Are there support groups for parent/carers of adults with LD living in residential care?
My son lives about one and half hours travelling time from me and although I see him regularly and he comes home roughly every 3 weeks. Since I have retired I am struggling to deal with the guilt I feel for not having him live with me now I have more time. Does anyone else share my feeling?
Get over the guilt! Honestly, and seriously, if your son is in a good placement and well looked after what is there to feel guilty about? My daughter is in supported living - OK quite locally - but she's happy, well looked after and leading a nice life - I can't feel guilty about this. She's always going to need a high level of support and I won't always be here so it's for her benefit - and I admit for mine too - that she doesn't live with me. Carers guilt is a real thing though and not so easy to lose - but work it all out rationally and hopefully your heart will follow.
Plenty of support groups on facebook, I myself am the Mother of a send woman, badly letdown by local Council.!
Thank you, I'll try and find some. And yes, I have had numerous problems with the funding authority for his care. At least I do not have to communicate with them as before.
my daughter moved to supported living in April last year and is an hour away from us. I felt guilty at first and judged by family members and very stressed. I knew it was the right thing for her and us. I’d been poorly and not getting any younger so wanted to prepare her for the future.
It’s worked really well. She’s very happy and settled. There has been a few teething issues but overall good. To be honest I’m amazed at how well this has worked!
Hi Beansprout1, I am go glad it is working out for you and your daughter. On the whole my son is happy and settled though it is difficult to get the 1-1 hours increased so he can go out/do things he likes. He cannot access activities in the local area as he is residential care so the "went for a Walk" whenever I ask what he's been up to is not really enough. Took me ages to get a bus pass so the staff would be encouraged to go out and about for a bus ride which he likes doing but the 1-1 hours do not allow for much outside the house. I'll keeping asking for an increase in hours when I can. The staff are great, home cooked meals and really good with his medical issues . So as SSSLondon says.. "Get over the guilt," which I will.
Just to say we would have liked more 1:1 hours. We use our daughters PIP to pay for a day centre x3 days per week. The day centre is great, she’s out the house socialising with others and doing activities which she enjoys. This makes her 1:1 hours stretch further on the other days so is working well at the moment. The day centre is also another way for me to keep an eye on things.
We still bring our daughter home for a weekend every month. She enjoys her time with us but is always happy to go back.
That is just what I need to get going for my son. I was going to explore using an agency worker for 1-1 time but not sure how easy that would be for the home to agree to.
He has a review with the LD team in the care home area soon and I will explore with them.
The funding authority refused to increase hours and the care home see it as a moan when I mention him doing/going out more.
I agree it is a good way for him to meet people outside. I try to limit his screen time too which the care home doesn't like me doing as I know he will be more difficult to motivate him to do other activities and they will say he doesn't want to go to XY or Z. I have had.."he's an adult" excuse when they don't want to or can't staff an activity.
I can see that really working for him, thankyou.
I totally understand my son is just 48 and only moved into supported living last May. He has settled in better than I thought , a few issues with another tenant. He comes home every other weekend at the moment. I appreciate having more time to myself etc but still miss him. Yes I know it has to happen for his benefit as well as mine and my husband . It was mainly as we are getting older and wanted him settled before anything happens to us. But I still feel guilty sometimes and I don’t think that will ever go away. Having said that it doesn’t stop me feeling relieved he seems happy . Unless you have similar experience no one can appreciate how you feel. We definitely shouldn’t feel guilty but that is not always easy. I’m sure you understand all of that and I hope you don’t linger on the guilty feelings too much and try and focus on the positives.
I agree, my son has been in residential for a while now and the guilt never really goes away. I am able to keep things in perspective most of the time. Thank you for your kind words and so good to hear that your son is happy and settled. My son is very happy to come home with me when I pick him up and thankfully happy to return to his house , think that is all I can wish for which is great.
That’s just the same as us , it’s such a relief and I hope the worry is he ok etc will get easier. It’s hard letting go as well. We must keep positive .😊
Hello GardenFern4
My adult brother who has severe LD and lacks capacity lives in a residential care home. He lived at home up until he was 40 but moved into his respite care placement when my mum became too ill to care for him.
