Need some advice

[Mandyjane]

OR maybe I just need to rant a little!

I joined IHD a few months ago, back when my grandma had just started in center hemodialysis.  It was really rough at first, but we've kind of settled into the routine...   I was very glad to find this site, because I needed to read about other patients experiences so I'd know what to expect.  I can't begin to describe how valuable this website is, even if I don't have the chance to participate in discussions much. Thank you all, very much. 

OK, back to my rant

Grandma has been talking about quitting dialysis.  I don't want her to die, of course, but I understand that she is miserable, and I don't want her to suffer.  She's in her 80's, she had a long fun life, but this is no fun.  My uncle, who never comes to visit her, says that he "won't allow" her to quit.  He won't listen to reason, or even take a really good look at his mother, look at her and see that she is in pain all the time.  I worry that when she makes the decision to stop treatment that he will make problems, like legally try to take her rights away from her.  I really don't know what I should do.  He acts as if the rest of the family wants her to die, when that couldn't be farther from the truth.. we take care of her everyday!  OH, I'm just so frustrated. 

Do any of you have to deal with clueless selfish relatives?

[MooseMom]

He could try to take her legal rights away from her, but he'd have to spend a lot of money in the process and would ultimately be unsuccessful.  Bottom line is what your uncle wants is largely irrelevant.  If your grandma is competent, she can make whatever decision she wants regarding her treatment, including but not limited to stopping dialysis.

[Mandyjane]

Oh, thank you.  I was hoping that was the case.  She is mentally competent, in my opinion.  She is a little forgetful, but otherwise she is pretty sharp.  I want her to be in charge of what is or isn't done to her, I just make sure she knows she is loved, and that she is not a burden.   

[greg10]

.. My uncle, who never comes to visit her, says that he "won't allow" her to quit.  He won't listen to reason, or even take a really good look at his mother, look at her and see that she is in pain all the time.  I worry that when she makes the decision to stop treatment that he will make problems, like legally try to take her rights away from her.  I really don't know what I should do.  He acts as if the rest of the family wants her to die, when that couldn't be farther from the truth.. we take care of her everyday!  OH, I'm just so frustrated. 

Do any of you have to deal with clueless selfish relatives?

Welcome to the forum, Mandyjane.  I appreciate your position very well and I am sure you want the best for your grandma and perhaps your uncle wants that as well.  But it doesn't sound like your uncle has expended the time, sweat, heartache and effort to make that happen while you have.  Please ask him if he is ready to spend 20, 30, 40, 50 hours a week to make your grandma's life less miserable.  Perhaps he can make a more sound decision when he tried that.

In center dialysis can be some of the most miserable experience one can ever have and I have no doubt that your grandma is in pain all the time.  I know from personal experience that a lot of clinics do not have the proper knowledge to treat the elderly patient.  They think they can use the same protocol of quick dialysis which is already tough on a younger person, and apply that to the elderly as well.  The best way to treat your grandma is to have a very mild, slow but thorough dialysis (low blood flow, perhaps around 300, low ultrafiltration rate, perhaps less than 300 ml/hr and treatment duration of 4 hours or longer).  Your grandma would also need to watch her fluid intake so that there is less need to 'pull' fluid off of her.  She would need to watch her vascular system as well because that is perhaps the system most harmed by dialysis.

 Have you explored other modes of dialysis such as in center nocturnal or home dialysis?  Read and learn all you can about dialysis on this and other forums.  I think there may be a lot more to be explored to make grandma's life a little less miserable and perhaps worth living.  God bless.

[Desert Dancer]

Hi, Mandyjane and 

Clueless selfish relatives are an axiom. Welcome to the club; your uncle sounds like a real sweetheart. 

You say your Grandma is sharp, but is she sharp enough to be considered competent legally? If she is, you need to have her wishes spelled out IN WRITING. IN WRITING. IN WRITING. I cannot stress this point enough. She does not even have to spend money to do this; all the necessary forms are available in any office supply store and can be altered to suit. I would strongly suggest you do this sooner than later, in my very humble (and strong) opinion.

