12 replies to this topic

[stephy1027]

Hi, I am new to the boards and ecstatic that I found this site. My brother was in a motorcycle accident June 27, 2011. He is now a quad. A little back ground about everything... him and i didnt really get along growing up we loved each other but our personalities didnt mesh well. As an adult, i knew if i had to be around him i had to prepare for it because he has always been one of those people that knows everything. he was very hard to be around.

Back to the present, He was in hospitals and rehab until December 18 to which he came home to my moms small 2 bedroom apartment. 2 of my sisters and I, were going to be his main care givers. It has really been hard but we have done it so far, and now I am going over there every day with my kids to do this for him but the state is now going to pay me. I am so frustrated with him because he is constantly yelling at my kids, he doesnt understand what it is like for them they have had to give up all their school breaks to be there so I can take care of them. now he is getting to the point he has been cussing at them and my sisters kids, now he tells me oh you dont have to stay, our mom can lay him down is his thought. my thought is no she cant she is 61, he is 6'3' and 200 lbs and she is 5'3 130 lbs, she cant do it. I try to understand what he is going through but he has no care in the world about anyone else and seems to think the world is revolving around him. He likes to try to tell me how to raise my kids and he didnt even raise his own kids, and i am to the point if he keeps this up, im gonna say something to him and i dont want to hurt him because i do love him but i cant hardly stand being around him. I am at a loss as to what to do. my mom says she thinks its due to his injury and its not, he was like this before but we just didnt have to see him on a daily basis or hell even a weekly basis. I am willing to help him in anyway i can, but he really thinks that he is the priority in everyones life and he is not, my kids are. this has also put strain on my marriage as my husband has now left our home because i have put my brother before him and my kids. now my husband thinks its great that i can help but he also thinks that we should still have a family life which we dont because im there so much. I am just frustrated and i appreciate any advice.

[Smileyblue]

Oh WOW! First thing I would suggest is to take a step back, take a deep breath, and exhale slowly.. And another one.. There, doesn't that feel better already?

You guys have some issues here that can't be swept under the rug and forgotten about..

As an outsider, listening to only one side of the story, it is clear that there are some personality clashes, clarification of roles and expectations, and decisions about where priorities lie that have to be made, and soon! I highly recommend a family meeting ASAP!!! Go into it with clear minds, and make decisions about his care, and your time, and separate own-family time which is not to be intruded upon.. Are your sisters still helping with his care? How is the roster split up between you all? His care should not be frowned upon and left to one person to carry the weight! If you all club in, it should be like seeing him for a bi-weekly visit instead of a duty to perform.. He should also be made to understand that you are doing this out of love, and should not give you a hard time about it.. It does sound to me like he may be interpreting your feelings and believes he is a burden on you.. Nobody likes that feeling, and we all go through it in the beginning.. Perhaps that's why he suggests that your mother could do it?

Could the money that you are going to be paid not be used to hire a caregiver (perhaps she could come in a certain amount of hours in the mornings and evenings, or just when most urgently required? This would in effect lessen the strain on you and your family, wouldn't it?

Anyway, it does sound like a very complex family bond, that has many different aspects to discuss, in a "safe" environment, and find a solution that you are all happy with.. It does get easier with time..

[Tetracyclone]

"My brother was in a motorcycle accident June 27, 2011."

I hope you meant 2010, because the date you put has not yet occurred.

i suggest you agree as a family to set limits, then stick to it. If he is abusive, leave the room for 15 minutes. I don't care what you are in the middle of. He will not change his behavior unless you make clear that bad behavior will not be tolerated. He is a smart guy- he will catch on.

[Simba]

This does not sound like a very good situation for any of you to be, it doesn't sound like it is doing anybody much good. As you say your children are your priority and your previous difficulties with your relationship with your brother sound like they may be getting worse due to stress etc. If there is funding available for someone to provide his care then would it not be best to remove yourself from this position?

The home environment also concerns me living in a two bedroom apartment which he may find incredibly confining and is probably feeling very trapped in. Have there been any adaptations or modifications done to the property to suit his disability? Space is very important for a disabled person to have to move around and access places and lack of space can be the source of much frustration in their lives with mobility issues/limitations.

You say that his personality has always been like this before & after the accident? Has it worsened post SCI and if so has there ever been anyone to look into the possibility of a traumatic Brain Injury (TBI) as this can significantly alter peoples persoanlity/behaviour and coping levels if under stress. If he has had a major motor accident the chances of him having a TBI are very high as it does not take very much at all to incur one.

