Re: End of Life Discussions

[MooseMom]

I agree with Okarol.  I'd phone her doctor immediately.  If he says there are privacy issues and he cannot talk to you about her case, then find out what you need to do to get permission, do it, and make an appt with him asap.

You can rest assured that NO ONE is pressuring her to stop dialysis.  It's usually the opposite...usually patients get pressure to keep going!

I think you know in your gut that what your mother is telling you is not quite right.  Follow your instincts and speak to her doctor.  Or, perhaps you could speak to the social worker at her clinic (are clinics in Canada required to have a social worker like they do here in the US?)

[Mymothersdaughter]

Thanks. My dad came home today, tried to talk to him on the phone, but he kind of blew off the conversation to "the nurses aren't saying that". But the question in my mind is whether my mom is hearing that because she really is done. I think the anti-depressant is probably a good idea, and I will see about talking to the doctor - but I'm wonding if it might be better to talk to her nephrologist or the dialysis clinic, as she doesn't like her family doctor and doesn't want him to be the one making the decisions.

It's just hard, I wish that we could just move back to the city and be able to help make her life better. I think that is a big part of my emotional response to this - is that I feel if I was there (with her only grandkids), she would be happier and have something to live for. My dad still works (to keep his sanity I think), but as my mom doesn't drive she ends up pretty isolated. Her trips out of the house are pretty limited to dialysis 3x per week and church on Sundays. And she is NOT tech savvy, so getting her online is pretty much impossible - especially with her memory loss.

I am also thinking of contacting the senior's pastor at their church, to see if I can get her some support.

And while it would be difficult for me to let go, if she is truly done with dialysis treatment and tired of suffering, then I can accept her decision and support her. If I were her, I would have quit four years ago. But I don't want her to feel that I think she should quit and that I don't value her life - as that seems to be what she is hearing from the nurses/doctors, even IF they aren't intending to say that. I'm worried that by supporting her in ending dialysis at this point, she might actually be trying to test us to see how her family is feeling - questioning if we really want her to keep going.

I greatly appreciate your prayers. Thanks,Tricia

[lmunchkin]

Tricia, are you and your mother close enough to have a heart to heart discussion? My mother and I loved each other but she was closer to my other sister.  She confided alot in her, and I was thankful for that.  Can she talk to you in confidence?

[Mymothersdaughter]

Thanks for all of your help. I spoke with my mom again tonight. My dad had a chance to talk to her prior to my phone call, and she got on the phone and asked me to pray that they would not force her to end dialysis. I think that with her confusion, she is miscontruing nurse's comments to mean that they think she should stop dialysis. My dad was in the background repeating "no one has said that you have to stop dialysis" which of course frustrates my mom as this is what she believes, but at least I can say that she isn't just saying what my dad has told her to say. My parents then went on to talk to the grandkids so this part of the conversation was fairly short.

After my daughter ended the first phone call, I called back and had a good heart to heart with my mom. The great news (for me) is that she is quite comfortable continuing dialysis. After so many years, it has become normal for her. She is truly afraid that the doctors/nurses might cut her off - and I think that perhaps this might have come partially from a discussion about her needing a higher level of care, as she is currently at a community dialysis unit. I feel really good about this conversation because I know that I didn't try to force my opinion on her. I did express my love for her - but I wanted to make sure I wasn't trying to manipulate her into doing what I want. She is also open to me asking her church to find someone to bring her to their weekly Senior's group. My mom has always been so independant that she hates asking for help. My dad will resolve the issues with the doctors/nurses.

Thanks

[MooseMom]

That's all really good news!  It may take a bit of time before she really believes that no one is going to force her off dialysis.  Sometimes when we try to talk to someone who might be slightly cognitively compromised, they're just not going to believe us; they have to come to believe things on their own.  But I am confident that your mom will gradually feel more at ease.  I'm glad YOU are feeling more at ease.

[willowtreewren]

Oh, this is good news! 

Been concerned for you. 

