2 replies to this topic

[elisabeth]

I am a C5 quadriplegic, after my injury I moved back home after five years of independence at Uni and travelling the world and working. Don't get me wrong, I love my parents and my mother, but she is beginning to drive me crazy. Luckily, I have morning and evening carers which was difficult to acquire so thank God for everyone's sanity none of my family members do any of my personal care, but I occasionally need help with other things like emptying my catheter and eating/cooking.

My mother said she did not want a carer cooking because it would be too confusing to have an extra person around, but then when my food runs out she never replaces it, and when I ordered some food online from the supermarket to put in the pantry she got all sad and made me feel guilty. I've been injured for over three years now and she still can't work out how to feed me properly and it's driving me nuts, the worst part about it is that she knows how to help me eat, but just slacks off. Things like pulling this food or fork out of my mouth before I've even got the food into my mouth, things like pushing the food towards my mouth when my mouth is closed and I'm chewing. There are many other things which annoy me as well such as her coming into my room and cleaning things up even though it is MY space and my carers help me keep everything clean and vacuumed and mopped etc

I know I need help with a few things, but I am also very independent with two jobs and studying. I used to get annoyed directly after my injury about the above things, but I've been asking her nicely for over two years to help work with me to make my life a little more comfortable when I'm being fed, and to not have her clean my room even though it's already clean because it makes me feel like a baby. She STILL goes ahead with all of the above, and then get upset when I'm upset.

I used to get annoyed, then I've been asking patiently for nearly 2 years and she still won't budge. It's always my fault, no matter what. I'm sure sometimes things are my fault, but it's really demoralising to be told how difficult you are, or being ignored when you calmly try and bring up something. If she has something to say she will make sure she gets her side across, no matter how pointless, even if it's nasty and makes me cry. But when something is bothering me and I try to talk about it she just ignores me and walks off... and I can't really follow can I? It's pretty rude to close the door on a quadriplegic because you are tired of what they have to say.

I'm just going crazy here. Sometimes she can be so awesome, but then she can be so cruel and I don't know what to do. She won't go anywhere near counselling because she thinks that's all bullshit so I don't really have much room to move. I can't afford to live on my own yet, but for my own sanity I don't know when she is going to be in a bad mood and I'm going to cop it.

And what also confuses me is that I'm getting out heaps now with Uni and two jobs, and she wants to come along and help all the time but before I returned to Uni and had these jobs she told me she needed more of a break at every possible opportunity. So she gets too tired when I am around, but then gets resentful when I'm out heaps.

I don't mean to say I don't love her but I'm really getting at my wit's end. My father and sister have also recognised all the above issues but none of us know what to do. We suggest she needs a holiday and all she says is that she likes being at home. We suggest that she go out with her friends or something, and she says she couldn't be bothered. She has always been a loner, but she is now often using me as an excuse not to go out, saying that I need her help when I don't. I've suggested counselling, and every time I tried to sit down and talk calmly about how I feel, and just how upsetting her behaviour can be at times she just ignores me or walks off and closes the door behind her.

I just have no idea what to do apart from move out, but then when I suggested that to make her life easier she started crying. It seems like it's too much for me to be at home, but she is worried about what other people would think if I moved out.

She is not like this all the time, but I never know what is going to make her fly off the handle and considering she won't admit there is a problem I just have no idea what to do.

Sorry about the rant I just don't know where else to turn.

[Lucydog]

Hi Elisabeth

my sympathies to you with regards to your mother, parents can be really frustrating!!! Anyway if I were in your shoes, Id be looking to move out. Im presuming you are in the US, so I cant advise on the actual logistics of it all, but if you are working and doing Uni as well then you are already getting YOUR life back together, and taking control of YOUR life. I know there are a lot of quads here who do live independently with help from a carer, so its not impossible, nothing is! Even if it takes months to organise and get sorted Id start planning it, doing the research and looking into options now, after all I dont suppose you want to be there in 20 years time do you? And of course it would be nice to meet some nice guys, and they wont want your parents about!!! LOL

anyway just a suggestion, sorry I cant offer more advice but hopefully it will get you off in the right direction.

cheers
L

[KimAndSophie]

elisabeth, on Feb 22 2007, 02:21 AM, said:

I am a C5 quadriplegic, after my injury I moved back home after five years of independence at Uni and travelling the world and working. Don't get me wrong, I love my parents and my mother, but she is beginning to drive me crazy. Luckily, I have morning and evening carers which was difficult to acquire so thank God for everyone's sanity none of my family members do any of my personal care, but I occasionally need help with other things like emptying my catheter and eating/cooking.

My mother said she did not want a carer cooking because it would be too confusing to have an extra person around, but then when my food runs out she never replaces it, and when I ordered some food online from the supermarket to put in the pantry she got all sad and made me feel guilty. I've been injured for over three years now and she still can't work out how to feed me properly and it's driving me nuts, the worst part about it is that she knows how to help me eat, but just slacks off. Things like pulling this food or fork out of my mouth before I've even got the food into my mouth, things like pushing the food towards my mouth when my mouth is closed and I'm chewing. There are many other things which annoy me as well such as her coming into my room and cleaning things up even though it is MY space and my carers help me keep everything clean and vacuumed and mopped etc

I know I need help with a few things, but I am also very independent with two jobs and studying. I used to get annoyed directly after my injury about the above things, but I've been asking her nicely for over two years to help work with me to make my life a little more comfortable when I'm being fed, and to not have her clean my room even though it's already clean because it makes me feel like a baby. She STILL goes ahead with all of the above, and then get upset when I'm upset.

