23 replies to this topic

[cando]

I'm going to start off by stating that I'm the least confrontational person in the world, so I write this not to start an argument, but rather to bring up a concern I've had about this particular forum. I love it. I think that it is an amazing service offered to the Spouses and Carers of those with spinal cord injuries. I appreciate that it is available, and I often turn to it in those moments that I think I just can't handle any more.

However, I feel as though it is a bit unfair for those folks with spinal cord injuries to comment on the topics...especially the ones that offer negative comments. Just as we, the spouse or carer, cannot fully understand your situations...you certainly cannot completely understand ours. It is my understanding that this forum is one for the spouses and carers, specifically. Please let us share our experiences with one another, vent to one another, and offer advice to one another without the "you don't know what we really go through" comments. We, more than anyone, have a pretty good idea of what you go through, and our intentions are not to minimalize or trivialize your hardships.

Maybe I speak for myself, but I have a feeling there are others that feel the same way. As a Spouse or a Carer...our thoughts and feelings are real, and this forum is a beautiful place for us to share those thoughts and feelings with others that can relate. So, to those of you that have spinal cord injuries, I ask (respectfully, of course)...Please do not give us a hard time for taking a moment to express ourselves to others that understand.

[kjm465]

Hi Cando,

Thanks for taking the time to bring this up. I think that this is an ever-present issue from both sides.

There are some times however that I certainly appreciate being able to ask advice from other quads/paras and enjoy the frank responses. I agree however that I could certainly do without the one-up-manship that happens at times.

I think that both sides need to respect that we will never fully understand the other's position. But while you or I can spend a day in a chair and try to get it, it's highly unlikely (although possible) that someone with SCI has been a spouse or a carer.

That being said, carers also have the option, every day, to walk away from the disabled world - an option that is not available to our respective spouses.

I certainly appreciate the option to vent here without being judged just because I walk. Thanks for bringing this up.

K

[edlee]

Cando and K,,,, I'm at a loss. Since I joined this forum, I have not looked at any particular section to read or to comment. In fact, most of the time I don't even notice which I am in, when I read a thread. I usually simply go to forums and select "View New Content". I always assume that when I am in a public forum of any kind, I have the right to both read and ,, if I deem it appropriate,,, to comment on anything I find there.

There are, it seems,, some who agree with you about limiting access,,, but I am not one of those. Until Simon or Trinity tell me otherwise, I shall continue to do as I have done. You might be surprised to learn that I come away with a great deal more understanding of my wife's feelings, by reading about yours. And if I comment to you,, it is for the purpose of learning the things I need to know to make my own "carer's" life easier. And I thank you all for that.. Being the person she is,, she can't "walk away" from this situation any more than I can. So I need all the help I can get to make her life happier.

I'm afraid that if your feelings get bruised easily,,,, a public forum may not be the best place for you,,,, and making any part of this one private,,,, would take away from it's real value. You may not agree with my thoughts,, but I hope you understand them,,, that is the thing we are all here for, anyway.
ed

[kjm465]

Hi Ed,

It's nice to hear your response to this topic, and I can certainly appreciate your viewpoint. I think perhaps I wasn't clear in my previous response. I can't speak for anyone else, but for me personally, I wasn't suggesting that this forum (or any other) be made private or restricted.

What bothers me is the number of responses that I have seen from quads/paras directed toward wives/gfs/carers that simply say "you don't get it; you can walk, suck it up" or things to that effect - which arem't particularily helpful to anyone.

If I am understanding Cando correctly, she is requesting that anyone who responds is respectful to the fact that we all need the opportunity to vent, to share information, and to feel that we are not alone - that is after all why this community was developed in the first place.

Reading back on your previous posts, I have never found your content less than respectful.

Please see Cando's comment: "Please do not give us a hard time for taking a moment to express ourselves to others that understand." I believe applies to everyone on this forum - we are all entitled to our opininons and feelings. We don't have to agree, but I believe that we all have the right to have our feelings respected and acknowledged.

