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Something’s not right

onestepatatime
Contributor

New, Unsure and having trouble

Hi,

I am just going to put a thing here to say that its a bit of a rant, as well as a post asking for some help, posted here. 

I am one step at a time. I am new here to the forums and I guess wanted to share my story as it would be good to be able to talk with others who have experienced similar. 

I am going on 23 and though I do have mental health struggles myself I am a full-time carer for my sister who is 20 this year.

I was previously working only casually but left my job to better take care of her.

she has a current diagnosis of 

depression

anxiety both social and general

low IQ 

and a heart condition of Ventricular Tachycardia 

just recently she has also been diagnosed with

ADHD

OCD

and soon to be tested for ASD

unfortunately, she spent a lot of time with no diagnoses and then miss diagnosis until about 2 years ago and just now they are diagnosing the rest. 

I guess I am also hoping I may be able to get some help/tips/advice as well on how people managed the time between getting a diagnosis and starting treatment. I find its currently a very challenging time and I spend a lot of time feeling like I'm walking on eggshells. 

I would have to say my current struggles are helping her with her mental health struggles when she is unable to cope with speaking to any professionals like a psychologist/ psychiatrist and barely even the GP. she also struggles with identifying her emotions and explaining what's going on. 

does anyone have any tips in helping to find a way to both explain and encourage her to speak to a psychologist as they could/would help her? 

also, has anyone else gone through the experience of getting a diagnosis or multiple in this case so late in age

I guess I'm just trying to understand all the different diagnosis and what that means for her and what sort of support I should be giving her as right now I feel like I'm failing her 😞 

sorry to kind of rant it all here but I don't have anyone at the moment that I can speak to about all this and I guess it would be good to be able to speak to others who know what it's like and all that's involved in being a carer 

Thank you for taking the time to read my post 

 
2 REPLIES 2
Former-Member
Not applicable

Re: New, Unsure and having trouble

@onestepatatime  

I believe that often ASD goes undetected in women so a late diagnosis is not uncommon. Diagnoses often change and it pays to keep on top of this, if your sister is diagnosed with ASD I would certainly be asking if and how this affects or if it negates any of the other diagnoses she has and subsequently their treatment. My husband had late onset bipolar ii and was not diagnosed until his mid 50s. From what I understand that his previously diagnosed major depression is now classed as bipolar depression and is treated accordingly.

 

Here are some practical things that you can do:

1) Education is the first step - understanding exactly what you are dealing with, if your sister is diagnosed with ASD there is a lot of very good information available and doing a websearch "autism" and the state/territory you live in will give you a number of useful websites that not only give information about autism but also what supports might be available to you. As there is a lot of misinformation out there, try and ensure that the sites you are accessing are reputable. Some organisations offer carer support and education sessions as well which can be helpful.

2) Communication with someone who has ASD is different - it needs to be direct and not overwhelming them with too many choices (for example if I want to catch up with a friend with Asperger's I will suggest a specific cafe I know they like and will give them two time options). 

3) Getting support for yourself is important too.  There are both positive and negative emotions that go with being a carer and feeling that we are failing our loved ones is one of them. Looking after your own mental health and actively participating in self care activities helps fight carer burn out which is all too common if we do not look after ourselves. There are a number of self care discussion threads on this forum including these which I have linked  Carers Hints and tips to Success  Self-care - Why can it be so hard?  8 dimensions of wellness  

4) I found that being matter of fact about any diagnosis and looking at what needs to be done best manage it not only from the medical/medication side of things but also from the lifestyle and social side of things. This might involve nutrition, exercise, sleep hygiene, social supports such as those available through the NDIS and establishing a routine that includes daily living skills etc. 

5) We can't force our loved ones to open up to a pdoc or a therapist. I give a list of observations to Mr Darcy's pdoc on a regular basis which did/does help with diagnosis and treatment. I am actively on Mr Darcy's side/team, listen to him and advocate for him when necessary.  I found that he just could not understand the point of therapy and it nearly always ended up in disaster. It is only recently he connected with a counselor and that was due to the big emotions that come with a cancer diagnosis. If your sister does say she is having trouble with A, B or C gently suggesting to her that there are people trained in these matters who could help her with this if she would be happy to talk to them about it. It is likely that she will need a mental health plan from her GP to get medicare rebateable sessions. You can search under the APS website for a psychologist with an interest in specific diagnoses here . 

 

 

Re: New, Unsure and having trouble

Hello @Former-Member 

thank you for taking time to reply.

I have spoken with doctors and a psychiatrist and also a mental health nurse re what these diagnoses mean for my sister but at the moment I'm finding each professional has a different answer/opinion and so we are currently spinning in circles.

in regards to number 2) I find that our conversations/communication has always been this way I have had a suspicion and been wanting testing done for a while now in regards to ASD as not only is there a family history but I felt she displays a lot of the "symptoms" and often responds to adaptations that would have been made had she had a confirmed diagnosis.

in regards to number 3 that is currently work in progress and I am on a waiting list to see someone myself so it's just trying to get through until then. thankfully the wait is not too much longer.

in regards to number 5) I have been wondering about the possibility of speaking to mental health professionals on behalf of my sister in regards to her struggles so that I can get tips and help on how to support her and help her so I can then pass it on. I am hoping that is something the new psychologist I am hoping to see may be able to help us both with. 

 

thank you for those links I will have a look as I do think I have a bit of carer burn out and things have been particularly challenging these past few weeks.

thank you again for taking the time to both read and reply to my post

 

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