Hello all
I write today with a heavy heart.
My daughter is in residential care after bringing her up singlehanded for 21 years.
My daughter has challlenging behaviour amd Down syndrome and it was a joint decision by myself and social services.
Now 2 and half weeks on the guilt and emptyness is immense.
Made worse by the fact she doesn’t want to call me regularly or come home.
( 2 home visits so far)
I know she needs to adjust and she prob doesn’t understand as her understanding is of a 5 year old tops but it is so painful.
My heart aches.
I’d really love like any replies with advice or similar stories. Thank you in advance x
Hi Tara,
this is a massive life change for both of you and you will both need time to adjust. Your life has no doubt revolved around your daughter all this time and now suddenly it doesn’t have too. Parents of adult children without special needs, experience “empty nest syndrome,” but for those of us who have special children there is a lot more involved. I can’t imagine S ever choosing to leave home, but he will have to at some point and I’ll be experiencing what you are now.
Have you visited her in the home, how did she seem?
Do you think she doesn’t want to come home because she will be missing an activity or outing that the home have organised or because she is upset with you?
She might prefer to skype you or for you to visit her at first or for you could arrange for the staff to take her out and “happen” to meet you somewhere.
Melly1
Thank you for your reply.
I think she doesn’t understand enough to make a decision.
Yes it’s also definitely affected by the activities in the care home.
You were spot on there.
It’s just so tough.
I unexpectedly spent some time with her today. So sad to see her go back there.
Not sure if I’m gonna be able to change my mind even because they go by what she says.
Thank you again x 
Hi Tara,
I’m sure she will come home to visit, once the novelty wears of and when she understands that she be staying permanently at the home.
How does she communicate?
I think you need to be canny, find out from staff the activities she least likes, so you have visits when she isn’t having a tough choice.
I think you need to look at this all differently, think how terrible you’d feel if she hated the home and was constantly distressed and crying to come home. She has settled and is enjoying herself because of you. You’ve done a good job! You have contributed to making her confident enough to begin a new chapter in her life.
Now you need to begin a new chapter in your life too! I’m not underestimating how difficult this will be.
Try and start a list of all the things you couldn’t do when she lived with you - and start doing them, one by one!
Melly1
Yes you’re right snd thank you so much for advice and reply x take care
How have things been lately?
Hi Tara, a belated welcome to the forum from me.
My son is now 40, he moved into residential care when he was 16, at the insistence of my GP. I’d become so run down that I needed 14 courses of antibiotics in 12 months.
I nearly had a breakdown when he went into care, so I can identify totally with how you are feeling at the moment. I’d run around M for so many years that I didn’t know how to be still, relax, and live a normal life.
You must keep telling yourself “I am doing the right thing” because the sad reality is that one day, we will die, and our children need to be safe and be well cared for without us one day. Pretending we will live forever is not an option for someone with a child with LD.
For the moment, I would suggest that you visit her regularly, maybe take her out for the day every Sunday, but don’t have her home for a while, so that she can adjust. (My son was used to going caravanning every summer weekend, so adjusted very quickly to being home sometimes, then somewhere different).
Make friends with the staff at the home, she should have a “key worker”, then you can share all your knowledge. Is her room a “home from home”? Is the bed comfortable, does she have a duvet and pillow like the ones at home, a TV etc. (Make sure everything is labelled).
Who is managing your daughter’s benefits now?
If she comes home for a weekend, did you know that contrary to popular understanding, you ARE still entitled to Carers Allowance for periods at home under some circumstances.
You are definitely entitled to DLA/PIP for periods at home. You need to apply for a “boarder payments” form.
Who is managing her mobility component?
.
How are you today?
Hi and thanks for your lovely reply. Sorry I’ve not been around.
Jess still hasn’t been back home but I visit her regularly 2 x wk and she’s happy for me to visit.
As she’s not been home I have had to inform benefits and this is being sorted.
I miss her dreadfully and find it so very difficult still.
I’m trying to look in the long term as I know it won’t be forever like this.
Christmas is gonna be tough. X
Hope all ok with you, hows things?
I’ll check post later x much love
It’s really early days yet, for both of you.
Maybe she could visit briefly at Christmas? I’d suggest that you check with the home what they do.
Some places encourage residents to see family, but of course as the years pass many have lost both parents. One place my son went to closed down completely for the holiday.
Well the home and sw will encourage jess to come home for xmas but she’s one stubborn lass. ( Down syndrome #1 trait)
So I’ll see how it pans out.
Had a lovely visit with lotsa hugs today but she’s still not ready to visit home!
X
Tara,
Glad you had a good visit today. If she doesn’t want to visit home on Christmas Day then maybe she will on Boxing Day.
Melly1
Good luck!
Tara, it may not feel like it, but you are very lucky that your daughter has settled so quickly and doesn’t want to come home all the time. I’m rather envious!
Maybe you could do something special for the home, to involve all the residents? Even if it’s just a special afternoon tea for everyone, then you can get to know her new friends better.
Are you finding it difficult to plan something for your own future? When did you last have a proper holiday? I go to a wonderful “singles only” hotel in Crete. It’s definitely not a dating hotel, but somewhere you can feel safe, relax, swim, chill by the pool all day, walk, do trips out every day if you want. Best of all you can have delicious Cretan food, and a drink and proper conversation with people in a similar position. I always say it was where I learned to live and laugh again after the death of my husband.
Maybe next year think about how you can enjoy your freedom?
I’ve applied for a few jobs and doing a few work training days in dec.
my bf and me have been away for odd weekend and ive had so much quality time with my other daughter.
Just miss the little space where jess should be.
X
Ps I always take in chocs for jess to share with her friends and it seems she’s happy. Im grateful for that.
Hope you managed a nice Christmas.
My daughter chose to go to residential college when she was just 16 so the youngest there. TBH it was a waste of two years in my opinion. She cried and kept ringing constantly every evening and there was no rest for us as we worried constantly so at least your daughter seems settled.
When she got a bit more settled and if we rang her she would say “I’m not talking, I’m playing pool.” But you bet your life if we went out for a meal or something we would be constantly interrupted by her ringing.
It’s really difficult when they leave the nest. Most of the parents at her college felt the same as we did. One girl was so bad that she would literally be screaming and holding on to the wing mirrors of her parents car as they tried to drive away.