hateful words

[andrea_c]

This has not been a  great pass weeks.  My husband is a dialysis patient and seems to be suffering from bloating which cause his stomach to bloat and inhibits his breathing.  Plus he has a nasty cough all winter.  I keep imploring for him to stop minimizing his symptoms when he visits his doctors.  He cant sleep, and keeps me awake.  I am sleep deprived, depressed and irritable and can think of nothing else but escaping. I dont have the luxury to sleep it off the next day, I need to get up and go to work ( I teach children)Our conversations are always dialysis based.  Just awhile ago he told me that I dont care for him.  I dont do anything for him.  I got angry.  He asked me if I was stressed from work and I told him I was stressed from having to deal with his constant health issues here at home.  He said to me if he was to die today I would be the last person to know.  Some thanks I get for being concerned, listening to endless health talk, and trying to contact his doctors to alert them to his strange symptoms. Some thanks for the endless emergency room visits.. Seems like my kindof caring is just not good enough for him.  I really just want to go away now. I am not a martyr, I have needs of my own which he cant meet. I dont blame him for being sick, but can I be heard too?

[Adam_W]

I think you have every right to be upset about the situation. I have gotten into many arguments with my parents, who are my "caregivers". They have commented about my constant dialysis related talk, and I have accused them of not caring or trying to understand (even though logically I know they do). I know that we can be difficult to be around sometimes. I know that being a caregiver for one of us can be very stressful and hard, and you guys have to vent and get mad just like we do. I don't envy what you have to deal with, just like I'm sure you don't envy what us patients have to deal with. So yes, you have the right to be frustrated, and you have the right to have your voice heard as well. I will add both you and your husband to my thoughts and prayers. Take care.

Adam

[andrea_c]

ty Adam

[Sara]

You have a right to feel the way you do, and I can definitely relate.  One thing I have found a little helpful was to take a breather from being the "caregiver."  Unless he's in a severe health crisis or something, take a few days.  I found out by accident that his world will go on if you are not there to tell him what to do every step.  I was very self-involved for a little while following the death of my friend, and Joe did just fine.  I would recommend just being hands off for a few days at least, pamper yourself in some way, try to get him involved in conversations about movies, the weather, anything except dialysis.  Go on a date with him out to dinner and a movie.  Good luck.   

[Hephs-little-lady]

I completely agree with Sara. You need a break. Last year it got so bad here with Heph & I that I actually went to stay with my Mum for a week to give us both a break and it really worked. I know not everyone has the luxury of being able to actually leave but even just getting out and going for a walk or swim or to lunch with a friend. You need you time, where you are not the carer.

Bless you, you are in my thoughts and prayers.

H-L-L

 

[andrea_c]

It's just so hard when I feel like i need  Little TLC too.  I fel like I am his mother and that I don't deserve to complain because after all this is his illness. If I do then I am the bad guy. Depressed

[Hawkeye]

As they say it always gets worse before it gets better.  If you truly love each other you will work through this.  It will be tough for a while though.  If you have the ability take a few days off for yourself, or hang out with friends.  You need that mental break away to recollect yourself.  If you can't get away at least try and have non health related conversations when ever possible, and if he can get him out of the house for a while.  If he has been trapped inside except for to go to the doctors and dialysis he may be going stir crazy kinda like it sounds you are.  Good luck, and I hope things get better soon.

[Sluff]

You need time to yourself occasionally, and there are times when a caretaker can enable someone to act helpless. Turn over some of the responsibilities to him. I think a good start would be for him to pick up the phone and schedule his own appointments. Write them on a calendar and guess what if the date has another appointment on it, pick another date. How hard can that be? It may not be much but you kill two birds with one stone. 1. Relief for you 2. Keeps him more involved with his own care plus it keeps his mind busy.

Just my 

[Ladyhawk]

It's important to take some time for yourself.  I am in the same situation. Not only is my hubby sick, we also take his mother to dialyisis too. They go together 3x a week.
I also take care of all appointments, work, kids, the house etc.  We have been through cancer, and many other illinesses.  I decided to just take one day at a time and realize we are not given more then we can handle.  I take the dog for a walk just to take a breather and get myself  together or take a cry. I know he does appreciate all you do for him, its hard being ill all the time too. If you ever feel the need to chat or yell at someone just e-mail me! My hubby is only 45 and hasn't been able to work in a year and a half.  He just started an airplane hobby which keeps him busy when he feels up to it.
Take care,
I'll keep you and your hubby in my thoughts!

[nextnoel]

He just started an airplane hobby which keeps him busy when he feels up to it.

Maybe breathing that airplane glue helps, too!

[kitkatz]

My hubby and I take car eof each other.  However he does all of his own appointments by phone, and I take care of my own.  We go to each other's appointments as we can depending on work schedules.  A few things for you to try:

*go get a pedicure and manicure.
*go get a shampoo and hair style
*go window shopping while he is at dialysis.
*go see a silly movie or rent one.
*find a hobby you can talk to him about.
*Get him involved in a hobby. The airplane glue was a great idea!

[andrea_c]

ty all.  I have been trying to take time to myself, of course that is always an issue with him when I am  not available to him.  Though he is getting better at letting me out of his sight.  I really just want to rent a hotel room by myself for a couple of days just to be away.  Sounds selfish though.

[goofynina]

Thank you for starting this thread Andrea, it made me stop and look at my hubby's view of things,  I too, may be guilty of putting too much on him, but i do tell him to go play golf and do stuff without me,  but i will be more aware of not only what i ask of him but how i ask it as well.  I hope you are finding time for yourself as well, and i remember, absence makes the heart grow fonder, so if you have a friend that is out of town, just go for a day or two, i am sure you will both appreciate each other more once you have returned.     just my   

[RichardMEL]

I am very unhappy because I wrote a big long post last night in this thread and it seems to have been nuked *pout* I was quite proud of it.

