Caring Tips/Help

wwfwilla

Hello everyone.
My mum is a carer for my brother.
I'm not here to talk about his financials, more his lifestyle.
He has Asperger's Syndrome to start with and 18 months ago was made redundant which hit hard hard and he has severe depression.

He sees his GP every other month. He's just started a new round of counselling. He has a lady that specifically comes to take him out for a walk. Plus he's due to have a trial volunteering session (run by the local council) to help him get used to the big wide open world again.

I'm thankful my mum is around to be his carer as he needs a lot of prompting. He'd probably stay in bed all day otherwise. She has to prompt him to get out bed, to eat, to go to toilet. He's literally like a robot in standby waiting for instruction. I worry he wouldn't eat or wet himself if she wasn't there.

What's causing my mum significant amounts of stress is this prompting him to do things. For example if they go to the doctor for a morning appointment she has to prompt him to get out bed, toilet, changed, breakfast, out the door into the car. All this can take about 2 hours as my brother most of the time 'ignores' her. She has to constantly be on his back all the time to get him to do something. And a lot of the time he still won't do it.
Even if my mum wants to go to the supermarket she'll take my brother so he gets out the house. But it literally takes half an hour for him to get his shoes on. She's egging him on to do it and he just won't do it.
She has serious issues with him and sometimes it takes 2 hours just to make him go to toilet for the first time that day.
If they have an appointment like a counsellor or GP etc then its a real hassle and needing to start very early to get him moving.
A lot of the time my mum will call me to assist and I speak to my brother to get him moving. I think its because I take the role as family leader (since my dad passed away).
I hate it when my mum calls me and she's in floods of tears stating she can't get him to do anything. The calls happen so often that i've had to have an adjustment put in at work to take time out for these calls etc.

I know if my brother is leaving the house its likely crippling anxiety. He barely speaks but when he does he's shaking like he's cold. This just makes him 'lock up' and unable to get him to do anything.
But there are times when they don't leave the house at all that day and she still can't get him out of bed.

I don't know if the depression is made worse by his Asperger's.
What i'm after knowing is if there is someone who can help my mum. I don't mean in doing the caring bit. I mean is there someone who can teach/train/educate my mum on the best way for her to help my brother and the best methods/techniques to use to get him to do stuff? I suppose its almost carer training i'm asking for.

As a side note my brother is on maximum anxiety/depression tablets. I don't feel his GP/counsellor appointments help as my mum just tells them how he's been over the past month and then they say see you at the next appointment. Its not treatment, its a de-brief each time.

Any help you can give will be much appreciated.

Spoonie_Turtle

The anxiety that comes with autism (which Asperger's is, just one particular profile) is completely different from anxiety disorder that would be treated with antidepressants.  And from the outside, autistic burnout can look like depression.

I can't be more specific - even if the forum rules allowed, there's just simply not enough information - but it really sounds like he needs autism-informed, neuro-affirming care, particularly medical care.  I wish I knew where to direct you for that but I don't, but please please start looking for information by autistic people* about autistic burnout and autistic anxiety.  Because they are not treated with medication but with removing demands from someone's nervous system, and medication can have terrible effects if it's not appropriate.  The deeper into burnout someone goes, the harder it is to recover and the longer it takes.

By the way I'm not saying your brother *is* definitely in burnout, but based on the stats of autistic people diagnosed with depression turning out to be in burnout, it is very possible, especially after a big change and perhaps years of trying to conform to neurotypical expectations.  And the way to recover from burnout when someone is definitely autistic, won't do any harm even if they're not in burnout.  (Unlike if he turns out not to have a condition that's being treated with powerful medication.  I'm not blaming the Dr if that is the case, the medical system is very behind on this.)

There may also be a load of sensory needs unaddressed if nobody knew about them, I'm thinking things like noise from the supermarket, visual overwhelm from so much going on, putting up with uncomfortable things at home because he and nobody else knew there were other options, etc.  Learning about all this requires being open to thinking in a completely different way and probably forgetting anything and everything that medical professionals advised when he was diagnosed - even things like 'not liking change' there never used to be an actual explanation based on how it is to experience living in an autistic body with an autistic mind, just what was observed from the outside by allistic people.

*It's really important to find info from the autistic community because the medical profession and system have not caught up to reality yet.

If your brother's finances allow private medical care then that is probably the route to go down if at all possible, to find neuro-affirming care (that's the term to look for, and ideally if the professional is autistic themselves as well).  Otherwise, you and your mum will have to do your best based on what you learn.


