'Refusing help'

[Cheetarah]

Something I've been hearing more and more of from non-disabled people is that there is a disabled person close to them who refuses help they need to be independent.  I'm not saying that isn't possible, there are people that haven't come to terms with an impairment they've acquired or been diagnosed with.  Maybe some of them really do prefer to have other people do things for them but I feel suspicious about some of these claims. 

I've seen an organisation for brain injured people and their families report it's common for partners of people with an injury to claim that they aren't doing all they can to help themselves.  Counsellors have to show the spouse or partner that the injured person is doing the most he or she can even though it isn't obvious.  Then I saw a woman online say that her husband refused to use a frame or wheelchair and that meant they still couldn't go out and do the things they used to, a couple of years after his accident.  It seems to be common when people become disabled.  Also a large number of people with mental health conditions won't take medication.

I don't pretend to have experience of what it's like to suddenly lose much of my mobility forever.  What reasons would someone have for deciding not to use a stick/frame/chair?

Is it an overly proud/ selfish reaction on his part in your view or is it understandable?

I hope none of this comes across as judgmental on my part, my loved ones are my priority and I sometimes wonder if if I'm doing all I can to cope with my condition for them.

[Fiz]

no medication for mental health conditions are side effect free, many people find the side effects intolerable, more so than the mental health condition itself.

[lankou]

no medication for mental health conditions are side effect free, many people find the side effects intolerable, more so than the mental health condition itself.

I know someone with serious mental health problems who after a new clever clogs GP changed his meds, ended up in a siege situation with his home surrounded by both a police and mental health "swat squad."

[Yvette]

I know someone with serious mental health problems who after a new clever clogs GP changed his meds, ended up in a siege situation with his home surrounded by both a police and mental health "swat squad."

I am not surprised.

[Yvette]

I have been told (while I was a patient on a fracture ward) of so many elderly people who refused to have a pendant alarm to summon help if they fell over.  Several of these people fell over and had to stay on the floor for hours/a couple of days until they were discovered.

My own mother, at the age of 79, when she came out of hospital after being diagnosed with cancer (which was too far gone for her to have any treatment or surgery) refused to have a pendant too, even though she had a history of passing out and having some very nasty falls. 

I explained that having a pendant would put my and my sister's minds at rest in case she fell but she refused.   My sister visited her every day but it still meant that our mother could have been lying on the floor for almost twenty four hours on her own should she pass out just after my sister had visited.

I lived almost 150 miles away and was very worried about her.  But even though I explained to my mother that I was going to arrange for someone to visit her to discuss how the pendant works she would not let them in the house. 

In the end, I took unpaid leave from work and moved in with her and looked after her until she died.

Yet, I have been wearing a pendant since I was in my forties.  I don't see it as a loss of my independence - indeed it gives me independence - the independence to live in my own home because I can summon help whenever necessary.

But many older people do not see it in that way and I really do not know why.

[Jockice]

Hi Cheetarah. I don't think our paths have crossed before. In my case, your piece should be headlined Refusing 'help' - that's because not all the 'help' I get is actually helpful, in fact some of it is downright dangerous.

I usually use crutches (although it's a wheelchair if I have to do any distances nowadays) and have to be very careful because my balance is poor and my back (and sometimes my knees) can just give way unexpectedly. It's like being on a tightrope all the time and if you're on a tightrope the last thing you want is someone asking you why you're on a tightrope, what it's like on a tightrope and if you want help with walking on the tightrope. And then someone decides that you're not safe on the tightrope and suddenly grabs you....

Yes, I know people usually mean well but it can be a bit wearing when you explain over and over again that no, you really don't need help and the other person decides that you do, causing a fall. Which of course in their minds proves their point, that I'm not safe on my own and really needed their help.

Admittedly I do fall of my own accord sometimes, but even in cases like that it really is easier if I'm just left alone to get myself up. People I know well know this and just leave me to it. But a few weeks ago I had a fall in a Spar shop (a crutch slipped on a wet patch, I knew what was happening and went down very slowly) and the staff made such an enormous fuss (despite me saying repeatedly that I was fine) that my entire body tensed up and I was hardly able to move. They were going on about 'do you want an ambulance or someone to come and pick you up?,' No, I wanted to be left alone. It really would be better. Trust me, I know how my body works. And yes I realised that the shop had to cover themselves in case of legal action or anything but this was totally over the top.

