I have an adult disabled daughter of 35 who lives at hone with me, her Dad & brother. She is & always has been very emotional & quick to cry in any situation where her routine is disrupted in anyway but particularly seperation anxiety from me. Once a year I manage to arrange 2 nights away staying with friends- for a week before I go she will cry everyday pleading with me not to go, saying she’ll be dead when I come back, saying if I loved her I wouldn’t go as I can see how upset it makes her. I hasten to add she is left with her dad, brother & carer.
I have recently started an adult education class one night a week doing something I enjoy & I told her the week before I’d be going & I had tears every day asking me why I kept trying to get away from her- I’m only out for 2.5 hours on a Tuesday! And again she is with her dad & a carer.
Now her Dad & I have been invited to a family party which I was really looking forward to but I am having reservations about going. I think because its a ‘family’ party I feel guilty for not wanting to take my daughter but she is a full time wheelchair user, there is a downstairs loo but it is very tiny, there will be lots of people there & I qon’t be able to see to her toiletting needs without having the door open & having someone to stand by the door to give us some privacy. If me & husband go she will be here at home with a carer she knows well for around 6 hours so no big deal. I am just dreading her reaction. I must stress that we do lots of nice things together but for she gets very anxious if I’m not about. If I go to the shops/ gairdressers/dentist she wants to know how long I will be! We recently, after several years managed to see a psychologist for their input to see how best toxaddress her anxieties but I just find it so draining that I’m so restricted by it all.
How did this start? What happened at school? One day she will have to manage without you.
Have you just been left to get on with it?
Does she have any social life of her own?
It’s always been like this! But she’s only like that with me. Her Dad can go out & she’s not bothered but with me its different & since I’ve retired its got worse. The psychologist says its understandable as I am her primary carer & do lots of things with her but the nature of her disability means that to meet up with her friends this needs to be facilitated by me. Its only recently that we have started to use carers on a regular basis to get her used to them and to trust them. Her Dad helps a lot around the home but their relationship is very different.
Hi @Diane_1605123 I have a 41 year old with autism who now lives in a supported living environment. I have to say that it sounds as though your daughter urgently needs the same - but that won’t happen unless the psychologist comes up with something more constructive than saying “it’s understandable.” Frankly, I’m not sure that it is “understandable”. There are lots of potential reasons for this behaviour, and although anxiety is the obvious one, I’d be looking first at others. How long has she been like this? Do you cut short your trips, or dash out of college the moment the session is over?
They should be advising on things you can do to break her overdependence on you before you become too ill to care - or worse. Things like go for a walk, and make the walk a little longer each time. No discussion, just “I’m going for a walk, back in a bit.” Don’t let it become an opportunity for the usual, just go.
Go to your party. No guilt.
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Thanks for your reply. I agree entirely. Its early days with the psychologist so I hope its the groundwork before building up to a workable plan. I feel my pattern of behaviour to her is as much entrenched as hers is and I have unconciously made her more reliant on me but how to break it?
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@Diane_1605123 welcome to the forum. I agree with what Charles has said ,the only way you can break it is to do the things you want to do go the places you want to go.You don’t have to worry as like you said her dad ,brother and carer are all there. Just say right I’m off to my class now just go and get back when you do. When you go out say right I’m off now and just go .no long discussion or you trying to explain everytime you do anything. Go to your party with your husband and have fun .your daughter is being looked after. Eventually hopefully she will get used to you going out and doing things and that there are other people to look after her and take care of her to as well as you to. You need to have some time for yourself to enjoy the things you love to do. It may be hard at first but hopefully she will in time get used to it. That mum needs a life to ,to be able to do what she wants.
I can only suggest a small steps approach - such as the going for a walk. Also, perhaps it’s time for a talk about the future, one where you - and others - will not be there for her, and how you all need to prepare for it. It will be tough, but it’s going to be necessary.
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Thank you, of course you are right. It’s just that things have been like this for so long its hard to break the habit for her and me.
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Lots of her friends from special school now live in small residential places or have their own flat but as far as I’m aware they were all determined to leave home & live like other young people. My daughter has shown no inclination to move so while we can manage it we do but of course that won’t always be the case.
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@Diane_1605123 i understand exactly what you are saying it’s not going to be an easy thing to do. But if you don’t things are not going to change.you already said you find it draining that you feel so restricted by it all. and only you can change it no one else. Like you have said she has other support her dad, brother, carer you could start slowly get her used to them doing things more. could you say something like you go to special school and see and meet your friends. That is what mummy is doing she’s going out to see and meet her friends and will see you when I get back.
And also like Charles said not a nice thing to think about but in years to come when you are not around she is going to have to rely on other people. So it may be best that she starts getting use to that. so things are easier for her.
And that’s why it’s imperative to talk about it. Our son moved out in 2010 - we were still capable of caring for him but we knew that the time would come. Four years later, it did: my wife had a spinal cord injury that reduced her mobility to a few steps. Had it happened with Mike still living with us, he’d have ended up anywhere they could find, and the trauma of that would have finished him. Instead, he’s happy, enjoying life and still learning.
Waiting for it to happen will only make the outcome worse.
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In an ideal world special children should have a clear pathway to adulthood.
They should be able to leave school for “college” and then into a future home.
My son went to a “farm college” which had horses, gres fruit and vegetables, had sheep. The students all ate their main meal in the middle of the day. They were divided into five groups, each group cooked a meal for everyone every day, so everyone cooked one day a week. They were taught food preparation as part of the process. I was stunned when they said M could prepare anything and everything. Skills never demonstrated at home, I would add!
They all did their own washing, and had a prize giving at the end of the summer term. They weren’t sure if M would cope at all - at boarding school he had his own “minder” but in the end he won the prize for the most improved student. I was so proud.
From there he went to a lovely residential homes, again where students were supported to be as independent as possible.
Sadly them management changed and he had to move. Residential can be a good stepping stone to supported living. M now lives in a privately rented flat with carer support.
Going straight from school to SL would have been a disaster for my son, but bit by bit he became more independent with support from his peers and staff, and his family of course.
For the very reasons you outlined it plays on my mind more frequently these days. I would love to see her settled somewhere while I’m still capable of overseeing it & helping to settle her in but she is so happy with us at home & particularly her brother I think the upheavel would make her so sad she would lose the will to live.
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You can still see each other very regularly. Surely it’s better to know she has a home whatever happens to you? 3 months ago I could walk well. Suddenly a tendon in my ankle split and I can only hobble around now
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There are far more down sides to not being prepared.
We see Mike regularly. Sundays we have lunch either at his or at our home. Last Sunday he and his staff prepared a Jambalaya. This Sunday I’m cooking an attempt at a favourite Chinese dish we came across in Barnstaple - Beef and Broccoli. Probably a Sweet and Sour to go with it. We go to the cinema together, sometimes eat out, and we go on holiday together. Alternate Fridays, he either has a “boys’ night” with his brother - Chinese takeaway and watch Doctor Who or something - or a family night at our house for a Chinese takeway, and watch a film or something sci-fi. And then he goes home.
He loves his life. And has more control over it.
Just lately I’ve been struggling with arthritis in my neck and shoulders setting off major migraine-like headaches. Yesterday was a howler. He doesn’t have to deal with that, or worry about it. And it doesn’t affect his care.
A planned move is always better than a forced one in traumatic circumstances.
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