61 replies to this topic

[munkypoop]

Monkey, maybe your not getting our perspective on this very well. You gotta understand that we speak from EXPERIENCE when we offer our advice on looking for outside help. I've been in your situation regarding a good caregiver (my ex-wife), who eventually could no longer take the pressure, so she opted out the best way she knew how. Yes, there were other extenuating circumstances on top of everything, but there always are.


Look, you can keep things as they are and continue to listen to the fighting, bickering, and threats of divorce day in and day out, until it will inevitably happen. Or, you can take matters into your own hands and find a decent caregiver now. At least you have your parents there NOW to show a career the ropes. In a few months from now, the way things are going as you describe, who knows how things will play out?


It's ultimately your decision how your care is handled . . . . . But, don't expect to come on here and complain about things being as they are if you have it in your power to change it, but choose not to. Yes, there are bad carers out there, but there are ALSO very GOOD ones, and I just so happened to marry one of them.


Okay, I'm done.

actually there really isn't caregivers around here that can do what I need. The government allows me about 14 hours a day to pay someone to help. Which I have my parents and one friend to help with that. My social worker said that if I lose them and have to go to an agency of some sort I do not get enough hours for the care I need. I need some one here all the time. Sometimes I get a panic attack out of nowhere and if no one is here to help with it. It can be dangerous. Plus I get uncomfortable. Quite often due to my spine curving and need to be adjusted on my trunk whenever I start to slide over. Not to mention the catheters, which is not an exact amount of time. Sometimes it is a different schedule. According to my social worker, the hours I am allotted would not take care of me as needed. She said that with those hours, my only option is a nursing home. And I made this post, mostly to vent. Whatever happens with my parents relationship, I know they will take care of me as long as they are able to. And then I have to really decide where my life will go. When you go into a nursing home, the city takes your house and any property or vehicles or anything and sell it all and that is how you pay for the nursing home. After that money is gone, you go to a low income nursing home that Medicare pays for. I am working on getting new therapy equipment and new therapy with that. And I hope it works enough for I can stay at my house and take care of myself enough where my hours allotted to pay someone will be plenty. I am praying that the new therapy will give me some my body back! Trust me, I am listening to everyone and everything is in my mind, but it is not as easy as it should be!

So what have your parents said about this? One assumes that you've actually sat them down and explained that you're not happy - both as their son whose struggling to come to term with the concept of them not being happy living together (in your house), BUT ALSO as a cripple who NEEDS TO HAVE A LONG TERM PLAN for not just your physical health but also your mental.

If Catmint is correct and the additional strain of caring for you is affecting their relationship that it is even more important that you start finding an alternative arrangement, even if this is only for one or two days of the week so that they can have a break. Hell even a few hours off a day having someone "baby sit" you would be of great importance. Now I know nothing of having to care for a disabled person long term, the closest I've been to this is my own relationship with my parents after my accident, and that as a babysitter who used to care for a disabled child (9 year old with severe CP) whose story I will not share, as awesome as he was, because when I try and add any personal content I am told I am ranting. But I have read on this forum again and again about caring burn out - when the carers just can't cope any more especially when they don't have external support. Are your parents hitting this? They're not getting any younger which wont help and you can't rely on a miracle coming up and saving you when they decide enough is enough, or should one of them fall seriously ill.

Perhaps you could suggest you take a weeks vacation in a nursing home to give them chance to talk through their issues together, to relax and not have to worry about you all day and night, and if needed, for one of them to pack their bags and start looking for alternative accommodation nearby. Of course while you're on holiday you wont be sat on your arse doing nothing - talk to all of the nurses and see if they know any GOOD ones that do personal home visits. Perhaps someone could do the physical stuff like bowls, dressing, washing, (all the stuff that your parents are going to start struggling with sooner rather than later), agencies that the nurses would be happy to work for...

Yes it's not the perfect situation, but of course the perfect situation is where the son can care for the parents.

