New and could use some advice

[daughter20]

Hi eveyone.  I am glad I found this site and am hoping that I can get some support that I need right now.

My mother is 55 years old and really needs dialysis but she is resistant to it.  As of right now it is her only chance of living.  She could die any second unless she goes on it. Unfortunately she views dialysis as equivalent to death.  I have been pushing her to do dialyis and choose life, but then I got to thinking that I've never been on dialysis, and therefore know very little about what it's like for someone who has to go through it.  Maybe I'm wrong in wanting her to go on it.  My question for those of you who are on dialysis is, is it really that bad?  Do you feel you can have a life on it?  Are you still happy?  Do you feel better on it than you did off? 

I'm not sure whether to respect her wishes because I'm not sure how bad dialysis really is.  I just wanted to get the opinion of those of you who do it. I know it's not easy, but my gut feeling is that it's a far better alternative to dying.  I don't want to let my mother just die especially when she doesn't have to.

Thanks to all who read this. 

[MooseMom]

I cannot WAIT to read posts answering this.

I don't think there is one answer to this, daughter20, but kudos to you for not assuming your mother is wrong.  You can't force her to go onto dialysis, so you have to respect her wishes.  You don't have a choice.  The only one who has any choice here is your mom. 

Perhaps you could mention this site to her and let her ask questions herself.  She might feel more at ease discussing her feelings with "informed strangers" than with a family member who has such an emotional investment in her decision (understandably, of course!).

Good luck to you both, and welcome to the site.

[cloud393]

What caused her kidney failure and how is her overall health?  Maybe she needs meds for depression?   I know when I first found out I needed dialysis, I was quite depressed and could cry at the drop of a hat so doc put me on zoloft and I started feeling better.  Of course the dialysis plays a part in that too.  I agree that maybe if she talks to some people in her situation it may help.

[Marina]

hi  Daughter20,

It's  true  that  you  can't  force your  mom  to  do   treatment if she  doesn't  want  to,  as  a patient  she  does  have that  right.
Depending  on any  other  issues  she  might  have,  life  on  dialysis   is  not  so  terrible.
I have  been on  PD  for  over  6 yrs  and  still   have a pretty   productive  life.       I  work  full-time,  and   live  alone.  My  life  has not changed much  since I  started  dialysis,  except for having  to make   time  for  my  treatment,   waiting  for  my  dialysate  solution  (every  2weeks)  and  storing  in  it in  the livingroom. 
Can you  have your  mom  read  some  posts  here  or  on other  sites  so  she  can  read  for  herself  that  she    can  still   have  a life  on dialysis??
((((((hugs))))))))

[RichardMEL]

Dear daughter20... first of all welcome to IHD!

I'm sorry you're in this situation. It's so difficult to see someone you love in this situation.

I agree with the others that it is her body and her life and her choice. Rather than badger her so much what I would perhaps suggest is to give it a try for three months. WHat's the worst that can happen? She would have been informed without it that she might not have long anyway, so from that point of view it's try dialysis or die (sorry to be so blunt - I feel horrible writing that). Given that choice, as bad as she feels, it can't be as bad as not living - can it?

Hopefully if she tried it for a few months she might find that a) she feels better with the treatment and b) it's not as horrendous as perhaps she thinks (fear of the unknown) and that she CAN live and do stuff with it, and spend time with you and the rest of the family. That would be the ideal outcome.

Maybe your mom's nephrologist/siocial worker could provide some videos or other material of peopl,e who are on dialysis and doing well. Maybe even show her this website - and many of the people here living full lives even while on dialysis - like Zach who makes films, or Henry who works 70 hours a week in mining (!) etc. Maybe even see if they can tee up to meet some patients? Visit the dialysis center and see how it all works might help a bit?

Again it i her choice, but it seems that she's operating under a flawed assumption about what it means. A dialysis machine is NOT like a ventalator or iron lung. You can live a fairly reasonably normal life while dialysis helps you live. And perhaps something like PD could work for her also to make things even more normal.

I think what she needs is information and support.

my very best wishes to you and your mom at this time.

 

RIchardMEL, Moderator

[MooseMom]

I'm not sure that the mechanics of dialysis is what is uppermost in her mind.  Starting dialysis is a life changing even that is thrust upon you...you have no choice but to do it or die.  It's that simple yet at the same time, that complicated.  To have such a thing forced upon you can result in all kinds of feelings...anger, frustration and the sense that your life is spiralling out of control without your consent.  Refusing to do it is regaining control over what happens to you.  It may result in death, but at least that is your choice.  I know that sounds stupid, but some people really do have that mindset.

Fear of the unknown can be paralyzing.

The truth is that no one knows how dialysis will be for them.  We have some members who do very well, yet we have others for whom dialysis is, quite simply, hell.  How do you know which scenario will be your fate?  Finding out takes a huge amount of courage for some people.

[daughter20]

Thanks everyone for the replies. I truly appreciate it. I guess what I'm grappling with is that I feel like she's not thinking clearly and it's almost suicide to not even try dialysis.  Yeah it's her body.  I get that, but I can't support a choice I think is so wrong.   

[okarol]

I agree with Richard. If she's willing to give it a try for 3 months, but at the end of that time she does not want to continue, then you'll accept her decision. I think dialysis will improve her ability to think, but you never know how someone will respond. She's so young (same age as me!  ) - I hope she will take a chance on the treatment.