I used to get annoyed, then I've been asking patiently for nearly 2 years and she still won't budge. It's always my fault, no matter what. I'm sure sometimes things are my fault, but it's really demoralising to be told how difficult you are, or being ignored when you calmly try and bring up something. If she has something to say she will make sure she gets her side across, no matter how pointless, even if it's nasty and makes me cry. But when something is bothering me and I try to talk about it she just ignores me and walks off... and I can't really follow can I? It's pretty rude to close the door on a quadriplegic because you are tired of what they have to say.

I'm just going crazy here. Sometimes she can be so awesome, but then she can be so cruel and I don't know what to do. She won't go anywhere near counselling because she thinks that's all bullshit so I don't really have much room to move. I can't afford to live on my own yet, but for my own sanity I don't know when she is going to be in a bad mood and I'm going to cop it.

And what also confuses me is that I'm getting out heaps now with Uni and two jobs, and she wants to come along and help all the time but before I returned to Uni and had these jobs she told me she needed more of a break at every possible opportunity. So she gets too tired when I am around, but then gets resentful when I'm out heaps.

I don't mean to say I don't love her but I'm really getting at my wit's end. My father and sister have also recognised all the above issues but none of us know what to do. We suggest she needs a holiday and all she says is that she likes being at home. We suggest that she go out with her friends or something, and she says she couldn't be bothered. She has always been a loner, but she is now often using me as an excuse not to go out, saying that I need her help when I don't. I've suggested counselling, and every time I tried to sit down and talk calmly about how I feel, and just how upsetting her behaviour can be at times she just ignores me or walks off and closes the door behind her.

I just have no idea what to do apart from move out, but then when I suggested that to make her life easier she started crying. It seems like it's too much for me to be at home, but she is worried about what other people would think if I moved out.

She is not like this all the time, but I never know what is going to make her fly off the handle and considering she won't admit there is a problem I just have no idea what to do.

Sorry about the rant I just don't know where else to turn.

Wow, it sounds like our mother's are a lot alike! When I got out of rehab I was living on my own for about 7 months in a different province than my parents were in. I was pretty happy and did pretty well, but then my mom decided to come visit me. She stayed for about a week, and because she didn't like cities she decided that she wanted me to move back home. She constantly called me every day for weeks until she convinced me to move back home. I did it more for her than for myself. She told me that the buses in the city closest to where she lived were accessible and that I could go on disability there and get a lot more than I was getting in the proivince I was in and there was family to help me. She said I could stay with her until I found an accessible apt. and that there were plenty etc.

Well, I moved back home and found out that nothing was like she said at all! First of all it took months fighting with the gov. to get any money at all. I only needed it until I could move to the city and find a job. The buses in the city were accessible, but they were not being used as accessibl;e buses, and there were basically no accessible apts. When I finally got disability I was told I could spend less than $400 a month for an accessible apt. and that a social worker would have to go look at it and approve it and say it was accessible before I could move in. The social worker I had only ever called me to tell me off for trying to talk to someone else to get things done because she never did a thing to help, and I had to take the money I was getting for food, bils and rent (which my mom didn't charge me thankfully) to buy the medical supplies I needed every month.

As the dayswent on my step dad got more and more annoyed that I was there that he started treating me really bad. He kept telling me how no one wanted me there and how I was ruining everyone's life. How him, my mom and sister had their life now and I was ruining it for all of them, and he threatened to kick me out a few times. My mom was always in a really bad mood and blamed it all on me. I couldn't get out of the house because there were stairs and it wasn't accessible and had to get out of my wheelchair and pull myself across the floor to get into the bathroom because although a person from the Canadian Paraplegic Association told my mom that there were grants and things to make the house accessible she refused because "if the house was accessible then I could stay there". Everyone got mad because I spent so much time in my room (my step dad's office), but when I was in any other part of the house I was in the way.

Because I couldn't take my guide dog outside to pee and things and my mom or step dad had to do it that caused a huge fuss, and I was even blamed for my sister's grades going down in school! (She's 13 and it was because she just didn't care about school and spent her days and nights at the computer or watching tv).

I decided to move to the US when I got a job offer and my mom flipped out because I was moving away! I swear there's no way to please her! I told her I didn't care what she thought it was my life and I was moving no matter what. I've been in the US now since the beginning of Dec. and I love it here! It's one of the best decisions I've ever made! I'm so much happier now, and although no one at home is happier, they can't blame things on me anymore. While I was there I was so stressed out there were times I'd just sit there and cry. Sometime's the best thing to do is to get away from situations like that. It might seem like your hurting people at first, but in the end everyone wil be less stressed out and get along a whole lot better.

I hope things work out for you! If you want to you can email me. My email address is in my profile.

Good Luck!