not going to dialysis

[RichardMEL]

Henry - I do see where you are coming from - as Sugar said it's about quality not quantity - however in MY view (and just my view - and everyone's is good because they're opinions and they're all personal not right or wrong) is that you can live a life of quality on dialysis or you can sabotage it. Granted I don't know hos full situation to be able to judge fully, and perhaps that's not fair, but you can *bend* rules, and work *with* the system/restrictions to live a life that is fufilling. That's how I viewed it. Yes, I'm 20 years younger, but I don't think that should come into it. I mean I would drink the odd coke, or have chocolate, or whatever... but I would do it *intelligently* as in make sure I had extra binders with a phos overload, or if it was potassium, to go low-K or the rest of the day to balance it out etc.

What it seems that TS's hubby is doing is way more reckless rather than thoughtful. Like that guy in little brittan "I want THAT one!" (Andy) it's think in the now and not consider the consequences - and when it all falls in a heap, as it has on many occasions with him winding up in ICU with a K over 7, or with fluid on the lungs, or whatever, then yes, I call that reckless. And the REALLY puzzling thing for me (and I admit, I do not pretend to understand how depression, or pride, or whatever it is might be contributing to these actions) is that he should KNOW from his OWN experiences that living like this must be just as much hell as working more WITH the system than AGAINST it - I mean who wants to feel that dreadful you can't walk, or you're in ICU for days, or you can't breathe, or a combination? And this isn't even including the affects on his wife, kids, family etc.

And yes, how much of this is linked to the silent/stoic/she'll be right attitude that seems to be a male thing - which I don't get myself. I know some men feel they have to appear strong and invincible and all that, but seems a bit silly when facing such a disease like this. So denial has to be part of it.

Whatever it is, and why, I guess is irrelevant... I mean not only is he suffering, but TS and others are through his choices.

Yes, we're all entitled to, and responsible for our choices, it's just difficult to hear about when it seems that things could be so much easier with a bit of effort/thought/planning.

Just my two cents. take with a grain of salt.. wait no.. salt=bad!!

[texasstyle]

Taking to heart everyone's viewpoint and they ALL have great points, but I think Richard just hit the nail on the head as they say. He has been in crisis states so many times with tremendous suffering involved, and he keeps doing the same thing over and over again.It must stem into a deep physcological reason but you get to the point that it is enough already for goodness sake. Some kind of severe denial. This is what put him here in the first place. I'll probably never understand and come to think of it, neither will he. I am angry and I can fully understand why others are too.As angry as I am about these  issues, there are many great qualities about him other wise or I wouldn't be with him. I just wish so badly life wasn'tlike this. I know that is what you guys want for yourselves as well. Here we are all together in this wierd situation about having organ fail. I'm glad I have you though!

[texasstyle]

I forgot to say, he  does not want to die. He wants to live a quailty life (free of D of course), butyou and I know that will not happen without some effort put forth. Even healthy people have to eat right and stay active to feel well.

[cariad]

Oh, Ms. TexasStyle. Many hugs for you and yes, your husband, too.

I agree with Richard and KickStart. In fact, I was thinking the same as KS while reading Henry's post. There is a world of difference between rationally discussing end-of-life issues and just doing this crazy, random, come and go approach. I don't want to insult your husband, but this sounds like the tantrums I would throw when I was a child on dialysis. I bit a nurse. I used to lock myself in the bathroom with a cup and turn the water on. Of course I never drank anything because I was afraid of my father, but I loved hurting the nurses because I was hurting.

I also want to tell Nat that I said something similar to what Gregory said once. I told Gwyn I would never go back on dialysis and did not want another transplant. Then I did a search for "kidney transplant stem cells" hoping that the world had made some sort of advances in the intervening decades. That was how I found Harvard and Stanford's study, and once Harvard turned me down, I found Northwestern's about 3 months later. There was massive miscommunication at one point where I was told that I was no longer being considered for the trial and I lay in bed for two days crying thinking about what it would be like to die, how it would affect my kids, what my last moments with Gwyn would be like. Gwyn was on a rampage at the time, managed to get the surgeon on the phone (it took a week) and after initial confusion, the surgeon said that the person who told me that was mistaken.

