thankful for support.

[texasstyle]

Gee, I don't know what I would do if I havd no place to vent. NO ONE else gets this. I try so hard to be a good caregiver but man, I wanna just give up. I'm worn out and I want a normal life because mine is certainly not. So today my husband was having upper and lower extremity muscle paralysis for about 4 hours. (a little better for now I think. Now that he can sorta move he's putting together a tomotoe and cheese grilled sandwhich. (You don't have to say anything about that. I know) He was on the floor 2x, had to get him up. His muscles are so weak. Could barely walk if you want to call it walk, and had to hold  his hand with another hand to get a cup to his mouth. Arms so weak to hang a coat up high on  hooktook a lot. I told him I beleived it was his Potassium and he really doesn't care. "The dialysis unit said I'm fine".. blah, blah..."I'll wait until it subsides". I said it doesn't subside it has to get pulled off with a dialysis. He said he'll just have to wait until Monday. 3 months ago he just had major heart surgery from fluid around his hear that cause his heart to rupture. He was dying on the table. They pulled off almost 2 liters in fluid and blood from his heart area. Now I know I can't make someone do anything and I can't make some think differently, but it's wearing me thin. The CONSTANT worrying. It just never seems to end. I know to spend time with friends but the worrying never leaves plus, things like this well are, just, jack ass-ey. Geez. How do you get through this?I feel soooooo cinsumed in HIS illness. it's just crazy..... Thanks.

[texasstyle]

and apparently he's torn or broke his left knee because he's wrapped it in an ace bandage and won't go to the hosp. until tomorrow. Why? I couldn't freakin tell ya. I notice some SOB after exertion. I know there'll be an emergency run in the  middle of the night tonight....

[natnnnat]

"I'll wait until it goes away"  Yeah, Gregory says that too, and he also says, "I wont go to hospital until I'm crawling along the floor"  He says that with an acknowledgment that it is crazy talk, but knowing that its crazy doesn't seem to translate into him going to hospital before things get really really bad.

Texasstyle, from your posts over this past year I learned to go outside and clean the car (metaphorically speaking) and leave him to make his own decisions.  But I only manage that kind of detachment half the time, because I have a number of conflicting issues:  (1) I want him to live as long as possible and keep his transplant as long as possible (2) I don't want to boss him around all the time, it just makes him angry (3) His family look at me when they ask him, "why haven't you gone to the doctor?" (4) I know that when he eventually is in hospital he will grin at me and say, I knew days ago when you told me to go that you were right.  (5) I want him to be the person who makes the decisions about his own body.  Well in fact he is that, so I try not to get in the way even when he seems to be making really mad decisions (6) He tells me that he knows his body better than anyone else (7) Once you get to hospital, half the time they stick you in a bed and observe you.  This is the part that I want him in hospital for so that others are observing him, not me, but he wants to be at home, as he can rest and do nothing in far greater comfort at home than in the stressful environment of the hospital.

No conclusions here.  Only  and lots of 

[natnnnat]

Yes!  ( 8 ) (quoting you) I know there'll be an emergency run in the  middle of the night tonight....  Exactly.  It's always in the middle of the night, like at 4am or something, that things reach their peak and then its your night's sleep gone and the next day as well.  Plus there's the part as you are trying to go to sleep while hyperaware of the bundle of symptoms in the bed next to you.

I remember one night, a day or two before I finally got him to hospital with pneumonia, I awoke in the middle of the night, he was shaking the bed with his shivering, I rolled over and went back to sleep.  I remember thinking, I am so sick of arguing with him about symptoms, he can just sort himself out.  Not proud of that moment, but that's one of the places I visited in my wanderings between these 8 variations on what I should do when my husband is sick.

[boswife]

It's so hard sometimes     It just breaks my heart for you because i know the worn thin part oh so well..  I could go on a rant with you but actually, im too tired tonight.  I just want to wish you well, and prayerfully, some rest and peaceful sleep..   I wish I could send you some of the energy im saving up for when it's my turn again  but  it just doesnt work that way.  Blessy you wiffie, and i hope tomorrow brings something good.   