I have talked my parents just as you asked. The argument never gets in the way of my cares. They take great care of me that way. And we have talked many times and they feel that they would never choose not to take care of me. And my mom goes on vacation every year in my dad can get time away whenever he wants. See they are my best friends and we get along great. So they never feel as if I need to go away for a bit. And when you add it all up all the care that is needed is not a lot of tough things. It is just a bunch of little basic things multiple times a day. My mom used to work at every nursing home in this area, and I am not exaggerating about how bad nursing homes are here. If I go to one, it will be very horrible care and will only harm me more than it will help out. I know my parents don't have much time left to take care of me I know I will probably have to turn to my siblings but it is so hard because I don't want them to have to devote their life taking care of me

Wise words indeed from bouncer.

With the best will in the world your parents won't be around forever so it would make sense for you to sort out your care while they are still able to be involved. Why wait until things go wrong and you are in a desperate situation.

I wonder if their relationship troubles stem from the responsibility they have of looking after you. Perhaps the pressure is getting to them. If their marriage is as unhappy as you paint it no wonder they argue. As I see it they are trapped in an unhappy marriage because they are responsible for your care. I may be wrong but if you start to take control of your care you may find that their attitude to each other changes for the better. If it doesn't and they do still split up then it was inevitable. But at least you will have care in place.

It seems to me that you are looking for obstacles all the time. Try thinking positively, find out what's available and make it happen

the marriage was bad before my accident. My dad says that taking care of me is the best thing in his life. He said he would be dead from drinking. If it wasn't for me, and he is sober now. My mom says that I'm the only one who can make her happy and laugh no matter what is going on. We have talked about this specific of taking care of me. If they split up and it will work out. I had a great, great care, the only problem is the arguing which is not constantly but enough to bring tears when it happens.

Edited by Apparelyzed, 04 May 2012 - 08:56 AM.

[mellowgator]

it would seem that monkeypoop is staying with the status quo and just wanted to blow off some steam. i am a quad who lives with my family a husband and 2 teenaged daughters. my husband is working out of the area and so it leaves me and the girls to hold down the fort. i also have a house keeper twice a week and a friend that comes and stays a few days every 2nd or 3rd week to prep meals and help with laundry or whatever i'm behind on.
if i didn't have my family i'd hire a nursing student to live in my extra room and care for me in exchange for room and board and a stippend. i'd only go to a nursing home as a last resort. there are many ways to handle attendant care issues and not everyone has family to take care of them and they're not all in nursing homes.

mellowgator

[munkypoop]

it would seem that monkeypoop is staying with the status quo and just wanted to blow off some steam. i am a quad who lives with my family a husband and 2 teenaged daughters. my husband is working out of the area and so it leaves me and the girls to hold down the fort. i also have a house keeper twice a week and a friend that comes and stays a few days every 2nd or 3rd week to prep meals and help with laundry or whatever i'm behind on.
if i didn't have my family i'd hire a nursing student to live in my extra room and care for me in exchange for room and board and a stippend. i'd only go to a nursing home as a last resort. there are many ways to handle attendant care issues and not everyone has family to take care of them and they're not all in nursing homes.

mellowgator

can you move anything? I have looked many times with family and social worker every time I see my social worker for the last five years. And honestly and seriously, if there is no family to take care of me I cannot afford to live in my house. Therefore a nursing home is the only option. And if my siblings move in with me to take care of me, they would not make enough money for us all to pay the bills. Those few hours I get, if they are given to the family members, they only make 50% dollars per hour compared to a person, not related.

[mellowgator]

<sub>munkypoop,

so if you paid an outside caregiver you'd be allowed twice the benefit up to 14 hours per day? are you still on a trach? as you are injured longer you may get some return and learn to do a few more things without help. it takes a while to get used to the new you and especially for a quad it takes forever to finally make progress.

i am a c6-7 quad and i drive and am fairly independent. i had around the clock care givers at first and one day my caregiver went on vacation. during her absense i found out that i was able to do alot of the things she was doing for me. the more i accomplished the more confident i became and that created a snowball effect. once i had my kids i became certified in scuba and even traveled to california for 3 weeks alone to get my service dog.

there's no telling how much return you'll get. i found that after 7 years of being injured i could move my toes. it turns out the valium i was taking was masking some of my movement.

mellowgator</sub>

[ClaraTaylor]

Ah so it's just a rant you wanted not help.
Forgive me. I had forgotten this is standard procedure.

[catmint]

Munky..

