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Upcoming anxious event...

TearClimber
over 2 years ago

Hello everyone,

I'm interested in getting some new perspectives on my situation. I live with my autistic partner, who suffers from anxiety. We have a family member who needs to be taken to hospital next week, and since I will be away on holiday, my partner has to be the one to take him into the hospital. The family member is quite a non-compliant patient, and in the past there have been some quite stressful and dramatic episodes getting him to attend his appointments. My anxious partner is extremely worried about having sole responsibility for bringing the family member to hospital while I'm away.

Me and my partner have had conversations in the past about the division of labour in our relationship, and how his anxiety often means that I am the one who picks up the slack. I have quite a stressful job and have suffered from a stress-related illness over the past few years, so picking up this additional emotional labour is quite taxing for me, but in a much more subtle way than for my partner, whose anxiety is more immediate and obvious.

I really want to support my partner and understand how his anxiety affects him regarding the responsibility of taking care of this hospital visit. However, I am also finding it quite emotionally draining, and I feel like I need to manage not only our unwell family member, but also my partner's anxiety about the whole illness and hospital visit. I have tried to express this to my partner in a calm way, but I am worried that he will feel like he needs to bottle up his anxiety. I want him to know that he can come to me for support, but also make efforts to get some perspective on what he has to do regarding the hospital visit, and try to manage his anxiety, for his and everyone else's benefit.

If anyone has any advice on this, or wants to enlighten me on a better way of seeing/doing things, I'd be very keen on your support.

Thanks,

TC

Parents
  • over 2 years ago
    TearClimber said:
    Me and my partner have had conversations in the past about the division of labour in our relationship

    I (all too often) have discussions like this with my wife - it's quite difficult for me to convey to her how difficult autism makes some tasks for me that she considers trivial. This is mainly due to how well I've masked/coped in the past before our circumstances turned to shite (and co-incidently before I realised my autism).

    EG: She didn't realise the effort/anxiety/exhaustion I experienced simply going to her Mum's for a meal, phoning my family (or pretty much any task involving other people, or worse, asking other people for help). Give me something I can do by myself and I'll ace it - technical, DIY, planning, research, gardening, car maintenace etc... but make me do something where I have to deal with people and it costs me.

    TearClimber said:
    but also make efforts to get some perspective on what he has to do regarding the hospital visit

    From my (autistic) perspective, and with decades of managing healthcare for a non-compliant patient... this would be a nightmare scenario for me.

    I'm not keen on visiting hospitals even by myself - bright lights, strong smells, endless queuing, crowds of diseased, dying &/or overly emotive people. On top of that if I'm with someone else I have to mask, be comforting & look out for their welfare. It's really stressful and exhausting - and that's not even factoring in the medical reason for the visit (often bad news in our family).

    Despite that, getting someone compliant to an appointment is definitely managable...

    I can plan the route, consider toilet stops, prepare the car, perhaps even do a test run at the same time the day before and go inside to see how the check in/queing works.

    I can make sure they get up in plenty of time to wash, eat (if permitted) and be ready to go at the appointed (earlier for contingency) departure time.

    ie: I can reduce as much uncertainty as possible. I may not be able sleep 1-2 nights before the day, but I could do it.

    TearClimber said:
    The family member is quite a non-compliant patient

    But... WTF do I do after all this planning, anxiety and mental energy if the patient doesn't get out of bed on the day? Or won't get in the car? Or starts yelling at me? Or hurting themselves? What if we get there and they run off? Get Hostile? Meltdown?

    I can't fathom even sane peoples motivations & behaviours - I just kind of guess how to act/respond based on experience... but even that goes out the window when dealing with someone irrational.

    I'm sitting here stimming like crazy now just thinking about someone else having to doing it (well actually it's probably because I'm remembering past experiences).

    Now I don't know nearly enough about you, your partner or your un-cooperative patient... but some options might be...

    • Accept the patient might not make it to the appointment - this takes a little of the pressure off your partner (who may then have a better chance of success)
    • Work through any likely bad scenarios and how your partner should handle them. Ask your partner which aspects he is most stressed about and perhaps ask here for more specific advice.
    • Do what's required to improve the chances of the patient complying. Sedatives? bribery? Another person to assist?
    • Talk to patients GP or care team for assistance - patient transport, mental health team or perhaps even home visit?

    I wish all three of you all the best.

Reply
  • over 2 years ago
    TearClimber said:
    Me and my partner have had conversations in the past about the division of labour in our relationship

    I (all too often) have discussions like this with my wife - it's quite difficult for me to convey to her how difficult autism makes some tasks for me that she considers trivial. This is mainly due to how well I've masked/coped in the past before our circumstances turned to shite (and co-incidently before I realised my autism).

    EG: She didn't realise the effort/anxiety/exhaustion I experienced simply going to her Mum's for a meal, phoning my family (or pretty much any task involving other people, or worse, asking other people for help). Give me something I can do by myself and I'll ace it - technical, DIY, planning, research, gardening, car maintenace etc... but make me do something where I have to deal with people and it costs me.

    TearClimber said:
    but also make efforts to get some perspective on what he has to do regarding the hospital visit

    From my (autistic) perspective, and with decades of managing healthcare for a non-compliant patient... this would be a nightmare scenario for me.

    I'm not keen on visiting hospitals even by myself - bright lights, strong smells, endless queuing, crowds of diseased, dying &/or overly emotive people. On top of that if I'm with someone else I have to mask, be comforting & look out for their welfare. It's really stressful and exhausting - and that's not even factoring in the medical reason for the visit (often bad news in our family).

    Despite that, getting someone compliant to an appointment is definitely managable...

    I can plan the route, consider toilet stops, prepare the car, perhaps even do a test run at the same time the day before and go inside to see how the check in/queing works.

    I can make sure they get up in plenty of time to wash, eat (if permitted) and be ready to go at the appointed (earlier for contingency) departure time.

    ie: I can reduce as much uncertainty as possible. I may not be able sleep 1-2 nights before the day, but I could do it.

    TearClimber said:
    The family member is quite a non-compliant patient

    But... WTF do I do after all this planning, anxiety and mental energy if the patient doesn't get out of bed on the day? Or won't get in the car? Or starts yelling at me? Or hurting themselves? What if we get there and they run off? Get Hostile? Meltdown?

    I can't fathom even sane peoples motivations & behaviours - I just kind of guess how to act/respond based on experience... but even that goes out the window when dealing with someone irrational.

    I'm sitting here stimming like crazy now just thinking about someone else having to doing it (well actually it's probably because I'm remembering past experiences).

    Now I don't know nearly enough about you, your partner or your un-cooperative patient... but some options might be...

    • Accept the patient might not make it to the appointment - this takes a little of the pressure off your partner (who may then have a better chance of success)
    • Work through any likely bad scenarios and how your partner should handle them. Ask your partner which aspects he is most stressed about and perhaps ask here for more specific advice.
    • Do what's required to improve the chances of the patient complying. Sedatives? bribery? Another person to assist?
    • Talk to patients GP or care team for assistance - patient transport, mental health team or perhaps even home visit?

    I wish all three of you all the best.

Children
  • over 2 years ago in reply to moon

    Thank you for this detailed response. It has given me a lot to think about. The appointment was unexpectedly pushed back but we are facing the same situation in a couple of days. I think that accepting that he might not make the appointment and that my husband will do his best is a good shout. I will let my husband know that if things get too much on the day, he can ring up and postpone and then perhaps we can deal with it together another time.