Mom said she doesn't want to do dialysis

[ODAT]

Here I am thinking I'm getting my mom ready for what's down the road, and I think I've actually scared her off! Last night my sister Cathy told her that the doctor called with the results of the ultrasound on her stomach (she's had bumps that never bother her, but wanted to find out what they were). Well, the doctor said the ultrasound only shows abnormalties in the stomach and they found gallstones. I don't think that could cause the bulges so we are no further ahead with that.

Cath told mom that with gallstones if they aren't bothering you, you don't have to do anything about it. Mom said 'good because all's I want to do is take my pills, shots (insulin and procrit), and drink this yucky stuff (potassium). I don't want to do dialysis.' Cath asked her where that was coming from and she said, 'I heard that you don't pee anymore and I don't want to go through that.' Great, now my sister is going to blame me for scaring her out of treatment! Cath told her to just wait until we meet with the kidney doctor. Maybe it will be a while before we need to think about dialysis if her numbers are good.

What do I say to my mom now? I feel like I need to apologize to her, I told her that it didn't happen in all cases (urinating), but I really thought when you were on hemo in a center that you no longer urinated. Help set me straight. Thanks!

[Bajanne]

I have done in-center haemo for just over 2 years and I still pee.  Not a great deal, but I still do.  This is strange, but last night I had a dream that I wet my bed!!  Tell your mom that urination will be reduced as the dialysis machine is doing a lot of the work of the kidney, but she will still pee.

[ODAT]

Thanks bajanne, I have to wait to call her this morning another 30 min or so. She's a late riser. We have to definitely not make any decisions until we talk to the doc on 11/6. I am going to make sure I'm at that appointment. It was just going to be Cath and mom, but I need to hear what's going on.

[Rerun]

It is ultimately HER decision.  I get so damn tired of the "family" forcing their parents into dialysis.  The poor old people are laying there moaning "take me off, I don't want to do this" while the KIDS go over to Starbucks and shopping for 3 hours until it is done. 

Give her all the information, but she will have to go through a lot.  Don't do the fistula right away.  Use the catheter which is less invasive until she decides wheather or not she will do dialysis. 

Stopping urination is the LEAST of the worries with dialysis.

[ODAT]

We are definitely not going to force her as she will do what she wants. We just want to make sure she makes an 'informed' decision. You have to admit the consequences of not doing dialysis is a hard choice to make. I agree not urinating is the least of the worries, but if I say that - she'll get more scared. I just called her but she didn't answer so I'm waiting for her to call. If my mom was in a position that you describe, I definitely would listen to her and not just go shopping.

I am worried sick that she will decide not to do dialysis based on how I've handled talking to her about it. I just really want to talk to her and tell her to wait until we get more information on her condition. The PCP said her hemoglobin numbers looked good. How does that relate to kidneys?

[Rerun]

You have told her the truth.  You have not candy coated it.  Yeah, if people knew everything at first NO one would do this.

The end of life choice with dialysis is not bad.  You just get more tired and more tired and fall into a deep sleep until you go home to the Lord.  It is not painful or horrible. 

She has her own mind and don't feel guilty for telling her the truth.

I like not having to pee.  I can out last any MAN on a road trip and I don't have to get up in the night.  There is the up side.

[ODAT]

Well, the end of the road may not be bad, but when you can be around for a few more years - it's hard to hear that decision.

I just talked to her and she said she is not going to decide right now, but she is scared.

[Rerun]

Smart Lady.  She is no dummy.  She has been around a few years longer than you and she has seen a lot.  I hope you can talk her into just trying it.  Again don't let them put the fistula in her arm just yet.  A catheter will work just fine for the trial test.  Just my opinion.

[RichardMEL]

Some people stop urinating and others keep some... I've been going over a year now (14 months) and I still pee a couple hundred ml a day. I *wish* it was more but alas.. no. You know there IS an upside to this... watching movies and sitting on planes just got SO much easier!!

I totally agree it is your mother's decision as to what she wants to do and is comfy with. It's natural to be anxious and scared... all I would suggest to her as someone that loves and cares for her that when the time comes at least give it a go before deciding "no way" - it may be less scary/weird once she's tried it out a few times. If she still wants to not go ahead.. totally her choice and obviously she needs to be aware of the likely outcome of that choice... I totally support anyone's choice to decided to do it or not, even if that might hurt those who care about them. We are all masters of our own lives and bodies.

[aharris2]

Well, the end of the road may not be bad, but when you can be around for a few more years - it's hard to hear that decision.

I just talked to her and she said she is not going to decide right now, but she is scared.