Anyway I shall try to recover my points from last night.

First of all...

*hugs* offered

Second...

You deserve as much TLC as hubby... and indeed he is pushing you away - the person who loves him the most - with his hurtful words.

I am almost certain that he does not MEAN what he says when he says you don't care, and wouldn't notice if he died etc.. it is the frustration and helplessness of his situation talking - not that it helps you much when you bear the brunt of it and have to face this day in and day out on top of your busy job.

All I can suggest is that you try and sit down with hubby and explain that as much as he feels helpless and frustrated and angry with his situation - you ALSO feel helpless and frustrated.. You love him dearly but can only do so much.. and you do as MUCH as you can... You can't click your fingers and make it go away or fix it up, but you try to support him as much as you can, and as much as he needs your understanding and sympathy - YOU also need the same respect from him in return.

The other thing I would definitely suggest is to be able to organise a break from caring for him. Perhaps a family member or someone can step in, or your local hospital/unit's social worker could perhaps organise something to help - to give you some time to recharge and some downtime. That doesn't mean you are or want to desert him, but that you just need some time out because you are human.

I am not sure what else to say - all my witty comments were put in last night and lost However you have thoughts and support of everyone reading here, I'm sure.

take care...

[andrea_c]

I am thanking you all for your words of encouragement.  You can't imagine ow horrible I am felling right now, so much so that I could not even make it out to work today. I feel beat down. I do try talking to  him but emotions are running high right now and it erupted into an argument.  I am not sure what is wrong with him, but he is unable to lie down and rest at night because he says he is congested, so he sits up all night.  He does not have a cold and says the bloating inhis stomach causes constriction onhis chest.  He feels I am over reacting. I am going to call his social worker at the dialysis center because I feel something is not quite right.  I have called his general physician and gastroenterologist and they suggested that if he continues to feel bad to go to the emergency room.  He says there is nothing wrong but a little congestion.  In any case, I am going to try to  just chill out today as my body feels beat up.  Thanks again everyone. Your encouragements are greatly appreciated.

[RichardMEL]

It seems to me there's a little more going on than "a little congestion" and he is clearly very uncomfortable (as we all would be sitting up all night etc). I think the social worker is a good idea but I also think taking him in to get checked out more would be a good idea.. and as for you "overreacting" - so caring about someone you love and wanting them to be as well as possible is an overraction? he shouldn't take it out on you.

I am sorry things ended up in an argument when you talked to him. Some timeout for both of you might be the best idea ...

[carolyn77531]

i have no idea what its like for a spouse being a caregiver, i have a daughter who I'm a caregiver....i thought i was the only one who had these feelings..its hard to deal with them sometimes..i have read something on the the net about caregivers...caregivers.com we go thru alote of emotions..the problem i have...i have a wonderful bf..i personally think he doesn't understand about kidney disease, or dialysis.i try to talk about my feelings..he doesn't understand..he takes it personally.when we first lived together...Jessica wasn't sick...about a month she went thru rejection,then dialysis......he made promises that hasn't kept..like learn that machine so he can hook up Jessica so i can work or just to take a break from it...thats why i quit my job...don't have any support...he seems like he working more..like hes running.i know this isn't his child...i feel like I'm losing it...i need him...but, he cant or wont handle the situation...i know i sound selfish....he seems like he getting harder and harsh with Jessica.....he gets so frustrated about her not eating...i sit down ever night pleading with her to eat...shes not doing good right
now...she losing weight again, her labs came back horrible...had problems with the machine all last  week....so, it has been the 3rd time that i had to trade off the Baxter

[Sluff]

Hang on tight carolyn. Things will get better.

[andrea_c]

"taking him in for  a checkup" he just tells me that he is a big boy and can mange himself

[RichardMEL]

Andrea, I feel like I am butting in way too much in this thread, so please forgive me.. but it sure doesn't SOUND like he's "managing" himself too well - by that I don't mean physically so much but clearly it's very difficult for him and in turn he's taking it out on you (and perhaps others) who care about him.

This must be such a difficult situation for you to be in. maybe your best option at this point is to try and organise some sort of a break for yourself....

I sincerely hope things improve for you both soon.

[goofynina]

Andrea, I feel like I am butting in way too much in this thread, so please forgive me.. but it sure doesn't SOUND like he's "managing" himself too well - by that I don't mean physically so much but clearly it's very difficult for him and in turn he's taking it out on you (and perhaps others) who care about him.This must be such a difficult situation for you to be in. maybe your best option at this point is to try and organise some sort of a break for yourself....
I sincerely hope things improve for you both soon.

I totally agree with RichardMel with this,  you do deserve to take that step out of reality and do a little something for yourself.  He will get over any anger or any resentment he has for you doing this (if any) but in the long run, it would be beneficial for YOU every way you look at it.  Take Care and Good Luck... 

[George Jung]

Also, what is good for you is good for him.  How can you do the things you need to when you are well below 100% physically and mentally.

[andrea_c]

Than you all again for helping me through this difficult time.  I  got through this week and it is really a one day at a timet thing.

[Sluff]

One foot in front of the other, < move slowly> I'm glad you made it through the week so far. Keep moving forward.

[nextnoel]

Than you all again for helping me through this difficult time.  I  got through this week and it is really a one day at a timet thing.

Sometimes half a day at a time is plenty!