Venting for Para Caregiver

[shmily524]

http://sci.rutgers.edu/forum/images/smilies/frown.gif Hi

I have to vent and I belong to a list serve for spinal cord injured caregivers but I feel way out of place there.

My hubby is a para (L1/L2)== post injury just over a year (March 18th 2002)

While we are much better off than someone who is dealing with being a quad -- we still have our tough times. Bob is even better of than many paras because he has his quadricep muscles and so has no issue with balance and mobility is possible with a walker (though very difficult)...

Anyway -- even though we are better off in many ways -- it is still very difficult. Yet - when I get upset or depressed or frustrated (Like now at 4:30 in the morning)... I don't feel like I have the right to be upset. I couldn't possibly post a "vent" note on the list as I get the feeling the people are annoyed with my complaining. http://sci.rutgers.edu/forum/images/smilies/frown.gif

We belong to a support group that we go to every other wednesday but again we are in the "best situation" out of the whole group. Still don't feel like we can complain.

We should be (and we are) grateful for all that we do have. Its just that even with that we have our moments. This being one of them.

Does anybody know of any list serves that are specifically for paras?

Thanks for listening anyway.
Dee

Positively,
Dee~World's most passionate behavioral nutritionist and Ever-loving wife, friend and lover to the sweetest guy on earth, Bob (L1/L2, March 2002)

[marmalady]

Dee - ((((HUGS!!)))) Hi, lady!

First, and most importantly, you have to not be comparing your situation and hubbie's abilities to anyone else's. While it is true that quads have more to deal with, even the different levels of paraplegia have differing abilities/disabilities. What it IS important to remember is that everyone is in a difficult life situation, period.

You have every right to vent your feelings, and express your anger, confusion, guilt, and neediness. SCI affects everyone in the family. The guilt feelings are normal, a la 'what right do I have to complain, when my family member is dealing with so much?'. While family members don't have to deal with the loss of their 'normal' body functions and abilities, we do have to deal with our own feelings of sorrow, grief, loss; and as Wise has pointed out so often, SCI is devastating to a loving family relationship, and often it takes longer to 'adjust' for us than it does for the injured person.

I know the group you belong to http://sci.rutgers.edu/forum/images/smilies/wink.gif, and totally understand your statement. I don't think you'll find that here, and hope you join our little 'group' more often! I'm so proud of our caregivers here, and the support given to each other is truly awesome.

Dee, I've met you and Bob, and seen the love you have for each other. Remember that love, and everything else will fall into place, with a little coaxing and prodding! Hugs to you both. jackie

_____________
Tough times don't last - tough people do.

[Free]

What are you venting about? At your husband's level there should be many more things he can do, then not do. My advice: Take a look at all activities for daily living for the seven days of the week. Note where you need assistance and then develop a strategy to deal with each of them. If you aren't sure how to address a particular issue(s), post it here and someone should be able to help. Desperation is better than despair.

[marmalady]

Free, while it's true that this person's level, he is very independent compared to folks with higher level injuries, that's not really the point of Dee's post. No matter what the level of injury, there are life altering changes in a relationship. As a wife and caregiver, Dee has every right in the world to feel anger, grief, loss of lifestyle, impingement on her own freedoms; everyone of us who is a caregiver has felt the same emotions, regardless of our family member's level of injury. The feelings are valid, and here on the caregivers' forum, our members should feel free enough to post whatever their feelings are, and to 'vent' when they need to, just as the folks in chairs have every right to vent on the other forums.

_____________
Tough times don't last - tough people do.

[KDK513]

When my family was in a head on car crash with a drunk driver 10 years ago it was shocking to everyone we knew or those who knew of us . It was on television, in the newspaper and this always happened to someone else, not someone you knew. The words of comfort I continually heard were "well, at least you didn't die". True, but I shared an ambulance with my 8 year old son, my husband with our 10 year old daughter. We were in another city and family members had to travel to bring our children home, after their broken bones were set and they were stitched up. Our injuries were tended to and Dave was off to ICU and I to a hospital room which we eventually shared.By the way we, are still here because our vehicle was bigger and we were buckled up. We were still reeling from trying to rebuild our home which had been hit by lightening 6 weeks previously.

Here is what I learned and what guided me through the shock of my husbands paralysis 6 years later. Never, ever minimize the hell you have been through. It is your hell and you have every right to hate what has happened to you. It hurts, causes physical pain most will never understand and you have every reason to feel free to acknowledge that it hurts. It hurts all the way to the deepest part of your soul and never ever apologize for that. You don't have to dwell on it, do not capitalize on it, but never say "at least". I truly despise that term "at least". Because your pain may be greater, in no way does it minimize the pain someone else is experiencing.My husband is a T4 para and life for a para is extremely difficult.

[shmily524]

http://sci.rutgers.edu/forum/images/smilies/confused.gifWhat am I complaining about?
Statements like yours.
I do realize how very lucky we are that Bob's level of injury allows for total independence. And you are right -- he can do everything on his own. Heck, I am going to a convention for work and he will be alone for three days.

Nonetheless, in the middle of the night when he wets (this rarely happens and when it does... we have learned that it is likey a bladder or UT infection). Regardless.... at one o'clock in the morning when he wakes to IC and realizes he is wet.... He needs to get changed and cleaned up. Can he do this on his own? yes. BUT as his wife and best friend, I will not let him do it on his own!
Besides...I'm not complaining about that...
I thank God for every day that Bob and I are together (the good AND the bad)... We have no children... we are each others worlds. Oh, I shouldn't have said that we have no children... as I've been told we are even that much better off because we don't have to worry about kids on top of this.
What I am complaining about is that as a para and a para caregiver... there doesn't seem to be anywhere for us to get support (beyond medical/situational advice) Emotional support.

