View Full Version : Wives of SCI men
marco25
03-17-2002, 12:22 PM
For 15 years I've been my husband's (C-7/1976) wife and primary caregiver. Last fall he insisted on hiring a nurse's aid for his bowel program. I know that, according to all the rules, this was the right move. But in some crazy way I'm feeling like I've been cut out of a very special, intimate dimension of our relationship--one that very few couples get to share.
Believe me, poop and pee, don't excite me in any way. I guess I just miss that time alone w/him when we could be totally alone. We had some of our best conversations and smooching sessions during that time. He's a workaholic who's at the office most of the time, and we have two emotionally needy children who literally consume him when he gets home. He has very little left to give me by the end of the day. I've tried to explain my feelings, but he simply doesn't want me doing that kind of "dirty work" for him any more.
Are there others of you out there who're breaking the rules, like us? Do any of you relate to what I'm going through. Or am I TOTALLY nuts?!?
Chris Chappell
03-17-2002, 05:42 PM
Being injured a relatively short time (not yet 2yrs) I have limited experience but this perspective to offer.
As a man the hardest part of my injury is having to ask / rely on my wife for assistance with my program. Luckily I'm pretty independent and have pca help. But even on vacations I dread this aspect of our 'time' together. To her its no big deal. To me the lack of complete independence is extremely difficult and a big challenge to mentally / emotionally manage.
I'm probably not making much sense but no, you're not nuts as I can understand your point. However, from an injured male's point of view I can completely understand how your husband feels. It's nothing personal but I want my wife to be my wife and not my caregiver. It's very important to me that this aspect of our relationship is not compromised. Because enough already has been.
marco25
03-17-2002, 07:56 PM
You sound just like my husband, and I totally understand where both of you are coming from. It was just a sudden change for us, and I feel like, since then, our relationship is more than a little out of whack. I didn't know if other wives struggle w/this quasi co-dependence re: their SCI husbands. And also learning how to transition gracefully from one role to the other. I know sometimes he feels like he's married to his mother, instead of his wife or caregiver. And we both HATE that!
Man oh man. I've waited forever for someone to share that. I've been scorned the hell out of every thread in which I even hinted that someone could be both caregiver and lover. Wow. I've been carrying this burden for a while.
We had NewPCA on SpineWire. She lived in Hawaii and took a PCA job for the first time in her life. Her boss turned out to be a fantastic guy [C5] who listened to her and really took an interest in her. She informed us step-by-step as they fell in love. Man! I tuned in everyday just to get the latest on what was up with those two!! She was cautioned repeatedly about the dual role and I think she finally got sick of it. She loved doing both.
I got involved with a PCA several years ago who I hired to massage my butt. Is this forum members only? Anyway, sounds kind of funny, but I was working mega hours and not getting off my butt near enough. The massage really helped. Soon, however, I was getting my butt massage for free. http://sci.rutgers.edu/forum/images/smilies/smile.gif That woman would have done anything for me and thought it a privilege. She really loved me. She'd already had kids and had her tubes tied, plus she was older than me so I never felt the same way. I really wanted to make her happy I just never wanted a long term commitment. Anyway, that's all beside the point.
What I do know however is that those times can be filled with great conversation. We talked about everything. I think it's not abnormal at all to enjoy being a caregiver as long as the time together is fulfilling. And I strongly believe it can be.
My wife will do any task I need without hesitating. I had a bout of diarrhea in the Philippines that almost killed me. I lost fifteen pounds [was actually glad to slim down a bit]. The problem was bowel accidents especially at night. Very hard to get up in your chair without making a royal mess. So instead, my wife would just clean me right there with paper towels and alcohol. Wow. She did it fast and when she was done I felt really clean. I observed her washing babies that way so that must be where she got it from. One night I woke her out of a sound sleep three times for that gnarly task. Each time she just shook off the sleep and took care of business. She never once complained or even mentioned it again. One time it was so bad we determined I had to crawl off the edge of the bed and continue crawling into the bathroom. Good thing the bed was only a foot off the floor. I was crawling with my upper body and she was carrying my feet behind me. It was fifteen feet to get to the safety of the bathroom. Filipino bathroom floors are lowered by an inch and have a drain in the middle of the floor so that makes it really easy. The problem was we were laughing so hard [punch drunk at 3AM] that we could hardly do it. My wife was so amused she began calling out to her sister in the other bedroom to come observe this operation. At first I thought it was a good idea because of how funny it was but vanity took over and I begged her to not wake her sister up. Thankfully she complied.
Anyway, the gnarliest of details can be fun when you're best friends. And even routine care can be rewarding to both if it's a great time to stay in touch with each other.
Sorry for the long post but I just can't sleep.
~See you at the SCIWire-used-to-be-paralyzed Reunion http://www.stopstart.fsnet.co.uk/smilie/wavey.gif ~
1 Fine Spine RN
03-18-2002, 04:01 AM
WE have got to get this woman into ORLANDO before Jeff implodes!!! Wait a minute....I know pilots..hmmmmmmmm. Jeff, never forget one thing, she is not the only caregiver in your relationship, from what I read, you take tremendous loving care of her....THAT FROM A WOMANS PERSPECTIVE IS THE SECRET OF HAPPINESS!
