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Casual Contributor

Newbie

Hey there, I'm new here, not sure where to start. I've been a full time carer for my mentally handicapped (she has the mind of a 5 year old) great aunt for 2 1/2 years, I have lived with her my whole life but only just taken on this role after my mum passed away.

It is just me and my aunt in my house, she is about to turn 78, I will be the fourth generation of family to look after her.

Lately I've been finding it so isolating and I don't know how to change my line of thinking, I get down most days, it can feel like the most thankless job in the world, and unless you've lived it, I feel like my friends have no comprehension of what my daily life is, giving everything that you have to someone else can feel exhausting and frustrating.

 i try and see the silver lining, but when everyone tells you to get over it, or gee you must have it good, it's like you're on holidays, you must get all the time in the world to do what you want to do. 

It's hard going anywhere cause of her walking

How does everyone else cope?  Does anyone have any advice?

 

 

 

7 REPLIES 7

Re: Newbie

hi @Biscuit71 

 

A warm welcome to the SANE forums. Congraulations for reaching out the way you have and for having the courage to tell your story of your caring.  I am sure you will find that the forum community will be supportive, informative and connecting. If you need help with using the forum please reach out to the other members or the moderators.

 

Welcome aboard

Whitehawk - moderator

Re: Newbie

Hi @Biscuit71 

Caring for someone is a tough gig. I am wondering what supports you have in place for yourself.

Senior Contributor

Re: Newbie

@Biscuit71  Hi Biscuit and welcome to the forum Smiley Very Happy. Yes I understand completely I care for my son2 he is 26 and yeah it is hard. As @Darcy  said do you have any outside help for you and you aunt?  Your aunt may qualify for a ndis package which would mean carers would be assigned to take your aunt out and about giving you some much needed time to yourself. Every carer needs a break. 

 

I would check with your aunts psychiatrist if she has one that is. If not your trusted gp may be able to help. I hope this helps a bit. Looking forward to seeing you around the forums. peax

Re: Newbie

I have 2 social supports on Monday and Friday for 4 hours through Anglicare, which is immensely helpful. I have overnight respite organised through commonwealth respite. She used to go to in center respite once a week, but I found she was picking up every behaviour and becoming more naughty.

I think the thing I find hardest is that it feels like she targets me with her moods and tantrums, I can ask her to do something 15 times and she just lays there and stares at me, if someone else asks she is straight up, I do everything for her, bathe, toilet, cook and feed, make her bed. And then to get such a hostile attitude back just makes you feel like crap most days.

I feel like not one of my friends understands that it's like being a single parent of a disabled child, I have to plan things

Re: Newbie

@Biscuit71 

There are a lot of people who do not understand just how demanding a care role is. Our loved ones can be demanding and I do think they expect more from a family carer than they would a paid one, as you say they can be stubborn and uncooperative with us, but are angels when visitors come and our friends can't see what the problem is ... 

 

images (78).jpg

 

It does take planning to do things. Having a friend who understood and cared was so helpful for me when our lives changed and I needed to care for my husband.  

 

The government has just changed the way they fund carer support, I know that both Carers Tas and Carers SA got funding, as did Wellways (Vic, NSW, Qld) and free counseling is available as well as other carer supports. I think Carers SA/Tas offer coffee mornings and the like.  I did a 'snapshot'   class with Wellways that was helpful. 

 

https://www.carergateway.gov.au/#fold-scroll

 

 

Re: Newbie

Thank you for your advice, I think just certain days can be harder than others, i will definitely look into the options available. I appreciate all the advice given 

Highlighted

Re: Newbie

Living grief @Biscuit71

Important that we allow ourselves to give ourselves permission to feel it and deal with it and come to a place of unforced acceptance.

 

PS if you want to tag someone to let them know you have responded or want to ask a specific question, put an @ at the front of their name,  a list of the last few people who have responded will pop up or you can start typing a user name and a list will come up.

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