how i feel...

[glitter]

..I want to do whatever it takes to help him....and sometimes I can't help him at all.Alot of the time actually.
I can keep him dry and safe,and drive him where he needs to go and give him his meds and cook the right foods......and no matter how hard I try to make him comfortable...most of the time he feels so sick...this is our second batch of DR's.,now even they are starting to pass the buck-'it aint dialysis see the GP'-'-its dialysis see the neph.''maybe he should see a gastro''gastro passes him back to gp' he has had every test,they have scoped him from one end to the other.....still he hiccups for days,pukes at least 5 times a week,and just generally feels tired and weak and now more and more depressed.....me too....his labs are great,his blood pressure is stable,is anyone else here living day to day between dialysis sick all the time?

[Shirleys daughter]

Hi!
I know how your feel!  My mother is dialyzed 4 times a week, and in between, she is exhausted, weak, lethargic, sometimes hungry, mostly has no appetite, and always thirsty.  She literally sits in her chair all day and sleeps or watches TV.
She is withering away to nothing, and is in total denial about her condition.  She keeps talking about all the things she is going to do when she "gets better".
My mother is suffering terribly on a daily basis, and there is nothing I can do for her!  How pathetic is that!
I will pray for you!
Lisa
Shirley's Daughter

[Sara]

I know how you feel.  Joe has been miserable lately.   

[Bajanne]

You guys do have a lot to deal with when your loved ones are dealing with renal failure.  All I can do is to encourage you all to keep on keeping on.

[RichardMEL]

Gee this is a tough one.. specially when I think about it from my perspective of being "the patient" and suffering along with all the others. Sometimes I feel so crappy and sick in my stomach etc and wonder why I bother etc... but then I think about the people around me, family and the like, who DO care...

The point is that even though you feel helpless, the support you give, and knowing you are there and DO care means a lot to your loved one who is suffering. And trust me, doing "little" things like cooking the food, driving etc... they might seem like not much but they are extra things off our mind that do help.

As you already know all you really can do is hang in there and keep doing what you CAN do to supoort, which may wind up being a simple, but as powerfully needed, as "being there."

[Joe Paul]

Having those around you that care is the bestest thing there can be.     

[glitter]

I wanted to give an update..my husband is doing alot better.The last two weeks he has even been driving,and attempting some household tasks.His spirits are also much improved! I don't really know how,but its like he has finally turned the corner,and he feels so much better-he has stopped getting sick-he still has a bit of nausea,and he is now struggling to not drink too much,but overall he is feeling great!

[Sluff]

Thats fantastic news glitter I hope things continue to improve.

[andrea_c]

It's not easy. I am in your shoes,,in fact look at my posts under tired and depressed. Just last Friday I went out with the girls. Wow, did I feel better getting out and forgetting my problems for a minute.  Did I feel guilt leaving him at home ..it was a dialysis day too? Yes, a bit, but I had to do it for me to sort of pump me up and realize that there is life other than dealing with dialysis.  He said I looked better after I came home.  It also made me able to respond to him with out animosity or tiredness.  Hope that helps.  Man this is hard!

[glitter]

yeah...I was just feeling down that day...my husbands health is so much better now...when I want to get away from it all ,my sister

 and I go out for an ethnic lunch,(hawian,greek,mexican,chinese etc.) then we go to Barnes and Nobles and browse all afternoon!!
 

[KICKSTART]

Please dont hate me for giving my point of view but ...i wonder how easy it is for the people you care for to become just a little too dependant on you to do everything for them , i can totally understand if it is children , but mebbe the adults could possibly take some of the strain off you ? I do dialysis , have my bad days , but live on my own so dont have the luxury of a carer, if i feel rough ..its tough ..no-one is going to come and help me out and look after me. You have to remember YOU are a person , you will be tired , you need some space, you need to pamper yourself and take time out .. i just find it hard to believe that the people you are caring for could not be a little more independant, how would they cope if they didnt have you? Most of all , dont feel GUILTY , your not a saint , your human !
A typical example of what i mean is while sitting in the unit waiting to see the doc ,another male patient was called through before me , followed quickly by his wife saying.."oh i had better come as well, i need to know what the doctor says because i'm the one that sorts out all his medication, fluids, dialysis etc , and this guy looked fairly ok , in his 40's and certainly not retarded, i mean how would he cope if she wasnt there? Like i say sometimes its just so easy to sit back and let everyone do everything for you .