Aleta

[lmunchkin]

Awesome news!!!! I agree with MM, nobody should forcer her to do anything that she does not want to do.  It ultimately is her decision, and not anyone elses. I know this takes alot off your mind, and am so glad you had a heart to heart with her! Your love for your mother is very evident! Cheerish her and let her know you are there for her UNCONDITIONALLY. The things that we do for each other here on this earth will be multiplied back to us in the end. If we do good to others, it will be multiplied, if we do bad it too will be multiplied. 
So glad your mother has you in her life! She is BLESSED!!!!!!!!!!!!!

[Mymothersdaughter]

Hi everyone,

My mom and dad are coming up this weekend, coming up Saturday am and heading home Sunday pm. 

Hopefully, mom won't be too exhausted with all the driving, but getting away tends to be good for her. Things seem to be much more positive.

[lmunchkin]

That is Marvelous News!  Yes I do believe the getting out and away for a few days does do wonders. Jay & I are planning a little trip to Nashville to visit some friends.  THANK YOU NXSTAGE, cause all I got to do is put that baby in the Van and we are Music City bound. And, "the discussion" of stopping D. has not been mentioned!  I think alot of distractions can help their mental state for the good!  I hope when I go back to work next Friday that this will not rear its ugly head again. PRAY please!
I mean it is nice to be home but an occassional trip can be very refreshing & enlightening.
Good News MMD, Very good news!  

lmunchkin

[kitkatz]

After having experienced hemodialysis for 12 and a half years, I KNOW that death rides with me every day.  I figure he and I are going to take a fairly long, arduous ride before i give up and let go.  But I have talked to my family about my wishes. I do know if things go bad I will say good bye and stop dialysis.  I do not consider it suicide in any way.

Lots of love and good luck on your road.

[rsudock]

crying...what faith, what love. thank you for sharing about your hubs.

[Kitty Cat]

I've been reading these posts with interest and tears. My husband received some more bad news about his health on Friday. At this point I would think it safe to say that he will not qualify for a transplant unless some miracle happens. It's possible and I pray for it.

All weekend, this has been at the front of my mind, because how much is too much? I too have watched my husband shrivel up to where he is now. How will I react if he makes this decision? I will support him in every way possible as I have but it breaks my heart even thinking about it. I also do not consider it suicide, I have found what he's gone through admirable because I honestly have to say if it was me could I have tolerated the surgeries (there have been so many I don't know how many any more) along with everything else he has had to endure?

How do I manage with all of this? I know I am sounding selfish but I am thoroughly scared about how my husband is feeling because of this new information. His doctor promised me she wouldn't let him give up, but is it truly giving up when you get to this point in your life? I was thinking this morning about how to work up a post about the latest and found this instead. This is perfect timing if anything.

I have been terrified to ask him how he feels about all of this because I'm afraid of the answer, I'm waiting for him to bring it up, but as it is now after 1 am, it's obviously affecting my sleeping.

My worries are now expanding to our daughter. She is a perfect match for him and she may now be showing signs of this autoimmune disease that he has and she is pregnant with her 2nd child. We know it is hereditary, no specific triggers, but she hadn't shown any signs until this pregnancy. She is now considered high risk and being watched like a hawk. (Believe me, I am so grateful for that). How will I be able to help her too if she is showing these signs?

I honestly handle things one day at a time, sometimes I'm not offered that luxury and it's an hour at a time, maybe less. I've gotten used to it, but at least it's something. I try to imagine what our future holds and it's a huge question mark, I realize that we all have that same question mark, because there are no guarantees and nobody was ever promised one.

I've considered counseling, friends have recommended it, but unless you are in this world of dialysis, you can't understand it. It's overwhelming and frightening, it's robbed us of the life we had and left us on shaky ground at best for the future. I can't be angry, I've always felt that we're given the road we're on for a reason, we may not understand it, but hopefully we can make the best of it. Right now, I'm not. I want to scream, I've been crying at how wrong this disease is and all the side issues it creates. With him, it's his heart. There are so many problems with it.

I can relate to these posts more than I would like to admit, I would absolutely support my husband should he make that decision, but selfishly, I truly don't want to spend the rest of my life without him in it. Realistically, this horrid disease will rob him of his life at some point.