For the most part we are both very upbeat, positive people and we are dealing with our situation pretty well. However, there are times where we are upset by the fact that we cannot play volleyball together on Wed nights. or when we can't go bike riding together or with the summer coming up... we can't take long walks along the water's edge. We mourn what we have lost and yet
we are made to feel guilty by the comments...
"at least you can...."
"what do you have to complain about"
"at least you both work and aren't on medicare"

You know, Free, it isn't about what we have over what another person has. It is about what we HAD and what we have LOST. That is really what I am venting about. We are very grateful for what we have and even our new situation has brought new people into our lives and a new perspective -- neither of which we would have had without this.

All I am is saying is... we need to grieve we need to be allowed (without being made to feel guilty)to mourn the simple things that we have lost. You know, it almost feels like we don't belong in the "able-bodied"community and we don't belong in the "disabled" community. We are lost in the middle and looking for support.
That is all.
Positively,
Dee

[brian54806]

Hi ,, Why does a para need a caregiver??? I have been a T5 para 22 years, always lived on my own exept for when I was married 10 yrs, Is still alot of things you can do, I have been camping, boating,won 2nd place at drag races,ATV'N,,, The last 4 years I have been living on a farm 8cows I take care of, and with a little help I got back on a tractor after 17 years ,,things may change, you just have to figure a way to get around them

I wandered into this thread, and I feel compelled to make some comments.

-Complaining about Free's statements?? You and your husband have no idea what things could be like for you.

-Cleaning him up when he can do it on his own?? Is he two years old?? You're holding him back.

-People aren't trying to make you feel guilty with those comments - they are telling you it could be worse

-What you and your husband HAD and LOST aren't nearly as much as a quad loses. A quad loses more than a para. I will not argue this.

-Perhaps next time you're upset about not playing volleyball or walking on the beach together, remember that he's still there to be together with. Try being 25 years old and having to go to the cemetery to see your 23 year old wife/best friend's headstone.

None of these comments are made in order for you to feel guilty. You need to realize no matter how bad you think you have it, things could be much worse. Focus on the positives and quit dwelling on the negatives.

[Sci Mom]

Welcome Dee. Please feel free to vent anytime...we all do!

cjo~My guess is that Dee has already heard everything you had to say in your post. That's why she came here to vent. There is drama in your story, of course. No one is arguing that. And if you read Dee's posts carefully, she has acknowledged the luck in their lives. That doesn't mean you have the right to minimize or negate the loss and pain that both Dee and her husband have gone through. You may not be trying to make her feel guilty, but it sure sounded like it. Or at least make her feel wrong for having the emotions that she does have. And frankly, while I usually agree with your posts, I thought you sounded incredibly arrogant to tell her that "You and your husband have no idea what it could be like for you." How the hell do you know that?

brian~A para may require a caregiver depending upon certain conditions; you never know. For instance, my daughter is a para, but while she was still in the TLSO (aka Turtle Shell) she required assistance when doing any self care. When her spine became infected and she was not able to sit up for six weeks, she required a caregiver. You just never know. I think your level of independence is great, btw.

[kate]

My 9th-grader just read through this thread with me, and here's her comment:

People who are injured don't know what it's like to be US. They can't put our experience into perspective, because they only have their perspective.

She's right. Sometimes people with SCI can add insight, can make useful suggestions, can share what has worked for them, but they'll never get what it is to live, daily and BY CHOICE, with this kind of loss. Just as we'll never get what it really is to live with theirs. I think you should NOT let these kinds of responses stop you from posting what you honestly experience--believe me, plenty of people who don't think of themselves as "caregivers", myself included, know exactly what you mean.

My husband has a c6 injury, but his disability after 2 years is not devastating . . . it's just enough to make us all constantly aware that our old life is gone (at least until the cure). And we are still, some days, hollow with grief over that loss.

Originally posted by Sci Mom:

That doesn't mean you have the right to minimize or negate the loss and pain that both Dee and her husband have gone through. You may not be trying to make her feel guilty, but it sure sounded like it. Or at least make her feel wrong for having the emotions that she does have. And frankly, while I usually agree with your posts, I thought you sounded incredibly arrogant to tell her that "You and your husband have no idea what it could be like for you." How the hell do you know that?

Sci Mom - I know things could be worse for them - he could be dead or a dependent quad. Those situations are worse. Do you disagree?

If you think it's arrogant for me to point out the fact that I lost the most important person in my life and that I am a quad, you are dead wrong. I take arrogant to be "an assumption of superiority over others." Believe me, I feel inferior to everybody.

Shmily - you say you realize how lucky you are, well that's what you should do. I, and many other SCIs here, only make it day to day by focusing on what we do have, or what we can do. I'm only trying to encourage you to do the same. It's going to be a long and miserable road if you dwell on what you don't have.

After having a few moments to ponder -

Everything about SCI sucks. Everybody involved with SCI is put in a position they shouldn't have to deal with. BUT, you won't get through it, or beat it, by being negative. We need to channel positive energy to cope with, and eventually conquer, this evil that has been brought in to all of our lives.

I hope that nobody construes this as an arrogant, guilt-provoking statement. I just want us all to get better, and this won't happen if we try to live our lives in the past.

[Sci Mom]

cjo, let me clarify my post.

Being a dependent quad, or dead, are both worse situations. I don't disagree with you at all. I began thanking God from the minute I learned my daughter's injury level (T11) and told everyone who would listen "This is doable!". I also agree with you that negativity will not make life better or more bearable or anything; being positive and focusing on the positive is the BEST thing all of us can do.

There are times, though, when things seem to spin out of control. Life can seem very overwhelming. These times may be brief, but they exist...and they exist for paras, quads, and caregivers. Very few people can be positive 24/7 and looking for a bit of emotional support during those bleak moments, hours or days isn't a crime. I think Dee was having a bleak moment, which can happen to any of us. She just has the "misfortune" to be married to an L1/L2 para and she gets the message that she shouldn't have any bleak moments because of her husband's level of injury. I disagree. That's all. Maybe the pit she found herself in wasn't as deep as the pit you sometimes find yourself in, or I find myself in...but it's a pit, just the same. It's just been a year for them, too, I believe. That first anniversary sucks, doesn't it? I also think ignoring those bleak times and pretending you're happy, happy isn't really all that healthy. People need to acknowledge sadness and grief; it's easier to move away from it if you do, I think.

