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Families not believing disability

Feenixrocks

Morning,

Have not posted on here often but am having a problem with my family at the moment and I just wondered if anyone else gets the same. Am disabled with arthritis and am on the higher mobility pip. My mum is currently in hospital and unfortunately my dad has dementia, so my mum and sister have basically said caring for him is on you.

Some days I cant stand up or drive, my husband is my care and is brilliant (I am so grateful to him) and I have explained this to them so many times and hey have seen me struggle - my husband pushed me in a wheelchair to visit my mum in hospital a week or so ago but she still thinks it is not real.

Yesterday, my mum got one of her neighbours to send me a lot of messages that basically had a go at me for not caring for my dad. They were pretty brutal and they really upset me. I called my mum who basically said we have all chatted about how you should be doing more physically to help and we are not happy with you at all.

I feel dreadful, life is such a battle some days, especially trying to hold down a job too (thats not easy with a disability) and for my family to say "no actually you are just not good enough at all" has made me feel really, really low.

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Comments

Kimi87

I am so sorry your family have made you feel this way. They are the ones who aren't being good enough towards you, not the other way round. Their treatment of you is the problem, not your inability to offer more help with your Dad.

Unfortunately we cannot change how other people behave, only our reactions to that behaviour.

I would recommend blocking the neighbours number so you no longer have to receive abusive messages, and adopting a broken record technique with your family.

This involves you giving the same response, and not entering into any discussion or debate "I am too unwell myself to care for Dad physically". Repeat repeat repeat.

Hang up the phone/stop replying to messages if necessary to reinforce that you will not change your response.

Amalegra

Please don’t feel guilty! You are doing your best and are to be admired not only for working when you are so disabled, but also for your caring nature and obvious concern for your father. Your family must accept that you are unable to care for him and perhaps a more sensible route would be to enquire about help from social services. They should assess his needs and provide appropriate help. Also the Dementia UK charity may be able to assist you with suggestions and advice. There may also be an Admiral Nurse who specialises in dementia care in your area. I had a similar situation with my father when my mother was unable to adequately care for him and my sister and I lived too far away to be able to help. I wish you the very best not only for your own future health but for the situation in which you find yourself with your family. Don’t let the naysayers get you down! You are doing your very best in a very difficult situation which is all you can do.

ryleyyg

https://forum.scope.org.uk/discussion/134972/families-not-believing-disability

I get this, I have a learning disability get told that I should be having a job, and that I am lazy.
but because of my condition it can cause me to have serious mental health issues, like anxiety and depression.
every time I meet my family, sometimes they mock me for not having a job or doing much etc. but when I go out for a day and do something long for a day, I usually end up sleeping and isolating myself as I feel sick afterwards.
I think some people find it hard that just because we have a disability doesn’t mean we are faking it.

MCMikey

Hi. Sensible advice made above.

My thoughts, and this depends on the circumstances such as if it's relatively temporary your mum's in hospital and if ordinarily she's the main carer, and how far your sister lives away. If your sister lives say couple hundred miles away she could come down and do a few weekends, or extended weekends taking a few days of her holiday leave (presuming she works). On that theme, if she lives abroad (regardless of where) she could take her major annual leave and fly over to look after your dad for 2, 3 or 4 weeks.

Why not request this, your sister is putting excessive demands on yourself. She'll probably respond with her reasons and something along the lines of that's too difficult because xyz, whilst you can reaffirm of what's really difficult is having a disability, trying to maintain a job with that disability and having to look after your dad.

IrishManc

Dealing with mental health issues and hidden disabilities like adult autism reflects the failure (stubborn refusal) to understand and change attitudes among the general public, where no amount of education being made available is ever going to change attitudes “there are none so blind as those who will not see” “you can bring the horse to water but you cannot make it drink” - family bullying and abusive behaviour within families is a terrible situation to deal with, which I can relate to and empathise with as an older Irish gay man from an Irish Catholic cultural background who has worked in supermarkets for over 30 years, so I’ve had to endure more than my fair share of bullying - since my own (later in life) autism diagnosis in 2021, even though I’ve lived in the U.K. 24 years, I get a lot of psychological and emotional “pressure” (abusive behaviour) from certain family members back home in Rural Ireland (operating under a totally different and outdated system) and misquoting certain aspects of traditional Irish Catholic Social Teaching and Irish cultural traditions and cultural norms to excuse and justify their abusive behaviour - attitudes along the lines of “you are wrong, it’s just the autism talking, cop on to yourself, cop yourself on” are just some of the abusive comments via voice calls, email and text that I commonly get when trying to explain anything to them, as autism requires a great deal of self-advocacy - many of the issues arise from not having had a post-diagnosis adult assessment and therefore no appropriate adult autism support - the abusive family members referred to here want to send a whole team of priests and nuns over, along with police officers, as they are totally convinced that the only way to manage autism is by a system of ultra-strict and restrictive military style discipline, where the person must never be permitted to live alone, must never be agreed with in anything nor on any issue “robust challenge” “positive” as they are also totally convinced that autism is caused by not enough harsh discipline in childhood and not a harsh enough upbringing

yves

IIt's Very unfair on them to pressure you like this. You have enough going on, aswell as trying to hold down a job. I would speak with social services or Dementia charities to see if they can help/advise. In the meantime, block the neighbours messages, it's none of her business and she shouldn't be getting involved.

bookrabbit

Your Dad clearly needs help from social services. Even if you were to try you simply wouldn't be able to do everything he needs so you would actually be preventing him getting the help he needs whilst degrading your own health and your ability to cope with everything on your own plate.

Your mother is probably simply in denial about the necessity for outside help or doesn't feel capable of getting it. Suggest the neighbour helps her get it rather than waste time harassing you.

quinceorange24

Hi, everyone.

I really can't understand why people in your own family can by so uncaring.

I like a lot of people know what it's like to be bullied, I was the nearly the whole time I was at school by nearly everyone in the same year as me and no-one from my family stuck up for me.

Feenixrocks

Thank you all for your support, its much appreciated.

And just offering my support back for those struggling with things, its not easy is it?