I’d like to collect the research on stress in carers or ‘caregivers’ and see how much of it attributes the stress to the way we are treated by public bodies. A lot of the small amount I’ve read seems to confirm that carers need a break, they need support etc and that the psychological effects are significant.
I did a very brief list in my head, of the last 11 years, just jotting down the major stress points. The first 18 months were horrendous, and scoring out of 10, my son and I both had top marks for ‘difficulty to care for’ and stress levels.
But as I went through the years in my head, I realised that I couldn’t have 10 as the maximum score, because there have been times when I’ve felt more stressed than I did back at year 1, when I thought things were the worst they could be.
I couldn’t draw it, so I’ve put it into a chart (didn’t really know what I was doing, and some of the figures are in ££s, which I can’t suss out how to change, but never mind. Maybe it’s a sign that all things equate to ££ in this game??)
Just for clarity, I consider zero to be what I’d have scored with my second child, but that’s not to say I think anyone having a non disabled child has it easy. Each score has a very wide range from start to finish!
The majority of the increases in my stress, haven’t been as a result of my son’s ‘condition’, health or illness; they’ve been because of unavoidable interactions with public bodies. Later on in the expedition, Alfie became very difficult to care for, because of his ‘behaviour’, which increased my stress levels, and which we now know was as a result of the ‘behaviour’ of public bodies.
The upshot, is that at a time when my son is really coming into his own, (and yes, he is still hard work to care for) and his care needs are quite stable, my stress levels don’t seem to be adapting to the positive experiences his progress brings. I’m in the mysterious world of EHCP land at the moment, and this is what is causing the stress I’m currently experiencing. I shouldn’t be experiencing this stress, because I’ve got support, I have respite, I’m getting more sleep than I’ve had in the last 10 years. Public bodies who treat parents like me with contempt, flout the law, bend the rules, move the goalposts are adding to the stress we accept as normal (when it really is far from normal!) and often adapt to because it’s stable and we’ve learned to cope at this level (even though it could be much better) and they are killing us. Cutting our life expectancy by years.
Research should be done into why public bodies are being allowed to kill unpaid, (usually) family carers. Many carers know the system inside out, but we are in a no win situation which makes us powerless. Public bodies rely on parents/carers giving up, and there are times when I feel like doing, but I never will, because I couldn’t live with myself if I did. Research should be done into why public bodies are allowed to get away with what they do, and I really mean local authorities, although other public bodies are just as bad. Again, the disabled person is portrayed as the ‘problem’ and that’s rubbish. It’s the people behind the services who are the problem. The cuts don’t help, but let’s call a spade a spade, there are just some horrible people who find it easy to make things as difficult as possible for others, and that kind of attitude is never changed by funding. Perhaps the research would cover the thought processes of such people.
Is anyone interested in conducting this research?
Please let me know.
It's always been done like this 
Thank you for this. I can identify 100%. After 8 years of what I can only describe as being in the midst of a dirty war, my son finally has the relatively cheap (compared to much of the ineffective, costly but crucially provision that fulfils the status quo and prevailing attitude that ensures no accountability, no measurable outcomes and importantly no genuine partnership with parents) provision that he needs to thrive.
And now he has it I know that I am difficult. I am cross. I am suspicious and I am anxious from moment to moment to make sure I spot in a timely fashion before it damages my child, any return to the kafkesque-like world I was forced to live in. I test the patience of very good people, assuming that their professional judgement is based on a desire to rob my child of his life chances, stitch me up as the one to blame for his needs, contact those on our future path to ensure ranks are closed.
My stress levels never can return to normal, as I have moved from the disbelief that people in authority can be so barbaric to disbelief that they can be competent and kind.
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Far more eloquently put than my blog! Yes, I feel your pain. We are aliens don’t you think?
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Extremely thought provoking as ever DK. There was a recent synthesis of qualitative research on experiences of carers of children and young people with learning disabilities and challenging behaviour. One thing they found was that services sometimes made things worse, not better. What a stark message. Id be interested to see what research has been done on ‘determinants’ of stress in parents of kids with disabilities. When I’ve discussed with researchers, seems to be acknowledgement of two broad issues: stress from navigating/engaging with services/professionsls; and inherent stress from parenting a child with disabilities. BUT, seems to be the thinking that the former is not possible to address (certainly at the individual level), so we should do what we can about the latter. What do you think about that?