[MooseMom]

KittyCat, isn't it awful that anyone has to feel this sort of pain, this sort of suffering?  I am so very sorry.  Your feelings are so recognizable by so many of us.

I'm really glad you have posted because it will give us the opportunity to support you in any way we can.

I don't know if it is possible to never feel anger.  It's an honest emotion, and it's an understandable state of mind.  I hear people say that they are on this road for a reason, but I don't know if that's really true.  What possible reason could that be?  What possible purpose does kidney failure serve?  There is no purpose, so I personally don't bother trying to concoct one.  It is what it is.  You struggle through just like millions of other people are struggling through equally unfathomable maladies.

I'm very sorry to hear that your daughter is having some problems, too.  That is truly nightmarish.  I hope that all goes well with her pregancy; I'm glad she is being "watched like a hawk."

I suppose there is no real reason for you to be making any decisions right now.  I understand the "what if, then what"s, but trying to answer that particular question isn't always timely.  Put that aside for the time being; today's plate is already filled to the brim without wondering what will be served up next month.

We are here to support you, so please do talk to us when you find it helpful.

[Kitty Cat]

Thank you Moose Mom. I post here off and on, usually complaining about the lack of family help, which I've managed to finally put aside. I know we can't expect help from family but we have a few friends who are dearer to us than family. That's sad but it's positive also.

I try to put things into perspective, which is why I mentioned the road. That's my nature to try and analyze things. I know there can't possibly be a reason, but I still analyze.

I referred to myself as being selfish because part of my plan was to return to college this fall. I've been accepted into the social work program and it is truly my heart's desire to become a social worker to help dialysis patients/families. I'm losing hope that this may happen although I'm trying very hard not to jump ahead of time because I don't know what will happen, but my fear is that I may be putting myself into a position where I may fail. That would be totally unacceptable to me.

My husband has gone to a friend's house to visit this afternoon, I'm happy that he feels good enough to go. I'm watching his spirit sink when he does something and can't catch his breath or his legs hurt so bad but because of comments and looks he will no longer use his wheel chair. He would rather push himself. (he has neuropathy in both of his legs. No feeling from the knees down, nobody knows how he is still walking). The pain he feels on a regular basis would have knocked me flat on my back, but he keeps pushing onward. That is why I admire him so much. But again, should he make that decision, I will do everything in my power to make him comfortable and stay by his side.

We've all learned not to dwell on what should be or could be, but somewhere down the road, I just want to scream why can't we take a vacation, why can't we plan on that 7 days from now, he won't be rushed to the ER, or even simple things like making a day at the beach. Underneath it all I am angry. Very angry. Not just because of what has happened to him over the years and what he has coming forward, but after my job ends in another 8 weeks, why can't I plan on going back to school? I've not done anything yet about financial aid because I am terrified to plan...if I follow through, can I follow through? Not only that, but when I find a new job, what happens the first time I get a phone call telling me he's being rushed to the ER? Here, you can't have FMLA until you have passed the first anniversary of your employment, so do I lose a new job because I refuse to not be there for him?

As I've said, I know it isn't me only, it's all of us here on this board, we all have the same fears and if it wasn't for this board, I honestly don't know where I'd be at this point without all of the advice and help that I've gotten over the years.

[G-Ma]

Hi Everyone..Happy Mother's Day. I thought I would check in after my year "off"..I take on everyones illness/concerns/feelings and I get very depressed so my youngest son told me I had to take a break, so I did. I will attempt not to get too emotional about topics, however, I was very interested in this one as I have spent the last year talking to my children about this subject. We have agreed that I will live life to the limit as long as I can and once I feel there is no more "quality of life" or if anything happens and they see no more "quality of life", I/we will stop dialysis. My poor sisters/brother still have no clue about dialysis or how I feel and I'm finally comfortable with that. I have friends who are more like family anyway. I'm still on the fence about transplant, more the fact that there is always a chance of rejection.  We revised my fistula in January and started Buttonholes which are working great. I'm not able to cannulate myself due to placement in my prominent arm and tremors in both hands but the fact that I don't need fistulagrams every 2 weeks is awesome.