As to my arrogant remark. I apologize to you for that. I didn't say you WERE arrogant, but that you SOUNDED arrogant. And not because you pointed out that you're a quad, or that you lost someone truly special. Not at all. I thought it sounded arrogant to assume that Dee and her husband are clueless as to what people with higher level injuries go through. They know. We all know. There is always someone worse off...you're a quad, but Chris Reeve has it worse, with a higher level. And Chris is damn lucky not to have a severe head injury in addition to his SCI. Or what about the young deaf man who relied upon sign language to communicate..and became a high-level quad. I can think of lots of worse case scenarios...so can all of us.

We've all been forced to join this horrible, nightmarish club and it just seems that the least we can do is support each other. I admire you, cjo, for all your accomplishments and the way you seem to be moving on with your life. I hope your positive trend continues. I have no doubt that it will...

Vicky

SCI Mom,

Very well thought out and written post.

I have a few comments...

A week ago was my 2nd anniversary - it was Good Friday of 2001 for me. This one was tougher than the first. I hope this doesn't happen for anybody else.

I am not happy, nor do I pretend to be happy. I simply cannot be negative, because I saw what it did to my mother - my caregiver. I feel I have made her life much more tolerable by not complaining as I used to. I don't pretend, I am very much a realist.

As for Christopher Reeve and the young deaf man - that is exactly the point I'm making. Worse-case scenarios help me make it through, just as I was trying to help Shmily realize that she and her husband can make it through.

[This message was edited by cjo on 04-19-03 at 11:27 PM.]

[Obieone]

I probably won't be as eloquent as the rest of you all but here is my 2 cents worth . . . for what its worth! http://sci.rutgers.edu/forum/images/smilies/rolleyes.gif

My husband is a T5 complete SCI pretty much independant as far as activities of daily living go! His balance is not so great, I wish he could do more rehab but we live a few hours from the nearest large city centre, we have a family of four kids and somehow need to make a living in the midst of all that is different about our life! Money is an issue for us and affects most decisions we make! He is 56 years old as well. . . truth be told age does make a difference. That being said . . .

I understand completely Schmily the loss you feel - regardless of level of injury for us I think, loss is loss! I miss some things about our old life so much that it is a physical ache . . . I don't apologize for it anymore I just go with it for awhile - it passes - and then I go on! You don't have to explain away your feelings to anyone but I do understand the need to be understood! But lets be honest except for those of us here no one can really understand it "all" unless they have experienced it and I do pray everyday no one has to experience it! Catch 22!! Some may percieve it as morbid or perhaps selfish I suppose but I've said to those close to me that emotionally - in some ways - death would have been easier in some respects to cope with. I've have experienced both!

This injury presents us with new challenges with every passing day! I didn't even realize how much I missed some things about our old life until a few years had passed! So much happens those first few years post - talk about emotional overload - never mind the physical challenges (and yes I mean for me as well) ! And all the while our family is growing, changing as are we!

I'm so glad you found us Schmily! I believe Dr. Wise designed this web site for all of us to find a comfortable place to "vent", learn and find hope! You come here and blow off steam as often as you need to and eventually there may come a day when you won't need to visit as often . . . then again you may need to visit everyday for months on end! Who can tell! Thats the idea of the caregivers forum and there are some very wise people here who take care of business and will never make you feel guilty for any of the feelings you have! It's kind of the idea of this forum . . . isn't it????

Just so uou know Schmily - I have never known such profound sadness in my life as I have since my husbands injury! But since I found CareCure it's been a little easier to live with! I hope it will be for you too some day!

Obie(without the long grey beard)

[rtr]

Living with a SCI and caring for a person with a SCI are both difficult, regardless of the injury level. Sitting around "comparing boo-boos" wastes energy that we could use elsewhere.

Schmily, your husband has a SCI? You care for him or care about him? Then you belong in this forum. Welcome.

[marmalady]

For CJO and Brian and RTR, and Free - Please, let's remember that Dee and Bob are barely a year post injury and trauma. In the 'stages' of grief, they're newbies. Dee is struggling to find a balance in her new life with Bob, and is going through the normal stages of grieving for the life that was lost. That's normal. Let's give her the room and respect she deserves to allow her feelings to come to the front, and deal with them, and then move on.

IMHO, it does nobody no good to compare - whether it be levels of injury, life situations, or the trauma of the events that put us all in this community. We're ALL here because our lives have been touched by SCI, whether we be family members, friends, caregivers, or the affected people. The one common thread that holds us together is the SCI. Yes, it's easier for a low para than a high para; it's easier for a high para than a low quad; it's easier for a low quad than a high quad - so what? We've all had our lives changed, and we've all suffered loss and grieve for those lives lost.

My son is a C4-5 quad with a head injury and TBI. When he first came home from rehab, some of my caregiving duties included waking every 2 hours to turn him, give him his meds, cleaning his trach tube, and quad coughing him. Now, 4 years post, he has no trach, can cough up his own gunk, doesn't take night meds, and can go 5+ hours before being turned. My life is 100% easier than it was when he first came home. I have it better than I did then. Do I still grieve? Yes. Do I still feel loss? yes.

You all say SCI sucks for you; well, it sucks for us family members, also. Please allow us to have the freedom to say that here, just as you have the freedom to vent on the other forums.

I know Dee and Bob; Dee is so not wallowing in her grief. I have every bit of faith that she and Bob will continue to make the adjustments needed to get on with their lives. She's only expressing the feelings that are normal for all of us. Let's allow her, and everyone else who posts, to do so.

_____________
Tough times don't last - tough people do.

[brian54806]

It would be very hard on me if my wife missed things like playing valleyball together more then she cared for me,,If you cannot deal get a divorce and let them go on to find someone whos really loves them,,, I am glad no to be married to Obieone who thinks death would have been better,, That would kill me emotionally,,,I just get upset that some people think if you are disabled you are worthless, not capable of love,I have been told by more then one women I am a better Lover then most Able bodied men

[shmily524]

First, thanks to those of you who have a clue about the stages of mourning and for supporting me in one of my INfrequent negative moments.
(Especially thanks to Marmalady!!)