I don't agree with anyone implying that his behaviour is unacceptable as if he has a TBI these behavioural manifestations are often caused by stress/frustration and/or the actions of other people and are to the person dealing with a TBI unavoidable - if something is truly unavoidable they can not be held accountable for it. It could be the reason why is less able to cope with your children around also as this will be making it very busy and distracting for him - it will make him incredible frustrated as you say I would not be surprised if he does not have the space & peace to remove himself from situations that it is causing him stress then what is he supposed to do? As to leaving him when he needs help I suggest this is only going to make it easier for you and will make things much worse for him - at those times it is better to maintain a watch from an easily observable position close enough to provide aid when necessary.

I think you need to consult not only amongst yourself (including him) with the rest of the family and get appropriate medical/disability advice on how to resolve this situation as otherwise it will probably just worsen. Coping mechanisms need to be put in to place for him and people have to allow him to use his coping mechanisms.

Disability is not PC and often saying things are not appropriate/acceptable will cause far more problems - find a way to allow him to manage his disability better & listen to what he has to say - no-one knows better what he is going through except him.

[stephy1027]

thank you all so much for your responses! we had a social worker come out to talk to him, she asked him about getting some counseling and he says why its not a big deal!!!!! Then says that we are the ones that need counseling. The social worker the first time she met him asked us 3 times if we were sure there was no brain injury. According to the doctors there wasnt. We told her this was him even before the accident. The original plan was to modify my house and him come to live with me, it would of been so much easier doing this because he would of had more space and my kids would not have to spend their days and school breaks in a little 2 bedroom apt. he decided he didnt want that. I have really been the one to try to keep everyones spirit up about this, not sure i can anymore.

i am usually there 6-7 days a week 2 of those days are all day to get him up and to lay him down. the other 3 split up usually 6 evenings a week. I have 4 kids that i have to get 2 ready for school, the 2 little ones dressed for the day and drop the kids off at school take the toddlers with me to my brothers and stay until i have to pick the kids up, on days when i have to be there all day i pick them up and go back.

yesterday, My brother told me that i need to put my kids in day care for the summer because he dont want to have to deal with them all day. I told him I was not going to do that and he says to me, then you have to be ok with me yelling and cussing at them!! I told him no I will not be ok with that and he is gonna have to get his mind set that if he wants me to help him then he is going to have to treat my kids right. I also want to know how he thinks i will pay for that being a stay at home mom of 4 that is recently separated! I also told him, if it comes down to being able to do this for him or my kids well being, i will be choosing my kids. I told him dont make me have to do that.

We were going to get an aide to come and do this but he asked me to and I agreed but since then it has been hell for my kids. my kids lost their last summer break because of this accident,their fall break, their christmas break, spring break and Ill be damned if im gonna make them spend their summer in daycare!

Anyway i do apologize for rambling but I have not had anywhere to vent my frustrations. I dont want to do it with him because I try my hardest to not hurt him because I know he is going through alot. sometimes it feels like he doesnt care about anybody else. This is the reason my husband left me, not because i was helping but because i was always gone, my house was a mess and we never had time for each other because I chose to help my brother. Now dont think my husband is heartless, he was the one that suggested him coming to my house and he just thought that everyone should help and it not just fall on one person. It takes a toll on all involved. some of our siblings are afraid they might do more than others, one of our brothers just tells us flat out he needs to be in a home because he isnt gonna help. At least with this way, if it doesnt work out and he has to go to a home we can say we tried..

[Spinner]

My advice to you? Find someone qualified to help your brother and run as fast as you can away from him. I am sorry to say that, but it is clear from your posts that this man cares nothing about anyone but himself and will stop at no end to get what he wants and seems to feel he deserves. Your children come first. Period. When he starts ordering you to put them in daycare to make his life more comfortable, on the heels of your husband leaving you because of this situation, as far as I am concerned he is beyond the beyonds and needs to be stopped. I can't help but wonder, if you stay on as his full time caregiver, how long it will be before you are completely alienated from him and have no choice but to leave him high and dry with only his misery to keep him company and help with his cares. Dude needs a major attitude adjustment. Frankly his current view of life and treatment of his caregivers is not going to get him very far as he navigates the world of spinal cord injury and you and your children should not be wreckage in his wake.

[jscott92064]

Spinner, on 26 April 2011 - 06:39 PM, said:

My advice to you? Find someone qualified to help your brother and run as fast as you can away from him. I am sorry to say that, but it is clear from your posts that this man cares nothing about anyone but himself and will stop at no end to get what he wants and seems to feel he deserves. Your children come first. Period. When he starts ordering you to put them in daycare to make his life more comfortable, on the heels of your husband leaving you because of this situation, as far as I am concerned he is beyond the beyonds and needs to be stopped. I can't help but wonder, if you stay on as his full time caregiver, how long it will be before you are completely alienated from him and have no choice but to leave him high and dry with only his misery to keep him company and help with his cares. Dude needs a major attitude adjustment. Frankly his current view of life and treatment of his caregivers is not going to get him very far as he navigates the world of spinal cord injury and you and your children should not be wreckage in his wake.

