losing my mind

[MooseMom]

In all of the soul searching I've done with the information you've all shared, it's become really clear that I'm projecting a lot of my personal feelings, thoughts, and beliefs onto him. I would be furious with myself if I'd been able to prevent dialysis, then ended up in that chair three times a week. I just don't think that's how he thinks. I guess I can bash my head against that wall, or accept it. What I've been doing is making us both miserable.

Of course you are projecting.  We all do it!  How many times do we say to ourselves, "Well, if it were ME, this is what I'd do."  Well, it's not you/me/the guy next door, so what we would do in your husband's position is pretty irrelevant.  So yeah, you will have to "accept" his choices, but that doesn't mean that you have to be trapped by them.  Go ahead and take your RV and go where you want to go.  If it were me, that's what I'd do!

@ Cariad, one thing you've taught me is how chronic illness can be so devasting for so many years if you are affected as a child.  I didn't have to deal with CKD until I was much older and had more emotional/psychological tools to help me cope and to also help me protect the ones I love from my outrage.  I understand your history, and I understand the choices you've made and why.   

I can understand the desire to want to "live life to the fullest", but if the price for that is spending years and years on dialysis or with limbs being amputated, then you are going to have a long time to do nothing more but remember the good times.  Lynette's husband isn't going to be able to live life to the fullest until the end.  That's the sad thing about all of this.

Wanting to "live life to its fullest to the end" sounds very noble, but we rarely have complete control over "the end".  I suspect it is code for "I can't be arsed."

[misslynette]

I can understand the desire to want to "live life to the fullest", but if the price for that is spending years and years on dialysis or with limbs being amputated, then you are going to have a long time to do nothing more but remember the good times.  Lynette's husband isn't going to be able to live life to the fullest until the end.  That's the sad thing about all of this.

Wanting to "live life to its fullest to the end" sounds very noble, but we rarely have complete control over "the end".  I suspect it is code for "I can't be arsed."

No, you're right. He's not living life to the fullest right now. He's not able to do any of the things we loved. Our traveling days are pretty much over. He's too weak to garden. It's just dialysis, home, dialysis, home, doctor, home, hospital, home. Yippee, right? 

It would be a blessing for any of us to simply drop dead in our tracks one day. That's the gold standard exit from this planet. After this most recent episode of a month in ICU, I thought tattooing Do Not Resuscitate over my heart might be the way to go.

[boswife]

it hurts alot huh missl     
We have just been through that valley but hopfully, are heading for a hill..
I hope something good will come to you, some peace mabie??

[okarol]

 

[cariad]

@ Cariad, one thing you've taught me is how chronic illness can be so devasting for so many years if you are affected as a child.  I didn't have to deal with CKD until I was much older and had more emotional/psychological tools to help me cope and to also help me protect the ones I love from my outrage.  I understand your history, and I understand the choices you've made and why.   

I can understand the desire to want to "live life to the fullest", but if the price for that is spending years and years on dialysis or with limbs being amputated, then you are going to have a long time to do nothing more but remember the good times.  Lynette's husband isn't going to be able to live life to the fullest until the end.  That's the sad thing about all of this.

Wanting to "live life to its fullest to the end" sounds very noble, but we rarely have complete control over "the end".  I suspect it is code for "I can't be arsed."

MM, definitely good point about dialysis not allowing him to necessarily live life to the fullest, at least not the way that he is practicing it. I still think I have a lot in common with this man, though (maybe not anymore, but there was a time). He said outright that that was what he wanted, that IF he were sick he wanted to just ignore it and continue living full-on, so I guess I am surprised that he is even bothering with dialysis at all. My thought was that when I went into complete renal failure I would just refuse dialysis and let myself go. It wasn't that I couldn't be arsed and it certainly wasn't a lack of caring about Gwyn. However, until you are there, who knows how a person will react, and I never reached that point where I had to decide between dialysis and death. When I was told that I would not be included in the clinical trial (4 months after I was told he would do it) I don't think I left my bed for that week. I did not share with IHD because I did not want to hear about how well you could live on dialysis, and I was fairly certain that I would not be able to keep from displacing my anger. I am so goal-oriented, so this really was not like me, but I just dropped out of my own life.

He is not living life to the fullest the way you or I would define it, but he is certainly living in defiance of what everyone is telling him to do, and it may not be pretty and it may actually be childish in many ways, but for me, that type of defiance was a way to feel like and prove that I was still in charge of my own life. And true to this spirit until the end, I became more enthusiastic about the trial every time some idiot doctor would tell me I was going to die or regret it if I participated in the procedure. I suspect many people are wired this way. Anorexia is a disorder with a high relapse rate, yet they have found when they make eating and taking care of oneself into a political statement, basically a defiant act, that is a very successful way to get anorexics to start eating again. This is why I think IHD can be such a great resource for us defiant sorts - demanding the best dialysis is completely rebellious and political in our country. That more than anything would have motivated me to continue on dialysis - for the first time in my life I understood what a defiant act pursuing the best healthcare for myself could be.