[glitter]

A typical example of what i mean is while sitting in the unit waiting to see the doc ,another male patient was called through before me , followed quickly by his wife saying.."oh i had better come as well, i need to know what the doctor says because i'm the one that sorts out all his medication, fluids, dialysis etc , and this guy looked fairly ok , in his 40's and certainly not retarded, i mean how would he cope if she wasnt there? Like i say sometimes its just so easy to sit back and let everyone do everything for you .

well I suppose it could seem like that to you-but you may not know all the individual facts-we are in our 40's too,and I do not know what he would have done without my help when he was so ill.

 Some people are dealing with alot more issues then just dialysis.

http://ihatedialysis.com/forum/index.php?topic=2074.msg30521#msg30521

[KICKSTART]

Glitter .. i am not having a go at you ..please dont think that , i am just saying it is so easy to take a back seat and let people do things for you , i havent exactly had it easy either or any support from anywhere , but i have had to struggle through, while also going through some MAJOR issues in my life. I am just saying you are entitled to some sort of life other than carer( and yes i am in my 40's as well)

[jasperkat]

Kickstart I understand what you are saying.  I actually feel I make my husband dependent by doing everything for him.  I just can't stop doing it.  I reach the point where I believe he can't take care of himself.  So I take a step back and take a few days off or go out for the evening.  
Actually, this is dialysis day and I plan to meet a friend for a charity auction - after I fix his dinner!  There I go again - Of course he couldn't cook before he went into dialysis either.  Anyway Glitter I know how you feel too.

[KICKSTART]

jasperkat..thanks for understanding what i am getting at , good for you for taking a step back . I guess some of the care side comes from feeling guilty if you dont , (because you are still able to do things,) so if you take time out that guilt thing kicks in , why should you be enjoying yourself when someone you love is so ill..mebbe im wrong , But i think you all do a wonderfull job , but really need time for yourselves, to recharge your batteries if nothing else.

[glitter]

actually I do understand-and I do agree that some people can do more then they do-and don't -because someone else is making it easy to be dependant. I was just reminding you that what you see in a Dr. office may not be all the facts.

A typical example of what i mean is while sitting in the unit waiting to see the doc ,another male patient was called through before me , followed quickly by his wife saying.."oh i had better come as well, i need to know what the doctor says because i'm the one that sorts out all his medication, fluids, dialysis etc , and this guy looked fairly ok , in his 40's and certainly not retarded, i mean how would he cope if she wasnt there? Like i say sometimes its just so easy to sit back and let everyone do everything for you .

and he could be a hard-boiled weenie who makes his wife do all those things to keep him happy.
 My husband has tried to have a go at that too!

[Ladyhawk]

Hi!
I know how  you feel! My husband is the same way, tired,vomiting,and feels bad most of the time. I wish there was something I could do also. He was scheduled for a transplant the 22nd of this month. I was gooing to donate. He needs an O, I am an A. They were going to do a process to his immune system to get rid of all the A antibodies. We just found out that he has an enlarged heart and a leaky valve, which need to be cared for before they do anything. He had an angiagram three weeks ago and that doctor told us there was nothing to worry about. The transplant team said we have to have this taken care of. Who do you belive? Now he is more depressed than ususal. Just one day at a time, thats all you can do.

[Sluff]

Ladyhawk,

Although a valve replacement sounds serious they have been doing them for awhile now. My father had the aortic valve replaced at the same time as a triple bypass. This was his second heart surgery, he came out of it wonderfully. Try not to worry, if it means the possibility of a transplant I would go for it. Check with his transplant team and ask them if he has the surgery to correct the valve is there anything that will keep him off the transplant list. The reason I say this is because there are several types of materials you can choose for the new valve. i think the metal one will keep him from having future surgeries. Thats what they told my father.

My fathers valve outlasted him. 14 years and he passed from lung cancer and that valve was still like when they put it in.

One of the main rules to follow  ASK QUESTIONS!!