new to forum and kidney disease

[worriedwanda]

Hi, my name is Wanda and writing to all of you for help.  I am a caregiver for a 74 year old male with kidney disease.  I have read anything that I can find on the internet (tried to figure out what questions I should be asking the doctors) and everyday something new comes up with Harry that I dont know if I am doing the right thing or if there is something I should be asking or knowing about.

In July 2010 Harry was having chest pains and was admitted to the hospital, I was informed that he would need 4 stents.  I was told that they wanted to have him do 2 sessions of dialysis b/c his kidneys were not functioning well and the dye that is used when inserting the stents can damage the kidneys.  This was the first time I fould out he had kidney issues.  His GFR prior to surgery was 12.  They performed the surgery and he had 2 more sessions of diaylsis prior to being released from the hospital at the end of July.  Since the surgery on his heart he has refused any more dialysis treatments.  We have spoken with 2 nephrologist and he keeps telling them the same thing.  The doctors told me that if he is not going to do dialysis that we will have monthly bloodwork and appts with them.  The latest bloodwork was done on 10/11/10 and he has a GFR of 10.

Harry lives alone I do all of his grocery shopping, cleaning, wash, cooking.  I have noticed in the 2 weeks he is sleeping more, he is confused when he wakes up, he is only eatting 1 meal a day.  Last night he called the police stating someone broke into his house (he was sleeping on the sofa) and attacked him and ran out of the house. The police and I do not believe anyone was in the house (nothing taken, broken, Harry was not hurt).  But when I got there he truely believed that someone was in the house, but he could not give a description of the person, the person did not say anything to him and he could not tell us how the person left the house.  When I tried to ask him questions about what happened he got very agitated with me.

Can anyone tell me is this what I should be expecting from him?  Will it get worse?  How can I get him to eat?

I know he is not currently doing dialysis (and I know that is his choice) but it seems like everyday is a rollercoaster and I dont know what to do next and I am afraid of what is to come.

Thank you for taking the time to read this and I would appreciate any words of advice.
Wanda

[MooseMom]

If Harry continues to refuse dialysis, then I suspect his condition will worsen and he will eventually die of a buildup of toxins in his system.  These toxins can cause all manner of maladies including psychological issues.  Do you think he fully understands that he will not get better if he does not begin dialysis?  You cannot force this treatment on anyone, but if he does not understand the ramifications of his decision, then I don't know what happens next.  Is there a next of kin that you can contact?  If there is, I think you need to contact that person and have him/her contact Harry's medical team.

If there is no one you can turn to, then I think the first thing you need to do is to establish what role you are legally/ethically able to play in this.  If it is appropriate, you may need to be the one to speak to his doctors, particularly to a nephrologist.  With a GFR that low, Harry needs to be closely monitored.  Often people with this severe renal disease lose their appetites because the buildup of toxins makes everything taste nasty, so I'm not sure you can really expect his appetite to improve.

What a difficult position you are in.  You should not be alone in this.  We can give you some general advice, but really, you need to speak directly to his physicians.  Please let us know what's going to happen next.

[RichardMEL]

I'd like to echo what MM has said (great post, I think). The tiredness and confusion are almost certanly related to his low kidney function - technically he is at End Stage Renal Disease (ESRD) and that meansm, without intevention, things will more likely than not get worse - I'm sorry to say. Yes his age may also play some role - the result of which is everything combined isn't so good.

Yes, it is his choice to not have dialysis, and I can certainly understand that given his situation, but he needs to understand the consequenes of his choice and that dialysis, while not a fun form of treatment, can bring him some level of stability which may improve the quality of his life.

You are in a difficult position as a carer. I wish I knew what more to say. I think MM's post was a very good one though.

[Bruno]

I agree with the other two posts. The symptoms you describe are the final stages of kidney disease and without dialysis your friend will die. I'm sorry to be so blunt, but I'm 75 and I've been in the place where your friend is. I don't believe it is your role to cope with this...I'd be looking for some support or advice from whoever you are responsible to.

[worriedwanda]

Thank you all for your words of advice.
MooseMom: I am his POA and have been for years, Harry is divorced and can often be very stubborn, myself and my family have become his family in the last 10 years. Harry spends Holidays with my family, has gone on vacations with us. He does have children and only one that lives several states away calls about once a week.  To me Harry is like another grandfather(Harry is 40 years older than me).

Harry has been refusing dialysis since July, we were at the nephrologist today and he told us that dialysis needs to be started now.  Harry just sat and looked at him and kept repeating that he is not doing it.  The doctor explained to him and me that he is just going to feel worse and that without dialysis. This is what he has been doing at every 6 week check up.  Harry is now amenic and we will be starting shots every two weeks, which he has agreed to do.  I just dont understand how he can not want to do some things to make himself better, but is willing to do others.