So what am I trying to say: If it were me, and keeping in mind that I don't know TS's husband, I would ask him "How can we approach this so that you will want to take it seriously and live?" Or whatever will open up that conversation. For me, I needed to find something new to what I had experienced 34 years prior, and it needed to be radically different. In our first phone call, the surgeon told me that I did not qualify for the trial but that "in an effort to make lemons into lemonade" he wanted to tell me that if I chose his hospital anyway, I would be on a steroid free protocol. Well, I was already steroid-free and so far beyond settling for that. What could your husband work toward that would make all of this worth it to him? I told the surgeon that I was willing to wait it out on dialysis if he would put me in the trial as soon as they opened it up to retransplants. Most nephrologists told me I was an idiot, but this was what I needed to do, this was what would make dialysis worth it to me. Happily, I did not have to spend any time on dialysis, but I am convinced that I would have done what I had to do to get this done my own way, the way that I felt was right for me.

Barring that, if he is totally unwilling to discuss this, I think I would tell him that I need to start the painful process of emotionally detaching so that I would not completely fall apart when he dies. If he doesn't want to die, then he needs to find a way to make this tolerable and stop toying with his life. And yes, I think it is selfish of him the way he is approaching this. It is definitely tantrum shaped. When I was on the suicide line we would get people talking about their plan and ask questions like "So, who's going to find you then?" It is one of the cruelest things you can do to someone in my opinion, and the people I've spoken to who found the body never get over it. If he wants to do this, he should discuss it with you and do it properly - get hospice in, let you mentally prepare yourself. I just cannot imagine the fear and stress of this situation, TexasStyle! I am heartbroken for you right now. 

Oh, and sixty is young! That's younger than my father, and he's still a world-traveling workaholic. (That's weird. Spell check recognises workaholic but not nephrologist!)

[Henry P Snicklesnorter]

.

[Sugarlump]

Henry - I do see where you are coming from - as Sugar said it's about quality not quantity - however in MY view (and just my view - and everyone's is good because they're opinions and they're all personal not right or wrong) is that you can live a life of quality on dialysis or you can sabotage it. Granted I don't know hos full situation to be able to judge fully, and perhaps that's not fair, but you can *bend* rules, and work *with* the system/restrictions to live a life that is fufilling. That's how I viewed it. Yes, I'm 20 years younger, but I don't think that should come into it. I mean I would drink the odd coke, or have chocolate, or whatever... but I would do it *intelligently* as in make sure I had extra binders with a phos overload, or if it was potassium, to go low-K or the rest of the day to balance it out etc.

What it seems that TS's hubby is doing is way more reckless rather than thoughtful. Like that guy in little brittan "I want THAT one!" (Andy) it's think in the now and not consider the consequences - and when it all falls in a heap, as it has on many occasions with him winding up in ICU with a K over 7, or with fluid on the lungs, or whatever, then yes, I call that reckless. And the REALLY puzzling thing for me (and I admit, I do not pretend to understand how depression, or pride, or whatever it is might be contributing to these actions) is that he should KNOW from his OWN experiences that living like this must be just as much hell as working more WITH the system than AGAINST it - I mean who wants to feel that dreadful you can't walk, or you're in ICU for days, or you can't breathe, or a combination? And this isn't even including the affects on his wife, kids, family etc.

And yes, how much of this is linked to the silent/stoic/she'll be right attitude that seems to be a male thing - which I don't get myself. I know some men feel they have to appear strong and invincible and all that, but seems a bit silly when facing such a disease like this. So denial has to be part of it.

Whatever it is, and why, I guess is irrelevant... I mean not only is he suffering, but TS and others are through his choices.

Yes, we're all entitled to, and responsible for our choices, it's just difficult to hear about when it seems that things could be so much easier with a bit of effort/thought/planning.

Just my two cents. take with a grain of salt.. wait no.. salt=bad!!

That was one seriously long quote!
I want to ask you something Rich, do you think there would be a hypothetical point IF you were on dialysis that you would stop?
Would you carry on regardless of how well you were ? What about 20 years down the line, 20 years of sitting in that chair three times a week,
knowing there's no prospect of a transplant saving you ? Would you not ever think the easiest course of action would be to give up?
As you say, its harder for a man to admit his feelings and to stay tight-lipped but would you really carry on to the bitter end? Suppose you became swamped with depression? As a female its probably easier to scream, shout and stamp my foot but I know inside how
difficult it is to carry on when your heart's not in it anymore. I've watched other dialysis patients killing themselves slowly as they lose hope and quality of life ...me, I think I'd just walk away before then.