[RichardMEL]

Overload of toxins can absolutely cloud your thinking and make you feel fuzzy. Can this affect rational thought? I think the jury is out on that one. What seems clear is the longer she goes without, the worse it will become as the toxins take over, and of course the more difficult it will be to get into a stable situation should she start Dialysis.

MM - I hear what you're saying (ok, I read it!) about everyone's D experience being different - some go OK with it and others have terrible trouble - but I think in the vast majority of cases people tend to cope with it OK - specially when they settle into a routine.

I suggested the 3 month thing as a kind of "deal" that daughter20 could make with her mom (or suggest anyway).. like "you try this for 3 months. If you still hate it, and it's not working for you, then I'll support your choice."

55 is so young! She has so much left to live you'd think. If she were 85, I'd say "look she's lived a long life, and it might be worth supporting her choice with love and compassion" - but in my view 55 is so young, and with good dialysis she can continue for a long time yet - feeling hopefully more normal and able to enjoy life again in many respects. I can absolutely understand d20's feelings that not even giving it a go, which is akin to suicide, is a choice she can't support.

I think though, at the end of the day, what will work the best for your mom is that you DO let her know even though you disagree, and want her to give it a go and see how she feels etc, that you love her and want her to be comfortable with her choice.

My own mother was caught in a catch-22 of sorts with her own disease (not kidney related) - the meds were attacking and shutting down her organs; and so was what they were trying to fight - it was a no win situation and she decided to end treatment and go with some dignity. She was 66 - way too young - but she was also very rational at the end, and very clear on her choice, and at peace with that (she also had had 5 or so years to prepare herself..). What was most important for me at that time, when she announced her choice, was to show her my support for her decision, that I loved her and that I understood why.

Let me be clear though- that situation that my mother faced was totally different, I feel, to d20's mom. Dialysis is a treatment option, that for most, specially someone in their 50's, that SHOULD provide for many years of well supported life. My reason for relating my mother's story was just trying to say that I have my own perspective, and understanding(of sorts) of some of the issues and feelings involved.

Hang in there, d20!

[aharris2]

As has already been said, encourage your mom to try dialysis. If she hates it, she can opt to quit at any time.

It becomes an equation with dialysis on one side (the cost) and the good things still to come on the other side (the benefit). Is the benefit worth the cost? Each person decides this for him/herself. My brother used to say that he would never start dialysis, but when the time came he got caught up in the "current" and did start. What he has gained - he watched his young teenaged daughters grow up, start high school and start to drive, graduate high school and start college, start working and buy that first vehicle. One has graduated college and and one has married. Just recently he got the opportunity to hold his first grandchild. He does hate dialysis so it has come at a cost.

Has it been worth it to him? All I can say is that he got up this morning and went to dialysis yet again.

Welcome to the neighborhood, d20. Your mom can only imagine how bad dialysis is. I hope she gives it a try. I hope the future good is worth the cost.

[Rerun]

Daughter20 everything has been said.  Dialysis is rough at first until you get into a routine and have a chance to realize you DO feel better.

Welcome to IHD and keep us posted on your progress.

Rerun, Moderator         

[MooseMom]

A lot also depends upon whether or not she has other health issues.  I would imagine that the majority of people on dialysis have other health problems that complicate the picture.  Is your mom healthy otherwise?

I do agree that a lot of factors can warp your mom's thinking...fear, toxins, depression...and under those conditions, it is hard to think clearly.  If there is a way to get her to agree to dialysis for a few months, she may have a whole new outlook as her condition improves.  But there is that risk that those few months are so hard (which seems to be what generally happens) that she won't give herself the chance to get better before giving up, especially if she has trouble with her access (which is a whole 'nuther topic).

Do let us know what she decides to do and how she reaches her decision.  Please try not to get angry at her.  I can imagine the frustration and fear you must be feeling, but I doubt it compares to what she must be feeling.  Be supportive but also gently persuasive.  If we can help in any way, just come online and ask!

[daughter20]

Thanks for all the responses.  To answer someone's question my mother has diabetes II and that's what caused the kidney failure. 

I have a really bad feeling right now and all I want to do is run away from everything but I know I can't because no one else in the family would step up. 

[RichardMEL]

  sounds tough D20.

Have you asked her if she'd consider giving it a go for 3 months? If so what has her response been?

[boswife]

i may be way out of line here being the "cargiver" but i would say (from what i've read from you) that i would give it my all to encourage her to go.  My hubby's thinking was VERY cloudy and he was an the verge of giving up (pre-dialysis),  but, was sort of forced on dialysis while in the hospital...  He had not much resistance left and just didnt care so that was a good enough "agreement" to start.  Though he isnt fond of it, he has made a huge turn around and lives a VERY full life now.  I would have lost my husband way too soon had he not chosen to start...I hope she will listen, but dont go taken blame if she doesnt...  All the best, i hope she'll give it a go.

[daughter20]

I'm going to keep pushing her to at least try dialysis.  She sees the dr. that has been monitoring her this week.  I know he think she's being insane and is going to ask her to go on dialysis.  He told me the only reason he hasn't given her an ultimatum ("go on dialysis or I won't be your dr. anymore") is because he's afraid what will happen if no one monitors her.  I will know more later this week.  I will keep y'all posted.

Thank you all for the support.

[MooseMom]

Good luck to both of you.  I understand her fear, but I hope that it will not paralyze her and literally cost her her life.  I really feel for you both.