Now, go to sleep, or eat breakfast and go to work...
Mary
Thank you for the nice reply. I'm waiting for some important news so I'll go to sleep in a couple hours. And if you find a pilot with a charitable heart definitely feel free to tell him about my situation. He just might save me from imploding with excitement... http://sci.rutgers.edu/forum/images/smilies/smile.gif
~See you at the SCIWire-used-to-be-paralyzed Reunion http://www.stopstart.fsnet.co.uk/smilie/wavey.gif ~
marco25
03-18-2002, 07:17 AM
After Scott and I got engaged and set the date, his parents had me over every weekend for "orientation" so to speak. Finally we all agreed that it was time for me to experience the BM procedure. Scott and I had the whole house to ourselves. He was much more nervous than me. It seemed to go fine to me.
Or so I thought....
Scott was to be a lecturn at his church later that afternoon. Right there in front of the whole church he had the mother of all BM accidents! It was literally dripping down his leg. If he could have vaporized himself right there, he would have.
We raced back to his house cleaned him up, finished the BM, and then cleaned him up again. "Baptism by fire" is not a gross exaggeration in this case. And if we thought it couldn't get worse, we were wrong. We've had emergency BMs in hotel rooms that had to be done in the bed WITHOUT GLOVES! Now, honey, THAT'S LOVE! Another time during a BM he accidentally urinated in my face! That might get Roger Maplethorpe off, but not this girl! But it would never change my feelings for my husband. And we too have had those times of uncontrollable giggles and laughter over something no one else would find funny at all.
It's the fun side of the dementia that comes w/SCI! http://sci.rutgers.edu/forum/images/smilies/tongue.gif
Thanks for sharing that, Marcomo! I feel much better! http://sci.rutgers.edu/forum/images/smilies/smile.gif
~See you at the SCIWire-used-to-be-paralyzed Reunion http://www.stopstart.fsnet.co.uk/smilie/wavey.gif ~
I think it's wonderful if you've found intimacy and humor in this type of activity. It sure didn't work for us, but that's not unusual in a situation where there was no intimacy to begin with. It's incredible that you can be a wife/lover/caregiver. It has to beat being a caregiver/provider/maid/cook/laundress/accountant/mechanic/gofer/servant. Congratulations!
marco25
03-18-2002, 01:20 PM
I don't want to give the false impression that it's perpetual marital bliss around here. We've traveled some rough roads, some where I was everything you described yourself as being--or at least that's how I felt. We even separated for 4 months in 1999 because things got so bad. But that certainly wasn't the solution. We both needed some real help! And you know what? We got it, and things are still whacky! I guess they always will be. But I love my husband and am committed to my marriage and my children.
That's why I'm so grateful for this forum. I wish I'd had it a few years ago. And if you need an understanding ear, write me sometime.
marco25
03-19-2002, 11:35 AM
What do you do when your husband's nursing aid starts to develop a big crush on him? When she comes over for his BM program, she's smiling and can't stop talking about him. I hear them laughing and talking in the bathroom, and then when she leaves she's positively giddy.
Scott's had plenty of women fall for him since we've been married, but none of them is seeing him naked 3 times a week and helping him w/one of the most intimate details of his life.
Details that were once my exclusive territory. http://sci.rutgers.edu/forum/images/smilies/frown.gif
I bet it's not easy. Maybe you should tell hubby how you feel. If he insists on having outside help maybe you should do early morning shopping or something during those times. Or maybe you should fight for your job back. Wow. One thing I'd do is make sure the aide was a big, ugly woman with a temper. I guess it's too late for that, though.
~See you at the SCIWire-used-to-be-paralyzed Reunion http://www.stopstart.fsnet.co.uk/smilie/wavey.gif ~
1 Fine Spine RN
03-19-2002, 12:41 PM
I am almost a nurse. Actually everyone is pretty much saying I am a nurse. I think sometimes it is hard to know what to think about behavior like that. I know that sometimes when I have to do procedures and help out in showers and stuff it is helpful to be a little jocular to get over the awkwardness, but I think that you have that intuition built into you for a reason. Nobody sees it but you, so nobody is qualified to give big advice except to say that you should always trust those inner voices. And err on the side of caution.
And Jeff, you don't want to know what I think about your comment...better to choose a PCA named Raphael that is inclined to sing "Feelings" as he goes about the process that has been placed in his hands...
sharon
03-19-2002, 03:13 PM
Does it work both ways? Do husbnads of SCI wives find similar problems?
Steven Edwards
03-19-2002, 04:41 PM
Originally posted by Mary:
And Jeff, you don't want to know what I think about your comment...better to choose a PCA named Raphael that is inclined to sing "Feelings" as he goes about the process that has been placed in his hands...
This would be the perfect place to post Nick's Butt Maintenance story. If only I still had a copy of it. *scoff*
-Steven
marco25
03-19-2002, 05:02 PM
and respond to Mary, Jeff and Sharon.
First, Sharon. Men and women are so different. I'm sure it can be the same but in a different way. I sure that's LOTS of help.
Mary and Jeff. I appreciate your input. It's not something to mess with. And, unfortunately, she's pretty, young, athletic. To make matters worse, she's a single mom living w/a lazy jerk. So I'm sure when she comes here and sees all that Scott provides for us and how hard he works etc., I wouldn't blame her for being attracted. He's also helped her out w/some things. They call each other on their cell phones, initially about appts, but it usually gets a little personal, just for a moment.
