Needing to talk - Kidney Disorders Message Board

Franksshow · 08-08-2009, 06:00 PM

Hey everyone,
Just needed to talk or write out some feelings. My hubby 75 chronic renal failure does not want Dialysis and refuses any help till his VA appointment-

Tonight is a bad night-He is feeling so lousy right now-Has been a couple days but tonight is the aorst-Part of me feels like this may be it-he has begun the urmic frost on his skin-I have done so much reserch-His skin is ashen grey and has been for days now-Nails look pale at times and blue at other times-And his arms get to be so cold at times-Death cold-He does not want to know what I have found on my reserch and he has made the comment that he is dying and hopes to stay well till his appointment and feels nothing will happen at the appointment tho. Are we ever really prepared for the death of a loved one? At times I am ready at other times I pray he will hold on-but he has no life-it stopped being quality july1st 2009. We had to cancel so many trips-And doing anything at this point is impossable-He sleeps and watches tv. And as for eating-very little cause he fills up very fast-Today consisted of a egg bisquet and a hlf a sandwich. I know he has become dehydrated as well cause he barley drinks anything-I would say 1 cup of coffee and 4 ounces of water and 6 ounces of milk-Yesterday he had nothing to drimk- I try to get him to drink but I am at the point that I feel as tho I have tried everything-He is in need of emergancy help but refuses and has a DNR,Si I sit nd cry and wait.
Karen

deedee1313 · 08-08-2009, 08:53 PM

I understand what you are going through.To begin with the less liquids the better.When the kidneys aren't working there is nothing to get rid of the fluid.You are probably right that he needs a little more but you can literally drown in your own fluids if you get too much while in kidney failure.My husband went through 2 years of dialysis.His life ceased to be.He would go to dialysis 3 times a week for 4 hours at a time.He would come home and sleep for hours and then watch tv most of the night.We no longer went anywhere or did anything fun.He had a lot of other health issues.He was a double amputee and was blind in one eye.Many nights I would watch him thinking that he wouldn't wake up in the morn.When in renal failure there is a very strict diet that you are supposed to follow.I stopped following it and let him have whatever he wanted.He was miserable most of the time and it was the hardest thing I have ever done to watch him go through it.He was 53 when he died and all though at the time I would have given anything to keep him here I know that he is in a much better place now.Nobody can understand what it is really like till you have to watch someone you love that used to be so strong slowly slip away from you.My husband has been gone for 3 years now and it seems like yesterday when I read these boards and find someone else who is going through the same things that I did.Try to be strong for him now and know that you are in my prayers.

Cora1003 · 08-09-2009, 05:01 AM

Karen,

I'm sorry there isn't much I can do to help, but I can listen. Unfortunately, dialysis will make him feel better but he doesn't seem willing. I know a number of 80 year olds on dialysis who are doing quite well. It does vary from person to person. I'm sure that if the docs office was called, an emergency appointment could be had, but again, he has to be willing to go. I can empathize with how worried you are. My Mom was as worried about me when I wasn't eating and drinking.

Please keep us posted and vent when you need to. We will be here for you.

angieskidney · 08-11-2009, 12:28 AM

It sounds like Dee Dee has a good point. If it is his time to go he may already know it and just wants to be happy. We can try all we want to keep him here but if he is going down hill and not having the quality of life he wants, then it is up to him if he decides that time is now to be at peace. I hope that is not how it will go for your sake as Dee Dee knows how much that hurts.

You can only do as much as you can do but you might want to talk to him and ask if he knows what will happen if he doesn't do dialysis. Is he prepared for that? What ever choice he has made. Knowing where he stands on that and why he is doing what he is doing may help you know where you stand in the role of things. If you are to make him go to dialysis to feel better .. or if you are to keep him home and make his last days a very happy one as possible.

I really don't know what is in his head but I do understand that dialysis is only a prolonging of life on a machine. Dialysis done more often or over long length of time is easier on the body as it is more like real kidneys .. yet people don't often want to be on a machine any longer than they already have to even if it would make them feel better. Everyone is different. You need to find out his thoughts and where he is going with this in his mind.

I can feel your frustration as you want to help him but he doesn't seem to want to help himself. That must be very frustrating.

There is something in the USA called the RSN HopeLine which is the Renal Support Network's toll free phone number to call and talk to others who have been there and understand. There is a website on it but I don't think we are allowed to post links here. So just use a search engine to find it by searching for RSN HopeLine

I hope things improve and am sad for you and offer you my prayers if that is ok.

Franksshow · 08-13-2009, 01:09 PM

Thank you everyone-It just seems like we are on a roller coaster-Finally going to see a kidney doctor next month-VA is fianally starting to pull there weight- Got hubby to dring 2 16 ounce bottles of water every day all day ling- But was glad we took him to ER on sunday-Creat was 2.18 with a bun of 40 then on wensday 2.4 cre. and bun of 37-But the shock of all shocks My husband has Pnumonia-Hospital faxed over the results to the VA-So now he is on more meds one for lungs and one for arthritis in his hip-Went and did xrays today and will have a sonograhm in 2 weeks as well as get his machine for night time breathing. My biggest Question is he got the pnumonia shot so how did he get pnumonia-Rollercoaster-
Karen