Okay ~~ now for the rest of you ~~
BRIAN54 http://sci.rutgers.edu/forum/images/smilies/mad.gif
"It would be very hard on me if my wife missed things like playing valleyball together more then she cared for me"
You will most likely never know a love as strong as my love is for Bob. We've been married for 16 years and still we play together. As for me missing volleyball ... it is not that... I miss PLAYING WITH BOB. I never liked volleyball much. Yes, he is still with me and not a day goes by where I don't thank God. But then, even before this I thanked God for having Bob in my life!
CJO http://sci.rutgers.edu/forum/images/smilies/rolleyes.gif
"BUT, you won't get through it, or beat it, by being negative"
--- Um CJO --
People in our situation are going to have negative feelings and while it is not healthy to focus on them (by the way, we don't focus on them! We simply have our moments were we come to this list for support). It is just as unhealthy to bottle them up. It has been shown over and again that holding in negative feelings can.. can have very ill effects on one's health.
It is very healthy and okay to vent - especially guilt free!
As for my cleaning up my husband from a bladder accident that occurs at 1:00 in the morning? Trust me, I am not holdng him back. Hmph! I am his driving force - the doctors and therapists say it and so does Bob - I do those things for him because I love him - When I had bronchitis and was up coughing all night. He took care of me. That is what couples do for each other.

And for the rest of the less than supportive people that responded...
To "support" is to be able to LISTEN to another person WITHOUT judgement. Without being so self-absorbed in your own situations that you are unable to really understand where that person is coming from. Support is NOT comparing, nor is it boasting or complaining and it is not hurtful. Support is simply listening and saying that I hear your pain with genuine concern. If you are unable to do this, don't comment on the post! Geesh!! http://sci.rutgers.edu/forum/images/smilies/rolleyes.gif

Positively,
Dee~World's most passionate behavioral nutritionist and Ever-loving wife, friend and lover to the sweetest guy on earth, Bob (L1/L2, March 2002)

[KDK513]

This is one of the strongest, most compassionate, resilient group of people I have come to know. I cannot recall a single instance where a Caregiver posted that their life was worse than anyone elses. From the school of hard knocks we have learned to balance the grief in our lives and still be able to rejoice over the many milestones. Though all our situations are unique we share a commonality in what we have lost. Our lives are forever altered. I cherish the knowledge that I can come to this forum and share my deepest feelings and someone will understand and not pass judgement. None of us are in competition or need to quantify who's got it the worst. It is difficult from all perspectives.

Know what? I am happy today and on most days, but that doesn't mean I won't slam something down in frustration or get teary eyed over soiled sheets. So what? I think it is very healthy to be able to honestly acknowledge my feelings. We have all wrestled with emotions we never thought to feel. When someone shares those feeling here it is inappropriate to respond by saying you are glad they are not your caregiver. If that is all you have to contribute to this forum, then please go away and share your harsh judgements somewhere else. This is a place to provide support and understanding.

[brian54806]

KDK I never said Im glad your not my caregiver,,, I said Im Glad you not my wife because she stated that death may have been easier to cope with.,,,,But I have never posted vefore I was just offended by Para Caregiver,,Sorry,,I will shut up, what do I know I am disabled, I guess in your eyes if I got married again she would be labled a caregiver...

[KDK513]

We have all had to cope with our feelings about death through this experience. Thank you for you apology and I am also sorry I asked you to go away. It is helpful if we all try to control our defenses, cause these never reflect favorably on any of us.

Originally posted by SHMILY524:

To "support" is to be able to LISTEN to another person WITHOUT judgement. Without being so self-absorbed in your own situations that you are unable to really understand where that person is coming from. Support is NOT comparing, nor is it boasting or complaining and it is not hurtful. Support is simply listening and saying that I hear your pain with genuine concern. If you are unable to do this, don't comment on the post! Geesh!! http://sci.rutgers.edu/forum/images/smilies/rolleyes.gif

I am not so self-absorbed in my situation that I don't realize things are tough for you. You keep talking about comments that are made to make you feel guilty - that was never my intention. Quit living your life by wishing things were different. I only survived because I was shown this by those that loved me.

I was simply trying to help you, but you and others twist it around and attack my character by calling me self-absorbed, insensitive, self-righteous, and arrogant. I was also invited not to post here. Who's the one being attacked??

I read this forum to understand what my caregiver may be feeling. She constantly complains about how tired and stressed out she is. I try to make her life easier because I really care for her. Ask her if I have complained once about paralysis to her in the last year.

I feel I can see things from your points of view, can you afford me the same courtesy?

[Emi2]

Of course it could always be worse...I used that belief to get me through the first year and I still use it. But...there are many days, moments, even weeks when I don't care if it could have been worse- IT STILL SUCKS and it's ME not some hypothetical worst case scenario. It's times like those when no-one can really understand-even my fellow SCI people here- but this is the most supportive, understanding place I can fall when I need to. I'm sure it's the same way for Dee and Bob... I actually think that it may be harder for the caregivers in some sense because they have a choice. I had no choice, so I dealt with it, Dee stays because she obviously loves her husband but it's a choice that she made. And my mom and dad have undoubtably had a harder time dealing with seeing me hurt, I imagine a wife as loving as Dee feels the same.
Anyhow, Happy Easter everyone

"Learn from yesterday, live for today, hope for tomorrow"
~ Anon

[Obieone]

After reading everyone elses responses I felt compelled to respond to those who may have misinterpreted what I meant when I said - "emotionally, death may have been easier to cope with, I've experienced both" - strictly speaking for myself now, I mean that the grief I've felt in relation to my husbands injury is the same in many ways as the grief one feels in death. I have lost people very close to me so I think I can speak about this with some measure of validity. The difference to me with sci is that it is never ending it is continually freshened by an event, a thought or memory and even just by looking over and seeing his silouette as he sits in his chair. I can be having a perfectly decent day and I will be suddenly overcome with sorrow in a way I have never known before in my life. No doubt you all know what I'm talking about I can tell by your posts you do! I have been married to Bill for over 25 years and I love him very much I have never wished he had died that day! However "he" has had days he wish he had and depending on what is currently going on in our lives at that moment I usually understand what he means when he says that! http://sci.rutgers.edu/forum/images/smilies/frown.gif What I believe he means is he just wishes at that moment we could go back to our old life! Maybe we aren't as emotionally healthy as some but I think in spite of this horrid injury we do better than most!!