[RichardMEL]

Sugar - this is something I have actually thought about more than once over the years and it links to something else I wanted to comment on in response to a few of the above posts - last year I met a woman who had a transplant 13 or so years ago - it was working well but there was/is obviously always that spectre of it rejecting/failing at some point. Now as a twist this is a woman I met through a dating site, and it was funny that we only discovered during the chit chat that we had something in common - kidney failure. Anyway the dating part didn't work out but something she said to me (and remembering that I was on dialysis at the time) was that she flatly said to me "I will NOT go back on dialysis. If/when this transplant fails tht's it" and she was absolutely certain of that. Now this is a young lady of around 40 - and that very definite attitude hit me at the time. Now I did not question her on it, or argue it out with her (I respected her choice and didn't feel it was my place, not having been in her specific situation, to even try) but it gave me pause to think, and this is where I come back to Sugar's question about long term dialysis maybe without hope of another transplant etc.

This is so hard, because I often sat in that chair loooking at some of my fellow patients - some of whom, sadly, were not eligable for transplant - either due to age, or other complications. And I would think "How do you come in session after session, week after week, year after year when this is all you have for the rest of your life"? I struggled with this question when I turned it around and said "What if that was me?" (and it still could be at some future point).

I honestly can't answer that question with any sense of what the real answer would be - because I'm not there and I know that if I ever am my personal situation will probably be so different that I don't know how Iwill feel.

Having written THAT as a bit of a cop out I would like to think that because I had a pretty positive experience (all things considered) with dialysis for 4 and a half years - as in I was well enough to work pretty full time, and lead a reasonable life - that I would keep going - specially if I was of an age where I felt willing and able to still contribute. If I felt I had no quality of life then I think yes I would pull the plug - it is all about quality after all.

However I recognise that I am the sort of person that tries to focus on positives in life and grab hold rather than focus on negatives. Not everyone is like that.

TS thank you for your response to my comments. I  wish I hadn't hit a nail anywhere though. See it's funny =- hubby doesn't want to die, yet he's doing things to hasten that proicess - and yet no how many times he's told this, he can't quite make the connection that in order to have that quality of life you want, you need to sacrifice some aspects of that (ie: drinking lots, eating junk etc) to achieve that. I had to exercise a fair deal of willpower at times to keep things going, but I always rationalised to myself that "this sucks now, but this is for the longer term good" and most of the time I understood that and put up with the pain looking at the so-called "bigger picture"

I also want to comment that a couple of years ago we had another member in a very similar situation with her husband who was also very non compliant. She chose to leave him - that sounds horrible but those of us who shared her situation and story I think all understood that in the end she had to do it for her sanity (and he was pushing her away as much as anything else). I think she was better off for her choice, but it is never an easy one and brings up all kinds of emotions I would never want to go near - having witnessed part of that (from the point of view of being on here and reading what she had to say) I can definitely understand the suggestion to leave. Sometimes, when it's too hard, you need to think of yourself an dyour own sanity. Maybe a compromise would be to spend some time away? Tell him you're taking a week or two break. Let his mom look after him (and feed him as much junk as he wants and see what happens! ) . I won't bother saying it might be an eye opener for all concerned because he's had so many of those now I've lost count.

[Sugarlump]

Thanks for your honesty x
I think everyone has that point, we just reach it at different times.l I suspect the longer you have a transplant, the harder it is to go back

[billybags]

Tex, thinking about you to-night, just on my second glass of wine. Have you had one your self.

[willowtreewren]

 

[texasstyle]

Today, I spent the day doing things just to make ME happy. It was dialysis day anyway so it was mostly napping here. I felt productive! I'm to continue my new trend.

[MooseMom]

I've just read this entire thread.  I'm not sure I have anything new to say, but I do wonder what kinds of conversations have you had with your hubby, TS?

Everyone reacts to CKD differently, both physically and emotionally.  I personally cannot imagine doing everything humanly possible to keep myself well, but there are plenty of people who are not like me and who are awfully cavalier about their health.  Why is that?