Edit to add: you mention needing prompting to go to the toilet.  It is very common for autistic people not really feel interoceptive signals - such as feeling hungry, thirsty, needing the toilet, etc.  And if burnout is in play here, that can make it even worse.  If he doesn't already have a schedule with regular times to eat that would help, and he could also add times to go to the toilet too so that he doesn't have to rely on unreliable body signals or - hopefully, eventually - prompting from your mum.

I would also say - and I'm aware this may be straying towards medical advice so I'm going to say take note of the IF and read up for yourself - if he is in burnout then he probably needs to have as few demands as possible, only what he needs for survival (eating/drinking, toileting) and for essential wellbeing like basic hygeine (which can be really difficult if in burnout, so standards may need to drop from typical healthy standards to 'good enough' i.e. preventing infection and not being unbearably smelly).  Again a schedule would give predictability which is good for the autistic nervous system, and sufficient transitions as well.  Occupational Therapy can help there, if it is neuro-affirming, but again NHS provision is unlikely to be enough.  So if you can find someone privately that may be required.  However even if not, there's SO much that can be learned from the community, so many tips that can make things more bearable for even the most unwell autistic person.

(^Mods if that bit is too close to medical advice please just remove that, not the whole post!)

TimeLord1

Did the GP recommend any occupational therapy support or suggest a social services visit to establish some care package help with him to give your mum some assistance?

TimeLord1

​The National Autistic Society (NAS) offers specific programs for families. Look for their "EarlyBird Plus" or "TeenLife" programs—while the names sound like they are for younger people, they often have workshops for families of adults focusing on communication strategies.

https://www.autism.org.uk/

wwfwilla

Thanks for all your help so far.

Just to clarify my brother was fine before. He’s been diagnosed for about 10 years with Asperger’s but apart from being a bit awkward in social situations he wasn’t too different from normal.
After he was made redundant he declined over a few weeks. He stopped being as outgoing and stopped showing as much emotion on a declining basis. It wasn’t instant.
The GP put it down to severe depression from losing his job.
To everyone else a job might not be that important as we’ll get another. But he must have taken it personally like he wasn’t good enough or did something wrong, which hit his confidence.

I just wanted to share the above to help with how he got to where he is now.

Savvy_Sue

I think that makes the advice to find autism focused help very important. Hope you and mum can do that. 

Spoonie_Turtle

wwfwilla said:

Thanks for all your help so far.

Just to clarify my brother was fine before. He’s been diagnosed for about 10 years with Asperger’s but apart from being a bit awkward in social situations he wasn’t too different from normal.
After he was made redundant he declined over a few weeks. He stopped being as outgoing and stopped showing as much emotion on a declining basis. It wasn’t instant.
The GP put it down to severe depression from losing his job.
To everyone else a job might not be that important as we’ll get another. But he must have taken it personally like he wasn’t good enough or did something wrong, which hit his confidence.

I just wanted to share the above to help with how he got to where he is now.

People can mask for years (without even realising it, looking fine on the outside) and suddenly losing such integral structure in their lives can definitely tip them into burnout.  Burnout can be instant or gradual.  Showing less emotion externally could be shutdown or it could just be masking less.  Or both, not masking the shutdown.

Again I couldn't possibly say for certain for a random internet stranger, but none of what you've said goes against the possibility of autistic burnout.  And I don't know if GPs are taught about it even now, whether it's medically recognised at all or still mainly community knowledge.

wwfwilla

I'm probably grasping at straws here, but last summer my brother was in hospital as he had an infection.
Overnight he'd been treated with very high strength antibiotics on a drip. That day I saw him in hospital he was completely 'normal' like a switch had flipped. The following day he was back to his depressed/reserved character again.
I always wondered if it was coincidence or whether the antibiotics did something...?? He's never had a 'normal day' since where he returned his old self.

sheramber

wwfwilla said:

I'm probably grasping at straws here, but last summer my brother was in hospital as he had an infection.
Overnight he'd been treated with very high strength antibiotics on a drip. That day I saw him in hospital he was completely 'normal' like a switch had flipped. The following day he was back to his depressed/reserved character again.
I always wondered if it was coincidence or whether the antibiotics did something...?? He's never had a 'normal day' since where he returned his old self.

Could be he was masking the day he appeared normal in hospital.