I'm not worried about him leaving me, etc. But I'm concerned about the pain and/or awkwardness that all this is bound to lead to, especially for her.
She was supposed to come tonight, but Scott had to stay late. I'll be "doing him" tonight or tomorrow am. Maybe we can talk about it then. Knowing him, he's absolutely clueless about her feelings.
BTW, STEVEN, the kids and I may be spending a few days on the Isle of Palms next week (spring break). If we do, I'll let you know. I'd love for you to join us for a homecooked meal or we'll take you out for some great seafood. I'd love to meet you. We can talk about Cybil and Lizzy. I'll keep you posted.
1 Fine Spine RN
03-19-2002, 05:50 PM
NO STEVEN....
This is not the place to post Nick's Butt Maintenance story, because the topic is serious even though it makes you guys SQUIRM....but I have a copy of it. Somewhere.. He sent it to me as a gift last year when I was sad. I will think about sharing it...sigh..give me a little power - goes right to my head...
Cheers,
Mary- nice nurse, funny nurse....
I'm a wife and a caregiver, we made it a joint decsion when we became involved. This is our time, we shut out the world and discuss whatever. We've planned vacations, made budget decisions, planned home remodeling. Amazing what you can get accomplished with 45 minutes of 2 people commited to the same place at the same time.
Then after all is said and done so to speak the caregiver hat comes off and we go to bed and then I'm the wife. For me it is 2 different worlds and a large degree of intimacy comes from both. We have also discussed hiring someone but we enjoy the time we spend together
marco25
03-19-2002, 07:24 PM
We made the same decision all those years ago. That's why all this has thrown me for a loop. And I'm glad you can understand and confirm the special time that can be for a couple.
And yet I can see the Chris/Scott side of it. It's demeaning for them. But when all the factors are in place, it can be a real emotional minefield. And that's what I feel like I'm in the middle of.
Mary....would you send ME the Nick story? Please?
1 Fine Spine RN
03-19-2002, 07:59 PM
For you ...anything, but then make Steven beg...I am handing you the baton of power.. I'll root around in my hard drive for it tomorrow after my clinic hours. If I can't find it, I'll get in touch with him and get him to send it again...I think we made up after our last fight...hmmmmm, can't remember.
If you are reading this Nick, I'm sorry I was crabby, I had PMS, the dog ate it, and all my other usual excuses...you know you like me!!!!
Mary
Chris Chappell
03-20-2002, 09:52 AM
it was "demeaning" Marcomo. Uncomfortable, yes. A challenge, yes.
Don't put words in my mouth or take them out of context.
I'm sorry I even offered a different perspective. http://sci.rutgers.edu/forum/images/smilies/mad.gif
marco25
03-20-2002, 10:28 AM
First I'm sorry that you're sorry you shared your opinion. I really appreciated your input. I understand it because it's how my husband feels. Please don't think I count that against either one of you.
Second I'm sorry that I put words in your mouth. Last thing I wanted to do. However, demeaning is a word Scott has used to describe his feelings. I'm afraid I glommed the two of you together w/o taking into consideration the subtle different shades of meaning between the two words.
Thanks for pointing that out to me. I don't want to upset anyone. I'll try my best to choose my words more carefully. My only defense is that it's an emotional subject, which causes me to think w/the right side of my brain more than my left.
Forgive me? http://sci.rutgers.edu/forum/images/smilies/frown.gif
Steven Edwards
03-20-2002, 01:22 PM
Instead of saying that this was the perfect place to put it, I should have said that it was the perfect lead in for the story. I would have posted it as a new message and linked it, as I feel it deserves a thread of its own. http://sci.rutgers.edu/forum/images/smilies/smile.gif
Marcomo,
Just let me know if you do come. It would be interesting to finally meet someone from this board. But be forewarned; you may never want to talk to me again. http://sci.rutgers.edu/forum/images/smilies/wink.gif j/k
And, by the way, I love your daughter's name. That is near the top of my choices for a name if I ever have a daughter.
-Steven
marco25
03-20-2002, 02:58 PM
Is there something you need to tell me before I'm seen w/you in public... or expose you to my children? http://sci.rutgers.edu/forum/images/smilies/tongue.gif
I haven't nailed down our plans because, well.... the kids and I went to the dentist. Not good new$. I have a feeling Scott will still let us go. I want to see my family there, and get away for a while. I'm feeling addicted to my computer and this forum!
Re Nick's BM story. I think Sue P posted it in the Cure forum(?). I know I read it somewhere today. FUNNY!
I'll let you know about next week ASAP.
1 Fine Spine RN
03-20-2002, 03:57 PM
Was it the story about the caregiver guy? Or the one about selling the bed? The one about the bed is a scream...
Steven Edwards
03-20-2002, 04:48 PM
Originally posted by Marcomo:
Is there something you need to tell me before I'm seen w/you in public... or expose you to my children? http://sci.rutgers.edu/forum/images/smilies/tongue.gif
Just that I love trying to instill a sense of curiosity in every child I meet. My favorite question as a child was: Why? It drove my parents nuts! http://sci.rutgers.edu/forum/images/smilies/smile.gif
I haven't nailed down our plans because, well.... the kids and I went to the dentist. Not good new$. I have a feeling Scott will still let us go. I want to see my family there, and get away for a while. I'm feeling addicted to my computer and this forum!