You're not stupid.  He's not stupid.  You both know how important it is to go to dialysis.  He doesn't want to die, but he is making it hard to live.  He knows about the renal diet but chooses to ignore it, anyway.  Have you ever asked him why?  Do you think that this is his way of channelling his anger that he is no longer in control, that he can no longer do whatever the hell he pleases and has to work so damn hard all the damn time to stay healthy?

CKD and dialysis can consume your entire life so easily.  I'm not even on D yet, but every damn day something reminds me that I'm sick.  The mountain of pills each day.  The Gift of Hope box that comes each month.  The constant thinking about this food or that food.  It never stops, and worse, it's never GOING to stop.  We will NEVER GET WELL.  NEVER.  EVER.  It's maddening.  It's infuriating.  It's soul destroying.  And anger can sometimes result in subconscious self-punishment.

Anyway, I'd be very interested to know what would happen if you sat him down and asked him what he wants.  "You have this disease that requires this treatment plan.  It is hard work.  How do you want to proceed, and why?  Let's talk about the consequences of your choices."  Try not to be judgmental.  Just let him talk about what he wants and about getting what he wants is possible.

He's probably so sick and tired of having so many people telling him what he has to do.  While he is lucky to have all of you to care, maybe he is rebelling.  The ideal would be for him to decide for himself that he is ready to do what is necessary to stay alive and relatively well.

I apologize for not knowing the answer to this, but is home dialysis a possibility?  He might feel like he has more control and would therefore take better to the responsibility.  Some non-compliant in center patients can really blossom when they dialyze at home.  His control over phos and K would be better, and he'd have more dietary freedom.  And he wouldn't have so many people telling him what to do.  It might be more strain on you, though, and it would be worth thinking about if this is something YOU'd want to see happen.

Such a frustrating situation.  This is all very interesting, though.  It reminds me that it is not true that we are given only what we can handle.  Your husband is not handling this.  He is not coping well.  I can't say that I blame him.  Life must be so very hard for him.  Knowing that you will never be rid of this horrible disease...It's enough to drive anyone into the abyss.

[RichardMEL]

MM I think you hit it on the spot in some respects - rebelling.

I think I wrote about this in one of the myriad of threads about TS and her wayward hubby. Some people just get so sick and tired of being told what to do and one way to respond is to react like a teenager and rebel.. Whatever you say I won't do just because... and can you rationalise with some teenagers? no.

I think that's going to be the main problem with trying to sit down and talk to him - none of this is very rational and I can see the most common response will probably be to get defensive. I mean why keep hassling me about this? Unfortunately because you care that doesn't matter when the message just doesn't want to be heard. It's almost like the parents in "Peanuts" you hear them talking but you can't understand it - it's just a muffled blah blah blah.

As you say everyone involved are intelligent people and know what the deal is. This isn't an education issue, it's an attitude issue, and only that can be resolved inside TS' hubby.

Anyway texas I'm GLAD you did stuff for YOU today. It seems you can't do much else for hubby at this point (you didn't mention if he actually went or not???) so yes, doing something for your wellbeing might be the best thing you can do at this point in time.

lots of hugs....

[flipperfun]

Hi Texas,just sending love and support to you.

Just a thought, but I recall my sister telling me (about her father in law who had terminal cancer) if you don't talk about it, it's not true.  In other words, denial that something is wrong.  I suspect your husband does not want to talk about it at all.  Horrible for you I know.

I also know that another family friend of mine, had terminal cancer last year.  I was amazed that the whole family talked in front of him, and included the cancer patient, plans about his funeral.  He declined another course of chemo knowing the outcome.  His family were devastated at his decision, but as he said, it was his decision.  That is where I am coming from.  His non compliance, is his decision.  Rebellion, denial, all sorts of explanations could be applied. 

But for you, the best advice I can offer, is that you can only respond to your emotions, you cannot change someone else's.  Learn to change the things you can change and learn to live with those you cannot.

Life sucks.  Find some peace within yourself and try and find comfort where you can.

[MooseMom]

Richard, I'm not suggesting that TS sit down with hubby and try to RESOLVE anything.  Only HE can resolve it.  TS needs some answers of a different sort.  People can discuss illogical feelings in a logical manner.  TS and her hubby need to find out why he is reacting in the way that he is.  Maybe getting those answers will change his behaviour, but maybe, probably not.  I think if TS could discover the "logic" behind his inaction, she might find it easier to accept.

