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Frustrated - wheelchair politics

Hi all, Recently become a wheelchair user. I went out with my mother and she pushed me everywhere. No asking, nothing. So yesterday I had a hospital appointment and she took me. Before the appointment, I asked her not to push me. When I want help, I’ll ask for it. She agreed. We got there and she left me alone, for 5 minutes. We were going downhill, no bother, but within 5 minutes out comes an exasperated ‘oh let me do it’. I explained again that I can manage. I went to my appointment and thankfully they wouldn’t let her in, because covid. Finished the appointment, and we are going back to the car. Again, another exasperated ‘let me push’. I snapped back, no. I felt bad for snapping but how many times?! I explained that I found it patronizing and I need to learn to get used to it. She said, ‘I don’t see it like that, I see it as wanting to help’. I said, ‘it doesn’t matter how you see it, this is what I want’. She just will not leave me to do it myself. I am far more than capable of looking after myself. I don’t know how to get the message across. Any ideas? Thanks, Jen

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Please don’t snap at her? I can see her side of it. I used to be like this with my mother and in hindsight I should not have helped as much ,it wasn’t MS it was ageing .My thoughts were oooh if she falls when I am with her the guilt would be dreadful also (what would people think) to see me looking able bodied while she struggles. She is trying to save you from fatigue or accident. I agree with you , you need to manage it yourself. It’s what mothers do, they think they know best but they don’t Just try and tell her you need to practice to become independent and then one day you may be able to help her if she ever needs it.You accept she is doing it in your best interests, but it’s actually not… Dont hurt her feelings , fib if you have to ,tell her the physio or neuro or some other health professionals will be checking that you are able to do this. I am saying all this as a non wheelchair user

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I think when you first use a wheelchair you have to go through a period of adjustment and acceptance of it. For a long time I felt that using a wheelchair was “giving in and letting the MS win” and I wanted my independence and didn’t want any help. Please just realise that people, especially those who love you don’t like to see you struggle, and rush to help. Just talk to your Mum and explain how you feel about all this and that you are grateful to her for caring enough to help, but that sometimes it helps your self esteem to try to do as much as you can for yourself. I’m sure your Mum will understand. My daughter and all my good friends certainly did, and now I really need their help and haven’t antagonised them and lost them. Be patient and gracious and you will get through it.

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Hey tb don’t be so ungrateful… certainly accept any help from your mother. I presume you have a self propelled wheelchair,

therefore you will have plenty of opportunities to manage on your own. Just go with her flow!

Could you manage ALONE?

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Do you have to take mum with you to appointments? Is she your only option of getting there?

Dont tell her next time you are going anywhere and see if you can manage by yourself?

If you need her then you`ll have to put your tail between your legs and ask for help.

Simples!

Boudsx

You know I once decided I was going to be independent and not tell anyone about an appointment. I was really struggling to push myself up a quite steep slope into the hospital and someone jumped out of his car, left the engine running, and helped me. He said to me he hesitated to offer as so many times before he had been rebuffed rudely by a wheelchair user saying they could manage by themselves. He said that a few rude people had nearly made it so he didn’t feel like he could offer help to those really needing it and he didn’t like to see that. So please wheelchair users don’t be rude when people offer to help, as long as they ask first! They’re not trying to take your independence away, just being a kindly, helpful citizen. You might put someone off helping a person who really needs it.

Independence is of course good, and you don’t want to give up doing anything that you can manage, but pick the right battles to fight! If a bit of help means you have the energy to do something later rather than having to rest, accept it gratefully.

I tend to find people only ever offer to help when I feel OK. When I feel done in and would really appreciate a push, no on offers . When declining an offer of a push, I always make sure I tell them I’m thankful and appreciative of them offering.

With your mum, it’s great that she wants to help you. So rather than simply rebuffing her, are there any other practical things she could do that you can direct her to? That way, you’re both meeting your needs - your need for the independence, and her need to help.

Dan

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That’s mothers for you. Sit her down and explain gently why you would rather she only helped when you asked. I spoke harshly to my Mum once and it haunts me to this day, she’s 89 now and I cherish every moment I have with her.