I also second greg10's suggestion you look into home dialysis for your Grandma. So many of the miseries of dialysis are not because of the dialysis itself, but because it's not being done right or is not being done enough, and home dialysis often overcomes those problems. If she is already on hemo then she has an access and could conceivably train to do it at home. She would need to have a caregiver train with her and could not do it alone, but that doesn't sound like it would be a problem.

Good luck to you in this situation.

[MooseMom]

Oh, thank you.  I was hoping that was the case.  She is mentally competent, in my opinion.  She is a little forgetful, but otherwise she is pretty sharp.  I want her to be in charge of what is or isn't done to her, I just make sure she knows she is loved, and that she is not a burden.

I think there is a temptation to infantilize the elderly.  Your grandma has every right to make her own decisions, and your uncle does NOT have the right to force her to endure endless suffering.  If her health is otherwise pretty good, it may well be that she is suffering from a bit of depression like many people of all ages can experience when they start dialysis.  I would encourage you to talk to her about what she is feeling and why.  Quitting dialysis just because it is "no fun" isn't probably the best reason to quit, but quitting dialysis because it is clearly forcing her to suffer is a whole different ballgame.

[Scarlet]

Hey Mandyjane, welcome.  DesertDancer is total correct. You need to make sure that your Grandmothers wishes are know by the staff at the hospital and they need to be in writing! 

I had a similar issue with my mothers brother.  When my mom signed her self off D, my uncle called me and said that I needed to come home and talk some sense into her.  Well I did come home, but it was my uncle that I talked some sense into.  My mother was 62, not suffering from depression, or at least not any more then any of the other people on D tended to be, and there was nothing wrong with her mind. 

We had her neph, the head nurse, a social worker and a pastor all speak with her and then confirm to my uncle that she knew exactly what she was doing. On her terms, at her time, my mom lived that way and died that way.   I only hope that everyone on D has the same control over their lives and can choose the way they live or die.
You might want to look into a Medical Power of Attorney. Not sure where you live, but in Canada you can legally grant someone the power to make medical decision on your behalf in cases where you can no longer speak for your self.....you just REALLY need to make sure that the person chosen agrees with your wishes.

Hang in there, you know your grandmothers wishes, now it is time to make sure that they are written down and followed by the hospital. 

[Mandyjane]

Thanks for all your kind words and advice!

I spoke with my mom about this situation today, and she thinks she should get power of attorney.  My mom only wants grandma to be happy, so I think this is a good idea. 

Grandma isn't ready to quit yet, but she is so tired.  I know the day will come, I see it happen at the center she goes to all the time.  It's very hard on the elderly, that's for sure.  They don't seem to be careful enough with her access, and they tear her skin with tape sometimes.  Also, the chair is so uncomfortable that she can hardly walk afterwords.  She has other health issues besides renal failure.  I wish there was some way to make it all more comfortable. 

[MooseMom]

Honestly, and I'm sure this isn't on purpose, it seems that if you are either very young or very old, the system is going to treat you with less care and compassion than if you are in the middle of the age spectrum.  It's institutional ageism.  I really believe that.  Listen to how people talk to the elderly, and you'd swear they were talking to a child.

[paris]

Mandyjane, What a blessing you are to your Grandmother!   How wonderful to read how much you love and respect her.  Everyone should be lucky enough to have a granddaughter like you.  I bet your Grandmother is a very special person, too.   

[looneytunes]

Oh Mandyjane, what a hard time for you and your family.  I agree with everyone's advice, your g'ma needs to put her healthcare desires in writing while she is of sound mind so no one can dispute them later.  Bless you for being there for her, I'm sure she feels the same.  You'll be in my prayers.
 

[Desert Dancer]

MandyJane, how is your Grandma doing? Has the situation improved any?