Hopefully your kids will get a good dentist. It seems to be difficult finding a good one; I went through a few before finding one I got along with.
Re Nick's BM story. I think Sue P posted it in the Cure forum(?). I know I read it somewhere today. FUNNY!
It is a good one. If Nancy [Nan2u I believe] ever comes back around here, be sure to ask her how she broke her ankle. http://sci.rutgers.edu/forum/images/smilies/smile.gif
I'll let you know about next week ASAP.
Looking forward to it!
Mary,
It was about the caregiver. I don't seem to remember one about selling a bed... would you mind sending it to me, too?
-Steven
spinner's wife
03-21-2002, 09:34 AM
Wow! I think I envy how you can even begin to handle this situation...I am a jealous witch and I would NEVER be able to deal with another women seeing my husband (T-4 para) naked. No way!!! If we needed help it would be a requirement that if a woman was hired she would be married, old, and mean. And there would be no contact (by phone or otherwise) between "visits". When I first met my husband 2 yrs ago he had a woman who was a nurse
that worked for a company that handled his medical appts., insurance claims ,etc.She was WAY tooooo friendly and was e-mailing him filthy jokes and pics and very personal e-mails and when I found this out (about 2 months after we married)I blew a gasket!!! We first tried to have her stop the personal stuff and ended up having to tell her employer to back her off of my husband....it still pisses me off!!! She used her position to get into his life and I feel she should of kept it on a professional level. Why put yourself thru the weird trip? I think you should tell this single woman with a crush to hit the road!!!
1 Fine Spine RN
03-21-2002, 09:54 AM
Steven,
Of course I will send it to you - later today after my lecture which starts like now!!!!
Cheers
My other question: is your husband is a true C7? I'm a higher injury than that, and Scorpion is higher still, yet we're both independent in these matters. That might be the best answer of all, if possible. Bowel care was certainly not the hardest thing I learned to do. I think he could probably do it no problem notwithstanding any other limitations.
~See you at the SCIWire-used-to-be-paralyzed Reunion http://www.stopstart.fsnet.co.uk/smilie/wavey.gif ~
marco25
03-21-2002, 10:53 AM
I like your spit and fire! The truth is, a year ago I probably would have responded just the way you did to this situation. We started out w/another nurse. She was our age, officer in the Army reserve, very serious and religious. Had a gold tooth w/a star in it. But then the 9/11 thing happened, and she's been called into active duty!
Scott and I talked a little about this topic last night. (I told him about Chris getting upset w/me. Things like that no longer surprise him.
http://sci.rutgers.edu/forum/images/smilies/tongue.gif He knows how I can be.) Scott is very stubborn, and once he sets his mind on something, he won't budge. Just an example. Early January Raleigh got about 1 foot of snow. It was time for his BM. I said I'd do it. No, he wanted "her". Well, "her" lives 1 hour away and was snowed in as well. The agency sent another nurse who was willing to brave snow, terrible driving conditions, etc. She was 1/2 MILE from our house when Scott found out she was on her way. He told the agency to send her home. He'd wait for "her."
And he did. Two more days. He was packed solid w/crap, but "her" did it.
So... that's where I am. We'll talk some more about it tonight. It's a bizarre situation, which is why I was desperate enough to air it to the world in this forum.
Steven Edwards
03-21-2002, 12:41 PM
Originally posted by Marcomo:
Scott and I talked a little about this topic last night. (I told him about Chris getting upset w/me. Things like that no longer surprise him.
http://sci.rutgers.edu/forum/images/smilies/tongue.gif He knows how I can be.) Scott is very stubborn, and once he sets his mind on something, he won't budge. Just an example. Early January Raleigh got about 1 foot of snow. It was time for his BM. I said I'd do it. No, he wanted "her". Well, "her" lives 1 hour away and was snowed in as well. The agency sent another nurse who was willing to brave snow, terrible driving conditions, etc. She was 1/2 MILE from our house when Scott found out she was on her way. He told the agency to send her home. He'd wait for "her."
And he did. Two more days. He was packed solid w/crap, but "her" did it.
So... that's where I am. We'll talk some more about it tonight. It's a bizarre situation, which is why I was desperate enough to air it to the world in this forum.
Marcomo,
How does your husband's bowel routine usually go with her? Does he have any accidents? Did he before she came? It could be that, and I mean this in a completely nonsexual way, they have worked out a routine that works well for him and he does not want to worry about explaining a possibly complicated procedure.
Or, how social is your husband? Does he get out often? It may be that he wants another "outlet" that he can use to communicate. It seems that she has a vibrant personality; is she much younger than him? Maybe she gives off a good karma that your husband appreciates.
Just some suggestions.
