Had to move on over here

[The Noob]

i have to comment here. forgive me if it doesn't come out right, i am on the second cup of coffee.

i have known vicky for almost 2 years. she is a dear friend. she has struggled through so very much she couldn't begin to post here.

lord, my head is full. i agree with ReRun. you cannot make an ADULT do anything. and worrying, suggesting, all the help in the world is not going to work if the patient doesn't want it. any nurse or doctor will tell you the same.

i see this here. patients come in the clinic doing fine. but leave their partner out in the heaps of snow or excessive heat, to get in the door by themselves. some are worse off than the patient! they are on crutches, in a wheelchair, etc. yet here is the patient completely disregarding their partner, as though they are a hired slave. one day i got mad and said to them: whats the matter with you? get off your butt and help yourself!". well, it worked.

we have been at this for almost 2 years. we got to a point where there was no marriage. only nurse and patient. i felt crazy alot. i felt trapped. there was no help, no respite, no concern for the caregiver. nothing but stupid comments like stay strong, stay positive, get your "patient" to do this or that, all of it BS to keep the caregiver doing what they do because no one else wanted to make any sacrifices.

i saw my DH doing this and finally got to the point of leaving. i bluntly told him he was either going to do what was required for his own well being, or i was leaving. i was not going to go down with him. i was willing to be there and help him, so long as he was willing to help himself.

this is not a helpless baby or child we're talking about here. this is an adult, with choices, and he is making the choice to do what he is, good or bad. and thus, he will have to reap the consequences of those choices.

there is a woman at the clinic, a wife, who has been caring for her husband for 7 years. same scenario. he is bitter, angry and non-compliant, and my guess from knowing him, is he was this way long before he got "sick". she is half crazed most of the time and he is a tyrant. but again, she allows it and makes excuses for him. i told her flat out, i will only stay and do this, so long as DH is willing to do his part. if he became this way chronically, (which is what vicky is saying) i would have no choice but to leave. and i wouldn't feel guilty a bit. because guess what? i am a human being. i am important and i have some rights and needs too. i told my DH that either he wanted a wife or a nurse, he couldn't have both. if he wanted a full time nurse, that could be arranged. he decided he wanted a wife. i think that was a good choice. because believe me, at that point i was ready to go.
i refused to stay doing all i do for him and the medical world and the unconcerned family, if he was going to become an infant.
when he was really truly sick, i nursed him. no issues. but i was always there pushing him to get going, not to give in. am i a hag? sure. didn't mind a bit. when he had recovered enough to be stable, you bet i was there not taking no for an answer.
what does he do today? he drives himself to the clinic. he manages his own meds and diet. he has not needed depression meds (though some counseling might have helped a time or 2). when he starts the laundry list of medical complaints, i tell him to call his nurse. i point him to his computer to do the research for himself. i remind him that he is an ADULT and what/how he does is largely up to how he decides to manage it.
i will put up with it just so long. i will no longer allow him or anyone else to manipulate or take advantage by guilt tripping me. if i am wiling to be here to do all this, damn it he will be too.

i tell you something i learned, and it may be just in my case, who cares. but when a person is dx with a long term illness, everyone is happy to guilt trip, praise, encourage the caregiver who takes it all on. because they don't want to do it.

we are a team, and the day he decides he doesn't want to be, is the day i say OK. here ya go!
in the beginning of this i didn't feel that way. but i do now. its just too much of a load to put on your partner long term without working together. the caregiver has rights and needs too and is a human being just like the "patient".

