Published on 12, July, 2020
Something I've posted about before, I know, but because of the deep seated and longstanding issues within my family, I'm always on the lookout for further information. Now, I've just been watching this video on "The Burnout Recovery cycle", which admittedly will be useful to some to enable them to plan and cope. https://www.youtube.com/watch?v=aG_41uh-WAIAnd yes, It might have been useful for me in the past and I can see how it works for a well motivated individual like Paul Micallef. But, like many of the speakers and advocates I follow, there he is looking well groomed, organised and very much in control of his life. I accept that appearances can be deceptive and we don't know what goes on behind closed doors in a person's private life. But even taking that into consideration, this still feels very different from our family problems with burnout. All the speakers and autistic advocates I can find seem very well informed and motivated, not to mention very well groomed and presentable. And within our family we see a very different picture. People who opt out or withdraw altogether, never rejoin society, major difficulties with personal hygiene and too burnout to do very much at all other than very basic things like eating and going to the loo. Motivation is low, especially given the mental health issues that then accumulate (unhelped by services who have been able to offer nothing - we've tried) and anything else is understandably a low priority (if basic survival is a problem, you're not going to be thinking about how greasy your hair is, for example). And they're not really in any position to use self management strategies such as those outlined in this video. If they were, they'd already be well on the way to recovery, with only minor support from others. So... Is this really ALL burnout? Should the term have subdivisions (e.g. to cover a range from brief, episodic burnout that is amenable to self help to almost total collapse and withdrawal)? How can we best support someone in this situation? And where are the videos from people who've recovered from, say, years of burnout and needed significant support in the meantime? Is there anywhere that families can turn for more specific advice and guidance? It's very hard not to feel desperate about this.
Hi JB,
I'm so sorry that things are still tough but you are, and have been doing the absolute best you can. I wish I had solutions but alas I don't. All I can do is send love and hugs to you and yours.
H :-)
Thanks H. It feels as though my best falls short, which makes it feel pretty much the same as when it happened to my dad in the 70s. All of those years and I still don't know what to do. I think I've ironed out a fair few "what not to do's though!
Otherwise, we're simply holding steady with the approach I've mentioned before:
Maintaining a safe, comfortable, low arousal environment,
Low - no demands,
Good food + occasional treats,
Remaining as person-centred as we can, ready to listen and continuing to give occasional invites to shared activities (always refused, unfortunately, but my thinking is that it's better to feel included).
No fussing, no forcing, keeping it calm and natural.
Can't help wondering though - if I were channeling the perfect parent, how might this look?
Honestly? It sounds like you're already pretty close to the "perfect parent" in what must be an incredibly difficult situation. I really think you shouldn't be so hard on yourself. With the best will in the world, there's going to be a limit to how much you can do until your son is ready to take the next step himself -- at least, that was my experience with my own burnout.
Thanks Luftmentsch. It may indeed be that I'm hard on myself. I suppose I feel so desperate and panicked some days,especially the bad days but then sometimes just because it suddenly hits me how bad this all is, and this feeds into a deep sense of inadequacy. That's not to say that there's anything out there that might be more adequate to meet the needs of this situation, but I can't help wondering what other parents would do. I have no comparators and would be aghast to discover I'd missed something (although if I did I'd then quickly seize on it and make changes asap). The concept of readiness is probably relevant but I find it hard to accept as the years go by. When we were with mental health services for between 3 1/2 - 4 years, readiness and insight were referred to A LOT as the reasons why progress wasn't being made. And, of course, services can and do back off, citing a refusal to engage, unlike parents who are still left to cope as best they can.
Unfortunately my experiences with my dad show that a person may well never be ready and that's just what life is like. This makes me want to weep. I feel we're hopelessly lost and completely off the map here - a feeling I've now discussed with more than one therapist and which I can't resolve. I feel like a mother whale with a calf that's beached in shallow waters, unable to move, with me unable to help or, given the strong mammalian parental bond, to move away. At this point therapists usually resort to talking about self care, putting my own oxygen mask on first and relaxing, as if I'm not already doing these things (albeit between bouts of panic and utter helplessness).
So then I resort to reading around promoting readiness or pre-therapy, but even there I've not turned up anything useful. And all the info on burnout I can find, which somehow avoids the info that parents to adults need. Acceptance is an easy word but also something I need to come back to every day. I wake up each morning, my brain reloads and I jolt into wakefulness and think, " But this isn't acceptable! It's terrible!"