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Spouses of chronically ill and pain

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Caretaker1 posted 4/16/2014 21:57 PM

Please share your stories of being the primary caretaker of a chronically ill and or in pain spouse. What you did, what whipping post shit you put up with, what you empathized with what you felt if you were losing yourself in it, co dependency, feeling alone in the marriage, the impatience, how it consumed you...mine was sick for over 20 years lost major organs, was on more pain meds than I've ever heard of....our new normal ended up in a divorce due to wear and tear on the soul, biting the hands that fed you, total cruelty, meaness. I was good enough to be the caretaker but last on everything else.

[This message edited by Caretaker1 at 9:58 PM, April 16th (Wednesday)]

PurpleRose posted 4/16/2014 22:52 PM


He had a chronic disease before we even met- though I was blamed for it during the divorce.

He had a few major surgeries to save his life, lost major organs, was chronically sick, tired, cranky and on drugs or alcohol for the larger part of our lives together. At one point he was homebound for about 2 years- we did nothing as a couple, let alone as a family. He was too sick. He slept a lot.

I was the one to pick up the slack with the kids and responsibilities. And I put my needs on hold- because he was sick. I was "rewarded" after one of his surgeries for being the "best wife ever"-- what a joke.

I accepted him sick, I accepted him well, I accepted him tired, cranky, on drugs, off drugs, angry, weak, etc.. I just loved him through it all.

But it wasn't enough. Even after he had his life-saving surgery, I stuck by him faithfully and lovingly, making sure everything was taken care of, even when I had to rush him to the ER, even when he ended up losing his colon and wearing a shit bag on his abdomen for the rest of his life and I did not care-- it all wasn't enough for him. I didn't love him enough. Or the right way. Or whatever.

I felt guilty having fun, so I rarely did. I felt guilty eating certain foods, so I wouldn't. I felt guilty when the kids were loud because he needed to sleep at 4 in the afternoon, so I kept them quiet.

What a joke. All of it. It was always, and will remain always about him.

Caretaker1 posted 5/20/2014 21:16 PM

Purple Rose OMG You are so right. The world revolves around them.....I'm mad at myself for lasting as long as I did.

Fuck them. He has to wear a shitbag for rest of his probably shortened life. Please PM.

[This message edited by Caretaker1 at 9:17 PM, May 20th (Tuesday)]

PurpleRose posted 5/20/2014 22:34 PM

PM sent.

It is incredible how crazy-making it is when you are dealing with a chronically ill person. Like, you can't blame them for,feeling bad, tired, sick, etc... But shit! It is exhausting. And when they keep treating you like crap there is only so much you can take before you break.

But I held it together and kept things going. Pisses me off that in the end, he screwed me over again by cheating. Cheated me out of a fun and fulfilling family life while he was sick (years) and then by cheating so I had to D.


Williesmom posted 5/21/2014 11:54 AM

Yes. For my wxh, it was one thing after another.

Stomach issues, surgery, neck pain, headaches, depression.

I would come home on many Friday evenings to find him already in bed. He would not wake up until Sunday evening - not even to go to the bathroom (how is that possible).

I would spend the weekend doing housework, cutting grass, grocery shopping, etc. all while wondering if I should cook something, was I making too much noise, blah, blah, blah.

It was all about them. And I'm sure it still is.

He was most upset about the Divorce when he realized that he lost his health insurance. Actions, meet consequences. He still has no health insurance that I'm aware of.

Sad in AZ posted 5/21/2014 13:02 PM

My situation was similar but different. X was seriously injured when he was on the NYPD. He died twice. His skull was fractured and he had traumatic brain injury. I was told initially that he would probably never recover his full function.

He did recover, but he suffered from seizures and eventually had to quit the PD. It sent him into severe depression. He spent a year on the couch. Our friend would call every evening to say he had work the next day, did the X want to work? The X would say yes then never show up. I'd leave the house with our toddler in the morning for work, and when I came home, he'd be in the same position on the couch.

I finally moved us to AZ to get him away from the daily reminders of losing the only job he ever wanted. He eventually went back to work, but the depression hung over us like a cloud. I was mother & father to DS, as the X could not function as a father.