Unfortuntely there seems to be a sentiment among some members of this forum (and in the community at large) that carers do not have the right to become frustrated, or angry at their situation. This is the attitude that bothers me. I personally have no issue with this forum being open to all - provided there is an attitude of sensitivity when responding.

K

[cando]

Hi Ed,

I can appreciate your thoughts on the matter...it certainly makes sense that you could take away some insight into your wife's feelings. I applaud you for that.

On to another point that was made...it's not about feelings getting bruised...I think it's just more of a respect thing. You know? So often, I see carers pouring their hearts out, then SCI steps in to put that carer in his/her place about the fact that it takes much more effort for him/her to do things, and he/she can't walk away from the situation as a carer can. Yes, this is a public forum, and certainly every individual can choose to speak his/her mind...my point is just that it would be nice for the carers to express themselves without being made to feel badly about something that they probably already feel badly about even thinking...much less putting into the written word.

I appreciate your views on the topic as well. Thank you for posting.

Yes, K. That was exactly my point. You understood correctly, and I appreciate the support. I, in no way, meant to limit the forum to anyone. Your response was beautifully put.

Thanks,
Cando

[Tetracyclone]

All,

I worked as the lone carer for 2 quads who could do little for themselves beyond hooking an elbow for transfers and feeding themselves.. Exhausting and full of hilarity for all. I cared for my Dad.

Now I'm the quad. Some can relate easily to both sides, but a position of "you do not understand" is NEVER useful. It is verbal aggression.

That said, a lot of us gimps use the forum for social life and entertainment and any damn thing might trip off our fingers/lips.

Ignore all feedback that does not feel helpful. Keep your guard up just a little, and remember we most often hurt only those we love.

[edlee]

My point,,, other than that I take away a great deal from the posts of carers,,,,, was that this is a PUBLIC forum,,, so one must accept the fact that there will ALWAYS be someone reading it that has another axe to grind,,, or has had a bad day,,, or just has a hair up his/her arse,,, and that they will take out their frustration on who ever is handy. In a way,, their airing their ire, here, may keep them from doing it with their loved ones. That's probably a good thing over all.

The key is to remember that,, and to not take to heart attacks of any kind. On the other hand,, there may be times when I think someone is in error and that an insight from someone outside the situation,,, who is paralyzed,,, might help. You can be sure that I will open my trap. Rest assured that I will endeaver to show respect where it is deserved,,, and even if it isn't.
ed

[wheelchairbling]

Actually, I've found most of the posters to be very supportive. And when most of them tell somebody to suck it up, they're usually talking to the disabled member of the couple. Telling them to become more independent, get a job, see a counselor, etc.

Anyway, if some particular person leans on you too much, just tell them. "I'm pouring my heart out here. Kindly bug off!" Most of the regular posters here are pretty tough cookies, and won't get hurt.

[nomis]

The trouble with a carers-only forum would mean the likelihood of moving further away from the central reality of SCI. While some of the comments from SCI's may seem negative or whatever they still illustrate the attitudes of SCI people which carers are having to deal with all the time. Even negative postings generate positive discussion.

...anyway, we shouldn't hold back any secrets from one another. I'll tell you if you tell me.

[tyvin]

This is a public forum open to all; hence the word public. The forum is divided into threads for different purposes. If you don't want the input of the SCI members then put them on your ignore list. Other then that you could start your own forum exclusively for caregivers where only caregivers can join. I myself have a long history of being a caregiver before I was in my accident and feel qualified to help the people in this topic/thread.

What is it that really bothers you? All input should be welcome. There is a caregiver in all of us. One example you may take with you is on the parent forum we have members who have never had kids commenting and giving excellent advice. I believe you need to relax and try to be able to believe that we all can help each other; and be thankful that someone took the time to try to help you.

[jenny407]

My friend (wife to an MS person) is a carer, not me. I only have a very limited amount of experience caring for my mum and my husband after his accident.

Still, my opinion.

I can very, very well understand both sides.

In the long run, I feel it's a much better approach - as has been said - to opt for fairness and respect instead of drawing a line between carers and SCI members. Sometimes SCI members give fantastic advice, sometimes just to the SCI person the carer has problems with. Much more convincing when said by another SCI than by us ABs.