By the way we have had this discussion before haven't we Marmalady? Remember the topic "Living in the moment" and Chris? I wonder why our venting always stirs up such controvercy?? http://sci.rutgers.edu/forum/images/smilies/confused.gif

[marmalady]

Obie, maybe there's an unwritten law that says family members/caregivers can't vent? I don't know. I do know that we have some very sensitive members of the community who are able to come to this forum and share their perspective without belittling the poster, and for them I am grateful!

And thank you for sharing your very personal thoughts on your feelings for your husband, and life and death.

_____________
Tough times don't last - tough people do.

[martha]

I've managed to bite my tongue thus far, but.....

PLEASE read the first words Dee has to say. "I have to vent".

For those of you who are NOT caregivers and were "troubled" by what she and other caregivers had to say, HOW MUCH CLEARER CAN IT BE? It doesn't matter who or what you are. It doesn't matter if you're healthy and something goes wrong in your life or if you're dying and having a bad day coping with it. WE ALL HAVE TO VENT AT TIMES! And yes, I am yelling for emphasis because you people made me want to scream.

If you see a posting that says someone wants to vent and you feel tempted to tell them how to remodel their life so that it conforms to your own ideas and expectations -- please don't! If that's what they wanted, they would ask. If they just want to vent like many of us need to do occasionally, then let us. Show some support or shut the hell up. Your choice.

If advice is requested, feel free to offer it. Otherwise, keep your opinions to yourself and offer an ear and/or a shoulder and a kind word to your fellow suffering human being. That's all most of us need periodically to be able to get back to the business of living with this situation we've been so kindly *given* both SCI and caregiver alike.

Just my .02. Flame away. It isn't like I'm not used to it from ya'll.

martha

[1 Fine Spine RN]

Hey......I will probably catch it for this...again...but....its a unified battle...hugs all around!!!!

Dee, Pleased to meet you..vent as you need...you are welcome here...sci breaks more than bones and cords...it breaks hearts....it is one thing to establish interventions and treatments for broken bones and cords....but we all know it all goes much deeper and is more of a sawing motion with a double edged knife. Sometimes it may feel like you just got your breath...just figured it out..and the rules then all change!! You have my support.

OBIE....you know I love you girl!!!! smooch!!!

Be good to yourselves,

Peace and out,

Mary http://sci.rutgers.edu/forum/images/smilies/smile.gif

...and she lived happily ever after...

[shmily524]

CJO
With or without a disability. You get what you give. So-- if you want courtesy and consideration and respect. You need to give it.
Obviously - you didn't intend on insulting anybody but you did. Perhaps you need to choose your words more carefully. I appreciate your effort to help, and just so you know I do not live in the past. I live very much in the present. I was simply having a "not so great moment"... I am only human. http://sci.rutgers.edu/forum/images/smilies/smile.gif
CJO ~ I take back the part about you not posting. I was just upset and frustrated. Can we be okay? We all need as much support as possible. Yes? http://sci.rutgers.edu/forum/images/smilies/wink.gif

Brian, there's the guilt thing again...
"what do I know I am disabled, I guess in your eyes if I got married again she would be labled a caregiver..." This comment is an effort to try to make us feel guilty for not accepting what you had to say (by the way.... it has NOTHING to do with the fact that you're disabled!) As for the "label" of caregiver. I had a very hard time accepting that. It really bothered me. I am first and foremost bob's wife, best friend and lover... and all of those things on some level are "caregiver" terms. So ~~ I am NOT his caregiver any more now than I was BEFORE the accident. In our years together we have both taken care of each other and we will continue to do that. Not out of "responsiblity" but out of pure, love, admiration and respect! Brian, I wish you this same love in the future ~ if you marry and you wife truly loves you ~ she will be your wife, best friend and lover ~~ giving you care from her heart and not at all being a "caregiver".

I apologize for causing such an upset on this forum. http://sci.rutgers.edu/forum/images/smilies/frown.gif
Can't we all just get along? http://sci.rutgers.edu/forum/images/smilies/biggrin.gif

Positively,
Dee~World's most passionate behavioral nutritionist and Ever-loving wife, friend and lover to the sweetest guy on earth, Bob (L1/L2, March 2002)

[KDK513]

Welcome back Martha. Kath

[KDK513]

Funny you should say that... I had not thought of myself in the terms of Caregiver until I was given several books with that title.

[brian54806]

Shmily524,,,I guess we are in differant situations as I got hurt 22 years ago when I was 17..WE dont really know one another or situations,, was not my goal to upset anybody,,With time It should get better for you both

I came to a realization, and I need to apologize. I'm a young man, and those I have been disagreeing with are all young women. I was in a serious relationship long enough to know that men and women have very different emotional needs.

I should have been compassionate, but I wasn't. For that, I'm truly sorry. I wish you all the best, and let's beat this thing that too often brings us down!http://sci.rutgers.edu/forum/images/smilies/smile.gif

[martha]

CJO ~~
Very eloquently said. Thank you. I personally may not agree that it boils down to the difference between males and females, but I do appreciate your effort toward understanding.

martha

[martha]

Originally posted by KDK:

Welcome back Martha. Kath
Thanks Kath. This one woke me up because it was so close to what we've gone through before. I'm crawling back under my rock now. http://sci.rutgers.edu/forum/images/smilies/eek.gif
martha

[Sci Mom]

HELP!!!

Somebody hide Martha's rock!

