hateful words

[Razman]

I know one thing, if anything happens to my husband, I will go nuts........

I remember when I was first told that I was in stage 4 and it was a shock.  I felt OK and thought that I would live forever.  Give it some time, things will start to settle down and stay in touch with all the members of this forum .  They have been through it and it is no fun but you will see that life does go on.

[tamara]

The problem with my husband is that he has a problem with being an inpatient in the hospital......he almost didn't go in for the kidney biopsy since that requited an overnight stay but lucky for me, he changed his mind at last minute and he ended up getting a private room which we didn't ask for nor expected.......he knows he won't always get that and God forbid he has to go in for kidney related issues, he may not cooperate and go in and that is my biggest fear which puts me in major depression........

I know one thing, if anything happens to my husband, I will go nuts........

I had problems with hospitals, doctors. My Mum died a couple of years before I got sick. She had a form of leukeamia and also lupus, and was in and out of hospital for about 5 years with

the last six months of her life being in hospital. I was very stubborn at the start of my illness, and being in the words of the medical profession "non-compliant". We have to get

over our fear, there are no options. And for me it did take time, I stopped myself going on to dialysis for a very long time, when looking back I probably should have been on it a lot earlier than what I was.

So be there for him, and support him all you can, but also there are alot of things he will need to work out as an individual, with kidney disease comes a lot of life changing issues.






fear of hospitals and sometimes it just takes time after all where else can we get help for what we have.

[keefer51]

I do not have a caregiver. Nor do i want one. The first time i was on dialysis my wife divorced me yes she did tell me it was because i got sick and interupted our lives. I never talked about it with her i just took care of myself. I came and went to dialysis by myself. She used to get so freaking mad when she would see me after dialysis that she would curse me out about it. I would wait out side my house and watch for our bedroom light to go off then i would go into my house. One time a week after the transplant i got a very high fever 103 she got so mad she jumped out of bed and said "Bud, [she never called me keith] i am so tired of this shit. I then asked her to call next door and he carried me down to the car. Once in the hospital she changed cause people were around. The more i see what happenes to a person on dialysis the more i see why she left me. Some people will push their caregiver away because they feel they are putting too much on them. When the person on dialysis is a man the pride will become his down fall.

[Sara]

keefer, what happened to you on dialysis is no reason or excuse for her to treat you the way she did. 

[keefer51]

Thank you Sara. The scarest thing i found out was what i assumed was going on WAS going on. I thought i was living in a lifetime movie. When she told me this was at a very vulnerable time in her life. She had left her new husband because of his daughter. I was able to have my kids for a few weeks because she wasn't living at home. She was on the phone crying and telling me how much she loved this guy. We were divorced for about 5 or 6 years at this point. I said "Look Wendy you have got to try and pull yourself together. The kids are very worried and i can't lie to them anymore." She claimed to not have a place to stay and was staying with some couple she new and felt out of place. I told her i only had a little money but was willing to put her up in a motel for around a week. She stared to sob and said you would do that for me after what i did to you? I said yes wendy i am not like you. You are the mother of my children. They need you. It was then she spilled her heart out about my illness. No matter how much guilt or anger or whatever she felt i would never do that to her ONLY because she is the mother to my children.

[tweetykiss]

He gets on my last nerve at times like last night and this morning......at dinner he said he didn't want to do the bronchoscopy and that is not even an overnight stay in the hospital but all because they won't put him to sleep he thinks it will make stir crazy when they keep saying they do give something to calm the nerves........I also have to add he has not been the same since his accident in 2002 and much of that is because he cannot work so now his pride is gone to shreds among many other things and then he tends to have this negativity.........I finally talked him into it and I keep telling him he has to be compliant if he wants to heal......I mean the doctors keep saying keep the appointments....now next Friday he is scheduled to see the rheumatologist which I just found out yesterday and I already have an appointment for that day which was scheduled months ago and now I have to change that which I don't have a problem with........

He keeps saying he loves me which I know already and he tells me how much he appreciated me and I keep telling him all I want back in return is for him to be compliant.....he has to work with the doctors like I am.......and these are his doctors.........now how much time I miss off work when I take him to appointments and sometimes I can make it up but not always.....I haven't even been there long enough for sick pay and personal days.......I am just thankful that my boss once was a caregiver to many in his family or I would have been fired by now.......

