A rather depressing account of the recent shiteness of my life.

It's more a cathartic release than a cry for help, but happy to get any advice or comments.

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I'm starting to think that a bipolar partner is wildly inappropriate for an autist....

My wife was diagnosed bipolar not long after we were married some 20 years ago.

Initially it was just a few weeks of profound depression a few times a year. Each episode was followed by a week of no sleep, delusions of grandeur and excessive online shopping. Over time, the episodes have become longer and more severe.

Unfortunately, due to a genetic condition she has had a series of strokes in the last few years - each one further disabling her. It has also triggered a huge amount of anger & hostility in her.

At least some of the strokes occurred because she stopped taking her meds while depressed.

The most recent stroke was 2 months ago, and badly affected her speech and seems to have affected her cognition (so it often appears that she doesn't understand what we say either). I understand about 10% of the individual words she speaks and less than 1% of sentences. I actually get pain in my head when she speaks as my brain desperately tries to find context and make sense of it. She also doesn't seem able to confirm, repeat or explain anything she just said.

She can still write legibly (but very reluctantly). Still the sentences often don't make sense.

She is physically well enough (just) to come home, but she will probably be transferred next week to a mental hospital since she usually won't take her meds (or even eat sometimes) and get's aggressive.

I visit every day, but it's a car-crash everytime. Hospital wards are NOT good places for a freaking out autist - beeps, more fucking beeps, alarms, noisy machines, groans, shrieks, crying, heat, smells, interruptions & difficult decisions. At any random time I have to deal with stroke consultants, neurologists, psychiatrists, hematologists, gastroenteroligists, various therapists, nurses, lunch staff and even hospital security (when she starts kicking off).

All this with 5 other people in the same room, lying in bed with literally nothing to do other than stare & listen in on the freak-show in our corner.

Often when I arrive, she is happy to see me and bursts into tears - we hug, comfort each other etc. It's truly heart-wrenching to see the woman you love in such obvious distress.

If my wife is in a reasonable mood - I last for about 2 hours before I start melting down and have to flee (a bit longer if we can spend some time outside in the garden).

At least half of the days though, she quickly becomes aggressive and obstinate - then she unleashes a few phrases she can (& does) speak loudly and intelligibly: "fck off", "fck you", "stupid" & "crap" (accompanied of course by vigorous rude hand gestures).

I get random rambling text messages in the wee hours from her - a lot of it doesn't make much sense, but the tone is either tragically sad or hostile and abusing me.

Every day I wake around 4:30am and start stressing about the days visit - what will her mood be like? how am I going to encourage her to take meds without triggering hostility? what can I bring for lunch that might tempt her? what do I need to ask the various medics? how are we going to get some blood (for testing)? if I take her to sit in the hospital garden, will she return to the ward afterwards (sometimes I have to get a nurse or hospital security to 'encourage' her back).

When I arrive, I am super masked-up and ready to comfort her, get her eating, chase up doctors, deal with visitors etc. Within hours (on a good day) I am melting down and have to get the *** out of there.

After each visit, I sit in my car and cry in the carpark then go home and quickly try and get drunk &/or wasted before I start brooding on how *** my life will be caring for someone who is hostile and abusive towards me for about half of each year.

My whole existence now is consumed by this:

  • The only people I speak to are her sister and the medics. The only thing I speak about is her many health issues.
  • I can't sleep more than 4 hours a night
  • Every room in the house (unsurprisingly) has my wife's things in it - so I am constantly reminded of her, all alone and distressed in a hospital bed
  • My concentration span has reduced to minutes so I can't mess about on my computers or even play my usual strategy/builder games
  • After a few gins I can watch a bit of telly - but only something plot-less like "Police Interceptors"
  • I'm really struggling to eat properly (but sure can drink)
  • I'm too scared to open our mail (post), answer our phone or check answering machine
  • The only communication I can manage is text messages - but even then I almost melt-down everytime the notification pings. It also literally makes my fingers bleed since she shattered my mobile phone screen during one of her outbursts
  • I spend a lot of time wandering about the local park. I was shocked today when I realised I was envious of the homeless drunk dude passed out in the bushes - I was seriously trying to figure out if I would be happier as a full-on drunk
  • I ran out of weed yesterday, and since my supplier is away on holiday I will try to take a break: it's gonna be an even more miserable, sleepless week this week while I detox
  • After my autism diagnosis a few years back, my passion/goal became to move out of the city and live somewhere remote and wild. I used to think & read about it all the time, but now the dream has faded away - if I can't even decide what to eat for dinner, how am I going to decide where to live?

Every other time my life has devolved to ***-show like this, there has at least been an end in site or an exit plan.

When I look forward now I just see a depressing abyss.

Feel free if you wish to share your own horror experiences...

Explanation: I spent most of my long childhood holidays in hospital getting skin grafts due to severe burns at four years old.

One year, there was an eight year old boy in the next bed... he'd had some kind of accident at his fathers factory - his ENTIRE body was burnt to some degree bar the soles of his feet.

I remember his face was particularly difficult to look at - kind of featureless and smooth in the middle with just a slit for a mouth, two holes for nostrils and rough weird looking, scarred eyelids (possibly because they were fashioned from the sole of his foot?). Every year the poor fucker had to come in and have the soles of his feet sliced off for skin grafts.

Thinking on this and other unfortunates I've met over the years has been really helpful in keeping me from feeling too sorry for myself. If an 8 year old boy can survive the above, I can certainly survive this!

Parents
  • I visit every day, but it's a car-crash everytime. Hospital wards are NOT good places for a freaking out autist - beeps, more fucking beeps, alarms, noisy machines, groans, shrieks, crying, heat, smells, interruptions & difficult decisions. At any random time I have to deal with stroke consultants, neurologists, psychiatrists, hematologists, gastroenteroligists, various therapists, nurses, lunch staff and even hospital security (when she starts kicking off).

    That's a very good description of being in a hospital.

    I have spent many hours in our local one both with my mum and my sister as patients.

    I'm so sorry to read this.  Being a carer (as I was to my mum, with multiple mental and physical health problems) is incredibly hard for people but I think it's especially hard for ASD people.

    I hope that all of this trauma comes to a conclusion that gives you some peace and some time to look after yourself.

    Take care.

Reply
  • I visit every day, but it's a car-crash everytime. Hospital wards are NOT good places for a freaking out autist - beeps, more fucking beeps, alarms, noisy machines, groans, shrieks, crying, heat, smells, interruptions & difficult decisions. At any random time I have to deal with stroke consultants, neurologists, psychiatrists, hematologists, gastroenteroligists, various therapists, nurses, lunch staff and even hospital security (when she starts kicking off).

    That's a very good description of being in a hospital.

    I have spent many hours in our local one both with my mum and my sister as patients.

    I'm so sorry to read this.  Being a carer (as I was to my mum, with multiple mental and physical health problems) is incredibly hard for people but I think it's especially hard for ASD people.

    I hope that all of this trauma comes to a conclusion that gives you some peace and some time to look after yourself.

    Take care.

Children
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