Hi,
I’m new to this site. I was wondering if anyone is in a similar position. I am a single Mum of a 21 young man with autism and also caring for my 91 year old Mum who has early dementia. We live together.
There is lots of advice for each individually but I have struggled to find anyone who is in a similar position who understands the emotional demands of this combination of caring and the issues it creates.
T
I have a son with severe learning difficulties, and at one time all four of our parents were entitled to highest DLA care, although one was too stubborn to claim! They were 6 miles away from home, one north, one west. We ended up calling ourselves the Thunderbirds, ready to drop everything at a moments notice!
When did your son and mum last have Needs Assessments from Social Services, and you, a Carers Assessment?
Is your son still in education or training?
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Worth doing a benefit M.O.T.
What better than an online benefit calculator ?
Any abnormalities thrown up ?
Thanks for your responses. It has been a difficult few years as I have been regularly travelling up North to also support my Mum’s sister who sadly passed in October she was in a care home with Alzheimer’s.
She had no children and I was the only relative who would regularly see her.
I left the North when I was 18 and only visited my parents during summer holidays with my then husband and sons. Dad passed away 2015 vascular dementia and I moved Mum down 2016. I am an only child.
I think we are fine for benefits but I will check again. Thankyou for the link. It is more the issues of having two very demanding adults with very different needs. Both get bored and look to me to entertain them. I have organised a befriender for Mum who visits once a week for an hour and my son who is out of college at moment goes to an autism social group occasional Fridays. Mum is unwilling to join a social group , she was never very social and during her marriage would just spend time with Dad.
Both of them have communication difficulties and misunderstand each other, my Mum has not really been around people with autism and gets grumpy when he doesn’t communicate with her in the way she wants. Unfortunately she is quite demanding of attention .My Dad who was a lovely man but he did indulge her and she can be quite self absorbed.
My son needs reminding not to be rude and can be very direct ( in that lovely autistic way!)
I try to encourage them both to do things for themselves as I make 1 meal for them in the day but they get their own snacks and drinks. Mum can be very rude about this as I think sometimes she thinks that her age means that she should be spoiled. She is starting to get forgetful and a little confused but having done the dementia journey twice with my Dad and Aunt previously it is not significantly difficult for me to manage at the moment.
I guess I posted this because at times I think both see me as as a service provider. They both don’t interact with me in a personal empathetic way. I believe they care but it can be very lonely as they are both quite ego centric. Conversation is very limited and although they are both at home together (( I have a part time job) there are also territorial issues as my son wants to do PlayStation in the lounge and my Mum wants to have a quiet environment with very little noise. They don’t really communicate with each other and find myself acting as go between, negotiator and appeaser. I just feel pulled in two directions.
Any suggestions ?
Has mum always lived with you?
What is her financial position, does she have over £23,000 in savings? (Yes/No)
Hi Tracey
I have experience of both, but not under the same roof at the same time.
First practical solution is for son to use earphones while playing games
Second is to realise Mum won’t change and her bluntness will get worse, empathy is not a strong point of the very elderly
So separation either physically by setting them up with different rooms or living. If he needs tv and she wants it, then they need one each, him on headphones.
Son will need moving to some sort of independent living at some time, whether that’s on his own, or supported or full residential, but this is slow process
Both need more structure to their days that doesn’t involve you. You are going to have to be firm, very firm
Could son be involved more in looking after Mum, e.g. getting her tea at regular times. Can he do more of the household jobs on a timetable
At some point Mum may go into residential care, so don’t fall into the trap of saying she will never. Her needs may mean it necessary, or yours and sins if situation gets too unmanageable.
She also sounds as though she would like the attention and company she’d receive in a care hi me. You could sell it to her on the ‘like a hotel’ idea
I think you need to start seeing yourself more as care manager than slave and care giver, i.e. you arrange what they need but provide less yourself. Do you get time to yourself, counselling, a social life, regular exercise?
Kr
MrsA
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Thankyou so much. I will definitely in invest in the headphones and encourage my son to make food for Mum. He is pretty good with the microwave.
I’ve never used a forum before. Thankyou it’s lovely just to have your support. 