19 replies to this topic

[QuadsWife]

This is more of a vent than anything else – but what I love about this site is that it’s possible to vent among people that (for the most part) get it. Kinda.

There’s been a lot of issues in our relationship of late. I’m not going to delve into that, because that’s a whole other post, but suffice it to say that this marriage may or may not last. We have both acknowledged this reality, and have actively committed to working proactively toward a solution.

Fine.

So tonight – I waited up for him to get home. Today – btw, I cleaned the house, did the laundry, bought groceries, and bought and addressed all Christmas gifts from a mutually made list. Have I mentioned that we both work full time?

Fine.

He got home late, and requested that I do his evening care, which this evening involved a bowel routine. I cancelled his nurse and agreed to do this. No problem – we are working on making this relationship work, and I will do that.

I proceeded to do so, which was going very very slowly. After an hour of trying (during which he slept) I decided that this was NOT going well, and inserted a supp and hooked up his nighttime equipment, figuring that I would wait an hour during which he would continue to sleep, and then be done with it.

While I’m doing this he snaps awake, insists that he is NOT sleeping and demands why I am forcing his nighttime equipment on him. (This is the same equipment he uses every night. It is not unique to my doing his care).

At that point I left. I had had it. I am trying so hard to be patient and kind, but at this moment I am just so frustrated that I can’t even think straight. So…here I sit, writing into the unknown – hoping that this will reach someone who GETS it. Meanwhile I wait for the supp to do its job so that I can go to bed as we both work in the morning.

[tyvin]

Well what happened? I get it and it sounds like he may have jumped the gun with the snapping issue. Always talk it out; don't go to bed with it unresolved. Did you cancel the nurse for good or was it just that one night?

Either way it sounds like you had great expectations that weren't filled and got hurt. Cleaning and having everything ready only to be disappointed is terrible. Let him know how you feel.

Next time he falls asleep snap a quick picture with your cell; can't argue with that (lol) anyway hopefully things have gotten straightened out.

[tomsov]

not to sound like an ass. but as capable or incapable as he is everything we do has at least 5 more steps then an able bodied person. i am a paraplegic. it takes me almost 2 hours to do my routine. i work and when i work the only part of my body that is able to be used are my hands. i am not a counselor. and i won't say that he was right either. i don't know. but out of experience of being a guy i will say that he is many times ungrateful, stubborn, and has no tolerance for people pointing out what they did right. because he probably doesn't care. vent please i love venting here. i am just saying that this situation and many of the people on this forum didn't ask to be a quad or a paraplegic and there are days at least in my case that i want to break someones head off . if it were me, pick your battles wisely. petty shit is petty shit. he should have said thanks. but he did it, but do you feel good that you helped him?

[Tetracyclone]

That moment when a person snaps out of a deep doze is a dangerous one. Stuff wells up out of the subconscious like primordial ooze.

My husband generally falls asleep at his computer or watching TV. he is rarely able to make an intelligent decision about when it is time to go to bed. He just falls asleep. If I wake him to get him to bed he snaps quite angrily, like a beloved dog who draws blood by accident because you hit his defense reflex when he was asleep and unprotected.

I'm pretty sure that is all it is.

Oddly, a lot of things that hurt our feelings are not personal at all.

You are tired, dear lady. So tired.

[QuadsWife]

Thank-you for the kind responses.

Tetra, you're absolutely right. I am tired. Tired physically, and tired mentally.

After writing, I cleaned him up and went to bed, during which he continued to insist that he wasn't sleeping. I finished as quickly as possible and went to bed.

This morning he actually did approach me on his own (no prompting or anything) and thanked me for doing his routine. I asked him why he wanted me to do it - this is something that his nurse does 99% of the time - and he said that he just felt like having me do it, as it was faster.

Fair enough.

I didn't say anything about him snapping as he likely doesn't remember it and it would provoke a fight over....what exactly? I agree with the comments on here that it's an instinctual reaction that he has. But that doesn't mean it isn't frustrating - thus why I vent on here instead of taking it out on him.

To answer your question, Tyvin, I just cancelled for last night. Canceling his nurses isn't terribly unusual for us, but on a routine night is. Especially since he had missed his usualy spot as he was late getting home. His nurse had actually shown up at his scheduled time, and I'd had to send them away initially as I had no idea when he was coming home. This then bumps him to the back of the line as far as getting another spot - thus why he wanted me to do it and get it over with. I was just frustrated because I wanted to sleep, and doing his routine means that I'm up for an extra 2 hours.