[Mizar]

 Texas, I don't know Your Situation, but " I DO GET IT "  My Husband has been in the Hospital, Four Times, in the last Four Months. I don't even Post about it on Here anymore. The last time was Two Weeks Ago. I got up at 6:00 a.m., to take Him to D. He was sitting in a Chair and said, " I don't think, I can Stand up, I'm so Weak " He has said, this kind of thing, before, so I was not Alarmed. I Warmed up the Car and came inside and told Him, it was time to go. He Stood, up, took His Portable Oxgen and Walked as far as the Garage, ( about Ten Feet ) and then just Collasped. He didn't Pass out and He didn't Fall, just went to the Ground and could not stand up. I could not get Him up. I'm a 62 Year Old Woman and He was Dead Weight. I called EMS, to help Me and insisted, they take Him to a Hospital for D. The Nearest, Hospital to do that is 30 Miles away. They keep, Him Overnight and Decided, that His Potassium, had gotten too high.
My Fear, is that, He will Fall and Break Something.
Hang in There, Texas. You are not alone.

[del]

I really feel for you texasstyle.  Dialysis and the life style it carries with it is hard enough without having to deal with the added stress of the way your husband is acting.    to you!!

[RichardMEL]

wow TS! un-freakin-believeable - I had thought after his massive wake up call with the high K and the heart fluid issues and all that that he'd learn.. but he thinks he has a torn knee, and he can hardly walk etc and he STILL won't get checked out - but can make a TOMATO and cheese sandwich (not only high phos, but high K too!). OMG!!

TS you must have the endurance of a saint to stick it in there. I think I would have thrown my arms up and said "fine you do whatever you want. I can't stand by here and watch you do this to yourself it's too painful" and wandered off for some me time.. even though of course that whole time I'd be worrying. I can't imagine how you are hanging in there.

WE ARE HERE FOR YOU!!!!

I will even make you a special coffee, with whipped cream!! Perhaps a shot or two of wiskey too might help? 

You just, i guess, have to let him fall on his face - if he's determined to be a silly "man" and endure all this crap, and make it worse by deliberately taking on extra bad stuff, then what can you do? he's an adult. he needs to make his choices and live by them. Unfortunately YOU also have to live with them too, and that part sucks.

My best wishes and thoughts.... 

[texasstyle]

Ah it's so good to see that I'm not alone. I can't tell you how much better that makes me feel. "Me" being the keyword. "I" am important too right? Anyway, he called 911 on his own. I was shocked! He did says no sirens to call attn to the ambulance coming to the door or he was canceling it lol. I quickly got back on the phone and said just get here. It took  people to put him on the strecther and gt him out, and 3 to get him into the bed at the hosp. He has apparently torn ligaments or tendons? , but no break. The pain was just awful for him. I would have to say agony. 2 shots of Diluladid is helping right now. The muscle paralysis was terrible and Ican't beleieve he went through that. His potassium is 7.8. They've just started bi carbonate and a dialysis in a few minutes. They said  single thing on his blood labs of whacked out crazy except his glucose at 77. His creatnine is 7.2 (?) but they said that can come with just having kidney failure. All this once again, could've been prevented with peoper diet. He had no regard at all for it. I told the Dr.s right away i highly suspected his was Hyperkalemic and I was right. Muscle weakness, muscle paraylsis etc.. all classic symptoms. PLEASEEEEEEE follow your diet properly. What and how you eat not only sustains your life, but the QUALITY of it to. A dialysis is on life support. That's scary to say but it is the thruth. It is up to you to take care of yourself from the moment you end your sessions. The "poisons' get into your cells and tissues where dialysis can't remove them because I believe it only removes things from the blood itself. He was given binders to help draw the potassium out of the cells, and back into the blood so it could be pulled out. And the fact that he has now a major injury to his leg. That is in question right now about surgery or what ever. You guys have enough problems you don't want anymore. You should be enjoying life the best you can! Poor diet lead to high potassiu (hyperkalemia) that lead to muscle paraylsis that lead to a major leg/knee injury from the fall. Please take care of yourselves. I don't want this to happen to anyone. Use this as a lesson for your own life. High potassium often has NO SYMPTOMS and can lead to CARDIAC ARREST with out warning. Question your centers often about your labs, get copies if you can, and learn how to understand your situation. You are your own best advocate!  My heart goes to everyone withthis disease. I do know in my heart, that we probably all are going throug the same things in one way or another. Hugs back to you! Carolyn

[RichardMEL]

wow 7.8?! no way.

Sorry TS, but your husband is a freaking IDIOT!!!

