I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: tee on September 17, 2011, 04:36:16 PM
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I just do not know what to do anymore, and I almost feel like leaving my own house. My fiance of 25 years, is on Dialysis, and really hates to go, and does not think he needs it. A few months ago, he had a blister on his foot, which turned into this major infection, and they had to remove his pinky toe, and part of the bone on the side of his foot. The next toe has turned black, but it has not spread any further. About two weeks ago, it was determined their was still infection in his foot, so they put him back in the hospital. He had been laying down for a few days, so his lungs filled with fluid, and caused him to go into cardiac arrest, they also stated he had a mild heart attack. He was in the hospital for eight days, and they did several teatments of Dialysis, and gave him IV antibiotics. He also developed a bedsore on his butt. So they discharged him about a week and 1/2 ago, and Dialysis was going to administer his antibiotics, he went last Sat, and has not went back again, he states he cannot sit for all that time due to the sore on his butt. I just do not know what to do anymore, no matter what I tell him, he feels he can wait until his sore heals. I really think he has lost his mind. I told to several of the doctors and nurses, but they do not do anything about it. I don't think he wants to die, but he thinks he will be ok. Does anyone have any suggestions? Please keep in mind he has white coat syndrome, and tries to stay away from the doctors.
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How long has he been doing dialysis? If he is not going, he needs to know of the consequences if he does not go. Tell him that you can not help him if he does not help himself. Diabeties is what caused his kidneys to fail? Now if so I would tell him he has lost alot from diabeties and now has lost his kidneys what more is he willing to lose?
He is so young, and it can be especially hard for them to face the reality of death, but Tee, he will face it and soon, if he does not do something about it.
I wish I could help you more! Just sit him down and tell him of your fears and what concerns you. Can you talk with him about it? If you are planning of marriage anytime soon, I would post pone it and work hard on getting him to doing what he needs to do. I know you may love him and there is nothing wrong with that, but you both have more important issues you need to see to first. A piece of paper or certificate is not going to change your love for each other, IT CAN WAIT. Besides he is going through alot of mental & physical uncertainty right now! He need some counceling or Professional help with this.
Be there for him, but be real with him too! Let him know that you are not going to sit there and watch him die due to his lack of concern for himself, and quite frankly, you too!
Tee, please keep us updated. We are here for you, and will help with whatever you need. Maybe if he read some of these posts on IHD. He might see what he is really up against and the effects of it is doing to you too! People on this site are very supportative and they truly understand from experience.
Will be praying for you and him. Please keep us informed!
lmunchkin :kickstart;
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OMG! This is allmost exactly how my life goes too! In fact, I was ready to post a new topic about being so tired of it all. The foot, mine stepped on a nail and wouldn't tell a nurse, and almost had his foot amputated. A week and a half of not saying anything, having a high fever (letting the unit think he had a "bug" maybe) lead to his foot turning purple and the infection ate into the bottom of his foot. He was on the verge of turning septic. They had to stabilize him in ER and did 2 immediate surguries just to start off with. 3 months in a wheel chair blah, blah, blah. Would've been prevented by getting an antibiotic or what ever the night he steppedon the nail. Not eating right lead to such bad fluid build up his lings collapsed and his heart muscle exploded. Peri cardial Tamponade it's called. He is lucky to be alive. Another Potassium issue of going into muscle paralysis and not getting help lead him to collapse on the floor and "code twice". My husband gets mean with me when he gets like this. It's tiring, it's ridicules at times, and sometimes I feellike my life revolves around his anymore. Yes, we are here for you. And although we each experience the way dialysis effects the one we're taking care of no matter how hard or easy it is, as caregivers I think we all feel the same emotional toll. We just eachhave a different story that leads up to out getting so frustrated. Sometimes we "group talk" lol about running away to an island or something lol. Hang in there. let it all out, vent it, do what you need to do.
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TS, I can definately relate to your situation! Been there over & over & over ....ect. The only thing is that my husband does not get mean with me, thank God! That does add a pressure that you definately have to deal with, Bless your heart! But my husband has been in and out of hospital with infections of his toes, feet and leg. He ended up with all toes on left foot amptated (nub)and amputation to right leg below the knee! It adds an extra job to the caregiver. They just can't get up and walk without you there.
When I work all day, I tell my husband to please use wheelchair when Im not home. Then when Im around and he can fit his prosthetic on, he will walk around with walker. Yes he can walk, but with walker only. He walks to church with it and it has been a God send. But he is so depressed when Im not with him. When I come home from work, he brightens up like a kid in a candy store! I literally hate to leave him, but welcome the peace away from him too. Is that wrong for me to say, No I don't think so. I love to work, always have. I love my husband, love to take care of him and I love my job and love my customers! But I do get tired of all the "unknowns", and lately, have not had any problems in over a year and a half. But constantly waiting for the other "ball" to drop.
Nobody is saying its easy, that is for sure!
lmunchkin
:kickstart;
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Oh Tee, it's so hard to sit by and watch someone you love sabotage themselves. Like TS and Munch say, being a care partner is a hard road. But being the patient is not where I'd want to be either. So, in my case, I have learned to tell him the consequences of what he is doing and if he continues, I just get ready for another ride to the hospital. Literally pack a bag and put it by the door. The bottom line is that what my hubby does is his decision and as long as I know he understands the potential impact, there is not much more I can do.
Most of us care partners have been (and still are) where you are. It's heartbreaking. But, hopefully this episode will pass and there will be more good times for you two. Come here to vent, it's a safe place....We all understand. I'll be keeping you in my prayers. :grouphug;
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its a terrably hard place for us to be when they are good OR bad with their help in their health...... Seems we've all 'been there' at least in part. With good dialysis, the 'mean' part should subside. And weather we "understand" that its toxins or not, it still hits hard and wears you down. Yes, either side of this is hard, and i wish you well and hope you find some comfort here.. We too have been on a beautiful 'mostly' upswing. always knowing the next round may be just around the corner keeps us grateful for the *now* and on our toes all the time for whats to come. :( Sending :grouphug; and prayers for all that the 'peace' part of this brings strength with it...
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Tee it is so hard being a carer, all you can do is explain the facts to them, help them through what ever they are going through, at the end of the day it is their lives. We are going through a good patch at the moment (fingers crossed) don't know how long this will last. I would hate to be the patient, I would hate to be thinking what they must think about this disease.All you can do is be there for them.