council. It's useful I think to have someone who isn't emotionally attached to the situation as your family are, to give a different perspective on things. It's not easy Gillian by any means, it amazes me where we get the strength from sometimes to carry on but we do. Unless people walk in our shoes they won't understand. Take care good luck and try not to be too hard on yourself.x

Hi please dont feel guilty about this it is a decision only you can make I have a 38yr old son .Im trying to get him into a similar situation .it is a long process and its not something you take lightly it has probably come after a lot of thought and research by yourself. in the long run youll find youve done the right thing as she will flourish I have alot of friends whose children who have gone into assisted living even independant living and their children are completely different individuals after a couple of months .As parents we only want to know our children are going to be looked after when were not here and the members of our families who think its wrong to get them into that position are usually the ones that never help you and have no idea what youre life islike .I personally just want to know Ian is in a position to be happy and able to cope without me .it absolutly kills me to let him go but i know its for him so please dont feel guilty youre doing it to give youre child a n independant life

I can see where you are coming from. The bottom line is there is only so much you can do . Perhaps he could live away for a few nights at first and slowly slowly get used to it as a second home . I remember as a teenager helping at a disability care home in London . Some of the poor children had terrible disabilities and I can understand why parents put them in there but they were only 16-25 . I remember one boy in particular he was quite smart and he had speech problems and may have had other things like epilepsy but I really felt he was out of place . I felt shocked when I met his parents who were a well to do family . I think just to put young people into these residential places is quite cruel . It’s always better to get Carers and support for children and young adults and make them a part of the community and family . Not hide them away . It was the first time in my life I had seen young people with disabilities like this . Very insensitive I felt . I struggle right now but am buying in support and doing away with a meal out etc and saving on other expenses. The biggest loss for these children and young people is the social side of things more needs to be done to create safe spaces , areas in our communities for these children and adults . A lot more they need the most help but are given the least help as they will not be very productive . We need to fight together and create a common community . I am sorry if some of you disagree and did not mean to upset any one . These are my experiences.

Gillian, and everyone who has sent these heartfelt and supportive responses, I can only agree with everything you all say. My son was only 11 when he moved into a residential setting. I was exhausted and my daughter (3years older)) had always taken 2nd place. He has physical and learning disabilities and he had very challenging behaviour. All the comments here show how much we love our children and how guilty we can feel. It is an enormously hard decision that you face and it is unfair of family members not to support you. I have always been closely involved with his life, and once I had a massive battle with the local authority to move him from a very poor home. So being near enough to keep an eye was helpful in that case. My son is now 34 and living in a care home 40 minutes away. I could not be more pleased with the people who care for him. He seems much happier and calmer than ever with very kind and stable staff who understand him well. If you can find somewhere not too distant that you can have confidence in I am sure your guilt will ease. I do hope you can find support for yourself at this difficult time. A good placement can help your daughter grow as an adult. Best wishes to you.

My son is 22. He started at a residential college in 2019. It was the right decision for the whole family. He’s absolutely lovely but incredibly hard work. We had no family life at all. He’s there term time and home in the holidays, so 6 weeks at a time usually. I was a mess for the first few weeks but got used to it very quickly! He settled much better than I thought too and is always happy to go back. No one will care for them like we do. I’ve had to take a step back on a few things! I’m very particular about clothes and washing and ironing and I cringe when I see photos of him in mismatching outfits or worse wearing his pj top instead of a t shirt 😂😂😂 I used to get really upset bu silly things like that but now know it’s his happiness which counts. I love his letters home every week with photos of lovely walks, swimming, going to the pub, gardening etc etc. His life is very full!

He has no speech and very little understanding and is very vulnerable but I definitely don’t worry any more. Next year he’ll leave there so I have to find somewhere. It’s another worry to find a perfect home for him but my friend has just been through it and found a wonderful place for her son. She can log on to their systems and see live updates of what’s happening and even go and stay with him.

It will be hard to start but seeing how happy my son is makes me happy x

Hi Everyone. I’m touched by all the comments as they are so close to my own experience. Once we have reached the decision point of understanding that not doing any future planning is not an option the hardest thing is finding accommodation and care for our vulnerable adults. I live in NW London and If any one can recommend a care home organisation near me I would appreciate it as I am at this stage myself with my son.

I can totally understand the range of emotions you are feeling at this difficult time. We too have decided “enough is enough” - after caring for our son for 26 years...he has complex medical needs, special diet, seizures, ADHD and severe learning difficulties. Before the pandemic we were receiving 3 nights respite a week but for 6 months during first lockdown we had nothing...no day care or overnight respite - it nearly killed us! Our regular respite carers decided, during lockdown, they no longer wanted to provide care for us and we have not been able to find replacement carers. We felt our only option was to look in to full time residential care. We have finally found a supported living bungalow, although it is nearly an hour away from where we live, they have a very good CQC report and we have started the “transition period” - but I have told themIt will have to be a very slow process as my son is very reliant and attached to me. My family and friends have been a great support to us and have said we deserve a bit of a life too “life is for living, not for coping” I just pray that he settles well and when we get to spend time with him, it will be quality time without all the stress and caring side. I wish you all the very best, hopefully, now that restrictions are being eased, you will be able to visit lots of places to get a feel for what’s available; although we have found many places are full or were unable to meet our son’s care needs. ❤️

Hi Gill Good on you , it’s heartbreaking I know, we are in the process of doing just that ! It’s killing me but I know my daughter needs a life and a future without us as I amin poor health and it would be so bad for her as I could not give her what she needs !

She is extremely vulnerable and is autistic and has very little vocabulary and is heartbreaking!

I’m with you all the way ! Your family should’ve more supportive as it’s you having to do the work

I think you done your best 😀

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