[Spinner]

A couple of weeks ago I began learning to be my boyfriend's care attendant. I am not a nurse or even a CNA, just a woman who is crazy in love and wants to do right by my man - who happens to be disabled. He has been disabled for almost 20 years, so he knows exactly what he needs to have done and how he likes to have it done. Me? I've never cared for an individual with a disability before so this is all new to me. The reality is that I love this guy like I never knew I could love and if he comes with a little extra work so be it, I am ready, willing, and able to rise to the challenge. Which brings me to my problem then my question...

A lot of the time when he is telling me what to do he does so in a tone and with a manner that makes me feel as though he thinks I am not real bright. He repeats things two and three times in different ways before I have had a chance to attempt to perform the task he has asked of me. For the most part I have kept my cool with the way he has spoken to me, but this morning I gave it back to him once during the process, then when we were done I told him that I don't do well with people speaking to me as if I am stupid.

So my question is; is this a common attitude that maybe comes from dealing with a constant flow of care attendants? Does someone living with a spinal cord injury need to be selfish during these times in order to be sure things are done right and to keep it all business? There are some things I am having a difficult time getting a hold of and I know it frustrates him, but the attitude he takes can be very trying for me at times. Have you (as the individual living with a disability or the carer) dealt with this? If you have what is your advice? Should I ask him to stop speaking to me this way or just accept that it comes with the territory of being a care attendant? Any input would be greatly appreciated.

This post has been edited by Spinner: 24 January 2010 - 07:23 PM

[ajl338]

Its really hard trying to give instructions to people. I used to think i wasnt very clever but over the last 4 years i have decided that i am clever based on the people i have met and how stupid i think they are. I have had a few PA's and they are there to do what i think off as simple tasks. Pre injury i could do them myself and they might take me 5mins and i wouldnt really have to think about it for example if i wanted a cup of tea i'd make one, i thought that if i asked a PA for one then i would get a cup of tea, i didnt realise i had to specify what cup, how much water in the kettle, which teabag, how much milk, its not like i really cared how milky it was i just thought that if you asked for white tea someone would automatically put the milk in but it isnt so. I find myself talking to people at work and giving them a step my step list when it isnt needed, but for some reason all PA's seem to have very little common sense is my experience.

I'm guessing after 20 years he has seen so much stupidity that he has just got into the habbit of outlining everything step by step, also it costs a lot of money for a PA so you want to make sure they work and dont waste time. I guess he is finding it really had to remember you arent being employed by him.

I think it might get easier for you as time goes on and he reaslises that he can just ask and doenst need to tell you every detail, also you will get into routines and understand eachother so wont have to say so much. Its also hard when you really want an equal relationship but one person isnt able to do asmuch as the other so relies on them.

Can he still have a PA in to care for him sometimes and keep you part of the relationship just that and not you totally doing everyhting for him

[Maltese Cat]

speaking as the girlfriend of a highly independent, self-sufficient L1 complete, I realise I am in a different position to you.

However, I can relate a little to feeling that you are being spoken to as if you are stupid.

I have to do very little for my boyfriend, but frequently I do things that will affect him, and that I need to do differently as a result of his paralysis.

For example, not carrying a saucepan of boiling water anywhere over his lap as if i slip he cant get out of the way. This needed pointing out to me early on and I realised it was a pretty obvious thing once you thought about it.

There are times when i feel I am being bossed around unnecesarily, but often there is a specific reason why things need to be done a certain way, or in a certain order. When I stop to question this I am met with the very reasonable response that if he had to explain his reasoning behind every single request then we'd never get anywhere.

Sometimes I see the reasoning behind something immediately, and sometimes I don't. If I've already worked out the reasoning I can easily feel that he thinks i must be stupid if i cant work out something that obvious, but when i havent realised the reasoning myself then i feel pretty stupid when it is pointed out to me.


What I am trying to say really is that your bf will be used to having to change a whole host of things in his life, and other people's actions are one of the most significant things that can affect him adversely. Being paralysed, or being around someone who is paralysed is a state that takes a lot of adjusting to. And it is very easy for you to do somethign inadvertantly that may have significant consequences for your bf.

He will not be able to tell which things you have already worked out for yourself and which you need a little help spotting, but he doesn't have the luxury of finding out through trial and error, as if you make a mistake then he could end up in a heap of trouble.