Perhaps it would have been better for all concerned if you had made it clear in your opening post that you just wanted to vent. You seemed to be asking for support and help, as far as I can see that is what has been offered. Bouncer, Mellow and Clara have all given you food for thought.


I am not sure if it is possible to change a thread title, the boss would know. If it can then I think you should rename it, making it clear to all that you don't want any suggestions as to how you can better your situation. Something along the lines of ' Just venting. DO NOT REPLY TO THIS THREAD '.

That way everyone is happy

[munkypoop]

<sub>munkypoop,

so if you paid an outside caregiver you'd be allowed twice the benefit up to 14 hours per day? are you still on a trach? as you are injured longer you may get some return and learn to do a few more things without help. it takes a while to get used to the new you and especially for a quad it takes forever to finally make progress.

i am a c6-7 quad and i drive and am fairly independent. i had around the clock care givers at first and one day my caregiver went on vacation. during her absense i found out that i was able to do alot of the things she was doing for me. the more i accomplished the more confident i became and that created a snowball effect. once i had my kids i became certified in scuba and even traveled to california for 3 weeks alone to get my service dog.

there's no telling how much return you'll get. i found that after 7 years of being injured i could move my toes. it turns out the valium i was taking was masking some of my movement.

mellowgator</sub>

actually no those are the hours I get no matter if it is family member or not. And no, I lost trach almost immediately. And it is easier when you have some kind of movement rather than only your voice! But even voice helps. A lot of times

Ah so it's just a rant you wanted not help.
Forgive me. I had forgotten this is standard procedure.

I've noticed from what you said in my post and others that your mood is always different. You start off nice and then you become nothing but complaints!

[ClaraTaylor]

I've noticed from what you said in my post and others that your mood is always different. You start off nice and then you become nothing but complaints!

Where was I complaining?
I will help any member of this forum if they need help, but if all they need is attention and somewhere to rant than forgive me if I get BORED of wasting my time trying to help where in fact a simple "oh woes you and your poor life" would have sufficed.

Edited by ClaraTaylor, 16 April 2012 - 05:32 PM.

[munkypoop]

Munky..

Perhaps it would have been better for all concerned if you had made it clear in your opening post that you just wanted to vent. You seemed to be asking for support and help, as far as I can see that is what has been offered. Bouncer, Mellow and Clara have all given you food for thought.


I am not sure if it is possible to change a thread title, the boss would know. If it can then I think you should rename it, making it clear to all that you don't want any suggestions as to how you can better your situation. Something along the lines of ' Just venting. DO NOT REPLY TO THIS THREAD '.

That way everyone is happy

yes I was venting but at the same time I am reading the support that other people received and saved it on my computer to show my social worker next time she comes. The problem was that where I live is different than others, and I'm sure it's like that for everyone. The hospitals here are more concerned with heart patients and don't receive much paralyzed patients. Nursing homes barely have any! I was sharing the only options I've been told and hoping there were better options here and ideas to pass on. I didn't ignore any of you this entire conversation is a saved message. And I do not want anyone to think I am not getting good care because I care is great I can't ask for better right now! I was hoping for someone who was a child of divorce and knows what I'm going through with that could just show some concern. It's too bad you can't receive hugs because it's just the Internet. This entire thread turned from just being sad from parents splitting up which was my main sadness to getting different care which I'm not looking for right now! But I will take all the ideas on a back burner for when I need it because they get too old to help. But I will be working on that next time I talk to my social worker just to the ease my mind for what the future holds.

I've noticed from what you said in my post and others that your mood is always different. You start off nice and then you become nothing but complaints!

Where was I complaining?
I will help any member of this forum if they need help, but if all they need is attention and somewhere to rant than forgive me if I get BORED of wasting my time trying to help where in fact a simple "oh woes you and your poor life" would have sufficed.

read the next message, actually the one before this one

Edited by munkypoop, 16 April 2012 - 05:49 PM.