-Steven
Polett
03-21-2002, 12:58 PM
You have gotten the feedbaack from another husban (chris) now I'll give u mine as a Daughter:
I got injured when I was 12 and since the my mom is my caregiver, for the first few years that was fine. Now I'm 26 and she still does it all for me WITH HER HEART but, it is such an uncomfortable moment for me that I must tune it out, I become very snapy then (which I think Scott is trying to avoid) cause after 14 I expect to at least if not phisicall then economically I should FREE her from such obligation. I know u all caregivers/family mean THE BEST and w/o u we'd be lost but, since it's that DISABILITY reminder moment, I guess he too feels abusive by having u do this. IMO it is a GREAT sign that he said it and fixed it (emotion wise) cause this wauy u both r avoiding that strain of not wanting to hurt the other person.
I also think u should put a condition on him, u accept the aid if he gives u that hour of privacy to talk... THATS THE MOST IMPORTANT i think
Me.
marco25
03-21-2002, 02:46 PM
Setting the time aside just for me is important. I'll talk to him about that too.
Scorpion
03-21-2002, 04:35 PM
Originally posted by Jeff:
My other question: is your husband is a true C7? I'm a higher injury than that, and Scorpion is higher still, yet we're both independent in these matters. That might be the best answer of all, if possible.
Jeff may be onto something. I'm a C-6 and completely independent. Though everybody's different. I do think there could be a comprimise somewhere. My gut tells me he was being pretty selfish & 'spoiled' by waiting for "her" during the snow incident. Steven brought up good point about him possibly wanting to avoid accidents by maybe screwing up the routine with an interim caregiver, BUT waiting two more days is a bigger risk. I kinda want to smack the guy upside the head, but then we are only getting one side of the story. http://sci.rutgers.edu/forum/images/smilies/biggrin.gif
But he may very well be capable of more independent, if not entirely independent, care. This would take a lot of pressure out of the whole situation if he can do it.
~Rus
"Life's a bitch, but I love her."
marco25
03-22-2002, 07:09 AM
Scorpion, I'm so grateful for your input. And you're right, you've only heard one side. But I think Chris pretty well summed up Scott's side. I told Scott what you said and about my private chat I had with Jeff about this. He was very impressed, thought about it for a moment, and then said he didn't think he wanted to be THAT independent.
(Sigh)
So, instead of a battle strategy to regain territory that I've lost, I'll do my best to fortify all that I still have. And I'll be here when "her" can't be for the BM ERs.
All that said, and while the ironies are abounding, I'll be offline for several days. Spring break, trip w/kids (Scott can't go, too busy) and some time to relax and think.
And you've all given me MUCH to think about. Thanks.
marmalady
03-23-2002, 04:48 AM
Marcomo - Just have to jump in here a minute as a caregiver - your hubbie said in response to Scorp's comment about learning to do his own care, that he 'didn't want to be that independent'??? What did he do about BM's before his injury? If he's capable of doing his own bowel care, I've got to say it's time he learn to do it himself. It would certainly remove a lot of the issues you're dealing with now.
_____________
Tough times don't last - tough people do.
1 Fine Spine RN
03-23-2002, 05:40 AM
I would have to agree with marmalady on this one. Although on the other side of it, nobody can ever make anybody do what they do not want to do. From my nursing perspective, anyone involved in the physical care of another also has the responsibility for fostering and nurturing as much independence as possible. Hope you have a nice little vacation!
alissa
03-26-2002, 05:52 PM
Hate to ask you to get too personal, but i"m a fairly independant c6 and would love to do it myself. How??
peace,
alissa
Scorpion
03-26-2002, 06:15 PM
Originally posted by alissa:
Hate to ask you to get too personal, but i"m a fairly independant c6 and would love to do it myself. How??
peace,
alissa
What exactly do you want to do yourself? Maybe we have a few pointers. But believe me, Jeff & I aren't unique. I was just lucky to have a few quads & therapists tell it it was possible to be independent. It may not be for everybody, but you might surprise yourself at how much you can do.
So, ask away, personal or not. If necessary, I can email you...if 'm leary of posting very personal stuff here.
~Rus
"Life's a bitch, but I love her."
alissa
03-27-2002, 01:28 PM
I'd love to do my bowel program. Any ideas?
alissa
marmalady
03-27-2002, 03:17 PM
Jeff and Scorp - Why don't the two of you get together via email, and write up a description for managing your bowel programs independently, and post it on Care forum? I think it'd be a valuable bit of info for a lot of folks. Thanks!
_____________
Tough times don't last - tough people do.
marco25
03-27-2002, 04:22 PM
I'm back from my trip, and happy to see the progress in this thread. Jeff and Scorp, please work up something like Marmalady suggested. It would be something concrete I could give Scott.
Did anyone notice the Peach Girl postings in R&S? My, the ironies abound! Oh well, she's not "her", and she hasn't said if her "boss" is married, but it made me a little queasy reading it.
1 Fine Spine RN
03-27-2002, 09:22 PM
I am all for taking risks, but I still don't play where I work.
http://sci.rutgers.edu/forum/images/smilies/cool.gif
Scorpion
03-27-2002, 10:11 PM
Originally posted by alissa:
I'd love to do my bowel program. Any ideas?
alissa
For me, it was two things: The Magic Bullet suppository & a tool for quads that is both a digital stim and suppository inserter (no putting fingers up your butt! http://sci.rutgers.edu/forum/images/smilies/biggrin.gif ) Transferring to the shower/commode chair was aided by putting a t-shirt or pillow case over the sliding board so my legs wouldn't stick. When I transfer, I try to lean forward and keep my butt up a bit, so if I slide, it's on my thighs, not butt. Doing your biusiness over the toilet is both easier & more dignifying than in bed.