to qualify myself, i will add that i have survived many painful surgeries, 5 difficult C-sections, cancer, diabetes, spinal and heal bone spurs and a host of other ailments, as well as very rough life situations. i did all i could to take care of myself through this because i instinctively knew, "it was all up to me" on how i recovered.
and if recovery wasn't an option, then no one or nothing was going to deprive me of what quality of life i had.
i have been sober for almost 12 years. i learned early on in AA that my recovery was between my higher power and me. if anyone wanted to help me when it was truly needed, that was gravy. but in the end, it was going to be me WANTING to get better.
i think sometimes that if the nurses, docs, counselors would do this pushing when its needed, some of these patients wouldn't just give up. and they would view themselves as a person with an illness, not a illness with a patient attached.
when my kids were little and fell or cried or hurt themselves, i would come over and see how bad it was. i would hug them, then i would urge them to get up and keep going. not because i was a mean momma, but because i wanted to raise strong people.
there is just so much you can do for an adult though. you can only help someone who wants to help themselves, and only to the extent they are willing to allow the help.

sorry for the long rant. wheres the icon for a "soapbox"?

ps: two of my daughters are STNA's. they tell me that the patients who make it are the ones who keep fighting. the most difficult patients they have are the angry, bitter, self important ones who refuse to do anything for themselves and feel it is their right to use/abuse anyone within reach.
 i can recall so many times of telling my own patients FIGHT DAMN IT FIGHT! FIGHT for your own recovery. I have said the same thing to women i have sponsored in AA. some, in the end, i had to just walk away from until/if they were willing. otherwise i was wasting my time and resources and they were better utilized on someone who did want to recover. its a hard truth, but there it is.

[The Noob]

with all this in mind..let me add i just realized my underwear are on inside out...

[MooseMom]

It really makes me angry reading all of these posts about patients who are selfish enough to not bother looking after themselves.  I agree with monrein in that having a chronic illness does not give you an excuse to heap everything on a partner, and both patient and partner/spouse have a responsibility to look after themselves for the sake of the other.

I think about how effing hard I have worked for the past seven years to keep myself healthy so that I won't become a burden on my husband.  For seven very very very very long years, I have done the diet, swallowed the 30 pills a day, attended all of my appointments, done all the paperwork, faced the fear, asked the questions, read the research, talked to the experts, all so that my husband won't be bothered by my ailment.  On top of that, I do all of the housework and the gardening and everything that needs to be done to provide a gentle, quiet environment so that my husband can come home from work and relax.  I come on here to vent so as not to interfere with my husband's peace of mind (don't get the wrong idea; he is very supportive, but one can only listen to me and my woes for a short time!).  And then I read about these people who won't lift a finger to help themselves, much less help their healthy spouse.  I do not understand it.  And don't tell me about depression.  I feel it, too...the depression, the anger, the resentment, the fear, but I'll be damned if I am going to leave my life in the hands of my spouse who, despite being supportive and kind and intelligent, is NOT a doctor and is NOT responsible for my treatment.  Now, if I am deathly ill, that's one thing, but good dialysis is supposed to be restorative and not an excuse for sitting on your ass while someone else waits on you.

Just about everyone who posts on IHD is sick, but few of us sit around and do nothing.  So while kidney disease may be a catalyst for some of these behaviours, I respectfully submit that the lazy toads with renal failure would find some other reason to be a lazy toad if they didn't have renal failure.

I don't mean to sound harsh either, but I personally cannot imagine putting someone I love through such a ringer.  Sadly, out of the two of us, it is my husband who doesn't take very good care of himself, and I worry about the time that I have to become HIS caregiver, and I don't know if I will be in good enough shape to do that.

And I agree with The Noob when she says that people give lots of praise, encouragement and/or criticism to the caregiver in lieu of any real practical help. 

All of this is enough to make you put your panties on inside out!

[cariad]

Interesting perspective from everyone. This discussion is going into uncomfortable territory for me, because I do not believe it is possible nor wise or fair to generalize from one person's situation.

First off, I completely agree and have already stated that there is only so much anyone can be expected to accept, and if Vicky knows deep down that she needs to get out of the marriage, then that is a perfectly valid decision and I am glad to see that she is getting support from other members, especially Noob as they are already close friends.