Anyhow, Lynette, I think you have the right idea. Keep following your goals and dreams. It is heartbreaking that you are in this situation and I hope you'll keep sharing and letting us support you through it all. I really hope your husband chooses to change his behaviour before it is too late. Best of luck.  

[misslynette]

Cariad, what is this clinical trial thing you mentioned? I wish Mike could get excited about something, even if it was fighting back against the lackadaisical medical care we seem to have.

There was one night when he was in ICU last April. He'd had a kidney biopsy and his platelets were ridiculous. About 6 hours after he had the procedure, he started bleeding everywhere, even from needle sticks that were days old. I figured that was the end and reminded the hospital staff to review his advanced directive.

So I was surprised later on to hear him tell someone that he'd want every effort made if he crashed again. Every effort. That really wasn't what I thought at all. But then I'm the depressed one 

[Riverwhispering]

Lynette,

My heart is with you xoxoxo   

I wish I had someone to give me just a fraction of the love you have given your husband the way you have taken care of him.    I have no one if I should need help.   

Please do what your gut tells you to do and live in peace.

love
River

[MooseMom]

Cariad, I can certainly see how defiance could be an extremely useful tool.  Fear and anger can be useful tools, too...those are the ones I'm most familiar with.  You ultimately used defiance to survive; perhaps Lynette's husband just isn't quite there yet.  Misplaced defiance, or, perhaps more accurately, unused defiance has landed him AND Lynette in a position where useful defiance may come too late.

[cariad]

Cariad, what is this clinical trial thing you mentioned? I wish Mike could get excited about something, even if it was fighting back against the lackadaisical medical care we seem to have.

Oh, it was a long process but it had to do with transplant and coming off the post-transplant drugs, so unfortunately, does not look like an option for Mike from what you've told us.

That is interesting that he wanted heroic efforts to be made should he require resuscitation. That would suggest that he does want to keep living, and perhaps that he was concerned that he was going to die. If he wants to rise to this challenge, there are many who live really well on dialysis and they are happy to share their secrets. Also, there are clinical trials on the horizon for devices like the artificial kidney, but he would need to stay alive until those options are better developed. Perhaps while you're out enjoying life, he could come visit IHD and he could learn how this doesn't have to be the end of his enjoyment. (I realise that likely won't happen, but you could throw it out there.)

Does he know about the Life or Death Committees? At one point in history he would have had no choice, a committee would have refused to give him dialysis and he would have died. Truly, there are many people who went through a protracted nightmare to give him the right to be on dialysis even if he doesn't take it seriously. I wish I knew how to motivate him. I do suspect that you may not be the only depressed one in this relationship, but perhaps he shows it very differently?

[RichardMEL]

Lynette - *hugs* this is so difficult for you - I can barely imagine.

I think a lot of folks have got in before me with some very good comments and suggestions.

I will just put my own two cents in (as usual - nobody can shut me up!!)

I don't see it that you are projecting all of your hopes and fears and concerns on him. I see it that you are *driven* by your fears and concerns to nag him etc(which he hates). And what's behing that? Oh just the simple fact that you've *loved* this man for over 20 years!!!!

By him saying "I'm not sick, and even if I were I'm going to live my life to the fullest..." shows denial. Clearly. This is frustrating for you. It would be frustrating for me! As someone wrote above he's not allowing himself to live life to the fullest because of his attitude to just eat, drink & be merry.

I too have the attitude to live life to the fullest, but I temper that with "being realistic" - when I was on D sure I would treat myself from time to time and do everything I could, but with the restrictions required by D you had to be smart about how you lived life (as in be careful with the fluids, don't eat that block of chocolate, etc). It just means a modification of lifestyle to support what you want.

I make it sound easy writing that  I know.. and I also know it isn't... but I do know that when you have the denial attitude of "I'm not sick" coupled with "living life to the fullest" and of course not being properly informed of consequences of actions (as you have suggested) then that's a pretty dangerous combination - though it seems that even if he had all the information at hand the "I'm not sick" would kick in and it would go in one ear and out theother.

The rational part of me then wants to argue "but why can't he see that there ARE consequences and that he IS sick when all those bad things happen that put him in ICU, and he can't breathe, and is physically sick etc" - but we all know how some people deal with kidney disease is hardly rational.

I would suggest you talk to his doc with the concerns you have about the information not sinking in, but I don't know that the doc is the problem as much as the patient

And at the end of the day you simply can't change him - and it's probably not a good idea to even try to (which is essentially I think what some of the others above have said). It seem setting boundaries for yourself is probably the best action you can take - as difficult as it will be when you see him suffer and wonder what will happen next... it's not worth it to you to keep fighting this. Perhaps that is your projecting on him that you want him as well as possible to live with - maybe he's over it all. Maybe inside deep down he understands but wants to "go on his terms" - I don't know.

Probably the way it is and for the harmony of your relationship you do have to take a step back and try real hard to keep to those boundaries. Let him know where you stand. Be honest. Be open... but don't nag. It hasn't worked anyway just put him offside -he'll do what he wants anyway it seems. Better to just be there and support him as best you can within those boundaries.

I hope being a part of our community will help you through this.