~Rus
"Life's a bitch, but I love her."
Scorpion
03-27-2002, 10:14 PM
Originally posted by marmalady:
Jeff and Scorp - Why don't the two of you get together via email, and write up a description for managing your bowel programs independently, and post it on Care forum? I think it'd be a valuable bit of info for a lot of folks. Thanks!
Might be a good idea. I've been thinking of putting together a diagram for one way of transferring too. I've only fallen once while transferring since living on my own (1995), so while it looks funny, it works. http://sci.rutgers.edu/forum/images/smilies/smile.gif
~Rus
"Life's a bitch, but I love her."
bruce
03-28-2002, 05:15 PM
Originally posted by Marcomo:
...
then said he didn't think he wanted to be THAT independent.
(Sigh)
So, instead of a battle strategy to regain territory that I've lost, I'll do my best to fortify all that I still have. And I'll be here when "her" can't be for the BM ERs.
...
Marcomo, while I don't know you, I feel I have to be frank. Your use of the words "battle strategy" and "fortify" suggest to me you have *serious* problems in your marriage. It seems to me some therapy is indicated.
I actually think you don't want him to be "THAT independent", you just want him dependent on you. How about you fire the little tart and throw his ass out in the street; then he'll have to figure a few things out about independence. Or you can just sit around and mope until he'll let you put your finger in his butt again.
This is rude, but it seems that we're all sitting on a couch with an elephant and talking about the sweet fragrance from the tiny vase of flowers on the coffee table.
marco25
03-29-2002, 09:14 AM
Bruce, as you probably know by now, I've responded privately to your posting. I've shared w/you some things (not everything) that I'm not prepared to post for the whole internet world to see about my life, marriage and family. I appreciate your frank, direct, albeit rude (but it made me LOL) feedback. One thing I have learned in the years of therapy Scott and I (mainly I) have gotten is that you can't force the other to change. So, to protect your own sanity, and if it's worth the trouble to you, you adapt, hopefully w/o compromising your own principles and self worth. I don't know how successful I've been at that; but that's the "method in my madness".
Maybe now some of my other postings re: marriage will make more sense. You make some serious vows when you stand up in front of that church, judge, rabbi, etc. And when one person isn't willing or emotionally able to fulfill those vows, life can become a living hell--or a living battle. And that's why I see some of these areas in my life--and my children's lives--as those I need to defend and fortify.
1 Fine Spine RN
03-29-2002, 12:27 PM
A WISE WOMAN BUILDS HER HOUSE....
Brick by brick...
Only choose the best bricks...
bruce
03-30-2002, 08:03 PM
Marcomo, yeah, I got pretty testy the other day. What maybe set me off was the turn in this thread about other people's bowel programs. I imagine you could write that all up on a beautiful golden scroll, and you know better than anyone what Scott's reaction would probably be when you handed it to him.
On another note, thinking about that elephant made me wonder if it has a bowel program and what it would be like http://sci.rutgers.edu/forum/images/smilies/wink.gif
Truly, Marcomo, I do wish you the best in a very difficult situation.
1 Fine Spine RN
03-30-2002, 09:10 PM
Hey Bruce,
I saw that at the zoo once! No lie man! Makes a body count their blessings! Scared me bad. Baaaaad! Hee hee...
Mary http://sci.rutgers.edu/forum/images/smilies/wink.gif
marco25
03-31-2002, 11:11 AM
We all get testy about things, especially in the SCI dimension of life. I've learned to cut everyone--not just the sci'd--a little slack. You just don't know what disability even the ABs are dealing w/and then take out on the people around them. Thanks for your good wishes, etc. I have a lot to be thankful for, though that may sound hard to believe. But I try to "abide above" where you get a better view of what's really going on.
BTW, I checked your homepage, etc. Love your work, writing, etc. You're mighty blessed, my friend. Godspeed.
exhale43
05-18-2002, 01:48 PM
I was reading through all the page's on this subject. There is so much here that I relate to. My husband is a c-5 incomplete. I want so much for him to have more independence and I know he would love to be independent too. He lost a lot . I took care of him by myself for a long time. And I will be honest in saying it was very hard it got so bad that I felt like I was in the wheel chair with him. I would have to stop and say to my self 'You can get up and walk away' He was at me all the time to do something for him it never ended.I have had time's and I still do where I get so stressed out I get to the point where I have to get away from him. I will go into another room and just sit there. There are time's when I cant leave the house and go somewhere to get away.My husband has been injured now for 3yrs.He has pain every day of his life he has been on differnt meds so many .So the question is how do you seperate caregiver/wife? I spend so much time caring for him. I love him with all my heart but; our live's are different now Every thing he goes through I go through it too and I will tell you this is by choice on my part I'm with him because I want to be. Their are so many people who would walk away. I cant my heart wont let me. I have come real close I will admit that.Ok I see I wrote alot so I'm gonna jump off here now
marmalady
05-20-2002, 01:18 PM
Hi, Xhale,
We all go through what you're feeling; it IS hard to be a caregiver and wife, or a caregiver and mother. With my situation, I had 'grown' my son, he was living his life as an independent adult, and then returned home in a state some would refer to as 'childlike'. And as a mom, it's so easy to fall into the 'I'll do it' syndrome! So my son and I had to learn all over again what our relationship was, and I had to let him do things himself, even if it meant rescheduling 'getting ready' times to allow for a longer period of time.