[joye]

Wow . . . 14 hours a day. Believe it or not this is a lot of hours. Here's what I would do if the government was giving my husband 14 hours of paid care a day. I would have a carer come in the morning, dress you, do your personal care, get you into your chair, cook for you, feed you, and throw in some laundry. Then leave for a bit and maybe even have time left to go to the market for you. Then have say mom come in to sit, visit, and relax with you until the carer comes back in to cook for you, feed you, do your bowel care, bath you, get you out of your chair, get you into you bed and leave for the night when dad comes in to sleep with you and take care of any of your needs throughout the night. Surely this can be accomplished with 14 hours of care per day. This way both mom and dad are helping, but not together. I realize that maybe mom and dad are being paid the 14 hours a day for your care . . . but, maybe this isn't the right job for them and that money should go to an outside carer.

And as for no one in your area knowing how to do your care. Believe me when I say this . . . no one knows your care. You have very specific care that requires specific training. My husband is just as you are. He cannot move below the shoulders and the BEST carers I have had for him are those that come in with very little knowledge. This way I don't have to fight them when they think they know better than I do. They learn from me, the way we like his care done and they don't bring any baggage of wrong training from some nursing home with them. Find someone who is willing to do the work and train them from scratch. You may have to go through a few before you find the one that best fits for you, but he/she is out there for sure.

I realize your level of injury leaves you very little independence, so you really need to reach to get whatever independence you can . . . and, hiring an outside carer may be a big step towards that.

I wish you luck!

[munkypoop]

Wow . . . 14 hours a day. Believe it or not this is a lot of hours. Here's what I would do if the government was giving my husband 14 hours of paid care a day. I would have a carer come in the morning, dress you, do your personal care, get you into your chair, cook for you, feed you, and throw in some laundry. Then leave for a bit and maybe even have time left to go to the market for you. Then have say mom come in to sit, visit, and relax with you until the carer comes back in to cook for you, feed you, do your bowel care, bath you, get you out of your chair, get you into you bed and leave for the night when dad comes in to sleep with you and take care of any of your needs throughout the night. Surely this can be accomplished with 14 hours of care per day. This way both mom and dad are helping, but not together. I realize that maybe mom and dad are being paid the 14 hours a day for your care . . . but, maybe this isn't the right job for them and that money should go to an outside carer.

And as for no one in your area knowing how to do your care. Believe me when I say this . . . no one knows your care. You have very specific care that requires specific training. My husband is just as you are. He cannot move below the shoulders and the BEST carers I have had for him are those that come in with very little knowledge. This way I don't have to fight them when they think they know better than I do. They learn from me, the way we like his care done and they don't bring any baggage of wrong training from some nursing home with them. Find someone who is willing to do the work and train them from scratch. You may have to go through a few before you find the one that best fits for you, but he/she is out there for sure.

I realize your level of injury leaves you very little independence, so you really need to reach to get whatever independence you can . . . and, hiring an outside carer may be a big step towards that.

I wish you luck!

well with those hours. I have two friends that are here to help. Parents cannot get a job other than this one because of disability. I have one friend that comes Monday through Thursday 9:30 AM through 3:30 PM and another friend Tuesday and Wednesday 5 PM to 10 PM, the second friend happens to be the driver in my accident. And then he is also here Saturday 12 PM through 8 PM and then my parents the rest of the time but they do their own things until I call for them. And we have our certain TV shows we watch together and a lot of times they just sit in my room to spend time with me. And then my brother and sister visit me when they can but my sister lives in a different state. So it's not just my parents taking care of me. Although only my parents Cath me because for some odd reason when someone else does it get a UTI maybe my body is used to their germs more who knows. And they all are great with me! When my sister is in town. She takes care of me, mostly and it's not on the payroll from the hours it's just out of love!

[The Black Sheep]

deleted. I have been put in my place and stand corrected.

Edited by The Black Sheep, 17 April 2012 - 09:43 PM.

[munkypoop]