[marmalady]

Oh, Darn - Just packed all my bonsai rocks - I could've thrown Martha's in with them! http://sci.rutgers.edu/forum/images/smilies/biggrin.gif

_____________
Tough times don't last - tough people do.

[Obieone]

Was just wondering . . .

How everything was going lately Schmily??? Sure hope (those that shall remain nameless) didn't scare you off from continuing to participate here! I'd sure feel bad about that! These venting threads seem to do that though . . . they just sort of . . . trail . . .off into never never land!!

My husband and I have been going through another rough spell trying to get his meds balanced! He takes Baclofen (60mg per day) and Neurontin (1800mg per day) and although it has stopped the burning/stabbing pain in his back, they put him in la la land as a result plus he has trouble concentrating etc. . It's like he is in some emotional vaccum!!! http://sci.rutgers.edu/forum/images/smilies/frown.gif He has a great doctor who is trying very hard to help get this all sorted out!! (This for a man who hated taking any kind of pill before his injury!) As Snail so aptly put it " this shit sucks" - (pardon my french) (sorry Mary) I'm feeling pretty bad for my husband at the moment!!

Hope all is well with everyone here. I'm soooo glad its Spring. It always lifts me up ! I love the brand new green of everything - my absolute favorite time of year!! http://sci.rutgers.edu/forum/images/smilies/cool.gif

[Obieone]

By the way it will be 5 years for us on the May long weekend (May 16)!! Sometimes it seems like its always been this way for us and other times it still feels like it just happened yesterday!!
Will I ever stop feeling so sad ??? http://sci.rutgers.edu/forum/images/smilies/frown.gif http://sci.rutgers.edu/forum/images/smilies/frown.gif

[Chris Chappell]

Obieone,

I've hesitated out of courtesy to Jackie and the other members / moderators to comment within this forum.

But for some reason you keep wanting to stir the pot. Your two posts - April 20th ("Chris") and May 3rd were suggesting that I (those that shall remain nameless) and others (I can imagine it being Cjo) would "scare" others away.

Why do that and give another unsuspecting member an indication that my behavior or anyone else's would be other than professional?

It was quite a while ago that we had a disagreement. Please refrain from including it in future posts / threads. I have never done that to you nor anyone on the Caregiving thread yet you seem bent on doing the opposite whenever someone strays into these threads.

You get what you give Obieone. I'm trying to remain professional, respectful and above board. I don't think its too much to ask the same. And that includes all members.

Thank you.

[Obieone]

I think I may have missed something Phebus, you never even entered my mind when I posted this - I was just really wondering how Schmily was getting along. It wasn't meant as a slam against anyone and I'm not trying to stir any pot!!!

My humble apologies if you took it personally!!!! I didn't realize how carefully we have to choose our words here I'll be more mindful in future!

Peace out (as my daughter would say)
Obie

[shmily524]

Hi all,

I see some of you were wondering how I'm doing. (Thank you sweetly for your concern) Well, we are doing pretty good. Though, I still have my moments. But then, when I think about it.... I always had my moments~ even before this tragedy! LOL!!

This weekend I washed 8 loads of laundry (and it is just me and Bob!!) Since he can't get rid of his Bladder Infection... he's had a lot more bladder accidents than usual. ugh.
But still.... as I trek up and down the steep basement stairs load after load.... washing, drying and folding.... and aching!! LOL!!... I thank God for the PRIVLEGE of being able to wash my one and only true loves laundry... the alternative (if he had died that night) would have been unbearable.

Life is good. My heart is happy, my spirit content ~ and so is Bob's ~

But ~ the guy who did this (on purpose) to Bob is still playing games with the legal system - trying to get away with some kind of insanity plea~~ Amazing, it seems like he has more rights than we do. Boy, does this whole "legal system" tick me off http://sci.rutgers.edu/forum/images/smilies/mad.gif

Over all, we are doing well. But, when there is a moment ~ like maybe the first time we go to the beach ~ and Bob isn't able to play beach volleyball or to ride the waves or feel the sand beneath his feet. It will sting and again I will mourn the things (no matter how small and insignificant) that we have lost.

But ~ that is a moment ~ not our whole lives.
At the end of the day, when the sun settles and I am still able to lay in Bob's arms and fall asleep as he holds me tightly and reassures me that we will be okay, better than okay. I thank God every single day for what we have.

Thanks to all who are sweet enough to ask and I hope that you are all doing well ~

Positively,
Dee~World's most passionate behavioral nutritionist and Ever-loving wife, friend and lover to the sweetest guy on earth, Bob (L1/L2, March 2002)

[martha]

Chris, Chris, Chris,[p]
Originally posted by Phebus:

Obieone,
It was quite a while ago that we had a disagreement. Please refrain from including it in future posts / threads. I have never done that to you nor anyone on the Caregiving thread yet you seem bent on doing the opposite whenever someone strays into these threads.

I know how you hate to be quoted and for that I do apologize, but I thought it necessary since this is a direct response to that one paragraph above.
Oops. What do you call this and your direct reference to the earlier "problem" and mentioning me and Obieone by name?

http://carecure.org/forum/showthread.php?t=32196

[SCI-Nurse]

Schmily, has your husband explored using an external condom catheter when he has problems with leakage? They work very well and should keep your linen usage and need to do laundry down.

(KLD)

[Obieone]

I was just wondering (again) . . .

Schmily what did you mean "on purpose"??? If you don't mind sharing how was your husband hurt!!!

We go through heavy laundry spells occasionally too! How would they have coped in the days before the convenience of the wonderful laundry systems we have now!!! http://sci.rutgers.edu/forum/images/smilies/eek.gif I could not live without my Maytag I must say!!! http://sci.rutgers.edu/forum/images/smilies/biggrin.gif

Remember to pace yourself you won't be any good to anyone if your all worn out!!

(Thanks for the support Martha - sheesh http://sci.rutgers.edu/forum/images/smilies/confused.gif)

[shmily524]

Obione,
I don't mind sharing how this happened to my hubby. I think we have alot more anger than most in our situation because it was "on purpose" - not to say an accident makes it easier but we are much more emotionally charged because of our particular circumstance.