Then this morning, he is depressed....I have to go run an errand and I tell him to come with me just to get out of the house and he says no....WTF........I then let him have it and so he decided to come.......I mean I don't mind looking after him even it has means I change my own lifestyle but he can only help himself as far as dealing with his depression and other feelings of trying to be positive.......I make it a point not to even talk about dials or his disease with him since we have to have a life......

Am I being selfish...sorry if I complained.........

[okarol]

I know this about myself: I am a great nurse... for about 3 days.
After that it's some good days, some bad days. I wish I was more patient, stronger, more willing, calmer, more cheerful, and less opinionated.
But I am who am I and I do my best. My husband (3 back surgeries, hip replacement, no relief to chronic pain) would like a lot more caretaking, but I try to make him rely on himself. A few years ago we went to a pain management program at the Mayo Clinic in MN. The counselor for the family group told us "Have expectations of the patient. Encourage them to do for themselves. You take away their dignity by doing everything for them like a child. They will begin to doubt their worth to the family if you diminish their role as a parent and partner." At first I thought this was cruel, weren't these patients suffering enough? But as the weeks went by at the Mayo I could see how it made sense. But it's hard, because when someone is sick, and they are just feeling like giving up, you don't want to make them do things. One day a woman came into the family, wearing a big smile, and said "My husband put his own socks on today!" She told us it had been 9 years that she had done it for him. She was so happy, because she could see how proud her husband was of achieving this goal. The key is to be realistic about what they can do. When it came to Jenna it was harder for me to let her struggle. She was 18 when she started dialysis, a child in my eyes. And she was so tired all the time. I am so grateful that she got a transplant, because she is already branching out, trying new things, beginning her life. I don't know how the caretaking would have gone if there wasn't that option. I guess at some point I would have had to toughen up, let her make her own way, but after 3 years of dialysis, I still couldn't.

[keefer51]

I like to read the posts in this section. They have all helped me in so many ways. I don't know how you all do it. I admire you and hope and pray that you all find a little peace in your situation. I think in allot of cases when a man is involved and becomes ill with a chronic illness he becomes helpless and angry. He will take out every little thing on his spouse. Most of the time they are stupid things. I know i would sit after a fight with my spouse and kick my self for taking it out on her. In todays world with separation and divorce so prevalent we may feel that you will properly leave when the chips are down. Men sometimes forget there vows. Having renal failure and being on dialysis is a strain on any relationship. We become insecure. I can just hear them say to themselves "Well she won't love me anymore. I am not whole. She will leave me. The paranoia is overwhelming. In many cases i think the caregiver can be pushed away so far there is nothing left for them or her. The guilt is another thing i think that needs to be addressed. Try your hardest not to be guilty. It's not your fault. You had nothing to do with his renal failure. I would if you could get away for a day and do something for yourself. I myself am alone. I have chosen this because i just don't want to put this on anybody. It wouldn't be fair to them or me. I wish i could give you some sound advice. All i can do is applaud you for your perseverance.

[andrea_c]

thank you

[maisha_r]

I was reading these posts,  and feeling mixed emotions.  I have found myself talking to much about dialysis, but when my mother, sister, etc calls me and asks "how are  you doing" If i lie and say "oh great" they would know my voice sounds the other way around.  I feel frustrated, many times hopeless and I obviously know I am not the only one in this world feeling this and more....My 69 years old father helps me to much, I feel in extreme tired, he would go to the store to bring groceries, so lot of cleaning in this that is not my house.  I heard him talking to a friend on the phone,  I know he is leaving to other state soon,  I know I could not keep him by me forever because he needs to work for himself and I cannot even offer  him house and food,  I live with my dissability check and we all know how much is that ...when i heard my ex husband telling me as yesterday "come to see this condo.  is cheap just about 100,000 I sell my house and help you out to pay the downpayment,, then you work a part time to pay what is needed"  I just think to myself how to do all that when I have not done it before and when I was not as sick as now?  How could I get even a bit energy to work even for some cash when I feel tired even when i sit here front of pc? Besides all that I do adore my dogs, I have been rescuing stray and rejected ones.  The ones I have are just like my own kids.  I cannot see my life without them,  I would say the most that is causing me depression is to think where my little ones would end up if mom is not around... My family think I am strong and I try to keep a smile on my face, but inside me is something else.  I do understand the ones that take care of loved ones as the ones on my side.  This is life, we get what are meant to get and could not change it.  I do applaud all of you reading this post and taking care of our illness and I do also embrace my brothers and sisters in illness, because we did not decide to bare this condition, it does change our life 100% and not necesary for better...