06-08-2018 07:06 PM
I'm a carer of my 21 year old daughter. She is high functioning autistic formerly and more comfortably known as aspergers. Its more debilitating because of social anxiety so she is not really employable as she doesnt socially converse. I support and make sure she gets to all her therapies programs funded by NDIS. She has no friends or relationships apart from us her parents and I drive her to all her appointments. I also try to recap and reinforce what she is doing in those programs and to implement this in our daily life.
My main dissappointments are with my son, and his partner, they are annoyed because I dont help out much with the grandchildren with baby sitting while his partner does study and placement for nursing. I believe they have no idea what I do each day and what my capabilities are after doing those things for my daughter. I have helped son's partner alot with looking after the grandchildren but since NDIS came in, its my priority to use the funds given by the government to help my daughter to some day hopefully be independant of us.
I feel like saying to my son and his partner, can I ask you to give up a work day to take your sister/sister in law to her appointments or to his partner can you sacrifice one day of your placement to take your sister in law to 2 appointments today. I have done this for them, changed my daughters schedule to help out. They have forgotten what I have done and did continue to do, I offer my availability but she is not willing to work with me on that.
It upsets me greatly because this opinion of theirs is that what I do for my daughter is not seen as important because it was their expectation that I would be available for them to look after the kids, even though I have explained what their sister/sister in law is doing.
Son's partner's mother works full time as a cleaner and another nanna works full time in a supermarket, but what I do for my daughter makes them feel I'm available. Not fair.
It upsets me more because I have been pushed down the list. They wont come for home dinners cooked by me. This year may be the 3rd year they wont be having a christmas meal with us. Their choice.
It makes you see who people really are when you say that word 'no' and it was a gently no from me.
What I really feel like saying is, do you think when I say no its to sit on the couch and when it upsets you its because I am trying to help my daughter be independant someday hopefully, explain that logic to your friends when you talk about me, tell them what I am doing, then that will reflect on you, where it belongs.
07-08-2018 04:55 PM
I can really hear the frustration and hurt in your words @Dark_Olena You're doing all you can to best support your daughter to have the best possible future and it feels like no matter what you do, it's never enough.
Saying 'no' is one of the most difficult things we can do as Carer's and it absolutely doesn't come easily. You've made a really good decision in being able to be clear with your son about what you can and can't provide. Although he might not quite understand things right now, hopefully when he reflect on things from a distance, he'll be able to appreciate just how much you're doing to be there for your kids.
On a related note, I wondered whether your daughter may be intersted in connecting with the headspace Digital Work and Study Service. They provide online and phone support to young people experiencing a mental illness, to assist them to engage in work and study. That includes things like employment skills and mental health support. Might not be appropriate for your daughters needs or something she is interested in however though i'd drop it in just in case.
Look ater yourself @Dark_Olena 🐨
07-08-2018 09:19 PM
hello, your life sounds quite difficult at the moment with lots of competing demands for your time to be a caregiver to people. It sounds quite exhausting. From the sounds of it, your son and his wife are being very unreasonable and selfish by expecting you to babysit when they want you to do it. Perhaps they just don't really understand what it is like for you to care for someone with special needs and how hard it is? Can you maybe talk to a counsellor about setting up some boundaries so they don't take advantage of you?
I hope things improve for you soon
08-08-2018 03:21 PM
I normally post in the Lived Experience forum but I came across your post by chance and feel for you - and I understand
It really is your choice about how you fill in your time and your son is being pretty unreasonable - after all - he and his partner chose to have their children and they are their responsibility - not yours
And your daughter is your responsibilty - and she needs it to learn to become as independent as possible - and you could ask your son and/or his partner to take time from their shifts to help you in return but if they haven't had you for Christmas meal for three years I get the feeling they are not all that friendly
Regardless - I feel you are making the right choice to prioritize your daughter - I had two children and my son had an MI and needed my time more than my daughter - I think when they were teenagers she had resentment about the time the "naughty brother" had so much more attention and to this day it is a subject never discussed
I don't feel okay about writing the whole story but I am glad I put my son first in spite of what other people thought I "should" be doing - and it is really hard to say no to people
I don't know what else to suggest but I think you are doing the right thing and it is hard to say No and I understand that
10-08-2018 06:13 PM
10-08-2018 06:18 PM
10-08-2018 06:25 PM
I'm glad to hear your daughter has connected with support at headspace @Dark_Olena. The work and study service is relatively new. They often work alongside Disablity Employment Support services too so could be worth a try. Hope your daughter enjoyed making cupcakes today - nice to share in good stuff with her I imagine, in amongst the challenges🌻
10-08-2018 06:27 PM
11-08-2018 01:28 PM
You are right - some people will not like your decisions - and your son possibly has some resentment issues - which I understand - but he is a grown man making his own decisions
And as for his partner - it is possible to study while having kids and working too - I did this - I worked hard and earned an Honours Degree studying part time - your son's partner can do the same
I think it was Abraham Lincoln who said
You can please some of the people all of the time and you can please all of the people some of the time
But you can't please all of the people all of the time
My own comment is to please yourself because then at least one person is happy
Not that I think you are happy at all caught in this set of choices - but please take some time for yourself as well with all of these demands on your time
I wish you and your daughter the best
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