I don't understand how anyone could go through all that once, and then just go back to doing the same crazy thing - with them suffering the consequences.

I'm so sorry

At least he is in hospital now and getting some attention.

 

[texasstyle]

7.8 yes. I almost cried when they said that. I know they took blood at his session yesterday but his last labs show have actually reflected Wed.'s number if I'm thinking correctly here. Does that sound about right? I hope they can bring the numbers down soon asap. He must be a total mess. Every thing on his blood was bad bad bad minus the sugar.I' thinking once the K is under control he ay be able to come home but, there's the knee. Can't even stand on it. On tthe fround in moaing pain. The only good things about that is that it may give me the perfect opprotunity to keep his butt!! HAAAAAA just kidding. Not really. Well...maybe lol. Hhm... the thought did cross my mind hee.I guess sodiums, and what ever else they're talking about have to get under control. Any idea of the stuff on the labs that would come up on a panel in his situation?I hope he's home for Thanksgiving but all he's getting is a small 2 oz glass of turkey gravy FLAVERED (not even the real deal lol) ice cubes lol. No entire bowl of mashed potatoes, nothing cooked in a deep fryer, no cheeese blocks, no bean soups, or salty junk... pretty mucj just carboard. I can cut it into the shape of a turkey and that migh tbe fun lol. Nah, inhonesty I plan on going into the renal diet reciepe stuff and looking for things I can feel 100% safe and assured with. I also moderation plays a big part. Hey! I'm starting t really getthe understanding to some degree about this whole kidney failure thing and I've "impressed" myself to a degree. Now,... getting someone to follow that's the difficult part. I pray it can be done. Such as turkey. Turkey that ca nbe sliced later for lunchmeat sandwhich. Not store bought lunch meats. Gravy is a liquid and I'm thinking of some safe extra seasonings to help cut down the need for gravy. Is does come in it's own juice right? Doing something with that should help make it more flavorfull. Oh yeah..and DON'T FORGET TO TAKE THE GIZZARD BAGS OUT before cooking lol.  Sily me, I'm just feeling a little playful here. Things will get better and the day no matter what will be spent with family and lots of laughter!

[okarol]

I am dealing with a similar situation with my mom. She is not a dialysis patient but she has diabetes and lymphoma and a bad knee. She got fired from physical therapy because she didn't do her home exercises. She doesn't stick to checking her blood sugar regularly, either lies about it or says it's always the same so she just does the insulin. Now her memory seems to be going. It's hard to help her when she really doesn't want any. But if things continue she won't live very long, or, even worse, she'll have even more health problems to deal with, which may mean she'll have to go to board and care or be hospitalized. I know she is overwhelmed, but she does not want to discuss the health problems.
I feel like we need to accept her situation, and give her the dignity of making her own choices, but the fear we have is that she's going to have a worsening of her quality of life, and a shortened life too. She is 75 years old. She does not want to be told what to do. And I think she also is masking some of her memory loss as she is embarrassed by it. It's very frustrating for my sisters and me.
I wish I had the answers.
For every caregiver: Bless you for all you do. 

[monrein]

I've said it before but I'll say it again....I truly believe this s*** is harder for caregivers (give, give, give) than for carereceivers.   When the "ill" one compounds the mess by refusing to do whatever might help the situation and chooses instead to add to the burden it's beyond crazy-making.  I know, I know all about the psychological factors, the function of denial and blah blah blah but burdensome is burdensome and thoughtless is thoughtless and stupid is stupid.  I truly understand the extreme frustration of the medical people who must deal with this stuff all too regularly but they don't have to sleep with it at night and feel angry yet guilty, caring but yet enslaved.

Texasstyle and all other carers out there who do what you do under this kind of added burden, you deserve better and please care for yourselves at least as much as you do for your partners.  I feel quite sure that I couldn't do what you do, not that I'm proud of that but there it is. 
 

[boswife]

Well Monrein, i think you said that quite well    but REALLY!   I mean, i know i too am a cargiver so not trying to get in on your lovley post,  i could just die with pain and fear the times my hubby just wont listen.I cant emagine that being the case all the time!!!!!  (i have to add ~bless his heart~ that my 'patient' is complient with me most of the time) .. It's can be such battle and so unfair on the patients part, to add add add complications to themselves knowing that their partner is the one that will have the heartfelt burden of fixing it *once again*... It hurts alot     
and so looney, i hope all gets straitend out in the next few, and mabie give you some needed rest in the mean time..   