He eventually became a corrections officer. During this employment, he was seriously injured in a freak accident on the cell block. I stood by his side through all the workers comp issues. Incidently, this is where he met the OW.

Then he suffered a systemic strep infection that left him bedridden with extremely high blood pressure. Nursed him through that, took him to all kinds of doctors. You know the drill.

Not long after this second illness, he started the A. I guess it was his YOLO.

ddame23 posted 5/21/2014 13:30 PM

First- it breaks me to read what everyone has gone though.

Our MC referred to me as a caretaker to my bipolar H for the first time in our most recent visit earlier this week. I never thought of myself that way. I don't like it. I don't have access to his treatment team, he won't sign the HIPAA docs, but does say I'm welcome to leave them voicemail messages. After D-day I asked him if I could sit to pack his meds with him and for him to let me know he's taken them- That lasted about a weekend. I am however left with managing the home when he's hospitalized repeatedly over the past 5 years, or too depressed/zonked out on meds to do anything, take his moods and crankiness when he is unwell, deal with his criticisms but not be allowed to express myself. When I do, I'm being critical and putting him down. He takes things I say and very calmly and methodically tells me all the ways I'm wrong for thinking and feeling the things I do.
He was recently diagnosed with amnesia from taking klonopin and I said in MC recently that this relationship is draining me, I have no reserves left and that the relationship keeps asking more and more of me. The next week he said he's wracked his brain and honestly cannot identify what could have happened that would cause me to say this in MC.

EZ4U posted 5/21/2014 15:17 PM

I too was the spouse of a bipolar person in crisis. Just wanted to encourage others like ddame23 to voice their exhaustion because mental illness takes such a toll on the caregiver when exacerbations happen. One who may appear to the outside world as healthy can morph into a nightmare at home of either mind-numbing helplessness and paralyzing anxiety requiring the caregiver to do everything, or run-amok mania that forgets all responsibilities and leaves despair in its wake. I hear you and understand.

ddame23 posted 5/21/2014 15:55 PM

EZ4U, I think I gave the wrong impression. His A happened after he stabilized and was no longer hypomanic.
Actually, I wasn't "meeting his needs" during his illness and that's want "made him vulnerable to having an affair".
He stabilized spring of 2012, I was so hopeful that I had gotten my husband back. I was an idiot. By summer he was texting his AP daily and by October it was a full on A. I never had a chance.

cdagal posted 5/22/2014 08:00 AM

My XH suffered from low self-esteem and went to a shrink to find out why he was always underemployed. He was put on benzodiazepenes and this, coupled with drinking, resulted in a car accident. I saw him through the withdrawal (2 years of agony), the lawsuit, the ongoing depression, the continued drinking, the unemployment. Everything. This, while raising our two sons (they were 3 and 6 months when the shit hit the fan)and working full time in a demanding job.
When he admitted the A, he said it was because I was always controlling things, telling him what to do, never doing things with him. Hmmmm, I guess that happens when you find yourself solely responsible for the children, the bills, and playing caretaker to someone who had no interest in anything.
It was through serious introspection over the last 4 years that I now realize my co-dependent tendencies were front and centre for the last 10 years of our marriage.
Would I have done anything differently? I still would have done all those things to support him but I wouldn't have done it to the detriment of me.

phmh posted 5/22/2014 19:06 PM

A few months after our marriage, my WXH was diagnosed with Ankylosing Spondilitis, which is a type of arthritis that essentially means his spine starts to fuse together and he has terrible, and near-constant, pain.

It can be somewhat controlled through weight management, daily exercise, diet, medication, etc., but it was likely that he'd end up in a wheelchair someday and, depending on the progression of the disease, could wind up blind or die an early death.

I didn't do much caretaking -- other than exercise with him daily, make sure we ate properly, and never talk about the changes in our life due to his illness (we couldn't take long car rides, for example, so nothing major at all.) I'd suggest trying things, like yoga or massage, but he'd be an asshole about suggestions so finally I stopped.

I walked on eggshells a lot and made a lot of excuses for his behavior (he's just saying that mean thing because he's in pain; he doesn't mean it...)

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