A "friend" did this to us. http://sci.rutgers.edu/forum/images/smilies/confused.gif
He was suffering from depression and his wife and I managed to talk him into getting help. He was checked into a mental hospital for 10 days and released. Well, because I helped to get him into the hospital he decided that he loved me and that I must love him to do such a kind thing. Okaaaaaaaaayyyy.... Obviously Bob and I decided that we couldn't be friends with this guy and his wife any longer. Weird, very creepy.

We hadn't heard from him for about 4 months except a quick email here or there for him to tell us how he was doing - we didn't usually reply other than to acknowledge receiving his email. In any case on March 16th of 2002 he wrote us to say that he was doing better and "all was forgiven" (???) and that he and his wife were seperating (I don't think she liked the idea of him "loving" another woman) --
He was going to move to Up State NY ... Bob and I both breathed a sigh of relief thinking that he would be out of our lives.

Then the day after St. Patty's Day (March 18th)
The guy waited for Bob to leave work (7:15pm) and he tried to kill him. He stabbed him with a 24" hunting knife (twice) - thank God the handle broke off while the knife was still in him (or he may have succeeded in killing him)... he had also hit him on the head several times with a lead pipe.

That night Bob lost 7 pints of Blood. When I arrived at the hospital the doctor said he wouldn't make it. They had the priest read Bob his last rights and we waited and waited and waited. The guy.... stayed in the parking lot and the police found him but he lied and told them that he was sleeping off some drinks and was going home. They took his picture and let him go. They showed the picture to me at the hospital and promplty left to arrest him.

Mind you .... this guy lived 2 hours away from us ... and ... did not know where Bob worked (other than the name of the company) We suspect that he was stalking Bob for some time. You know that hind sight 20/20 thing.

Now the guy is in a mental hospital and it is more than a year and he hasn't gone to trial. Lovely. They are trying to determine if he is competent to stand trial. They are working on a diminished capacity defense. It just isn't right. He planned this and it is obvious! That sound pretty "right of mind" to me.

Either way... the sentence in NJ for attempted murder is 10-20 years and since the guy doesn't have a record they would probably go with the 10 years of which he would only have to serve 8.5 years.... and then he gets to WALK out of there a free man. "Justice served".... With SCI as many of you know... there really is no justice. This guy didn't kill Bob (thank God) but he took both of our "lives" and now we must rebuild everything - which we will do with our love and with the support of those who care for us. Bob still feels like he is much better off than this guy -- because this guy won't have much of a life after he gets out of wherever he is. He has no house, no wife and won't be able to get a decent job with his record!

Oh well, that is the story. There are many more details and I struggle daily with my part in this because I rethink and rethink that maybe I was too nice. Maybe I did mislead him... not on purpose of course. I replay conversations and I think about how I may have caused this whole nightmare. http://sci.rutgers.edu/forum/images/smilies/frown.gif

Thanks for asking Obione.

Life is good though, it is very very good http://sci.rutgers.edu/forum/images/smilies/biggrin.gif

Positively,
Dee~World's most passionate behavioral nutritionist and Ever-loving wife, friend and lover to the sweetest guy on earth, Bob (L1/L2, March 2002)

[Chris Chappell]

Schmily 524, good luck with everything. You and your husband have the right perspective.


Cagney and Lacey (I won't use names anymore). I tried to give Cjo a little friendly advice about the politics of this forum as well as some first hand knowledge about my previous experience.

Good luck to any members or moderators who venture in here.

Sheesh is right - http://sci.rutgers.edu/forum/images/smilies/rolleyes.gif

[martha]

My only point was don't say you haven't done something when you so obviously have and so recently to boot. For me, that situation was over long ago and YOU are the one that brought it up openly recently.

[marmalady]

Phebus, the snideness of that post belies your true personality. If you can't contribute anything meaningful to this topic, please leave.

_____________
Tough times don't last - tough people do.

[marmalady]

So - to get back on topic.

Dee, I know how hard it is for you to share those painful events; thank you for letting us be a part of it with you.

And....ahem....what happened to those plans to get the laundry room on the first floor? http://sci.rutgers.edu/forum/images/smilies/wink.gif

_____________
Tough times don't last - tough people do.

[cheesecake]

Dee,
I understand some of the angst of an injury due to a violent crime. I was assaulted almost 2 years ago and lost use of my right arm. The courts are difficult to deal with and add to the pain. I was a no show to the last court hearing because I thought the young man was not going to be sentenced. After 5 hearings, I was drained. To make matters worse, after he assaulted me, he did the same to his mom. The courts continued to release him!

The 13 year old who injured me was also mentally ill. It did not affect his sentencing except he was sent to a mental health, juv. locked facility. He will probably serve more time. I replay in my mind that day and wonder if there was anything I could have done differently.... my answer changes with my mood. My assault occured on the job so it has been a major battle to get care and the processs has been long and protracted.

Some days the sadness is all consuming and the anger firey red. The pain was very deep when my son said, "Mom I wish he had hurt someone else because he took you away from us". My assault occurred in a school, and my son refuses to go on a daily basis. I have had 3 surgeries, have at least 2 more to go and at times I long for my life the way I had known it.

Sorry to Vent, but also wanted to share that I understand. Your story brought tears to my eyes..I have been there and am still in many ways.

Be gentle and kind to yourself.

"Don't worry about the world coming to an end today.
It's already tomorrow in Australia!"----- Charles Schultz

[Obieone]

So often I am humbled by the replies to a question here! http://sci.rutgers.edu/forum/images/smilies/rolleyes.gif

You all live with so much emotional as well as physical pain - I wonder if you realize that by sharing your stories what an impact it has on the rest of us. For myself, it makes me want to try harder to be more patient and understanding with my husband, to just be a better person and remember that "everyone has a story its not just about me" (and my feelings)!! I hope and pray that each one of you has a Gaurdian Angel sitting on your shoulder to help you continue to live your lives with as much ease as is possible!!