I have come to value the experiences, the wisdom, the compassion of many SCI members on here very, very much. It would be a pity to lose all that on this sub-forum.

But I do feel it's very important to 'allow' carers to vent, also. A carer with a burn-out won't help anybody. We are all only humans, in the end.

[dangerousdave]

There is no holyer then thou issue here

Whether SCI, friend, carrer, nurse, doctor or whatever
Nobody except the SCI fully knows the body / mind thing that goes on, every day, every minute. Only the SCI will experiance this delema
That does not give the SCI any right to critise or condem a non SCI who is trying to see the issues or help the issues a SCI has
That is the real delema that all on this site have to face up to
Its easy for AB's to see the science of the issues and the science of helping - but no one can see the mental issues the physical issues provoke except the individual SCI

That is why it is so important that we all discuss, we all argue, we all advise and educate one another
That can only be done by truthfull comments and critasism and openness to accept such

It is was makes this site so helpfull - well for me anyway

[mcwriter]

Gee whiz. I feel like everyone is trying really hard in the previous posts to perpetuate this good thing, and that is really nice to see.
I have looked far and wide for a forum for Spouses & Carers and truly this one is unique especially for the interaction between persons with the sci experience and those of us without. This is exactly what is needed---both sides---because it is too easy to want to stay in our own little bubbles and we cannot help ourselves when we only have our own thoughts and feelings to draw from.

The outside input helps us to see the bigger picture, to think beyond ourselves, to see when we are going in the wrong direction and correct our course, not to mention all the new ideas that arm us to face our challenges.

There is always a new person who starts out with a problem or a vent and they are taking a chance on exposing themselves to whatever reactions might come from cyberspace. They are not expecting negative feedback because their focus has been on building up the courage to post at all. Oftentimes, it is almost an act of desperation, a hand reaching out hoping someone will grab it so they won't feel alone while they are trying to figure out something.

No one does this action expecting something negative because what they are struggling to find is something positive, to give them something to hold onto, a sense of relief, a possibility they hadn't thought of....hope. They aren't ready for the kick in the pants, but alas it happens and there is no way around it, and this doesn't discriminate between SCI or AB.

What is important to remember, is that what is offered really is help whether it feels good or not. Because to face our challenges we do need to see both sides, we do need to consider the postive and the negative. Those who are new will never seek to read this kind of topic because they want answers, so it is left to us, the not-so-new, to remember to put ourselves in their shoes and to remember when we were seeking.

This is a unigue and valuable place. I applaud the longtime members here, because whether they'll admit it or not, they have wonderful hearts to help others!

[S&W Winger]

This is the reason for Simon and Garfunkle 's "Sounds of Silence" (have a listen, recently posted on the listening thread in the Cafe'):

COMMUNICATION

OR lack thereof...This is the reason for many wars, most divorces, all personal conflicts, etc....misunderstanding

Please let's keep it open because we do learn so much from each other and this is one of the purposes, no?

A new person would not know to request responses from other carers only, so a note would not be useful...as a special section strictly for carers would defeat the entire goal of communication

Maybe we could all be a bit more perceptive??? Notice that is the the first post by a individual and not brow beat them until we break them in??

But can't we al just get along? [oh you knew that was coming!]

Seriously, we need to commune on this open forum for oh so many reasons...

[cando]

Hi All,

I am actually not new to the site or to the world of SCI...hubby was injured almost 7 years ago. I was just inactive on the site for quite some time, and I'm just becoming reaquainted with it as I'm at a low point. I can appreciate some of the harsh realities offered by some, and I certainly appreciate the satiric humor offered by others. I was reading through the threads, and I just noticed again, that there were those carers out there screaming for help and support from someone else that knows exactly what they are going through...and I see these posts from SCI saying things to the effect of..."you need to suck it up because you have no idea what it is like for SCI. You need to stop thinking of yourself". I'm going to tell all of you...a carer rarely thinks of him or herself, so it would be much different if SCI says, "you know, I can understand that you are feeling the way you do, and this is how we overcome the low points for my carer..." The "oh suck it up" response is so counterproductive as it is basically what a carer hears more often than not. I know that for me, personally, when I want to vent (and I have amazing support from family and friends), I'm told..."yes, but things are so hard for him." I know this! I see it! I live it! My heart breaks for him EVERY time I see him struggle! I just want to say what I feel, and not be made to feel even worse about myself for feeling it than I already do.