Anyways - thanks for listening to this diatribe. I'm just tired and grouchy, and I'd rather let it spill here than give us something to fight over. I appreciate it, folks.

[jscott92064]

I hear you! Thanks for sharing your vent.

This is a tough road for all involved.

Sounds like you are doing your best and that is all you can do.

[qbounce]

Next time don't appease him . . . allow him the bump to the end of the line, and remind him that he snapped at you the last time you attempted to help him.
Maybe then he'll "get it."

If you're both on the outs, he'd better get used to you not being there anyway.

[LeahC]

Him thanking you for doing his routine may have been his proud way of saying sorry.... as well as showing gratitude!

[QuadsWife]

That's a very good point, Leah. It's hard for me to stay angry. We talked more this morning and was afterwards I was feeling pretty good.

He came by my work (as a legitimate, paying customer) but then had a bladder accident whilst here...which meant that I had to take some uncomfortable time away from my job to help him clean up - very awkward as I don't have the most understanding boss. To be fair, I'm sure it was just as uncomfortable for him.

I'm not sure what I want - I just wish sometimes that our lives were easier and didn't continually revolve around bodily functions.

Thanks for listening, all.

[kjm465]

Thanks for taking the time to share with us. It's nice to know that there are people to listen - even when there's not much that we can do to help.

[Tetracyclone]

Yes, bodily functions. Often of a Saturday morning i would prefer an amorous interlude, but must get up for less satisfying bodily functions.

[wheelchairbling]

Really, what works well it just to state what you're feeling and draw a line. Kind of think ahead about common situations, so you don't get off into yelling or personalities. Something like this:

A: (Quietly but firmly) "Lay off me. I'm tired".
B: (Resentfully) "So am I. You have no idea how tired I am!"
A: "Then how about I don't snap at you if you don't snap at me?"
B: "Fine."

Of course, you switch roles as needed! The idea is to reach a truce where you agree to show mutual forbearance when things have gotten to be too much. After awhile, you can communicate the whole conversation with a shared look.

(Just as I was beginning to type this, my husband, tanked up on his bedtime drugs, decided he had to go to the store and buy candy bars. Since I didn't want him to die in a horrible fiery car crash, I had to drop everything and drive him. It wasn't open, just like the last time. But it's easier to drive him than to convince him - after taking his meds - that the store closes at 10. I'm scared he'll get up after I'm asleep and try to drive himself. Luckily, he doesn't get that urge very often! I think I'll write a self-help relationship book: "Very Tired Gimps and the Very Tired People Who Love Them".)

[mcwriter]

When things get strained to where you are focusing on the bodily functions and how it is intruding upon what you would rather be doing, gee whiz, it sounds like you are stretched so thin and so tired that you are not making romantic time for each other. So why are you surprised?
You cannot wish it to happen with a busy schedule, you have to make sometimes a repeated effort to change your routines and straighten out your priorities for your relationship. Unfortunately, the bodily functions do not always cooperate with plans, but how you handle them good grief....why did you just stand there and wait? You could have at least cuddled. Did it ever occur to you that he might be wondering about what it might be like to forego the outside help altogether? Point is, there is something going on with him, something he is thinking about and has not communicated yet.

Both of you are too tired to act on anything constructively and your floor is covered with eggshells. Your time apart with work, etc,. is not helping and you need to make a concerted effort to agree to get some rest before you tackle any big things concerning your relationship. Can you plan a day or two off together to just have a restufl day together and not "do" anything?

(I apologize to those who have the need to separate from their partners for personal care, as my spouse and I are not those.)

I encourage you to vent here to get it out of your system. It is much easier to think when you can type some of it out and let go of it in some way. I imagine there is more to your feelings that your marriage is on the "outs" than you have mentioned so far. Take your time and don't rush to any conclusions.

[GoldenYears]

To all the great postings I'd like to add ...


Around our household, time has now been divided between "before accident" and "after accident". What we were "before accident" is not the same as "after accident".


"Before accident" everything was predictable, I knew what to expect. "After accident" nothing was predictable and I never knew what to expect. Every day was like falling off into a new hell. We were on two different paths.


His direct care was never a problem for me, even the bowel care. That care was a snap compared to the emotional mess he had become since the accident. For him, his care was humiliating, his condition was humiliating and limiting -- not a snap. Worse, to me it seemed he was deliberately trying to make things impossible and very very painful.