I believe in karma - "what goes around comes around" - even though I might think justice was not served at a given moment, whatever bad things someone does will eventually come back to haunt them sooner or later - or perhaps at the end!!

Take good care of yourselves! http://sci.rutgers.edu/forum/images/smilies/wink.gif

[This message was edited by Obieone on 05-07-03 at 12:09 AM.]

[krajaxa]

Cheesecake, I feel w/you. We have been fighting for over two years now (hubby was hurt on the job). I wonder how much more headache we will have in the future. Battling to get this, arrange that... etc., never ending story.
I get really angry at the co., since even after the hearings they came out like a*****s, but that doesn't matter, they decide to appeal...

Some days I'm just mad, some days angry, some days I still cry - don't really know why, but I feel better afterwards. Just venting the worst of the frustrations...

And trying to rebuild our life again...

And just like olossgirl said and I believe in it: "What goes around, comes around!" I just wish I could see it when it happens...

Sorry, I guess I'm being frustrated today...



Originally posted by cheesecake:

Dee,
I understand some of the angst of an injury due to a violent crime. I was assaulted almost 2 years ago and lost use of my right arm. The courts are difficult to deal with and add to the pain. I was a no show to the last court hearing because I thought the young man was not going to be sentenced. After 5 hearings, I was drained. To make matters worse, after he assaulted me, he did the same to his mom. The courts continued to release him!

The 13 year old who injured me was also mentally ill. It did not affect his sentencing except he was sent to a mental health, juv. locked facility. He will probably serve more time. I replay in my mind that day and wonder if there was anything I could have done differently.... my answer changes with my mood. My assault occured on the job so it has been a major battle to get care and the processs has been long and protracted.

Some days the sadness is all consuming and the anger firey red. The pain was very deep when my son said, "Mom I wish he had hurt someone else because he took you away from us". My assault occurred in a school, and my son refuses to go on a daily basis. I have had 3 surgeries, have at least 2 more to go and at times I long for my life the way I had known it.

Sorry to Vent, but also wanted to share that I understand. Your story brought tears to my eyes..I have been there and am still in many ways.

Be gentle and kind to yourself.

"Don't worry about the world coming to an end today.
It's already tomorrow in Australia!"----- Charles Schultz



http://sci.rutgers.edu/forum/images/smilies/mad.gif

k

[Sue Pendleton]

Dee, please don't ever feel that you have less a right to vent, complain, bitch, etc., than those caring for higher injuries. What matters is that something precious is taken from us and it's not returnable (at prsent. I always have hope.) I for one do understand that an L1-L2 has certian loses that I as a quad do not have. It amazes me constantly how the human body is put together. Lumbar and sacral injuries suffer their own kind of hell. It is different but that does not make it less.

I think you might be surprised by the people on your listserve but that is totally up to you. I for one believe all family caregivers, no matter the level of injury, deserve halos here on earth where they would look wonderful when you dress up for a night out on the town. http://sci.rutgers.edu/forum/images/smilies/cool.gif

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

[macska]

hello there,
i have been reading the posts in relation to being the victim and being injured as a result.
my 17 years old son Jordan,now 11 months post injury was shot in the back and robbed.he is now a T4-5 complete para.
they have 2 guys in jail since oct 2002 and just recently in june we had to endure the prelim hearing. jordan was testifying two days on the row over 5 hours each.
let me tell you by the end of the first day i was ready to kill someone! the humiliation and the questions! he is the victim and still the defence for those two maggots are trying to make jordan look like trash! it was very very hard for me to sit there and listen and not be able to interfere and protect him.
the rights of victims are vitrually none exsistent.
anyways....some days i sit and wonder about how come i'm still sane..i feel this rage going thru my body every time i see my baby struggle or a see his body..the damage..the scars...HOW DARE THEY DID THIS TO HIM! WHY DID THEY DID THIS TO HIM!
but i guess we have to go on an, i do too believe in karma and such ..what goes around, come around.
this is a great big mashala of pain,tears,anger,rage,hope,determination and love

[marmalady]

Hi, Glace,

Unfortunately justice is more often a gaming ground for attorneys, I think, than the actual administration of 'justice'.

I'm so sorry about your son; no mom should have to deal with seeing our children mutilated and unable to get on with their lives in a normal way. It's hard enough to cope with the SCI, I can't imagine having to deal with the court systems, too.

Know you have a home here whenever! Jackie

_____________
Tough times don't last - tough people do.

[SoulMate]

Hi -
I'm going to 'steal' and idea from Lass and use 'bf' to refer to my boyfriend. It's just easier than anything else!

It really is tragic, no matter who you are, to deal with the loss and devistation SCI brings to lives. My bf and I were just beginning to become officially 'romantic' after a 12 year freindship. So, we don't have many memories of 'dates' together, and boy howdy, I was looking forward to makin some of them!

The one thing we do have tho' is love. We spent 12 years trying to find 'other' people and always ended up looking at each other. This is no accident.

Do I regret that he's hurt, unable to do what he wants? Yes, I regret it! Yes, I will grieve, and get mad at the situation, live in denial on occasion, and just plain feel sorry for myself, and my bf sometimes. This is a hell of an adjustment. We are only just beginning to figure out how to deal with WHAT WE HAVE.

I don't think we've really begun to deal with what we've lost. And that's ok. One thing at a time. We have the rest of our lives to figure this out. THAT is the one thing that has remained the same. We have the rest of our lives together. THAT is what I prayed for.

Some days it's really hard to be grateful for anything. Somedays, I'm tired, I'm fresh out of ideas about anything, I'm scared, I'm dealing with other painful life expreiences, or I'm horny. It all gets to me on occasion and I'm not a very nice spoiled brat. Most of the time I'm alright. Which is, I suppose, what most of us are, in spite of what we may think!
I'm glad that this board is active. I imagine I will be using it quite a bit.
Thanks,
SoulMate

We are all faced with a series of great opportunities... Brilliantly disguised as impossible situations.