I suppose the point to my post was to bring awareness to those guys and gals that feel the need to tell a carer to stop whining because they don't have it so bad. To THEM, I say this..."until you know what it is like to have the feces of a 270 man up to your elbows as you dig it our of a seat, and until you know what it's like for someone else's urine to splash in your mouth as you're changing out a pee bag, and until you dump the puke of someone else through all hours of the night, and until you hear your name 16,000 times a day to do something for someone else, and until you clip the toenails or "groom" the person you are supposed to be intimate with...you can't understand our side either.

Yes, I realize it is a public forum, and I suppose I shouldn't discourage anyone from speaking their minds...it's just so frustrating to visit a forum that says "Spouse and Carer's Forum" then to be "put in your place" because you don't "understand" what it's like to have an SCI. We never claimed to completely know what you go through...we are simply explaining what we go through.

To all of you that offer sound, productive advise whether it is all rainbows and butterflies or harsh as all get-out, my intention was not to call you out. I realize that we can all learn from each other...it is my hope that we can do so without saying, "hey carer, you suck because all you do is think of yourself. All I hear in your post is me,me, me or I, I, I." Of course this is all you hear, because at this exact moment in time, I (the carer) am taking a moment for myself to reach out to the other people in this world that have some comprehension of what I am experiencing every day.

Sincerely,
Cando

[rue2you]

We should all be caregivers whether we are SCI or AB. That is called love. The trap, I believe, is when we get into our own world too much. That is called selfishness - which is the opposite of love. These two things - love and selfishness - already exist in any kind of relationship and when a disability enter the equation - well, that is just one more reason for us to get engulfed in ourselves. Even on this forum, and the relationships between the people here, this is still true. But like any relationship, calm communication between all parties and a mindset of trying to see the other side of the point is the solution. It doesn't mean you may always agree with the other party, but that you have tried to understand. Sometimes, tough love is the answer. Sometimes that reminder that we are being selfish is hurtful to us at the moment, but it is helpful in the long run if that is true and we take it to heart. Which is why a public forum can be helpful. Because as we vent or share, we have an outside perspective that can give us a view of ourselves that we aren't privy too because we are blinded by ourselves.

I say keep the communication coming! Because a true relationship is not defined by where I "fit" in. It is defined by what I am willing to give of myself and what I am willing to receive of others. My hope is that the tone and spirit of this forum will be one of understanding, encouragement, and yes, even tough love but of respect and civility one of another.

[jscott92064]

cando, on 18 December 2010 - 04:12 PM, said:

Hi All,

I am actually not new to the site or to the world of SCI...hubby was injured almost 7 years ago. I was just inactive on the site for quite some time, and I'm just becoming reaquainted with it as I'm at a low point. I can appreciate some of the harsh realities offered by some, and I certainly appreciate the satiric humor offered by others. I was reading through the threads, and I just noticed again, that there were those carers out there screaming for help and support from someone else that knows exactly what they are going through...and I see these posts from SCI saying things to the effect of..."you need to suck it up because you have no idea what it is like for SCI. You need to stop thinking of yourself". I'm going to tell all of you...a carer rarely thinks of him or herself, so it would be much different if SCI says, "you know, I can understand that you are feeling the way you do, and this is how we overcome the low points for my carer..." The "oh suck it up" response is so counterproductive as it is basically what a carer hears more often than not. I know that for me, personally, when I want to vent (and I have amazing support from family and friends), I'm told..."yes, but things are so hard for him." I know this! I see it! I live it! My heart breaks for him EVERY time I see him struggle! I just want to say what I feel, and not be made to feel even worse about myself for feeling it than I already do.