Ps... not that anyone noticed..lol,,,, but since i've questioned myself since i wrote it, i decided to come back and see *IF* i wrote to Texas or Looney here..lol  (both are going through hard times so thats what happened to my thought pattern  )... Soooooooo, i'll now say Texasstyle, I I hope you too get some needed rest, and that things have worked out a bit now...

[del]

I am so thankful that my husband basically looks after his own diet and watches everything that goes in his mouth!!  I do most of the cooking but always asks what he would like cooked. He does have a much better diet with nocturnal but on the days when he has a night off he will not eat anything high in phos or potassium.  Actually when he has blood work done he is usually told to eat a little more phos and potassium.

TX remember you can do the best you can but it is basically up to him if he is an "idiot" and won't listen to the docs or follow his diet.

[Poppylicious]

7.8? Yikes!  At its worst, Blokey's potassium was 7.2 (but that wasn't due to diet, it was down to the complications he had following his PD catheter removal).  I spent most of my waking hours worrying even more than I usually do those few weeks.  Last night I nagged Blokey because he was eating (lots of) chocolate.  He thinks I'm evil.  Thankfully, he is pretty good with what he puts in his mouth.

 

Huzzah! for hubby calling 911 all on his own ... that in itself was an improvement, and shows how much pain he really must have been in, poor chap. I hope he's feeling better now.

*huggles*

I will even make you a special coffee, with whipped cream!! Perhaps a shot or two of wiskey too might help? 

Please may I have one too ... my day has been pretty pants.

[looneytunes]

RM (and Poppy)...I WANT ONE TOO!     

TS:  Thankfully you still have a sense of humor.  It goes a long ways AND laughter WILL save you from dispair.  I sure feel for you fighting to keep your hubby going while he is fighting to go as fast as he can the other way.   I also get furious inside when my hubby will sit down with his 2nd extra large bowl of ice cream (he's diabetic) knowing he's cutting more time off his lifespan than I can add by anything I do.  But, I've finally learned that there is nothing I can do to change it.  He is going to eat what he wants, when he wants and no amount of nagging on my part is going to stop him.   

Hang in there girl...we are all sending you hugs. 

[texasstyle]

Thanks everyone for the kindess. I really need it! xoxo  Sometime this evenign he should be discharged. The knee was drained of some fluid. Apparently they told him he has some arthritis in theknee and the fall caused the pain because of it. It was sheer agoooony. I was hurting just watching him. Ouch a million times over. Looks like we're wtching our loved ones just destroy ourselves and not being able to do anything is so difficult isin't it? The frustration. Urrgh.. I have decided that I can no longer (once again geez) try to make him do what he I guess really doesn't want to. He was metioning in the hosp. that as soon as he gets out he has to get to the store for things for Thanksgiving. Sweet potatoes was on his  list. I hope to heck he meant for the guests. Dialysis tech called and said they go over this diet thing with him all the time. He builds about 13-16 lbs. of fluid betwee sessions (was recently 16-18) and they've put that amount of fluid worth of IV bags in front of him to show him how much that is. His phospourous is always high and she was telling me how bad that is not only for the bones but the heart too. She explained a little better to me how it works with the Parathyroid and said she'd be happy to meet with me anytime. She said his numbers are so bad that he can't get away with telling "fibs" to them. They know and she stood in front of our refridge she'd probably cry. I will probably cry tonight. And especially on Thanksgiving when I watch him kill himself. Don't you just fell like you want to smack them sometimes? lol. We as caregivers are strong. Mike was telling me how strong he was as he layed in his ER bed. I was like "are you serious?" Look at where you are. I think that's aprt of the problem for anyone in this situation. Human denial. I know we all have a degree of that but I have to wonder what has to happen in order for reality to hit you. I TOOK A NAP IN MY QUIET HOUSE TODAY. YEAH for me! It was short but ah, so refreshing. I needed that because well, I haven't slept in what seems like forever because of worrying all the time. I know you guys feel the worry all the time. Sleep helps our mind make better choices and increases the ability to think more clearly in general. Some of the fogginess went away lol. So I will carry on the way we do. There is too much to do as we as caregivers find a way. Have a great day everyone!