[oldtone27]

I 'work' with a number of visually impaired people and recognise what Cheetarah is saying. Often the reason is, as Jockice says, that over zealous helpfulness is simply distracting, and possibly hazardous. This seems more common among those who have had their impairment some time so have worked out how to cope with it in their own way.

For the more recently impaired I think they are simply frightened, or at least wary. Frightened of loosing their independence. Unsure how to cope because they haven't had time to adjust or to learn the necessary survival techniques. Uncertain in some cases as to how their condition might progress. People who are frightened tend to withdraw into themselves. I think it is an instinctive reaction to ward off threats. In those circumstances any approach can seem threatening.

I imagine this applies equally to other forms of disability too.

[devine63]

Hi Cheetarah

this is a very complex issue I think.  Certainly as Jockice and others have said, some "help" just isn't helpful - for example a friend of mine is blind, on several occasions he has been grabbed by the arm by total strangers (who did not ask) and marched across a road just because he happened to be walking near the crossing - and on two occasions that sighted person has walked him in front of a bike which then hit both of them.

The other thing that others often don't / can't recognise is the extent of the problems one can have with fatigue.  See
http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/  for one example.

You asked about why someone would not want to use a wheelchair or other walking aid: sometimes it is about their own attitudes to disability - sometimes there can be lots of resistance to the idea of being seen as disabled, it's a huge change to the person's identity and not something they chose.  Sometimes people have a view which (if they could verbalise it - which they can't its unconscious) is essentially "I'm sick / disabled now so other people have to do everything for me".  I have an example of this: my great grandmother suddenly "took to her bed" when she was about 70, as far as we know there was nothing actually wrong with her, but she decided she was "bedridden" and my gran had to care for her.   I barely remember her, so I can't tell what was really going on.

Then there are examples like the one Yvette gave - and I'm not trying to be nasty here, just making an observation - sometimes people refuse things which would help because they are trying to manipulate others - e.g. trying to get a particular relative to come and live with them and care for them, perhaps because they don't want to say it outright ...

Then there are others who have a poor initial experience: one friend has MS, he was starting to have trouble walking, so we encouraged him to try a wheelchair for the afternoon when he and his wife went to an event (a country fair) and he hated it.  He's a tall man, he hated suddenly being at the level of others' waists, the crowd constantly blocked his view and meant they could not get close to stalls or the ring to see anything.  Plus people ignored him, they spoke over his head to his wife, etc. etc.  it was ages before he was even willing to try the wheelchair again....

I'm sure there are other aspects to this too
regards, Deb

[Jockice]

Someone I know on Facebook recently put an 'inspiring' link to a video of what appeared to be a school sports day with a disabled boy taking part in a race, and being lapped by the others who all finished ages before he did. However, then the other competitors joined in running with him, cheering and clapping as he went along.

Dunno how anyone else on here would feel but if I'd been that boy I'd have been embarrassed to hell...

[DarthVector]

Sometimes, people with slowly progressing disabilities may not realise just how hairy things are getting until something bad happens. I didn't start using a mobility cane for my visual impairment until I walked right into someone at full speed without ever knowing he was there. I knew I'd probably need a cane at some point, just not that soon. I didn't hang about after that, though - I went to the local blind persons' charity and got the cane within a couple of weeks, so I could at least use it as a symbol cane and get used to carrying it around while I was learning to use it properly over the following six months or so.

Everyone who knew me was shocked when they saw it, because I seemed so competent and unaffected by my sight loss. There was no suggestion of "refusing help" - literally no-one knew it was necessary. Even now, several years later, I still confuse people with the high level of confidence I project as I move around, despite now being legally blind.

I still move at ramming speed, too :)

[NeuralgicNeurotic]

Hi there Cheetara :-)

I'm regarded as someone who has a good track record of complying with treatment, but can identify with what some others have written. I have refused to take medications that have caused intolerable side effects - the first antidepressant/anti-psychotic combo I was prescribed, for instance, and the first medication I was given for pain control. As you become more experienced with doctors and specialists you do learn how to 'refuse' without it looking as though you're just being awkward, putting it along the lines of 'this really isn't working for me, is there anything else we could try?'

I have experienced 'help' from well-meaning but misguided people, especially with regard to having ambulances called when I'm having a panic attack. It's not often possible to convince people that I'm not dying, it just looks (and indeed feels) as though I am. Sometimes shop managers or assistants feel the need to call an ambulance 'to be on the safe side' fearing that they or their company might be liable if something happens to me on the way home. That's understandable, but annoying.