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Thanks for your comment Jen. It’s difficult for me (personally), to separate the two things really. The built in things such as emotional/physical/practical difficulties will always be there, but in a society where we have a social care/education/health system available for all children and their carers, and which I very much believe should always be available, navigating/engaging with services (or ‘the system’) is unavoidable and determines how well these built in difficulties can be managed so they should be seen as the same in terms of action. It’s never going to be plain sailing, but as I said in my post, when the level of stress is stable, (and this suggests the stress levels are at the minimum they can be) I have ways of coping which to me can be ‘the norm’, even though they are nowhere near normal!
So for example, ‘grief’/sadness, anger, the physical demands of having a child who needs help with every aspect of life, or the constant stream of appointments and bureaucracy and paperwork and the feeling that you are living in a goldfish bowl (i.e. Engaging with services, navigating the system), are, for me, inherent, and pretty much non-negotiables but which can, to a varying degree, be managed (not saying they are easy!). However, the extent to which they are manageable depends a lot on how the services (and I’m not talking about the ‘dream, gold plated, Rolls Royce ‘ services, but the regular services we’ve come to feel grateful for, like education, health & care 😉) engage with me. It’s personal. I don’t mean they don’t like me (but that’s probably true), I mean they seem to consider themselves not human and therefore not expected to treat me like a person. They are ‘the system’ and any human qualities like openness, fairness, consideration, etc have gone, and are being protected by a faceless system, which is accountable to no one.
That’s my personal feeling, and I’m pretty sick of it at the moment, but being more objective, the reasons why parent/carers find the system so hard to navigate is pretty well documented in SEN (pre green paper, children & families act..) but it never addressed the issue of accountability, and why this is allowed to cause such stress for parents.
So, the people who think they can’t do anything to help improve the way parents/carers navigate or engage with services, should be saying ‘but WHY is it so difficult?’
I feel bad at times, tarring everyone with the same brush, but I’m fighting ‘the system’, which prevents the good people getting any credit. Perhaps the stark message, that services, not cuts to services, are harming people who they should be helping, will encourage more of the good people to raise their voices?
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I think that it is the professionals attempts at dealing with the latter that causes a lot of the stress of the former. Leave the parents to be experts on their own children. Professionals need to listen genuinely to their request for help and provide for them rather than try to bend what they say into current service provision which is in my opinion what causes the stress of feeling misunderstood, isolation and complaints which are thrown back at the parents as being ungrateful.
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Thanks Starlight McKenzie. I agree with this! I think this trying to put a square peg into a round hole comes from a basic lack of respect. They may have constraints within their service, but instead of saying ‘there is no x, y or z’, they lie and treat you like an idiot.
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I do think you’re right Diane. The two cannot be separated. My child became so much more difficult to care for when the authorities were failing to communicate, being obstructive, refusing to work with me. His difficulties increased through unmet needs, and my difficulties increased through the way that manifested at home plus the additional stress I was under to try to address this with those authorities that were making our lives difficult. My behaviour at home subsequently was therefore also not optimal and no doubt contributed to some of the difficulties I faced there.
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I can empathise. It’s so frustrating though, why the behaviours of ‘professionals’ are rarely questioned, when parents will often be seen as ‘difficult’ or ‘challenging’, just because they question.
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I think the foolishness underlying most professional/service nastiness falls into 3 main categories:
1) Inability to bear or understand hard problems eg involving uncertainty, difficulty, complexity and unfixability. Resulting in misjudgement and high-handed blindness to real needs.
2) Arrogance: the need to be ‘in charge’, regardless of harm done; eg the belief that only they are right; judging others on minimal information; playing Lady Bountiful in deciding who is ‘deserving’ of resources
3) Status and games: using people as pawns for one’s own ends; eg cutting disability benefits to play to the tabloids; giving false evidence at Tribunal to further your career; attacking bereaved families who make a fuss
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