Residential care : Hi everyone, I’ve just discovered... - Mencap

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Residential care

XEX416S profile image
17 Replies

Hi everyone, I’ve just discovered this group and wonder if anyone could offer some advice/support. My son is almost 26 and we are now looking in to full time residential care for him. He had a number of complex health needs, seizures, cerebral palsy, learning difficulties and ADHD...challenging behaviour...Covid has put an immense strain on us, as a family, just don’t feel like I can continue with my caring role. However, I’m really struggling to let him go too...he is very “attached” to me - feelings of guilt, resentment, anxiety and upset - would love to hear from anyone who has been through a similar experience and how it went. Thanks in advance, StephC

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XEX416S profile image
XEX416S
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17 Replies
Jofisher profile image
Jofisher

Hi Steph my son 28 he went into care at the age of 5 he used to come home weekends and holidays then I became ill after an injury and was unable to physically do anything so he was then in care 24/7 so then could only come home for the day. I absolutely understand all about the emotions your experiencing and the guilt will always always be the biggest. But I think it’s the right thing to do most children grow up go to work or uni leave home and start their own lives. So this albeit it different is your child doing the same just differently think of it that way. Check out all the care home go and look at them and get a really good feel for them check their cqc reports to make sure their good that gives you some idea but doesn’t always tell you everything. Ask to speak to other parents who have loved ones in the home once you find one you like. Your loved one has to be happy there so make sure you do lots of visits at different times ask to s and tons of questions. They can all say wonderful flowery things a d show you lovely glossy brochures don’t be blinded by it. Have your Mum gut instinct radar working you know what I mean. The last home my son was in was horrendous I knew before he even got there and tried to stop it but there wasn’t anywhere else and there wasn’t anything I could do. It took two horrendous years to get him out. The place he’s in now is amazing and the one before was excellent so it’s so important to get it right and you are in a good position to do that so good luck and my social worker helped me have you got someone helping you ?.

XEX416S profile image
XEX416S in reply to Jofisher

Thank you so much for your reply. I am just home from visiting a nice bungalow (supported living)...had a really long chat with the manager, asked lots of questions...unfortunately, there are very few “homes” that have vacancies and those that do either say they can’t meet his needs or they are too far away - this one we visited today was only an hour away so I could still see him and take him out regularly. It only accommodates 3 residents which is nice, 2-3 staff on at all times (1 waking staff overnight), seemed very person centred...thank you and best wishes

Jofisher profile image
Jofisher in reply to XEX416S

Check cqc reports always I wish you all the best in your search an hours not bad my sons an hour and 10 minutes it’s doable.

XEX416S profile image
XEX416S in reply to Jofisher

Yes, this one has a “Good” CQC report on all aspects 😀

BenjiB profile image
BenjiB

My son started at residential college in September 2019. He’s home for the college holidays. It’s been the perfect stepping stone for him and I know the next stage will be much easier on us all. The place you’ve found sounds great. I’m looking for a single person occupancy placement or maybe with one other.

sl20 profile image
sl20

Hi StephMy son is also 26 and just moved into supported living in Dec. I also worried are we doing the right thing as he was happy at home. But I have always worried about what happens when we are not around any more to help him and would he just be put somewhere unsuitable. The pandemic didn’t help as suddenly all his activities stopped and I basically had to reduce my work by 75% to look after him! We were lucky as a new supported living house opened and through fighting really hard managed to get a place. He has settled in better than expected and I really think it is good for him to have other people to mix with and not just us parents. The covid restrictions have made things difficult (more for me than him I think) but at least there is an end in sight. Good luck with your search i hope you find a suitable home.

XEX416S profile image
XEX416S in reply to sl20

Thank you so much for your reply. It is good to hear from people who have gone through the experience and have a positive result. I am hoping he will settle and then the time we get to spend with him will be quality time without all the stresses of being his carer. Best wishes to you and your family.

Bergersil400 profile image
Bergersil400

Hi Steph my daughter is 26 next month, and at present at home with myself, husband and 2 sons. She has profound learning disabilities which requires close supervision and all personal care 24/7. Despite several conversations with the continuing health team over the last 2 years regarding moving to full time care, we have been putting it off. During the pandemic for the first few months we lost all day care, social respite and all our short breaks. As we were both working in education from home, we were able to do without the care in the short term, and that was fine. Her day care was reinstated in September, but all other services are still suspended. It made us realise that we need to bring forward making plans for her future. With the help of one of her key workers, and a nurse from the continuing health team we think we have found somewhere for her.

We originally thought residential care would be best as we wanted a community facility for her. What we have found is a new supported living complex 20 minutes drive from home. There are 17 individual flats which are an extension to another 16 flats built four years ago, further down the road.

Due to pandemic restrictions they are not now ready for moving into until September. which will give us 6 months to prepare and get ready for the transition. Without the pandemic they would have been operational from January.

It is early days, having just met the management team at Easter, spending an hour with them and looking at the still unfinished flats .

They come across as person centred, and loving their jobs. They have met our requests - asking for a bath rather than wet room, and a ground floor flat. It seems we will still be able to keep some of the day care in our local setting.

As I said it's early days , but we have a good feeling about it. Being new it will be a blank canvas. The 6 months will give us time to get everything she needs for her new home, as well as having a long period to ensure the assessment and transition is thorough.