Okay people are dumb! This thread was made for support of splitting parents! And then I don't know how it changed into changing the cares I get and how to do it with outside caregivers! Once again I will say again, like a broken record, the area I live in has little or no experience or knowledge with paralyzed people! Nursing homes are places you go to die! The best spinal cord doctors in the country say I have amazingly great care! And I always will with my family no matter what happens! In no way shape or form did I want to change my care! But for some reason you people think I need to change it! So what I go somewhere to get different care. So then I get hurt, more depressed, and taking care of horribly? I think not! When you have great care, and always will because you have a great loving family, then why would you change it? It may be where you others live, you have many options and probably great options, and as I said where I live. I don't have those options that you do! And I would never want to live in a different place then this! Other than the medical thing. This is a great place to live! In fact in 2011 it was the city decided the best place to live in the country! It is beautiful and the nature is amazing! In fact, when I went to Baltimore I got severe severe pneumonia hospitalized for 12 days with constant antibiotics in an IV all because of the air pollution, so I'm not used to anything but clean air! Plus, one of the best in the world for clean fresh water you can drink straight from the lake while fishing! Anyways, I don't care what other people think about changing my care, because that is not needed in my situation, nor will it ever be! I am very comfortable and happy with the care I have! All I wanted was support and help on dealing with the emotional part of divorce – not changing my care, but changing my emotions from parents splitting up! And we have everything planned out if they split up for my cares and with this the care I get will never get worse! If you have great care and happy with it why change it? Like I said earlier I do have these conversations saved on the back burner just in case just in case I need other options. But honestly I don't foresee that ever happening! Why is everyone always focused on changing people's care when they don't ask for help? Usually I am proud to be handicap, which sounds kind of strange I know, but I constantly show able-bodied people what handicapped people need and on changing society around me to help handicapped people more. But it makes me sick when I see all these threads especially this one change from the whole topic to say that the person needs to change, but they are doing care wise or any other way when it has nothing to do with the whole lot the initial topic! People need to learn that just because where they live in a situation and the changes they had to make and help from organizations and facilities where they live work for them and was needed for them does not apply to every single handicapped person out there!

[greybeard]

I don't know about any one else, but I rather regret offering advice to you Mr Munkeypoop. I will not make the mistake of doing it again just to be called dumb for doing so.

[joye]

I am a quadriplegic, I own my own house and my parents live with me to help take care of me. They do not get along at all and I know they really want a divorce. It is a fact that they are staying together and here to be with me. The are always fighting and yelling at my dad has a bad heart with a pacemaker, so yelling and everything is not good for him. My mom is an instigator that never stops pushing buttons! I sit here unable to escape the yelling. I have to listen to it all, and no one wants to hear all this about their parents. I know that I am not, but I constantly feel like a burden. I feel that if it wasn't for me getting into a car with a drunk driver, I would not be here like this in my parents could have a divorce and be happy and away from each other. And then I get mad at myself for poor decisions I made that caused me to be a quadriplegic. I know there fighting is not my fault, I just hate having to sit here and listen to it all, and not able to leave somewhere where I don't have to listen to it. I've tried talking and tried begging for it to stop every time. I don't know what I am asking for here, maybe it is just letting my feelings out. But it doesn't help with the depression that you naturally already have from being paralyzed. I need a hug, or friend, or someone to wipe my tears. I love my parents, they are my best friends and take amazingly great care of me! It is hard!

I went back and re-read your original post thinking I must have it wrong . . . with what you were originally asking for advice/support on. I've posted it above and I think you should re-read it as well.

Where you wrote that you are unable to escape the yelling . . . many of us responded with advice on just how you could escape the yelling which was to eliminate those who were yelling and replace with someone(s) who did not yell. And where you said you sometimes feel like a burden . . . many of us responded by advising you to bring in carers of whom you would employ. Then they work for you, do their job, get paid and that in many peoples opinion eliminates that feeling of being a burden; it actually empowers you to feel more independent. You have 14 hours of care a day . . . that to me is an enormous resource.

No one told you to replace your parents . . . just maybe they should just be mom and dad, not your only source of care of whom you have to beg to stop yelling and fighting. I do not doubt they take wonderful care of you . . . but, what most of us read was; even so . . . the situation wasn't working.

[Tetracyclone]

You see how perfectly this thread worked out? MP was unhappy with the tension between his carers, and now he defends them to the sky and would want no other situation. MP, you will notice over time that we are offered all sorts of advice and some of it wee do not like. Everyone had different ideas of how a situation would affect them.

It is just the way life is- different people, different advice.

Don't worry. Be happy.

[qbounce]

Okay people are dumb!

Monkey,
With a response to our support like that, I'm inclined to think you might be the instigator behind at least some of your parents arguments.

You sure know how to push my buttons, anyway.

[wheeliebear75]

Might I recomend an MP3 player with earbuds stuffed in your ears cranked WAY UP?