So when my bf tells me to do somehting in a certian way and i feel my god he must think i'm thick if he thinks i can;t work that out for myself, I stop and tell myself not to take it personally. He's had to deal with all sorts of people as he has adjsuted to life in a wheelchair, and some need some things pointing out, and some need others.

That said, you should not ever be made to feel stupid by your boyfriend on a personal level, and this is somehting you really must talk to him about so that you are both clear with how he can communicate better with you, and so that you can understand his communication better.

communication communication communication - its always the answer!!

[allis53ca]

hire a pa...before thats all you are

[Bob C]

Not knowing what the extent of your bf's disability is and what you are doing makes it a bit difficult to respond. Since he has been disabled for sometime, I assume he has had PAs doing his necessary care. From the experience of a number of people who are romantically involved with SCIs, I can tell you that for both his sake and yours it will be best if you function only as an emergency backup to a PA for any critical care that he needs. Even if you are willing and want to do it, what happens if you get sick or something comes up and you cannot be there? Second, if you are dong his bowel and bladder management procedures, your ability to be intimately involved may suffer. Finally, if you have a good relationship with him, you should be able to discuss how you feel with him, and if he loves you, he will respect you and back off. If you do not feel comfortable doing this, you are going to have a rough road ahead.

[cheri0261]

My husband was injured 6 years ago and while in rehab they really drilled it in him to make sure he always advocates for his care. Don uses the voice you talk about with me and I generally say something to him about it and he doesn't even realize he did. Also, he gets nervous about falling, his catheter getting pulled, etc.... and so he will at times sound mad or panicky when I can't see what he was sounding like that for. I think its just how it is because of the consequences if we don't do something the way they need or are comfortable with. Be patient, communicate how you feel with him.

[Tetracyclone]

I use an obnoxious tone at times when my hubby just doesn't get it- something I think he should understand after watching for 2 years. What I'm saying is, you often think you understand another's situation, but you may not in the details that matter to him, even though you may not see why.

Secondly, I have a pedantic voice I use at t imes to explain sequence. The tone is due to the fact that I am concentrating hard on verbalizing, and there is no intelligence left over to add the "I love you/I trust you" modulations to my tone.

[Quad65]

My wife and I have been married for 31 years and she's done whatever care I've needed during that time. I really boils down to basics; mutual respect and clarity. Each one also has to have a thick skin to a certain degree. The care recipient needs patience and must understand and realize the care giver is doing the best they can and is trying to help. The care giver must realize that it may be difficult for the recipient to clearly explain the 'whats-whys-hows' of things that need to be done. Being on the receiving end, the recipient may feel embarrassment and unintentionally demeaned. Dependency is not a fun situation. Courtesy sometimes flies out the window in a tense situation, like getting your pants off and on the commode before Mr. Brown makes a sudden and unwelcome visit.

That said, the recipient has no right to sound condescending, patronizing, or talk down to any care giver. It does take time and it is an on-going process to work out a mutually comfortable and respectful care routine. Everyone, care giver or recipient, has a right to their personal dignity and respect.

[Spinner]

Thank you for all the great replies. A small update: I told him that I didn't like the way I was being spoken to and he was very receptive to my concerns. I am getting better and better at helping every single day. He is trying hard to be patient and not speak down to me and when I sense he is getting frustrated with me I stop and ask what I can do differently. I really think we are going to get through this.

Just for background purposes, he has another care attendant who does his bowel program. I have learned how to do it just so I can step in if need be, but it is not part of my regular responsibilities.

Thanks again everyone!

[Inger]

Glad that this situation is improving for you. I've been assisting my fiance with his ADL's for the past 7-8 years, and things do improve with time. I was fortunate in that I'd had some provider experience years ago when I was just out of college, so I wasn't brand new to the notion of giving personal assistance. Russ' injury happened over 20 years ago, and I know that by the time I arrived in his life, he'd had more caregivers than he could count, and had repeated the same sets of instructions to all of them at least once or twice (I can't help but think that this sort of thing would annoy the most saintly person). Although my really getting his routine took some time (and probably more than he knew it should), now that I've done each piece of it several thousand times, we're setting land speed records.

It sounds like he's a patient and understanding fellow, and you're wise to be honest about how the way he's presenting directions/instructions is making you feel. While he's had to work with people to manage this for many years, I'm sure he understands that this is "new" to you. Don't fret, take your time, and you'll have a routine down in no time.