Getting the balance right?

[1994EJED]

Our son has lived in supported living for almost three years now. It's a great place, about ten minutes drive from us, consistent supportive staff 24/7, shares with people he gets on with, has a good social life and 3 vol jobs. All those boxes ticked. He's very independent with this support behind him, but he will still ring us, sometimes up to twenty times a day (between my husband and I, and his sister) and wants to see us every day, sometimes more. We feel guilty if we say "no", even though we see each other really no less than every other day. On the face of it, everything is in place for his independent life, but there's obviously something missing. The other parents seem to stick to a structure where they see their sons on fixed days - we tried that but we found he was also wanting to see us on the days in between, so it was every single day then. I feel so bad saying that. How do others manage the balance?

[49Twister]

Hi, my situation sounds quite similar my son has also been in supported living for nearly 4years sharing with one other male with 24/7 support and living about 10 mins from me. He is 45 years old I am 70 and I been a single parent since he was about 5 years old, so he lived all his life with me, with me supporting him in everything until he moved out. I’m guessing your son might be younger and the separation process is so much harder for them to understand. Until fairly recently like your son he was constantly on the phone to just me asking me to organise or sort a problem as he was so used to me sorting everything for him. It is getting better the phone calls are getting less and he is getting more confident in asking staff I think it just takes a long time. Does your son come home at times my son comes home every other w/end., so he knows he will see me at some point. I always felt guilty and found it so hard to say no, but as I am older myself I have to say no more than I would like to. I would literally drop everything to attend to his needs but you realise it’s not helping his situation so you need to say you have plans and can’t come. It will be tough but hopefully will get better. Good luck

[1994EJED in reply to 49Twister]

Thanks 49Twister, it's always good to read others experiences. It's put it into perspective more for me, in that he doesn't ring as much as he did. Though it's still a lot, it's not crisis-calls, because like your son, he's better now at asking the staff for help than defaulting to us. It also made me realise that, like you say, they have had a lifetime of us being there at all times for everything, and now we have to be honest and say "we're doing something else" or whatever. Thanks, I see light at the end of the tunnel!

[Pigginbird]

I, too, have similar problems. My son is 53, has lived in supported living in one form or another for about 30 years. He now lives in a house with 6 other residents with similar problems and although he receives a high level of care, it is not 24/7. He has tried voluntary work on a number of occasions, but is unable to stick at it. He spends most of his time watching the TV, although his carer does manage to get him out to the gym at least a couple of times a week. My husband and I live a good hour and a half drive away from so we cannot visit as regularly as he would like. We usually visit every 10 days or so and we have him to stay about 3 times a year. (My present husband is not his father and is 85 years old. He finds it difficult to cope with my son for extended periods of time, although he is very good with him when we visit). However, my son still insists on ringing as and when it suits him, every day. Sometimes he can call up to 10 times, others just 2 or 3, but it is still stressful. I am 74, and worry about his dependence upon me and what will happen when I die.

[1994EJED in reply to Pigginbird]

Hi Pigginbird, thanks for replying. Sounds like we are in a similar boat! My son is 24, and lives near us. It must be really hard living a distance away from your son. Is he able to get to you by public transport with a carer or one of the carers bring him by car when he comes to stay? I'm thinking more about yours and your husbands needs here, as that's quite a drive for you both. Reading yours and 49Twisters replies, I guess that's pretty much where we'll always be. I have to let go of some of the guilt about not being 100% there all the time, and starting to build a life of my own. Thanks for replying, take care of yourselves.

[Pigginbird in reply to 1994EJED]

Hello, so nice to have someone understand just how difficult it can get and how tiring and stressful, as well as guilt ridden. Thanks for your kind words. Now that my Mum has died there is no-one in my family who really understands and, more to the point, no-one who really bothers with my son. O.K. they send birthday cards and the occasional gift (some of them) but none of them will give him their time. They find him too difficult to cope with, even though he is very fond of all of them. So who is going to care when I die, he is very much a loving person - although extremely difficult and demanding at times. He has no brothers or sisters. Sorry,I will stop I am getting maudling again.

[1994EJED in reply to Pigginbird]

It's a very lonely world to be in sometimes. I swing between maudling and worry (plus some good bits in between!) even though my family have always been kind and supportive, and my daughter is the same. It still all falls on us really. This forum helps, and I wondered if there were any carers groups near you, as they are the only ones who really get it.

Does your son have Direct Payments to employ a PA so he can be encouraged to get out and about on a one-to-one basis, and maybe do the journey to you rather than always you doing the trip? This has worked for us, over and above the care our son gets within the supported living.

[49Twister in reply to Pigginbird]

Hi like you my son has no brothers or sisters and since my mother died 10yrs ago no family really or family that is interested in his life. You must be similar age to me, my son was born in 1974, so your son even before then and it was so much harder then. There wasn’t the support, emotional/ financial or otherwise, I had to give up my career as a midwife, no childcare and everyone worked then so no family to help out. These children who were born then, who are adults have been forgotten about and left behind for the parents to look after in old age. My son went to a special school all his life till he was 19 and then nothing, these days children with special needs are supported to transition into some form of supported living if they and their families choose to. I feel lucky my son is in supported living now at least you know they will be looked after, it’s not perfect and never will be the same as living at home but there is someone there. It has been a long hard slog but we’re getting there,take care.