As far as hugs go I can only offer the virtual kind.

But on the feeling like a baby note: Not because of being a quad but because of the brain injury I got from the same accident I get all mixed up, turned around & utterly LOST pretty easily sooooo.......it means I wasn't able to go anywhere or do anything by myself til cell phones got affordable for the average person's budget. Since cell phones I've been able to do a LITTLE. But I still can't keep finances in order.....mommy now my B/F have to do that FOR me so I have about as much of an idea what I can & can't get as a teenager does.....it still equates to "Can I?" with having to wait for a yay/nay answer yet I'm in my 30's. Because I get lost I can't just take myself somewhere on a whim......I still have to have someone take me to the place & then once I'm there (mall, wal-mart, etc.) still have gotten all turned around in "familiar stores" & had to HUNT my way back OR use my cell & call whomever I had bring me & have them come find me by describing some "landmarks" of my surroundings. Went to a Dr.s appointment on my own once cuz I'd been there several times before with family/friends.....got myself so lost I had to have 911 (999 for you non Americans) & have them use my cell phone's GPS to have police come find me & take me to the Dr.s office to which I was then picked up by family via CAR (Mom had gone over the steps for getting there a good 1/2 dozen times or so by us going together on the bus.....which is why we THOUGHT I'd be OK). And believe it or not I can even get mixed up on repeating my own home phone # and address. This is all cuz of the type of brain injury I have. I tend to jumble things up unless I'm writting it out (thank The Lord for the internet) so just pulling out my address & identifying info can be hit or miss......CAN BE a BIG PROBLEM. So I understand although for different reasons the lack of freedom that you're dealing with.

As for the SCI stuff: Although my physical injuries aren't "as severe as yours" I did as most go through a grieving process. And it will take some time for that herd of cattle to mooove on. But eventually you'll start learing to do more for yourself & as you do find something that can at least become a source of contentment for you.

[Stand]

Your parents to a great job of taking care of you but they fight so you want an alternative. You do not want to go in a nursing home. Your siblings have offered to help but you do not want them to. From what it sounds like your friends are nonexistent. You pretty much shut down every suggestion that someone makes with a sob story. I do not mean to be ignorant, but what is the point of this post? I understand the purpose of it, but if you're going to shoot down every suggestion or already know the answer and have an idea of what people are going to say, it's not exactly clear to me what it is you want to hear?

Edited by Stand, 18 April 2012 - 05:11 AM.

[ClaraTaylor]

deleted. I have been put in my place and stand corrected.

I wish you hadn't have done. It was so beautifully, and clearly put that even the biggest of idiots could understand what you were explaining.

Unfortunately we can't make the idiots absorb said information without trying to stamp their little feet.

I'm so sorry you wasted your time not just posting in the first time, but feeling you had to come back to edit the post.

I am however so grateful that I know should I ever need help, you're the kind of person willing to take that time. Thank you.

[ClaraTaylor]

I don't know about any one else, but I rather regret offering advice to you Mr Munkeypoop. I will not make the mistake of doing it again just to be called dumb for doing so.

I have a feeling that, since the ongoing trend is for EVERYONE on this forum to misunderstand what poor widdle "oh woes me" MP wants out of posts where he "asks for help" you won't be the only one.
(I really can't believe we're all so "dumb" that we can understand people from the likes of India coming on this forum in broken (google translate) English and grammar that makes you physically flinch inside enough to hold conversations and offer our support where it is wanted, yet here is someone who fluidly speaks our native language and we can get it so wrong. We have much to learn GB.)

[The Black Sheep]

Thanks Clara. I am in no way a bully and I actually spent way too much time last night dwelling on this. What I said might have been too much tough-love and not enough hugs, but I completely misunderstood what the topic was about. I in no way meant to insult your judgment in who you choose to care for you. You're a big boy and know what's best and I apologize for assuming I knew anything about your circumstance.

But we're also all adults here, I think, at least physically. I'm not in high school anymore, I'm not a politician and I in no way promote bullying, so when the name calling begins, even if the dumb comment wasn't aimed at anyone in particular, the conversation is over. I don't predict this thread perking up from here so, that's it for me.

