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Carer & wife struggling with the day to day demands as a parent of a disabled adult son
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29-05-2017
10:23 AM
Not sure what to do as we always seem to get the same response of: You just have to wait. Well we can’t wait….
When I left for work this morning my wife was again crying on the bed with the feeling of failure. This is a daily occurrence. She has a 29 year old son with cerebral palsy who is constantly lashing out. Lashing out because my wife’s body is physically breaking down and she can’t supply the level of care he needs each and every day to get him out of bed, showered etc., so he can have his own quality of life. He doesn’t understand this… so who is the target of his aggression? Her. Mainly verbal but on occasions physical.
She is now visiting doctors & physios virtually every week because of her own issues, effectively she lost her job after 25 years with the same
company because she could not put in the extra hours under new owners. She breaks down and cries constantly and the strain is mounting on our relationship. I can see this change in her and it worries me.
His day care are great, but the issue is mornings when the rest of the family leave for work and she is left to try and start each day,
struggling to dress herself at times due to her own physical decline. We have tried getting people [off our own backs] in to help, but who wants to deal with someone constantly hurling abuse at them.
It just seems like there are roadblocks everywhere and what hurts is that I am seeing someone I love think they are a failure, and yet from
the outside all we get is, sorry there is nothing we can do at this stage, or just wait, or does he still have the same condition, or why can’t the other siblings step up and so on…..
When I left for work this morning my wife was again crying on the bed with the feeling of failure. This is a daily occurrence. She has a 29 year old son with cerebral palsy who is constantly lashing out. Lashing out because my wife’s body is physically breaking down and she can’t supply the level of care he needs each and every day to get him out of bed, showered etc., so he can have his own quality of life. He doesn’t understand this… so who is the target of his aggression? Her. Mainly verbal but on occasions physical.
She is now visiting doctors & physios virtually every week because of her own issues, effectively she lost her job after 25 years with the same
company because she could not put in the extra hours under new owners. She breaks down and cries constantly and the strain is mounting on our relationship. I can see this change in her and it worries me.
His day care are great, but the issue is mornings when the rest of the family leave for work and she is left to try and start each day,
struggling to dress herself at times due to her own physical decline. We have tried getting people [off our own backs] in to help, but who wants to deal with someone constantly hurling abuse at them.
It just seems like there are roadblocks everywhere and what hurts is that I am seeing someone I love think they are a failure, and yet from
the outside all we get is, sorry there is nothing we can do at this stage, or just wait, or does he still have the same condition, or why can’t the other siblings step up and so on…..
2 Replies 2
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29-05-2017
02:57 PM
Hi Sman,
I”m not sure what you are being asked to wait for . I agree with you and I think you should be proactive not reactive to the situation.
It seems to me that there are plenty of health care professionals involved in your families health and wellbeing and I wonder if its not time that everyone sat down and sorted out where to go from here .
I would start with a double appointment with your GP.
At that appointment bring a list of all the things that are working well and you don’t need help with .
Then bring a list of all the things that are not working well and you do need help with.
Have a paragraph written out that describes briefly what an ideal situation would be for you and your wife. Be really honest . Is it out of home placement ? Is it respite on a regular basis ? Is it help in the morning so that your wife is not alone with him at that time.
Write it all down together and be honest with yourselves and with your doctor.
Call on some advise or just chat to people in the area
http://www.carersaustralia.com.au/home/
https://www.ndis.gov.au/
Do not feel that YOU guys don’t have the right to your own physical and mental health. In fact I would say it is mandatory if you are going to be able to maintain your helping and supportive role with your son.
I”m not sure what you are being asked to wait for . I agree with you and I think you should be proactive not reactive to the situation.
It seems to me that there are plenty of health care professionals involved in your families health and wellbeing and I wonder if its not time that everyone sat down and sorted out where to go from here .
I would start with a double appointment with your GP.
At that appointment bring a list of all the things that are working well and you don’t need help with .
Then bring a list of all the things that are not working well and you do need help with.
Have a paragraph written out that describes briefly what an ideal situation would be for you and your wife. Be really honest . Is it out of home placement ? Is it respite on a regular basis ? Is it help in the morning so that your wife is not alone with him at that time.
Write it all down together and be honest with yourselves and with your doctor.
Call on some advise or just chat to people in the area
http://www.carersaustralia.com.au/home/
https://www.ndis.gov.au/
Do not feel that YOU guys don’t have the right to your own physical and mental health. In fact I would say it is mandatory if you are going to be able to maintain your helping and supportive role with your son.
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29-05-2017
05:14 PM
Hi Dr Kim
Thank you, we have done all you suggest, but what I wrote are the answers she gets on the back of same. I am limited as a step father in what I can do as he is 29 and I am not considered in their assessments.
All seems lost because we get basically a "bad luck there are people ahead of you and you just have to wait". He is 29 how long do we have to wait.
this morning as an example was really bad..and I come home to more of the same.
the issue is simple, he needs out of home placement for his own health, wellbeing and growth. And for my wife to be able to get some quality of life and deal with her issues both physical and mental.
unfortunately the answer for us is out of home placement but all we hear is there is a waiting list but effectively someone needs to die for a space to become available.