There are some teenagers you can't rationalize with, but those are usually the ones who feel that they aren't being listened to.  Ts's hubby is communicating all kinds of things.  He's communicating anger and resentment that he is in a less than optimal situation that he didn't ask for.  He is communicating anger and resentment that suddenly he has all of these people telling him what to do, when to do it, how to do it and if he doesn't do it, then he's gonna be in trouble!  He probably feels like he is being treated like a child, and his behaviour is HIS way of talking, HIS way of saying, "Screw this!"

How many teenagers do you know who complain, "No one understands me, no one listens to me?"  So, maybe the answer is to try to understand, try to listen.

TS, the idea is NOT for you to do the talking.  The idea is to let HIM do the talking, and if he doesn't want to talk now, create an environment where he might want to talk later.  He's heard everything you have to say.  Has anyone listened to what HE is trying to say?  I mean no disrespect, but a caregiver is a different animal than a patient.  For all the hard work you do, there is a fundamental difference...you are not the one who is sick.  You are not the one who has to wrap your head around never getting well.  And Richard, you had the hope of transplantation, and your dream came true.  TS's hubby doesn't even have THAT hope.  It's a lot to take on, and there is a lot of grief and loss involved, and TS's hubby is going to have to wade through the murk.

TS, I don't want to tell you what to do!  You've done everything you can to support your husband in every way possible.  But I am just very curious as to why he is reacting in THIS way and not in some other way.  I'd be very interested to hear HIM tell you what HE wants and what is going on in HIS mind.  He shouldn't have to justify his feelings.  They are what they are.  Even teenagers eventually become rational people, particularly when they feel that their feelings and fears are given validity by the people who love them.

The benefit for you in this, TS, is that you will finally understand why he is doing what he is doing, and that may lead to understanding, acceptance and peace for yourself.  But if you don't think you'd gain anything from this sort of conversation, then don't do it.  Maybe you can suss out on your own what's going on in that man's brain.  Once you think you have it figured out, whether it be by listening to him talk or by osmosis, maybe then you can either help him live or help him die.  Or maybe you will come to the conclusion that you can only really help once he really lets you.

In the meantime, just love him and try to remind yourself that he is struggling, and be grateful that it's not you who is sick.  Deep down inside, he's probably very frightened, and men aren't supposed to feel fear, but those feelings have to go somewhere.  Some people just become inert in their terror.  Maybe that's what is happening.  I wouldn't blame him.  This whole this is utterly terrifying.

Take care of yourself.  I wish we could help you solve this.

[Sugarlump]

Moose-y you are a very wise woman. Your comments really touched me.
I really believe its about control, when your life is out of control or feels like that, you hang on to the things you can control. However unlikely or unhealthy, but because you can at least control that. And one small step from there to rationalize what you are doing. You don't really feel other people's pain because you can't see beyond your own.
KF is a very fragile existence, when everything is going well it can all so easily topple into chaos... and when you're in that chaos you don't believe you'll ever get out of it.

TS. Remember sometimes you have to step back from being a carer and be the person you were before. For yourself as much as him.
     Take care!

[KICKSTART]

First of all ..good for you Tex for having some me time 
Now then, that wayward hubby of yours ! Plenty of people have given you , their opinions and advice but i think your hubby is just being your hubby ! He doesnt have to feel anger or anything else to do what he does. Ok he has had a couple of close shaves but i bet in general, day to day, he feels pretty much ok ? Thats enough for him , he is getting by doing what he is doing and its hard to think things might change ( otherwise we would all live like saints and never do anything to abuse our bodies, i mean all people, everyone) but we all eat , drink , do things that we know are not good for us ! I dont think there is some deep rooted reason or denial (all though you know him best) I just think he is thinking well im doing ok doing what i do, so thats good enough for me !
Ive NEVER stuck to a renal diet in 10 years BUT to balance that im not stupid either, i just have a bit to satisfy my craving , but then again im not on a transplant list, is hubby ?  To be honest with that in mind i have thought , well if this is my life now im not going to deny myself , but i balance it by being sensible with it .