Best wishes

Jan x

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I totally understand your feelings Jen. In the beginning my husband was like this. It was without doubt, the wanting to be helpful. As time went by, it was very much about wanting to just move a bit faster! I hated being ‘taken charge of’. MS had already done that.

I felt like an inanimate object as he would take the handles and drive me whichever direction he chose, without interaction with me. It’s definitely about the feeling of loosing control.

In the supermarket one day, I’d said I wanted to look at something in particular. I was pushed up and down the aisles carefully avoiding the section I wanted. As we approached the checkout I asked about my goods. The response was, “oh we’ve finished now and I’m not going back”. He is a good man and is my carer, doing everything domestic now, but that day I cried with anger back in the car. The solution for us was being given a motorised chair. It’s given me back some independence and I believe that’s the bottom line. What it’s all about.

Life sucks but some people can make it better:) I had to ask a neighbour that I had never met to help me off the top step of my house! It was pouring rain and my hand slipped off the railing, it was damned painful.

Be safe folks M x

I got myself a scooter because God love my husband and full time carer but pushing me in a wheelchair drove me crazy, for exactly the same reason as poppy, I would ask to look at something and get pushed passed it, drove me crazy, perfect solution a scooter, I’m happy now and so is my hubby.

Jean x

Absolutely. I have done for years.

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If she had said, ‘can I help?’ instead of an exasperated ‘oh let me do it’, it would have been completely different. I had explained previously that I can totally manage and if I wanted help I’d ask for it. It was the assumption that I couldn’t manage which really got me even after I’d explained before the appointment that I would really appreciate being left to try.

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Thank you so much for your comment. That’s the impression I got - she wanted to move faster. Someone grabbing your wheelchair handles is basically the same as you grabbing the steering wheel when someone else is driving

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But you need her to take you to appointment then? I think your being harsh actually. she loves you and cares for you, whilst you are together with her TAKING you for your appointment let her help you. how long is that in the grand scheme of things? Yes she got exasperated dont we all lol. but its just for a little while. not worth getting upset over. My daughter is like that with me actually so the other side of the coin thinks i am a nonce, but i just let her get on with it. because If my daughter did not take me yesterday to the vets i would not have gone. I need her support. I take it with grace. I dont like people helping me and i have electric wheelchair so not so bad but could not put in boot of car and neither am i able to drive, so she helps me when I need it.

she had to hang about for ages yesterday waiting for me but did it willingly. I was really glad she did. I help her in other ways.

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My partner does the same, You are her child explain to her that you she inadvertently making you more disabled by doing things for you. I understand this will be difficult for her. You are her child no matter whether you are 5 or25/35. It is what mums do.

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Needing help and wanting help are vastly different, whenever I want to jump down some ones throat for diving in to help, I try to think “what if the boot was on the other foot?” I would doubtless be shoving my way in to try and be helpful. So I do try to be polite and courteous saying “Thanks but no, and I appreciate the offer” whilst my internal monologue might be screaming all sorts of invective!

When my amazing wife jumps in to help , sometimes I explain that I need to struggle and that makes any small success all the sweeter. It is yet another thing to be aware of.

M

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My rule is: if someone wants to help, then (1) they should ask me first if I would like some help, and (2) they must listen to and respect my response. So if I say ‘no thank you (but thanks for offering)’, I don’t want them to persist in trying to help and I certainly don’t want them to intrude by helping anyway. Not respecting my wishes is deeply patronising, condescending and offensive.

I do not see why I should feel any obligation to be grateful when people try to patronise me and hijack me with unwanted help.

My independence and autonomy - such as I still have - matter to me and I want them respected.

Of course sometimes I say ‘yes’ to offers of help, when I actually need help. My point is not that I want to reject all offers of help (that would be absurd), but that when I say ‘no’, then it means ‘no’ and my ‘no’ should be respected.

I getting taken out without my daughters help i would be stuffed lol. i am classed as housebound. i see this is an older thread revived.