I suppose the point to my post was to bring awareness to those guys and gals that feel the need to tell a carer to stop whining because they don't have it so bad. To THEM, I say this..."until you know what it is like to have the feces of a 270 man up to your elbows as you dig it our of a seat, and until you know what it's like for someone else's urine to splash in your mouth as you're changing out a pee bag, and until you dump the puke of someone else through all hours of the night, and until you hear your name 16,000 times a day to do something for someone else, and until you clip the toenails or "groom" the person you are supposed to be intimate with...you can't understand our side either.

Yes, I realize it is a public forum, and I suppose I shouldn't discourage anyone from speaking their minds...it's just so frustrating to visit a forum that says "Spouse and Carer's Forum" then to be "put in your place" because you don't "understand" what it's like to have an SCI. We never claimed to completely know what you go through...we are simply explaining what we go through.

To all of you that offer sound, productive advise whether it is all rainbows and butterflies or harsh as all get-out, my intention was not to call you out. I realize that we can all learn from each other...it is my hope that we can do so without saying, "hey carer, you suck because all you do is think of yourself. All I hear in your post is me,me, me or I, I, I." Of course this is all you hear, because at this exact moment in time, I (the carer) am taking a moment for myself to reach out to the other people in this world that have some comprehension of what I am experiencing every day.

Sincerely,
Cando

Hello Cando:

I hear you and get where you are coming from. Points well made. Thanks for sharing.

J

[mcwriter]

Whatever I missed, I think I'm glad I missed it and stepped in when things were coming out of the wash!

I take it that there was some comparing of plights going on.

Whew.

Merry Christmas....I feel a new topic coming on...don't know what it is yet, though:)

[cando]

mcwriter, on 19 December 2010 - 10:27 PM, said:

Whatever I missed, I think I'm glad I missed it and stepped in when things were coming out of the wash!

I take it that there was some comparing of plights going on.

Whew.

Merry Christmas....I feel a new topic coming on...don't know what it is yet, though:)

No, you missed nothing. I was just writing in very generic terms...about some things I've noticed over a couple of years with my being familiar with the site. Again, I wasn't trying to be confrontational...just something of concern to me personally.

Hope you have a Merry Christmas as well!

[GoldenYears]

I love hearing from "both sides" of our issues because it tends to knock the walls down that I thought only our family had been stuck behind. It has made me a better Caregiver.


Transformation is never easy. The fact is it pretty well tramples "self". I think this, Cando, could be disturbing to you, and it is disturbing, very disturbing.


What you are enduring is not simply an adjustment. You are being transformed in the truest sense of the word, as is your loved one. Yes, very suddenly "self" has an undefined position in the greater scheme of things, and that is a pure misery. And, there we all stand or sit like deer in the headlights.


I really wish I had kept a journal this year because now when I think back, it all seems to have gone by so quickly and many things have been forgotten. In the truest sense of the word, it's been a hell we were not prepared for and did not have the skills to deal with. Worse, those needed skills were not like tools someone could loan us. We were suddenly alone, away emotionally and intellectually from all that was familiar, and oh lord we had to "do", "make do", and "don't do". Me? I looked for the green lights, the red lights, all the familiar traffic signals and they just weren't there. Not only that, we had to build our own "highway" to travel on. And the dad-gummed transportation was a wheelchair! And a devil was sitting in that chair!


Someone told me once that you only want to book passage on a ship that is piloted by a Sea Captain who has sailed many choppy, bad, horrific seas. He will bring you safely home. Smooth seas cannot ever teach such a great lesson.


So, wherever life positions you to receive knowledge, be it a choppy sea, a disabled person, another Caregiver, or a "highway" that just ain't there, just know it is all for your benefit. Knowledge is never something we should pick through and cull out what we don't like to see or hear.