Like you we are apprehensive, but we would rather we choose something for her whilst we can, rather than giving responsibility to our 2 sons. We may still find after assessment the new flats won't meet her needs, but the beauty is we can always stop the process if that is the case.

Good luck take your time.

XEX416S profile image
XEX416S in reply to Bergersil400

Thank you for taking the time to reply. I wish you all the very best for the future. It is so nice to hear from people who know what it’s like to be parents to a “special” person - friends are good listeners but ultimately have no emotional ties.

Evoke13xt profile image
Evoke13xt in reply to Bergersil400

Hi - just a basic question but how did you find out about possible places?

XEX416S profile image
XEX416S in reply to Evoke13xt

The Social Worker has a list of approved providers...she contacted them all...very few have spaces around here...didn’t want him going too far away...but this one came up, we viewed it and had a long chat with the manager...going to be a slow transition for him before he goes permanently...start with a tea visit and then maybe 1 or 2 nights...The problem is, these “homes” are forever homes and so vacancies do not arise very often - unfortunately, usually only when a resident passes away - one of the places I would’ve liked him to live, hasn’t had a vacancy for 13 years!

Evoke13xt profile image
Evoke13xt in reply to XEX416S

Sadly we only have a (lovely) SW assistant and have been told there is ‘no list’; and as a sw she has no access to one! Apparently a panel find and decide then offer us 3!! The panel have never met our adult son.... We are Buckinghamshire - right on junction with Berks/ Oxfd/ Maidnh & Windsor.

SpeedyH profile image
SpeedyH

I am in a similar position. We looked at our son’s needs and what needs to be done to meet them, and we looked at where he would prefer to live and how he would choose to spend his days. We felt very strongly that just because he is disabled, he shouldn’t have to leave the home he loves when he wouldn’t choose to. We were also very aware of the future and that we will not always be around to care for our son, and we wanted to move towards his independence but also acknowledged that it would take time to do this in a way that was not damaging to him. We decided that the first step would be to increase the amount of support we have in the home (from none!) and to increase the amount of day activities for our son (this is through enablers as his behaviour means he cannot access day services). We are also introducing a number of nights respite away from home each week. The plan is that as our son gets used to this, we increase the amount of external support, learning about what works and what doesn’t along the way. Over time, it might become apparent that our son’s preference would be to continue living here after we are dead, or it might be that he is happy being supported away from home like in independent living. My advice would be not to hurry unless you are in an absolute emergency situation and to try and find a solution that fits around your son rather than try to shape him to fit in a particular setting. Good luck.

XEX416S profile image
XEX416S in reply to SpeedyH

Thanks so much for your reply. Our son has always had some sort of outside respite so is used to being away from the family home but for no more than 3 nights at a time. We will definitely insist that the transition is done slowly, over several weeks or months. I have a friend in a similar situation who placed her son in residential care just over a year ago and it has been a very positive move for them all - she said she wished she had done it sooner and it’s not until you reach breaking point, that you realise how much caring for someone takes out of you and your family. Best wishes to you and your family.

SpeedyH profile image
SpeedyH in reply to XEX416S

It is so good that your son is used to being away from home for respite and activities as that gives you so many more options for the future. You are further along that journey than we are. My son never ceases to amaze me when I think I know him so well, and I bet yours is the same so that bodes well for a positive transition too! Hope you find somewhere nice very soon. 🏠🏰🏢

Swimbikerun1 profile image
Swimbikerun1

Very interested in this post. My son is 34 and we have been looking for about 6 years for supported living for him but haven't found anything suitable at all. We have been told that he won't be funded out of area but I know we're not going to find anything where we live. It sounds as though some of you may have gone out of your Borough....if so did you have to fight to be able to do so? Our son has been brought up in a quite rural area and whilst we accept he won't be able to live there and there will have to be comoromises we know he will hate the town accommodation he has been offered so far. I'm so worried that he'll end up somewhere just not suitable and it's taking over my life permanently Googling to find somewhere. There seems to be great supported living in some other areas...but will I be able to send him there when SS are adamant they won't fund it. So sorry to hijack your post Steph....I think its the hardest thing as parents of a child with special needs to let go....I dread the day my son goes but I know that he needs it and is ready. Good luck to you x

XEX416S profile image
XEX416S in reply to Swimbikerun1

I’m so sorry you don’t seem to be getting the support you need. We have had several “offers” from SS of placements which we felt were just too far away from “home” - although they were still in our county (Norfolk). Unfortunately, due to Covid, visiting and viewing potential placements has been impossible and although there are very few “vacancies” available anyway, this has made life even harder as ideally we would have liked to look at lots of different settings and then choose which was more suitable - this hasn’t been possible and now I’m feeling pressured into making a decision based on one choice but I know spaces do not become available very often and this bungalow we have found seems lovely. I guess, no where will be as good as the family home, but there comes a time when we have to accept our “children” need to move on - as with all children - but it is a very hard, emotional decision to make.I would suggest you start to put more pressure on your SW - I was contacting mine weekly via email and telephone - unfortunately, if you seem to be coping they will leave you to get on with it - tell them you are struggling and need something sorted before your family falls apart.

I wish you all of the luck x

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