Respite care failure

M is not particularly good at communicating, while she may have a solid reason for any decision, this is often no communicated well to the rest of us.  So when she was reluctant to call the crisis team, I thought she was blocking our attempts to achieve safety, or possibly protecting the young ones in her care from the trigger of going to hospital.  I was wrong.  Her greatest fear was realised, the crisis team can’t do anything to help us stay safe.  She wasn’t worried about the respite care or the hospital, she’d prepared her young ones for that; she was worried about them not being able to do anything.  In some respects, what happened was worse – we had several phone conversations with a very nice and understanding crisis nurse who explained about coping mechanisms and grounding techniques, but informed us that there were no respite beds available.  After referring to our notes and talking to us for over half an hour, she assured us that the nearly full local psychiatric ward wasn’t the right place for us.  Instead she encouraged us to continue with our coping mechanisms and taking it a day at a time.

It was the worst case scenario, the crisis team were trying their best, but don’t have the resources to help us.  The were polite, friendly and called back twice to check on us, and to try reassure us that we can do this.  It was devastating.  This was M’s biggest fear… we need safety and we can’t get it.  We’ve now officially tried all of our options.  There is nowhere else to turn.  Sometimes when we’ve called the crisis team, the service has been so bad that it’s kicked us into a release of anger that has driven us through the suicidal ideation and out the other side.  It’s acted like a release on the pressure valve.  We couldn’t even get that today… the nurse was so polite and trying to suggest ways to get appropriate boundaries in place with the mother etc.

In many ways our suicide attempts have appeared impulsive… there’s been a final trigger that has pushed us over the edge.  But the plans are well thought out, just waiting for that final trigger.  This is what we fear may happen again.  In many ways we’re calm and functional – when we told the mother we were calling the crisis team she asked when things had got bad again, we explained that they’d never been good.  I know this could be an indication that the mother has no clue as to our true level of functioning, rather than any indication of how we appear to be coping, but it gives a hint as to how we appear to the world.  The crisis nurse could see through the veneer, she said we sounded in trouble, she just couldn’t do anything about it.

When the crisis nurse confirmed that there would be no assessment and there were no places, we were in tears.  We were crying because we gave up on getting help.  We know that no one can do this work for us, but we’d really like some help to get us through the rough patches…

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7 thoughts on “Respite care failure

  1. I’m so very sorry. This is not, though, a worst case scenario… yet. I know it’s completely unfair. I am angry and upset about you not being able to get the care you need. But you cannot allow the worst case scenario to happen. I don’t understand what’s happening… In physical terms, it would be similar to saying that you are having a small heart attack, but not yet a massive one. I think now you need to check on the referrals that your doctor put in for.

  2. Hi Paul,

    Please don’t get angry or upset over this. We should have gone into respite a week ago, but M put the brakes on it until the mother was here to look after our cat. She also said that she would have preferred us to go to hospital rather than respite. Although the hospital is more triggering, it’s a safer environment if we were bumped upstairs to the secure unit. The secure unit is a place where calmness is enforced through patient management. That is the type of environment we need at the moment. This is what M had hoped would happen – we’d get to hospital and Frank would come forward and get us locked up in the secure unit. It may sound manipulative, but that is what she saw as the best case scenario. The respite places aren’t set-up to deal with trauma survivors or those with suicidal ideation… They also would have been a new and scary environment for the young ones, so while better than being left at home, they probably would have been triggering and scary for us.

    I wish I knew a way forward. I really not set-up to deal with this alone. Both Liz and my psychiatrist are out of reach, and the crisis team have the recommendation from my psychiatrist that I might need respite.

    My fear is that we will survive this without any outside help, and in the process more layers of distrust for the mental health professionals will be put in place. This time we’ve been nearly screaming for help and looking for it, and been knocked back at almost every turn. I don’t know where to turn now…

    Take care,
    CG

  3. I’m so so sorry that you don’t get the help you need. It makes me sad to read what has happened. In my country, the psychiatry has the obligation to take up people who need help. I was forced to use this possibility, although it is the last alternative for us, because psychiatries trigger the young ones very much
    Please take good care ((()))

  4. Hi CG,

    I’m sorry that you reached out for help and found they couldn’t take you into respite when you wanted and needed it. That is very disheartening. I know it is hard to reach and get nothing back and how hard that is in relationship to needing care from the mental health professionals. Good and healing thoughts to you.

  5. ((CG)) This is just wrong. I can’t believe it. I wish I had some way to fix it for you or at least help get the safety you need.

    I am sad that you have been cut loose like this and incredibly angry at your mental health system.

    Please hang in – one day at a time, one hour at a time, one minute at a time if you have to.

    I fear the love of friends is a poor substitute, but I hope it’s enough to get you through this horrible time.

    Kerro
    xoxo

  6. I’m so sorry that the help you need is not available — it’s so terribly frustrating and deeply unfair. I suppose the only good thing here is that the crisis team did continue to check in with you, though I also entirely understand that this completely ineffectual kindness is not even close to what you need right now.

    When is Liz back?

  7. Hi everyone,

    I would usually reply to you individually, but I just don’t have the head space at the moment, please forgive me.

    We were incredibly disappointed not to get the help we needed at that time. But we got through those days and into respite.

    We’re still stunned that people would be upset about anything that happened to us, or that people would care. I know this is our insecurities and inferiority complexes coming through, but it’s still hard to feel and know.

    To answer your question David, Liz is back on the 13th of January. We’ve had some text communication in the meantime, but it’s been very sporadic and guilt ridden on my part as I worry about interrupting her holidays with my issues.

    Thank you all for your kindness, it helped in ways you will never know.

    Take care,
    CG

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