ODAT, The fear of the unknown is powerful. Yes , I understand that we get a lot of factual information here at IHD which is great. But, the actual experience of dialysis is not known until it is experienced and the experience is quite individual - it is different for everyone.

Make sure your mother understands that she can opt out of dialysis at any time if she decides that the bad outweighs the good. She does not have to continue it. I just hate to see anyone making the decision to opt out before even trying dialysis because of fear of the unknown.

The peeing thing... I always thought that peeing was tied to kidney function and that when your kidneys couldn't remove excess fluid from the blood, you simply stop peeing. I did not (and do not) think the cessation of urination was brought about by dialysis. Am I wrong? Without regard, many people continue to urinate for a time after beginning dialysis. If your mother doesn't want to get to the point where she doesn't pee, that does not mean don't start dialysis. It simply suggests a stopping point.

[KT0930]

I just passed my one year anniversary on dialysis, and I still pee. I think stopping might have more to do with what caused your kidney failure in the first place than if you're on dialysis or not. I may be wrong, though (it's been known to happen once or twice  )

[Jannie]

Writer/humorist Art Buchwald made a decision after a year of dialysis that he wanted to stop treatment. He had a Good year before he passed away. His family and friends were close. His blood work got better briefly, then the kidney disease caught up with him and took him. Don't try to mother your mother. Just make sure she knows the consequences of what she's dong. Then support her no matter what happens. God bless.

[letaek]

It is ultimately HER decision.  I get so damn tired of the "family" forcing their parents into dialysis.  The poor old people are laying there moaning "take me off, I don't want to do this" while the KIDS go over to Starbucks and shopping for 3 hours until it is done. 

Give her all the information, but she will have to go through a lot.  Don't do the fistula right away.  Use the catheter which is less invasive until she decides wheather or not she will do dialysis. 

Stopping urination is the LEAST of the worries with dialysis.

I totally agree. My dad stayed on a cath for a while then they went through getting a fistula set up and letting it mature. Watching a parent be scared is so hard. I wish you guys the best-she will be ok

[Sluff]

What ever decision she makes, your family will be in my prayers. The one thing about IHD is you will get the truth and remember that we all have our opinions but ultimately your Mom will make her decision and whatever that decision is, you will have to support her as she would you if you were in her shoes.   

[JBLadyB]

I agree, it is your mom's decision.  I am still not on dialysis, go Nov. 6, for a check on the blood tests ect. then see what is next.   But, when I was told, I thought about not doing it too! My daughter didn't like that idea, my husband said it was mine choice. I was the one doing it.  We both watched our son go through it. I think I decided to try when I found I could opt out at any time.  Think about it, are you doing your thinking for her or yourself.  Just make sure she has the information to make an informed decision that is right for her.    What to do!   Mel

[ODAT]

I agree, it is your mom's decision.  I am still not on dialysis, go Nov. 6, for a check on the blood tests ect. then see what is next.   But, when I was told, I thought about not doing it too! My daughter didn't like that idea, my husband said it was mine choice. I was the one doing it.  We both watched our son go through it. I think I decided to try when I found I could opt out at any time.  Think about it, are you doing your thinking for her or yourself.  Just make sure she has the information to make an informed decision that is right for her.    What to do!   Mel

I appreciate your thoughts, yet I am thinking of her. I want her to be informed and not scared. If mom is basing her decision on what her sister went through, being scared of what will happen (needles, ill feeling), then I need to make sure she has all the information before she makes that decision. As you can see from my other post 'Mom's in the hospital" it looks like she will be getting it started sooner than anticipated. She did not say she didn't want to. She has so much going on, I just hope they can sort it out without her getting any worse.

[2_DallasCowboys]

Wishing your Mom, and all of your family well!


I will pray for all of you

Anne

[angela515]

Hope everything goes well for you all. I'm glad your informering her, just giving her the facts, and not forcing her. I have decided now, that at a certain age/time in my life if I have to do dialysis again, I may not choose to, everything will depend on the situation and my age and overall health at the time when the time comes... Since I have done it before, I know what it's like, and at the age I was when starting it, and going on again, I wouldn't ever go back and say no, I want to live my life, but I do think at a certain age/time in a person's life, they know when there ready to let nature just take it's course... I hope your mom sticks around, I can't imagine losing my mom, but also I am so glad your not forcing her to do what she don't want to in the end.

 

[Romona]

Your Mom is lucky to have you! You are trying to help her make the choice that is right for her. Making sure she is getting the information she needs to make an informed decision is very important.