As for using mobility aids, I am happy enough to use crutches and a scooter, but felt very apprehensive about being assessed by my local wheelchair service. It wasn't that I don't want a chair - ending up in casualty 3 times in as many weeks because I'd fallen indoors and hit my head was all the convincing I needed, but I felt guilty about possibly getting one from the NHS. I kept telling myself that I wasn't disabled enough to warrant NHS help, and that I should try to buy a chair myself. My GP was very good about telling me that if I really 'wasn't disabled enough' the Wheelchair Service wouldn't even have agreed to assess me.

I felt the same guilt about applying for DLA, and got the same response from my GP - that if I didn't need the help, there is no way that she would support the claim, and the folk here had to talk be into applying for the Severe Disability Premium, as I had the same feeling that others need the help more than me, and that I'm not really worthy of it, so despair and a sense of worthlessness can be involved in the apparent refusal of help as well.
 
That was all a bit rambly, so I hope it made sense!

[Defying Gravity]

This is only anecdotal but I come into contact with a lot of older people and their families, and I think the experience of becoming disabled with age is, or at least is perceived to be, different to becoming disabled when younger. I very frequently meet older people who have laid on their kitchen floor all night after a fall, and yet won' t use an alarm or a stick. I'm also often told that someone is too 'proud' to use a mobility aid,and that they'd rather stay indoors for the rest of their life than use a stick or a wheelchair. I also often hear older people tell me that they've lost the confidence to do certain things. So the reasons are complex I would say.

[Peggythepirate]

... a disabled person ... who refuses help *they need* ...
... for *partners* of people with an injury to claim ... 

For some reason non-disabled people, including random strangers, think they know best about what disabled people want/need. What gives them more insight and knowledge than disabled people themselves?

It is not the function of disabled people to be vehicles for other people to to feel smug and superior.

Know-all non-disabled people should shut up.

[Sunshine Meadows]

Cheetarah,

Welcome to Ouch Too.

What reasons would someone have for deciding not to use a stick/frame/chair?

Reading some of the replies people have already given to your opening post has helped me understand my own opinion better.

When a person becomes disabled or their disability increases their sense of identity is affected by the loss of options they previously had. It is a bit like someone is made redundant from a professional job, they lose income and they also use the sense of identity their job role and general lifestyle gave them. Say a person who could afford to go to the gym 4 times a week suddenly cant afford to go to the gym do they still keep exercising by for example going jogging in their local area? Additional to this say the person loses their well paid job but still needs to pay the mortgage, so they take cleaning jobs which are physically demanding and this means even if they were the sort of person to go jogging they are too tired to do so. The activities they did in the gym meant they knew other people their, had friends or maybe family they went to the gym with. Seeing those people continuing their lives whilst theirs has changed so much will serve as a reminder of their loss and also affect their feelings of self worth which in turn affects what they will and wont be prepared to do.

Deb's point about her friend with MS is a good one because it illustrates the a person who becomes disabled can't be the same person their once were but have to work out and maybe work on a new version of them-self.

Also there is the possibility that a personality trait a person already have is brought to the fore when they become disabled. For example. is a person like things do 'just so' and they can no longer do it for themselves  so someone else helps them but it is not 'just so' and the person finds that they would rather not have something happen if it is going to happen the 'wrong way'.

In general newly disabled people and people who are getting older in their insisting disability do need help and patience to find who they are going to be. This can be very scary for partners, families and friends because they have the grief and sorrow attached to loss, but the person they love and care for is not dead.

I think maybe some people dont want to wear a pendant alarm because they are too proud and or cant accept they need help, but I also think some people might refuse because they dont want to think about what happens if they press the alarm and no one comes.

Jockice,

that my entire body tensed up and I was hardly able to move.

This happens to me a fair but to especially when in a narrow space and someone wants past me and they faff about in such a way that means I end up trying to move out of their way and sometimes fall over. The weirdness of it is both my sister and Mr Sunshine expect me to move out of their way or go round them when in fact they should move out of my way. Maybe in part it is my fault because my nature is to notice the situation and move first.

Actually that is a point maybe newly disabled people have a hard time needing to think ahead like we do, eg when I furniture walk, from the couch to the doorframe along the wall hold onto the sink and voila I reached the toilet.

[Dic Penderyn]

When you become disabled you tend to loose a lot of choices that you once could make,  it may be the refusal of help is one way of asserting your self and maintaining some degree of independence and control of your life even if that is somewhat of an illusion.