[glitter]

I am thinking of you- and if I could will you strength I would. Your doing a great job TS- you can't walk the walk for him, just clear the path, and you do it well. I am sorry he is breaking your heart, 

[natnnnat]

You are right to step back, a girl can't micro manage something like diet over the long term.  Not without becoming his mother, and / or a major nagging pain in the    A really easy way to make day to day married life completely horrible is fighting over everything he does.  Evidently my bloke isn't as hardcore as yours, and isn't as ill either, thank god.  So its easy for me to say that I try to remind myself that it really is his life, his body, his decisions.  Also however, you are married, his decisions affect you, and you have a voice.  At present my policy is to not reinforce him, for example, he'll say "I'm sure I'll get better" and I will say, "Your symptoms match this list published by govt sources suggesting a dangerous situation, I want to take you to hospital now".  He will say, "I feel great", and I will show him photos of himself which I take every morning, showing his gradual decline.  But he's too big for me to actually make him get in the car.  The question is, when will your husband realise that he really is a major danger to himself?  Is he aware of how much it hurts you to watch?  I am glad you got some sleep, these things make a difference. 
Cancel thanksgiving? 

[del]

Your hubby needs a good kick in the  to wake him up!!  He is killing himself!!  The most you can do is encourage him to eat right but if he doesn't even try you may as well not even bother.  Seems like he is not going to listen to you or the people at the dialysis clinic.  That is a LOT of fluid he is gaining between sessions.  You think that with so many things happening to him he would start to realize that things are getting very bad and he needs to change a few things.    to you for having to put up with al this from him.

[RichardMEL]

oh heavens!

I just did the conversion 13-16lbs = 5.8-7.2kg. If that's what he's putting on in fluid between treatments... holy shit! That's scary. The recommended max is 2kg between treatments (3kg on weekends). I usually keep it between 1.6-1.9kg). The max our unit will take off is 5kg/session, so if he was in our unit he'd never fully take it all off.

Does he practice ANY restraint in his drinking of fluids? Surely he'd have trouble breathing with that much on him!?!!

And yes, the phos/potassium/calcium/PTH mix is difficult to understand, but oh so important. The high phos and maybe high PTH will lead to bone disease, and well.. it's a pity epoman's not around - he'd personally beat the crap out of mike to show him how serious that stuff is.

I think for your own sanity TS you HAVE to step back. It must be like beating your head against a brick wall again and again when he just doesn't seem to listen (yet he's still being "strong"?!).

wow. my mind is literally boggling.

I'm so sorry you're in this - you love this man who is killing himself with his actions... and the most difficult part is that if he just took some care of himself all of this could reasonably be avoided. That's the real tragedy for mine.

I am now officially opening the bar for TS, poppy and any other that needs a special coffee, with extra whipped cream, whiskey or whatever. I do a house specialty: milo with baileys (an ex-gf of mine used to adore it before bed).

lots of hugs of support TS!!! 

[okarol]

You cannot change another person's behavior, but you can change the way you respond to it. The person must want to change and make an effort to do so. If they don't, the same problems will reoccur. It's tragic, because it's someone you love, who you want to keep alive and healthy.  But they are adults, making choices and even if we think they are the worst choices in the world, and they will affect everyone around them, we have to stop trying to fix it. I am pretty much preaching to myself here, and I am determined to back off, go to a movie, call a friend, go for a long walk, meet family for shopping, in other words, enjoy my life, and let the patients in my life do what they want, and live with the consequences. I am going to be cheerful and helpful when asked, but I am not going to get caught up in the daily tug-of-war anymore. Wish me luck? 

[RichardMEL]

karol sounds like you need one of my special coffees too!!!

 

I do agree with your point. I mean we are adults and most of the time we're making informed decisions. I can so relate to those caregivers pulling their metaphoric hair out when their loved ones don't seem to be following the rules they need to follow to do the best they can for themselves. It's a hard line I'm sure. I can see that pushing them to do "the right thing"(or what we think it is) could just push them even further away - I mean who wants to be hassled all the time on top of everything else - even though you mean it with love and devotion.

Good luck Carol, nat & TS - it can't be easy.. I sit here reading about what Mike does to himself and *I* just want to shake the guy and give him a dose of reality(like he hasn't had enough of THAT you'd think!)... I can't imagine what TS is feeling.

Well this is one reason IHD is here - for you to vent your frustrations, fears and even successes!!!

 

[okarol]

oooh you had me at coffee