I caught myself always bracing for the worst in his behavior on a daily basis, and that impacted my life in very negative ways. I was defensive and grumpy. And deep inside I didn't want to be around him anymore. I wanted to run away. It seemed that all the activity he could once do with his arms, hands, legs and feet were now suddenly compressed into one organ -- his mouth, and it manifested verbally in great heaves of nastiness and verbal aggressions.


He was an emotional wreck and so was I. The train was on a track that took both of us into crash mode on a daily basis. Then, he'd back it up and do it all over again. The worst part of the mess I had become was I found myself not wanting to do his Nursing care. Of course I never neglected that part of his care, but the feeling was definately there. I did not realize until then, that I really did expect him to be grateful for all the care he was receiving. My own expectations in this had become a problem to me. Those expectations had to go, and go fast because the emotional part of my brain was telling me to leave and never look back.


He meanwhile was so encompassed in disability, he no longer had room in his heart for anyone who wasn't disabled. He is so kind and supportive of other disabled people, yet clearly the opposite to those who are not. He seemed to be a control freak to those who were not disabled, and brutal as well.


Then I realized of course he understood the disabled and their needs much better than mine. He spoke their language. He and they now shared the same culture. And I was judging his behavior from the standpoint of someone able bodied.


What I now think, this is all about is habituation rather than being a control freak or brutality. He is learning how to adapt to a new environment and there are no road maps to show him or me the way. And I know without a doubt this new way of life he now lives is something that surprised and overwhelmed him, and he really is doing the best he can do given the circumstances and personal knowledge he has in coping and dealing with all of it. I know this because I know I too am doing the best I know to do, even if I'm making a mess of things. So again, I'm judging him by what's in me, and what comes from me. I just don't know what else to do.


Then one day out of the blue I remembered a project. A group decided to go undercover into homeless shelters, and gain personal knowledge of the dynamics then figure out what could really be done to help those people. All of us thought it would be "fun" and interesting. Let me assure you, that was the most difficult and life changing project I've ever participated in. It was so difficult most of the volunteers ran off and went back home before the 10 day commitment was over.


But anyway, there we went, two by two into those shelters. By the third day my Project Buddy was calling his wife to come get him, and I was crying like a baby day and night from the conditions in that place. Then one of the real shelter residents asked me, "what was the first thing that went through your mind on the third day?"


And to this day I remember vividly the exact thought that went through my mind. "I'll never get out of here". That's how trapped I felt even though I was a covert volunteer and could leave and go back to my family and a nice comfortable home.


"I'll never get out of here". That's exactly how I felt -- trapped in the dynamics PawPaw was engulfed in.


It would be PawPaw who would tell me, "Goldie, I'll never be the same again". Finally I understood what that meant. He was in a place he could never get out of.


Well, then from these sour lemons, we are gonna make lemonade. We have to.


And I keep trying to find the recipe.

[jscott92064]

Goldie - your post is a really good read for me. Thanks for sharing.

Crazy times we live in - that's for sure.

I'm up doing my husband's bowel program because he is constipated and hurting. (No, I don't need advice on that one -- it's something we deal with here and there. It's been a tough two weeks --he's had regular blood in his stools these past two weeks and is scheduled for a colonostomy (sp?) January 13.)

I never saw my life turning out this way, as a caregiver.

Yes, this journey sucks alot at times and then there's the gold I found along the way. I do not look at life the same way as I did before. I think I took many things for granted and now I live for the moment. My relationships with people have become deeper and I never knew love like this.

You wrote in another post (I think) about how life now is rushing out to see a beautiful moon and stars. That's how I feel.

The "sucky" part for me is when I cannot always make him feel better physically- one year is not enough to know his new body and what it needs. Sometimes I can with my reflexology and body work for him and other times I'm at a loss and the SCI beats me out.

What a cruel joke this SCI is --you are paralyzed and yet the nerve pain can be unbearable at times. How I wish for him to be pain-free.

Thanks for all your recent posts. I get alot from them.

Merry Christmas!!!

[mcwriter]

Ahh yes, for him to be pain-free...

Sometimes that seems to outweigh everything. I think I can count the times in the last 16-ish years that my husband has been pain free on one hand, and those were short. It really never ends, the level may change, but usually for the worse and the meds only take the edge off. His pain affects everything and us.