Everything Spinner said, multiplied by 2. Your children come first!

[Simba]

It's ok to ramble and vent on here we all do it at times and it is healthy to offload the way you are feeling, caring is very stressful and sounds like it has taking it's toll on everyone's life who has been involved up to this point. As I said earlier, you mentioned there is some provision for the state paying for his care and I really think given the situation someone else should be responsible for his care with your commitment to your children, your marriage and your unstable relationship between you & your brother I don't think there is any other long term solution.

Is there no way to organise a caregiver to take this role over? I don't agree with disabled people being put into a home as this is often a complete discontinuation of any form of reasonable standard of life for anyone and regardless of what they have done in my opinion no-one deserves that sort of a sentence. In some inctances the disabled person can develop a mind frame that they are 'entitled' to things and if their expectations are greater than what people are willing to reasonably provide another solution has to be found. It does not seem reasonable for you to be entirely lumbered with his care (given the circumstance) when there could be someone else involved and I think for the benefit of everyone someone needs to be found that can either lighten the work load on you or take over the majority of his care.

[snowqueeneh]

I have no idea how much they pay you to care for your brother... but I do have a thought. Perhaps you could take some of that money and hire a part-time worker to give you a break and also let him adjust to someone else. There should always be a back-up play anyways. If you needed some time off what would happen? It's complicated for sure. I had a hard time letting some of my husbands care go to "strangers". I too started off doing all of it. Then I started letting some go little by little. I had someone come in every other day to get him up. He was dreading it.

Before my husbands discharge the hospital suggested that I get full time care straight away. Most people apparently do this and then work thier way into doing some if the care themselves. But we did it the other way around. I look back and feel like I did the right thing. I needed to be involved in everything for my own comfort. Then, as we started to get some outside help it was a nice break for me. If I did it the other way I think I would have felt like it was more and more work for me. Anyway... now I'm rambling. Sorry about that.

My point is that you need to have a break as anyone will be annoyed when they are constantly around eachother. Also, you need a back-up plan so it would be wise to try and find at least a couple outside carers who can get to know your brothers needs and care plan.

We have been through many workers during that last couple years... but when we do find one that clicks it's a really nice experience. My husband looks forward to seeing them. He loves to chit chat while they work. It was a very scary thing at first but now it's not so bad. I'll admit that it takes some time and some rather akward experiences to find the right people, but it's so worth it. We have care in the mornings only. They come in to get my husband "shit showered and changed". Then I take it from there. So it's only 2 hours a day... but it's the hardest part of his routine and it is a huge relief for me.

Hope this helps and good luck. You are an amazing sister!

[tsh3406]

Want me to wheel on over there and..... WHUP his ass? Buy me lunch at the Spaghetti Factory and we'll call it good ;)


T

[johnjlm2]

Everyone loves their family but you don't have to like them. Sounds to me you need to put the family you chose(children and husband) first. Your brother will figure it out on his own. If you had a contentious relationship before the accident, after it won't change. People are people first, sci is just an injury. My father always told me that if people are bad for you, even if they are family, you must leave them alone. It sounds like you are an amazing woman trying your best. Please for your childrens sake go take care of them, and your husband, then with what time you have left help out your brother.

[Tetrapsmum]

You don't have to care for your brother, not sure what your receiving wether it's carers allowance or part of his disability allowance, I would suggest you put the ball in his court if he wants you to look after him then he needs to be civil to you and your kids otherwise find an alternative , go back the the social worker ask pacifically about what your local social services can do for him regarding the care and the funding of it he needs, Find as much info as you can about the level of care he needs and his entitlement to it. good luck, if you don't get on normally then your probably not the best person to be his carer so let someone else do the job once again good luck

[Tetrapsmum]

Bit of an after thought here lurker you don't mention your brothers level of injury or his capabilities other than he's a quad, also that it is almost a year since injury, whilst a year to those around him may seem an eternity in reality I doubt wether he has come to terms with the new life he is now experiencing when my son was injured someone said to me the first 7 years are the worst, however on a brighter note most of the "quads" we know have pretty independent lives and maybe this is the line you should pursue, rather than putting your kids in day care send him to rehab if he has the use of his arms and hands then he can learn to put himself into and outta bed he may need help with bowels and bladder depending on his abilities the more he can do for himself the better for you all