Tell us more about your husband's injury, and level of function; you said he's a C-5 incomplete? What is his functional level? What can he do for himself? Do you feel he's making you play 'step 'n fetch it' for things he's capable of doing himself?
It's hard to see our loved ones struggle, and hurt. When I do 'caregiver' duties with my son, I find myself becoming a little distant and oh, so efficient, while getting the job done. That allows me to distance a little, and then when our tasks are done, I can go back to being 'Mom' to my 25 year old young man, and we have a great time.
Do you have the insurance/cash/public assistance to get some PCA help or home health aides for your husband? Even if it's only for a few hours, it would give you some 'breathing space' and respite from being a caregiver 24/7. Do you work? Have interests? A support group you can join? Anything to help make you feel like you're YOU again.
If your husband is being overly demanding, then it's time to sit down and have a heart to heart, about what his limitations are, and what YOUR limits are. If you do things for him just because he may get frustrated at performing them himself, well, he just needs to learn how to get over the frustration and do them himself.
Your devotion to your husband and your marriage shine through all your frustrations and feelings. Use it as an anchor, to strengthen your relationship, and at the same time to allow yourself the freedom to be you.
Please keep in touch, and feel free to email me if you like.
_____________
Tough times don't last - tough people do.
shacha
05-20-2002, 02:20 PM
hay xhale44, my husband is a c-5 incomplete ad i understand about him needing you for everything. charlie is 8 yearspost and in those 8 years i have put m life on the back burnr. first i gave up my busines for the first year, the i wentback to school ad started working in the hospital, he emed jelious, he made it so hard i had to quit, i was out of work for about 6 months, then went back to a very good client from before they took me back in an instant thn he got sick again, ou of work once more, back to school, sicker out of school, have now been out of work for 2 1/2 years, m old client had taken me back again, then he had surgery, ow he is back to bitching at me that ineed to work we need the income. somedays icant stand looking at him. i dont think my client will tae me back again and it was the best job. he spends so much time in bed, that i am stuck here with no one to talk to and nothing to do most days. i tell him i m meserable and he says WHY? dah! well i fell better now. i am 46 and he is 57 yes he lost a lot but so did i, i lost the man who protetedme, who walked the beach with me, who fixed the things at home when they broke and the car. thanksfor listining. EVERYBOY BTW has anyone heard from Marcomo?
exhale43
05-20-2002, 07:42 PM
When I posted here the other day I was in one of my mood's. I fill better at the moment. My hsband is a c5-c7 incomplete he can move his arms and kick his legs; he walks with a platform walker with assistants he has no balence and he cant control his hands to pick things up I have not worked since he got hurt so we are living on social security he has medicare and access card which is welfare that pays for everything.Yes he does have two attendants . you see the problem now is his condition has worsened he has drop wrist and his heels where way up he just had surgery may 16 on both feet he has cast on. He will be going to the spastisity clinic in Pittsburgh for botox injections in his right arm and then rehab for two weeks for serial casting of the right arm then in the near future he will have his left arm done i could go on and on here theres so much more but im gonna go for now i will post more later thanks
marmalady
05-21-2002, 01:28 PM
Xhale - Maybe you'll get a little breather when he's in the hospital and at rehab? Hope so! If you can talk with the OT in rehab about giving him a 'refresher' course in ADL's with his hands, do so; perhaps there are splints or other assistive devices that would make it easier for him to do things on his own.
There's great support here for you SCI wives; I feel a little 'out of the loop', because some of the issues I have as a Mom are different than yours as a spouse. I'm so glad all of you have found the forums, and are supporting each other; even if it's to discover you're not alone!
Sacha - I miss walking on the beach with my son. Haven't heard from Marcomo in a while - Hey, are you out there?
_____________
Tough times don't last - tough people do.
bthesing
06-11-2002, 11:49 PM
You guys out there are scaring me. My husband is c3-c5 imcomplete, I guess. Don't exactly know what complete and incomplete mean. My husband is in rehab now and since he had surgery on neck, has lost his voice and swallowing is difficult for him. Surgery was 4/26 his fall was 4/12. He has trouble sitting up long periods in wheelchair. He has some use of right hand and use of arms and wrists. Can move legs, but doesn't know when foot touches floor and can not stand. He can sit up with help and can roll from side to side without help. He does have some feeling in legs and paralysis seems to below naval. Right now his feeling in legs is stronger on days then on others.
I hope to have him home in July sometime. Shouldn't they be standing him up in a standing frame? He is 68 years old and passed out and fell from chair in kitchen on his face 4/12. No control over pepe or bowels.
marmalady
06-12-2002, 04:22 AM
Hi, Countrygirl, and welcome to the forums!
Don't let the info here scare you; it's all still very new to you, and can be totally overwhelming at first. You'll be learning more about the human body and how it relates to a spinal cord injury in the next few weeks than you ever imagined!