Joy is now the soft wind giving you wing, not the hard, expensive and loud party. It is rushing the family out into the yard to see a full moon, the stars, the planets. It is the coconut tree that sprung from a coconut, shaked from a tree in Haiti and drifted across an ocean, that you found on a Florida beach and planted. It is witnessing greatness blooming in your loved one and yourself. You will find that true greatness is not sophisticated but rather soft and yielding. Genius and joy are a curious blend of simplicity, softness, and compelling focus.


So for you today, you get a big hug from Granny Golden. My best wishes to you, Dear, and to your loved one.

[cando]

GoldenYears, on 20 December 2010 - 02:48 PM, said:

I love hearing from "both sides" of our issues because it tends to knock the walls down that I thought only our family had been stuck behind. It has made me a better Caregiver.


Transformation is never easy. The fact is it pretty well tramples "self". I think this, Cando, could be disturbing to you, and it is disturbing, very disturbing.


What you are enduring is not simply an adjustment. You are being transformed in the truest sense of the word, as is your loved one. Yes, very suddenly "self" has an undefined position in the greater scheme of things, and that is a pure misery. And, there we all stand or sit like deer in the headlights.


I really wish I had kept a journal this year because now when I think back, it all seems to have gone by so quickly and many things have been forgotten. In the truest sense of the word, it's been a hell we were not prepared for and did not have the skills to deal with. Worse, those needed skills were not like tools someone could loan us. We were suddenly alone, away emotionally and intellectually from all that was familiar, and oh lord we had to "do", "make do", and "don't do". Me? I looked for the green lights, the red lights, all the familiar traffic signals and they just weren't there. Not only that, we had to build our own "highway" to travel on. And the dad-gummed transportation was a wheelchair! And a devil was sitting in that chair!


Someone told me once that you only want to book passage on a ship that is piloted by a Sea Captain who has sailed many choppy, bad, horrific seas. He will bring you safely home. Smooth seas cannot ever teach such a great lesson.


So, wherever life positions you to receive knowledge, be it a choppy sea, a disabled person, another Caregiver, or a "highway" that just ain't there, just know it is all for your benefit. Knowledge is never something we should pick through and cull out what we don't like to see or hear.


Joy is now the soft wind giving you wing, not the hard, expensive and loud party. It is rushing the family out into the yard to see a full moon, the stars, the planets. It is the coconut tree that sprung from a coconut, shaked from a tree in Haiti and drifted across an ocean, that you found on a Florida beach and planted. It is witnessing greatness blooming in your loved one and yourself. You will find that true greatness is not sophisticated but rather soft and yielding. Genius and joy are a curious blend of simplicity, softness, and compelling focus.


So for you today, you get a big hug from Granny Golden. My best wishes to you, Dear, and to your loved one.

Thank you Granny Golden. There are some beautifully written words there, and I appreciate the hug ;0)

[mcwriter]

Granny Golden's words are such a pleasure to read.

It is so true that the common thread here is 'uncharted territory' and while we come across bits and pieces of clues along the way, we have to build our own road to have something under our feet with every step.

Our road is still under construction and it is years upon years later...ha! But that is a good thing.

[GoldenYears]

This is as true as it gets -- if I gotta get pitched into this "thang" that has uprooted us, turned us upside down, banged us around, turned us every way but loose, and then flung us to the ground, I want to endure it with people ...

just like all of you!

You warm my heart and give me courage, and I cannot thank all of you enough for being you.

Granny Golden

[mcwriter]

There are so many good things happening on this forum, so many great ideas, and great friends sharing similar circumstances. I look forward to it soooo much!

I have actually become so spoiled by my husband that I think it has actually become a detriment in some ways....he gives me the luxury of time....time to do what I need to do when I need to do it. It's like if it has been a particularly full few days and I'm just wiped out, he insists I do whatever I need to do to get rested and refreshed. He thinks if one is tired, sleep longer or take a nap. It is not always possible, but having that temptation there just makes me not want to do the have-to's--hahaha. So you see how it can also be a bad thing, because there are things that just have to get done no matter what.

The nice thing is, when I am caught in the not-wanting-to-do-something, I can blame him and we laugh about it when I say "This is your fault!" hahaha.

I wouldn't trade this guy for anything