Sometimes he acts normal but I will see tears and he smiles through it. Sometimes everything he says involves several cusswords, everything is negative and I know the pain level is on the verge of untolerable. Once in a while he tries to do something he shouldn't because I know he will be suffering even more later because of it. Most of the time he avoids anything that could cause more pain. His mood changes with the level of pain. Some days he wonders why he is feeling more pain and I have to remind him of whatever he did the days before or that the weather outside has changed---he actually feels a little better if he can put a reason on it.

If I had to choose only one thing for him to be free of it would be the pain.

[jscott92064]

Christmas Eve and Christmas Day was spent with him being constipated and my running out Christmas Day to get some mag citrate. Then my sister who is a pediatric physiatrist (sp?) explained to me how to give him a large volume enema. Which I was glad to learn because I had tried everything I knew of. Soon our bedroom was smelling really bad and I was soooo happy to see all the crap come out!.

Never thought watching poop come out would make me so darn happy. Was delighted to see all the mess (ok - only temporarily because I had to clean it all up!) Somehow I just know all my caregiver friends out there can relate. Him finally pooping and feeling better made me really happy.

For sure, no one can ever accuse me of not knowing "shit" because well, I know "shit"!! And I like to see "shit together" - nicely formed. And I like "shit" to flow and I ask everyone if they are into praying for my husband to please pray that "shit happens for him". Constipation is no fun.

And to pray for him to be pain-free --it's all I seem to wish for these days. It's like you can do everything right and it still sneaks up on you!

Edited by jscott92064, 28 December 2010 - 04:19 PM.

[GoldenYears]

Jscott92064, thank you so much for your very kind words. I want to tell you also that I appreciate your postings very much. We are so lucky to have so many good people on this board. Your loved one is blessed to have you!


It's amazing to me that we all share the same concerns. I know exactly what you mean about being excited over a bowel movement! Around here it's called "poop patrol" and that care was the most difficult for Hubby to accept emotionally.


Since his injury is to center cord and it's catastrophic, his extreme pain was a surprise to me. His skin even hurts to the touch. Thankfully his Doctor kept working with various meds until she got a combination that really does work well.


And like all of you, I am continually thinking of ways to help him, and looking at things that might help him.


He is really doing very well. I'm the mess now. But by golly with all the warts and woes that have clearly become badges of pure raw courage, this bunch is going into a New Year with heads held high, laughing, and thanking God for each other, and the opportunities we've had to grow as individuals and as a family.


In truth, I don't know how the hell we made it though 2010, but we did. Our New Years celebration already has a name.

It's "Whew"!

A blessed New Year to you, and a big Granny Hug for you as well!

[jscott92064]

Bigs hugs right back at you too!

I hear you about his skin hurting just to be touched! Now that it's been a year for my husband, he can finally be touched.

For the pain, surprisingly what works well is my lightly scratching and tickling his back all over. Prior to SCI, he never liked me using my nails and now it alleviates the burning in his legs. The doctors don't know why it works......

Still, we need to find him some pain meds to help on the occasional night when he needs them because the above method works about 80% of the time --not bad. Other than that, neurotin does nothing and lyrica gives him nasty side effects. He would rather be drug-free.

Oh, and I hear you about feeling like a "mess" yourself. I am having a tough time relaxing these past few days because I feel like I am on "high alert." I do a great job of holding my own feelings back while I am trying to take care of my husband. Then when all is fine, those feelings come rushing back up, saying "deal with me too!".

Sigh. Today I am going to spend time in my garden. Last year I wasn't in a place to take care of it and this year things are better. I have about 200 bulbs on order and I'm heading to Home Depot to buy.......steer poop!!! This is the type of "crap" I want in my life. Ha ha! It makes the soil better and the flowers bloom.

Lots of love to you!!!

[mcwriter]

Amazing and very welcomed posts, ladies!

I too am happy for poop! Last month one of my husband's pain meds had to be changed because they stopped making it and ran out of the stockpile. Anyway, that med actually worsened constipation by a lot!

Now that he has beenon a different one for a month, while it does not work as well for the pain, I am relieved to see that his bowels are actually moving more frequently! It has gone from once per month to about three times per week---WITHOUT extra meds to poop!!!

I am ecstatic about this, but his pain level is higher.

My husband has a lot of days too where it seems like I can't touch him anywhere that doesn't hurt. Sometimes even just setting my hand anywhere on him hurts. You just never know when.

On a day he can stand it, I'm going to try the scratching & tickling thing, since my husband has that pain in his legs also. It's true that stimulation of some kind somewhere else seems to help. The trick is finding where to do it that works.---Thanks!