And Clara, you are most definitely on my support team! I feel exactly the same about you.=)

[Rolilancou]

This thread was made for support of splitting parents! In no way shape or form did I want to change my care! But for some reason you people think I need to change it! So what I go somewhere to get different care. So then I get hurt, more depressed, and taking care of horribly? I think not! When you have great care, and always will because you have a great loving family, then why would you change it? But it makes me sick when I see all these threads especially this one change from the whole topic to say that the person needs to change, but they are doing care wise or any other way when it has nothing to do with the whole lot the initial topic! People need to learn that just because where they live in a situation and the changes they had to make and help from organizations and facilities where they live work for them and was needed for them does not apply to every single handicapped person out there!

I'm sorry but with this thread you opened a can of worms.

I will keep my point in ground on my previous comment but this just sounds so familiar that I have to comment again for the last time in this thread because at the end we are all putting our two cents of experience either from the SCI or the Carer point of view. I'm fairly new to all of this SCI and to this forum so I can only say things that happened on my side of the street. When I said you sounded like my fiance I serioulsy mean it now. My fiance until now, 2 years after we've met he still doesn't understand that his parents were damaging him more than helping him and taking "great" care of him, why? because he just won't accept it. why? because they are his parents and he loves them and that alone is enough justification. But they were the source for making him feel like a criple, burden and an mere bulk and he was blaming himself because his parents were there because of him otherwise they would have split a loooong time ago yelling at four winds how miserable they were together. Of course I had to prove my fiance wrong, he's not a burden, he's 80"% more independent now than why back when he had his parents taking care of him, why? because they used to baby him so he really believed he was a breathing piece of meat.

Funny thing with his parents, he started staying with me for longer periods of time at my place and ooooh the surprise! mom and dad were still together???? Hmm I wonder what happened to the threats of divorce and all the fights making my fiance indirectly responsible for forcing themself to be together. That is BS like Qbounce said earlier, if they wanted to split they would have done it already even with your SCI.

So I understand to an extent that you want hugs, that you don't want reality checks and don't want to listen to the advises we are all giving you here and. I really hope you're putting their advise in the back burner like you say because when you least expect it, you will need it and it could very well be tomorrow (I don't mean to be cruel but realistic). My fiance didn't want to listen to me when we started dating that he needed to start looking for alternatives while him and I were doing our test runs and his parents were still alive and capable of taking care of him how ever they could best because they were just too old. of course he didn't listen because he's as stuborn as you are and he had it all figured out (yeah yeah). His dad passed away june of last year and luckily for him, he had me and I was all up for it to take care of him otherwise he would have seen himself in very deep S*it right now having only his mother around to take care of him. His sister, who was all hands on "Oh I can take care of my brother blah blah BLAH" backed out when his dad passed away because "her family" and blah blah so who ended up taking him? ME! because his mother is too old to take the whole load.

Your parents are doing the work of ONE person, your mother without your dad is completely useless ( I know you'll say that's not true that your mother is wonderwoman and your dad is superman), so for the sake of your own mother (if you love her so much as you say) you SHOULD definitely start looking for someone to help her around because YES, she thinks you are in the way of her plans but she will NEVER tell you, and with her aches and pains (if not now then later as she gets older... yes... it's true mom is not wonderwoman!) and then your dad on top of that I bet she's about to go crazy and I can guarantee she's the one pushing the buttons and creating all the fights just like my fiance's mom did becuse that's her own way of dealing with all that's going on in that house. I understand your mother the same way I understand my fiance's mother, it's too much for HER to deal with, as our women nature we always take the biggest loads and feel responsible for EVERYTHING.

Oh woes your mom and your dad dude! You really believe all they yell and fight for and tell you about how you are the glue that keeps them together? C'mon man!

Hugs of comfort by the way, in any way I meant to make you feel bad, it's just a reality check that if your family won't give it to you then you will hear it somehwere else.

[munkypoop]

I never had a problem with my care! Just a problem of the atmosphere that millions go through and that's parents separated. It has nothing to do with care, nor finding alternative care. I don't want people angry with me here, I'm not looking for different care in different ways to find it! And yes I don't want my siblings to take care of me. But I realize it's going to be that way, and at least it will be people I love not people. I don't know! My parents still have time left to take care of me and I love that and love them and sorry for making anyone angry by all this and I am done!