I am the only one taking care of Harry, I cook his meals, do his wash and do all his errands (his license was medically revoked in September). Harry gets stubborn, I am the only one that can help him in his mind, if I am not available (working 2 jobs and have to kids) then whatever he needs "waits" until I can come do it.  It is not that my husband wont help Harry, it is that Harry refuses to let my husband help him.

I have tried speaking with the doctors, it seems like since he is refusing dialysis they just want to see him every 6 weeks.  The doctor agreed today that the toxins are building in Harry, had him hold his arms out like he was stopping traffic and they staarted shaking almost immediately, I dont know what the doctor was looking for by doing that but he did tell me the toxins were building.  I tried asking how long I have before it is to late to convince Harry to do dialysis and all the doctor would say to me is everyone is different. I understand that and I know if he refuses everything that is his choice, I would just like someone to tell me what is next.  Harry has basically stopped eatting (one meal a day if I am lucky), his blood sugar is up and down like a yo-yo (fasting 124, next day 271, next day 176).  He tells me he hasnt had a bowel movement in over a week.  He is getting confused with time, waking up at 1:00am and getting dressed for the day.  We loose our teeth (yes on Sunday I was on a teeth hunt, found them under a throw pillow on the sofa.).  Almost every day I get called and yelled at by him, then he will call back a few hours later like nothing was ever said.

I am not a mean person, I just dont know how much more I can take emotionally.  And with him refusing to let anyone else help him, I cant even pay for help.

Thanks for listening, sorry for the rant

Wanda

[MooseMom]

If Harry continues in this fashion, he will die.  It's just that simple.  His course is set.  I don't see how anything is going to change for him, so the question then really becomes one of how to get yourself through this.  I think you may have to begin disentangling yourself emotionally and remiind yourself that he is a sick man.  Easier said than done, I know, but as anyone knows who has cared for an elderly parent who is perhaps suffering from a degree of dementia, you may need to remind yourself not to take things personally.

I'm so sorry you are going through this, but I hope that you will eventually realize that what you are doing for Harry is God's work.  You are caring for another human being who is suffering greatly, and you deserve much credit for that.  I hope you take great pride in your efforts.

[Bruno]

His dementia like symptoms are because of the build up of toxins in your blood. You behave irrationally and say things you would not normally. Embracing death is a thought that gradually occupies your mind.
You are breathless and any form of exertion is beyond you. You don't feel like food. You can't think straight and replying to a question requires a huge effort and sometimes you can't gather your thoughts. How do I know this? Because that was me 5 months ago.
What will take me away if I was not on dialysis (or would not go on)...oddly enough, a heart attack.
Just so you know my circumstances, I'm a 75 year old Aussie who resisted vigorously going on dialysis but am now relieved I did. All of this is to enlighten you but I still don't know how to advise you...in actual fact, I think you have done far far more than your share.

[rsudock]

worriedwanda...is their anyway for HOSPICE or a nurse to come in and help you? Thinking of you...

xo,
R

[monrein]

worriedwanda, I have no advice or wisdom to add to what has already been said here but I do want to tell you how much I admire all that you've done for Harry.  You are a very special person to have cared as you have.  Since Harry appears unable to thank you and show his appreciation under his current circumstances, I'd like to do so on his behalf. 

[texasstyle]

what great replies you have gotten here. On thing is everyone is truthful here. I am a caregiver to my husband on dialysis who is mainly non compliant with many aspects of it. It is so hard to watch someone not make the right decesion and all the while they're suffering. You are so NOT alone. Your circumstances may be slightly different, but in the end many of us have been,felt, and know exactly what you're going through. Being truthful I have to agree, yes he will die. The toxins build up, you can into coma, the potassium will build up and he probably die from cardiac arrest. Vomitng from toxic build up, shortness of breath from fluid (water) building around the heart are 2 of the symptoms of kidney failure. You kindneys make a horomone that helps regulate the balance of water in your body. When you're kidneys are failing you can't regulate that. It often starts with edema in the legs/feet ankles and eventually makes it's way to filling the heart. For hi dialysis would help remove this water build up easing his shortness of breath. he would benefit in soooo manyy ways. Educate him if you can. Knowledge is power. You're not alone.

[del]

Wanda you are a very special person to be doing what you are doing. Do not take the yelling and things he says to you personally - it is probably the build up of toxins causing him to do this.  Nobody can make him do dialysis if he refuses.  He would feel much better though if he did start.