[MooseMom]

I think KICKSTART makes a valid point.  Maybe he doesn't need psychoanalyis but, rather, he just needs to be left alone to get on with it.  The question then becomes "Is this good enough?"  Maybe it is.  Maybe he doesn't need to do more than what he is doing, but I have a suspicion that his body is going to eventually start yelling at him that no, this isn't good enough.  Maybe I have missed something in this story, but his physical condition doesn't seem quite stable enough just yet for him to be able to be quite this cavalier.  I could be wrong, though!  TS, you are the only one who can guage how "sensible" he is.  If he is like KS, he will know when to start being sensible.  But not everyone can be like our KS!!

Sure, we all lapse.  We eat and drink stuff we're not supposed to and we're happy to live with the consequences.  But in your case, TS, what do you think hubby expects from you?  I don't want to generalize, but a lot of men just do what they want with this tacit understanding that wifey-poo will pick up the pieces should he crash and burn.  Does anyone ever notice the paucity of men who post in the caregivers forum?  How many men post about the problems they are having getting their wives to take their pills or go to dialysis?  Not one that I can recall.

[KICKSTART]

  How true MM  i dont recall hubby's posting either ..well maybe mine would if i had one 

[cariad]

Oh, mine would have posted most definitely before my last transplant. Well, actually he hates typing because he is so crap at it, but he would have loved to share some of my more dangerous behaviours with the group, who probably would have wanted to smack me.

Oh well, missed his chance. IHD is my territory!

I do certainly think you have a point though, MM. It does seem to be the males who most often need to be the ones in control and not feel as if they are being ordered around all the time. Both dialysis and transplant can make you feel as if you're a naughty 12 year old caught smoking behind the bleachers. I understand the need to exert your own autonomy, but I think there are more productive and mature ways to do this, obviously, than how TexasStyle's husband is going about it. Still thinking of you, TS.

[MooseMom]

Well darn...we didn't get the chance to fuss at cariad.  That could have been such fun!

Sure, there are more mature ways to exercise one's autonomy.  Maybe we should list some of them for TS's hubby!  Maybe we should just all show up at TS's front door and smack him into submission!  He wouldn't dare defy the will of IHD!

[texasstyle]

Ihave decided that during the upcoming week I am talk about all these important issues. One at a time, not to bombard him.I think that is the best & hopefully I'll get some answers or at least "feelings" to come out. I having a pretty decent day agin, doing something for myself!  Thanks family!

[MooseMom]

Ihave decided that during the upcoming week I am talk about all these important issues. One at a time, not to bombard him.I think that is the best & hopefully I'll get some answers or at least "feelings" to come out. I having a pretty decent day agin, doing something for myself!  Thanks family!

I know these will be very personal discussions, but if you feel like sharing them with us, I know we'd all be very interested to hear what he had to say.  I think it would help a lot of us to better understand the psychological effects of chronic disease on different kinds of people.  I'd bet that in the not too distant future, we'll get another new member whose husband is very similar to yours, and your experience will be so helpful!  The more YOU learn, the more we learn.  But if you don't feel right about "reporting back" to us, then don't.  We don't want to intrude.

[Hazmat35]

haaaaaa.. that's some real multi-tasking going on there! I wanna smack him too for this behavior. Other than the health issues we deal with, he is a super nice guy. This however is not very nice of him. I was just thinking, I know with Liver failure those kinds of toxins build up and can cause confusion even coma, but can the same thing happen with the kidneys since the toxins are different? I do know the dangers of some of the kidney toxins (k etc...) Is there an ammonia level that builds up too?

A girl in my center (she was 20 years old) died recently from Uremia.  It is a build up of toxins in the body caused by ESRD and Kidney failure. 

YOUR HUSBAND  YOU

[sutphendriver]

I had the same train of thought as your husband when I was first back on dialysis.  i drank that crap, tastes horrinble and makes you poop like a goose.  i didnt realize it until my wife pointed out when i skiped dialysis i became easily confused, quick to anger, loss of coordination and on and on.  It took my wife sitting down with me and listing out what was happening.  I guess I felt I was different than "those sickly dialysis patients".  It was a real wake up to hear my wife tell me how bad I had gotten.  My potassium was 8.9 my PTH was 1400. my pottasium was 10.0 creatnin in the 20's and my BP was running 180/120's.  I thought I felt fine.  All the above is now in "normal ranges" and I am on the list for transplant and do not miss my treatments.  I feel 1000% better than when I thought I was "fine".  your husbands wake up call will come, just hang in there.