[phpBB Debug] PHP Warning: in file [ROOT]/phpbb/session.php on line 585: sizeof(): Parameter must be an array or an object that implements Countable
[phpBB Debug] PHP Warning: in file [ROOT]/phpbb/session.php on line 641: sizeof(): Parameter must be an array or an object that implements Countable
Adult daughter in residential total heartbreak - Carers UK Forum

Adult daughter in residential total heartbreak

For issues specific to caring for someone with learning disabilities
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 :kiss:
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
Tara _1909 wrote:
Tue Sep 10, 2019 10:34 pm
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?
bowlingbun wrote:
Mon Sep 30, 2019 8:01 am
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.
Probably one of the best paragraph's I have read here, signature worthy even (if its alright with you)

It resonates so much because I have lived most of my life as a sibling carer as I have previously mentioned for a person with high/complex needs including LD (as well as other caree's along the way), I was a child myself when I started taking things on, they've since outlived a parent and remaining is in residential..

You have to plan because no matter how good your life and health might be you don't know what is around the corner

Its not negativity it is just being realistic in the face of what you are dealing with, and these are very special people that really do depend on us, in the most severe way to get these things right

Get stuff in place/on paper so you can treasure today and not worry about tomorrow
Tara _1909 wrote:
Sun Sep 08, 2019 6:18 pm
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
How are you today?
bowlingbun wrote:
Mon Sep 30, 2019 8:01 am
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?
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