[richo]

deleted. I have been put in my place and stand corrected.

I wish you hadn't have done. It was so beautifully, and clearly put that even the biggest of idiots could understand what you were explaining.

Unfortunately we can't make the idiots absorb said information without trying to stamp their little feet.

I'm so sorry you wasted your time not just posting in the first time, but feeling you had to come back to edit the post.

I am however so grateful that I know should I ever need help, you're the kind of person willing to take that time. Thank you.

I don't know about any one else, but I rather regret offering advice to you Mr Munkeypoop. I will not make the mistake of doing it again just to be called dumb for doing so.

I have a feeling that, since the ongoing trend is for EVERYONE on this forum to misunderstand what poor widdle "oh woes me" MP wants out of posts where he "asks for help" you won't be the only one.
(I really can't believe we're all so "dumb" that we can understand people from the likes of India coming on this forum in broken (google translate) English and grammar that makes you physically flinch inside enough to hold conversations and offer our support where it is wanted, yet here is someone who fluidly speaks our native language and we can get it so wrong. We have much to learn GB.)

I don't know about any one else, but I rather regret offering advice to you Mr Munkeypoop. I will not make the mistake of doing it again just to be called dumb for doing so.

I have a feeling that, since the ongoing trend is for EVERYONE on this forum to misunderstand what poor widdle "oh woes me" MP wants out of posts where he "asks for help" you won't be the only one.
(I really can't believe we're all so "dumb" that we can understand people from the likes of India coming on this forum in broken (google translate) English and grammar that makes you physically flinch inside enough to hold conversations and offer our support where it is wanted, yet here is someone who fluidly speaks our native language and we can get it so wrong. We have much to learn GB.)

I don't know about any one else, but I rather regret offering advice to you Mr Munkeypoop. I will not make the mistake of doing it again just to be called dumb for doing so.

I have a feeling that, since the ongoing trend is for EVERYONE on this forum to misunderstand what poor widdle "oh woes me" MP wants out of posts where he "asks for help" you won't be the only one.
(I really can't believe we're all so "dumb" that we can understand people from the likes of India coming on this forum in broken (google translate) English and grammar that makes you physically flinch inside enough to hold conversations and offer our support where it is wanted, yet here is someone who fluidly speaks our native language and we can get it so wrong. We have much to learn GB.)

I don't know about any one else, but I rather regret offering advice to you Mr Munkeypoop. I will not make the mistake of doing it again just to be called dumb for doing so.

I have a feeling that, since the ongoing trend is for EVERYONE on this forum to misunderstand what poor widdle "oh woes me" MP wants out of posts where he "asks for help" you won't be the only one.
(I really can't believe we're all so "dumb" that we can understand people from the likes of India coming on this forum in broken (google translate) English and grammar that makes you physically flinch inside enough to hold conversations and offer our support where it is wanted, yet here is someone who fluidly speaks our native language and we can get it so wrong. We have much to learn GB.)

for f*@k sake he said a few things wrong give him a brake

[munkypoop]

Thank you

[richo]

Thank you

welcome........try slow those thoughts and emotions down a tad.......some peopel out here realy do care.........let them care slllloooowwwwwwwwLOL.RICHO

[munkypoop]

Thank you

welcome........try slow those thoughts and emotions down a tad.......some peopel out here realy do care.........let them care slllloooowwwwwwwwLOL.RICHO

I got you!

[richo]

Thank you

welcome........try slow those thoughts and emotions down a tad.......some peopel out here realy do care.........let them care slllloooowwwwwwwwLOL.RICHO

I got you!

MPdont get me wrong im no f*@king shrink,and iv got no right tring too tell you how to do.im just a bloke that cares

[Gr8t3ful]

Hey there This is the first time that I've logged into this site in awhile, just saw this. Just wanted to say that I kind of know how you feel about the fighting. I wasn't really in a similar situation, but fighting is fighting. It can drive you crazy in the form of all sorts of things, depression, anger, etc. Not pinning one thing on you, just examples. Hang in there, HUGS!!

And I once had to "face the forum" with a post I made that sort of got out of control with members having strong opinions and such about my topic. Just gotta take it in stride and move on, shit happens.

We all come to this site for a reason, to help and support each other.