Look here for both a definition of a complete versus incomplete injury, and also a discussion of the benefits of standing:
Standing Link (http://carecure.org/forum/showthread.php?t=10506)
It sounds to me like your husband has quite a bit of sensory and function; the doctors and rehab therapists will be working with him over the next few weeks to build on what function he has, in order to help him become as independent as he can. He may seem weak right now, as he is only about 6 weeks post-injury; anyone who spends even a short amount of time in bed, whether they're SCI or not, loses a tremendous amount of strength, and it will take time to build that back up. If your husband was in relatively good health pre-injury, and barring any setbacks from infection or underlying health problems, he should be able to regain his strength fairly quickly. The therapists may not have had him in the standing frame yet, if he is still relatively weak. Do ask them about it, tho, and insist that you want that to be a goal to work toward while he's still in rehab.
You and your husband both should be getting an education from the therapists and SCI-nurses about health concerns (skin care, bowel/bladder care, autonomic dysreflexia), as well as education in home modifications to be made, wheelchair seating and cushioning, bathroom accommodations, and more! I know that it's all rather overwhelming right now, just try to take in as much as you can - it's amazing what you'll remember down the road!
You should be working with the therapists and your insurance company NOW to begin planning what modifications you will need in your home, and starting to work on those immediately.
And the most important thing for you right now is to take care of you; speaking from experience, it's so easy to get stressed and exhausted and not eat right; but you won't be able to take care of your husband if you're a basket case!
SCI is a tremendous shock to both family members and the person injured; it means altering lifestyle to a degree no one ever imagines. Emotions are helter-skelter for him and you, I'm sure. Recognize that both of you are entitled to your feelings of anger, grief, and sorrow, and work through those feelings as they come up. And please feel free to ask away here in the forums, as questions come up or problems arise. I'm also available via email if you'd like to email without posting.
Again, I'm glad you found us, although sorry for the reason you have to be here on the forums in the first place.
_____________
Tough times don't last - tough people do.
[This message was edited by Obieone on 03-29-05 at 10:42 AM.]
Countrygirl, where is your husband getting his rehab? Is it a specialty SCI center? Standing is always a good idea, as long as his blood pressure can tolerate this. Not all centers do this, so you may need to push for it.
Is he a military veteran? He may be eligible for either inpatient or outpatient care through his regional VA SCI Center.
ParaDudeCan
06-13-2002, 05:42 PM
...you CANNOT be your spouses PRIMARY care giver and hope that the marriage can survive and be healthy for both.
Yes you can be able to do all the dirty work if need be but to do it fulltime is not a healthy thing. The lines get blurred between lover and employer and this can only lead to a slow but steady deterioration(sp) of the most important thing, your marriage.
Make sure you give yourself the time you need to be a wife, and let someone else be responsible for the AID work. If you don't I think eventually your spouse will start to think of you as an AID and not a loving/sharing wife/husband.
imho
martha
06-14-2002, 09:35 AM
Nice thought. Unfortunately we can't all afford aids. This SCI business is extremely expensive and insurance only covers a fraction of the total costs involved. Add a few pre-existing conditions to the equation, loss of income of the SCI'd spouse, and you're looking at a choice of paying the mortgage or hiring an aid. My mortgage company is a little picky about that choice. :-) But then maybe I'm the only one in this position -- I really have no idea how others cope with these problems.
ParaDudeCan
06-14-2002, 11:45 AM
... I forgot that for some a personal care attendant is not a feasible option, I hope that someone here can help you to find some assistance in that regards.
Ya see Jeff, some people still do need a "care" system that works. I am not saying throw more money into the system...just that the system of "care" still needs our support....
stillcrazy
06-14-2002, 12:50 PM
Actually you are both right. We can't afford an attendant and there is no way this "marriage" is still a marriage or ever could be again in a million years. It is a "condition" we are both stuck in because of falling in between the cracks of not having enough money to be able to afford help, but making too much money to get assistance with attendants from the gov't. If you have an SCI, you had better either be REALLY rich to afford everything yourself, or REALLY poor to be able to get state help. The "middle class" be damned again! But, as Dennis Miller says, that's just my opinion. I could be wrong.
marmalady
06-14-2002, 07:29 PM
I'm going to throw out some ideas for you folks, to maybe help you to 'think outside the box' in getting some help/respite for your situations, when you find yourself in that 'middle-income' position. Just some thoughts, maybe they'll give you some of your own to work on.
- Speak to YOUR doctor about local Social Service organizations, to see if they provide respite care.
-Do any of you, as caregivers, have any medical problems (bad back, etc.) that your doc (not your spouse's) could write a letter of medical necessity for? If you're physically unable, or the emotional stress is too great for you to provide the tasks of caregiving, then help should be made available.
-Do you have local community colleges with nursing/allied health services programs? Or Vocational high schools? You may be able to get a student part-time to help out, even if it's with minor things, or to give you a break during the day. Yes, they'd be constantly changing, as they graduate and move on, but you'd get relatively inexpensive labor.
_Can you call on other family members/friends to give you respite care, to get out of the house, get your hair done, see a movie, walk in the partk, or whatever it is that you do to relax.
Just some thoughts and suggestions; I've been where all of you are, and I know what a massive undertaking it is to be on duty 24/7 and still try to maintain a relationship, be it spousal or parental.
_____________
Tough times don't last - tough people do.