Mum passed and dad had him visit weekly until Covid hit then we lost dad to cancer. My brother doesn't understand and still asks to see daddy.
I took over the responsibilities dad had for him and he stays with us 4 to 6 nights a month pretty much. Unfortunately he has been displaying anxiety and poor sleep since 3rd Jan following a stay at our sisters who doesn't see him much. He stayed with us for 2 weeks recently and despite him being ill he was fine. Since returning to the home he's back to sleep and behaviour problems. I understand you feeling guilty.
The real question for you is, is your son happy? Is he doing new and different things and enjoying new experiences? If he is then you can settle and relax because you can't beat happiness. You see him regularly and it is a relatively new experience for you not to have him like I g with you but that's understandable because you're adjusting to a new normal.
You're now able to give yourself time so when you spend time with him you are able to enjoy quality time rather than rushed and exhausted time. Never forget that quantity is great but quality is better.
You may find you have a bit more energy than you used to have and that's great and nothing to feel guilty about.
At times when you're feeling particularly guilty perhaps sit down and write a pros and cons list and remind yourself why you placed him in residential care.
I would love to have my brother live with us but I'm exhausted when he stays and I know it's not in the best interests of either of us, though it's particularly difficult when he's in a behavioural phase as he is now.
I don't know of any support groups I'm afraid. I just post here when I have any queries or questions.
Big hugs 🫂 to you as it's not an easy path.
Take care.
Thankyou, that is a great idea to write a pro and con list. I am able to discuss my feelings with his sisters and they fully support my decision, perhaps in time I will be able to move him nearer to one of them so they can continue the visits if/when I can't. Thank you for the hug and understanding
You're welcome 😊 It's great you have the support of his sisters too. It's just that little voice in your head throwing guilt your way that needs to be overcome.
Wishing you all the best.
🙂
Hi Garden Fern4 .My son is 40 and lives with me , I know I have to look for a place for him as I am getting older . Guilt feelings are so real and I worry every day about his future so I understand how you feel and no matter how many times I am told not to feel guilty It hits me at times ..
I find carers support groups which I have signed upto deal mainly with careing for the elderly , which I have done dealing with dementia and cancer and also my husband who.passed away 6 yrs ago ? but for LD adult carers there is little support .
I hope you find some good support for yourself and your son has a great future .
It would be interesting to know if you do find a support group you feel is for you . Good luck
Hi Tracy same here, my son is nearly 37 and lives with me, I want him to be settled somewhere close by but don't know how to do it, it's good to hear from someone who is in the same situation, thanks for posting
Hi Tracidu, Will a carers assessment with SS help them to support you in finding a suitable home for your son?
I am going to join a local carers group, although I feel a fraud as he doesn't live with me, visits for 3/4 nights every 3 week but, I found out that I am still classified as a carer as I handle his benefits, and attend his many medical appointments etc.
Hoping you are able to sort something out, my son is surrounded by kind, loving people and you will know when the placement is right. Trust your instincts.
Thankyou for your reply , yes I have had my sons review and my usual carers assessment last month . My sons future was talked about and I have to get intouch with SS for a list of accommodation for him as she was a banked SW and didnt live in our county so didnt know much . I never have the same SW ...... I have visited a few places over the last 20 yrs years and I wasnt very happy with what I saw in my area but I will ill try again soon . .. Im pleased your son has good care and is happy , we will always be carers even if they dont live with us . Best wishes to you both
Hi What you are feeling is what we as parents experience when our beloved son/daughter goes into care or supported living. We can obtain some solace knowing that ,when it is a good placement and your family member is relatively happy then that is the best you can do for them.
It is an uphill struggle at times , you will get good days and bad ,just take one step at a time and understand that we all know what you are going through, as we are all going through it too. Keep strong for your family .
Hi notmyfault2 I totally agree. sometimes a struggle but well worth it as we parents get older and his siblings have their own families etc. So important to keep good communications with the home. I always ask friends and family to send him Christmas cards, Birthday cards to remind staff that he is a cherished member of a wider family even though they only see me picking him up. I am upping my game to make sure i keep him connected with his wider family and a few school friends to keep his circle of support going.
Thank you for your encouraging, understanding words
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