However, I do believe that "doing everything one can" is a flat-out judgmental call and needs to be made by the people living the situation, not over the internet. Who is to say what one patient can and cannot do. Make no mistake, a person with suicidal depression IS deathly ill. I feel that if we let ourselves go too far into judging others in renal failure, we will find that those judgments will come back upon us one day, probably when we can least tolerate it. I have mentioned my viral meningitis and Gwyn's reaction to it before. Viral meningitis is not a serious illness, and the self-critical loop in my head that was playing after that incident was telling me how lazy I was for, to give an example, coming downstairs after Gwyn had made dinner, ignoring my children, sitting at the table and eventually just saying "I just want to go back to bed." To which Gwyn responded that I should do just that.

All I could think was what SHOULD be, that I SHOULD be over this, I SHOULD be back to full function and the fact that I was not made me fear that everyone would think I was faking (possibly Gwyn) and that this was going to be my life forever after and that I would better serve the world, or more importantly my kids, by finding a way to end it. I have been suicidally depressed and too ashamed to admit it. It does read as laziness. I had a debilitating reaction to Lariam after our African honeymoon, and this was before renal failure was coming back to haunt me. There was nothing physically wrong with me I guess you could say, but my mind was a deadly, hellish prison from which I could not escape.

One of the biggest barriers to completing suicide is, ironically, getting the energy to do it. Someone with that level of depression, which is what I am hearing from Vicky's description of her husband, coupled with renal failure, is in grave danger. They don't need the energy to complete suicide, they just need to do what is natural for profoundly depressed individuals, and that is nothing at all. Of course, that does not mean that Vicky needs to give up her life for him, and she should not stay out of fear that this or that MIGHT happen and she would therefore feel responsible for it (because it would not be her fault in the slightest!). I am all for putting on your oxygen mask first, and then helping your child or spouse or whomever. I think that even with my prolix style on this forum, I could never adequately describe what that type of depression was like, just that it was not a matter of won't do it was most definitely can't do. I think loved ones become traumatized, too, which is why I will suggest again that if Vicky is not in personal counseling (not couples counseling) that it is something to consider.

I doubt this really helps this particular, heartbreaking dilemma, but I needed to say it. Everyone who comes by here, everyone on earth, is a unique individual and we can only project so far. Patients do need to do for themselves, it is not just what is fair, it is so healing. Let's not forget, though, that there are instances where people look like they are just fine and SHOULD be able to do whatever, but what is preventing them from doing it is as real as cancer or kidney failure or any other illness you can name.

[The Noob]

WOO HOO MOM! You Go Girl! Did I tell ya I love Ya!

sad but true, a caregiver leaving the "patient" just might be what the doctor ordered. That in itself might just be enough to catapult them into caring about themselves rather than giving in to it.

so, Vicky has done her ALL, under very adverse circumstances (don't know if she posted this or not but when her H is on hemo at clinic, its a 3 hr drive each way, and this in the winter in the PNW).
And now that she is empty, drained, depleted, and ready to collapse, how much support are we going to offer her?

i want to know where the heck his family is? he has family. but like me, they have abandoned ALL of his care to her, without even a respite once in awhile.

Not too many years ago, when this happened, a good majority of families pulled together. everyone helped and responsibilities were delegated and that "patient" was not allowed to lay in bed and hasten their demise.
i live in an Amish community. just recently, one of the younger mothers (7 babies) was in the hospital for a week and is now home. while she was there, all the menfolk came and helped do the farm chores. the mother and sisters and other women cared for the children and home.
when i went to visit her a few days after she got home (took a treat to offer and pitched in to help too), there was all her sisters canning corn, minding the children, cleaning the house, hugging her as they went by, and the grandma was on her way. this young mother wasn't able to do much, but she sat at the table doing the mending. she threw a log in the cook stove every so often. there were books on the table she had been reading to the little ones.
outside, the menfolk were all working together, and this means even the little boy kids, all doing chores. and they were all smiling and happy! 

each farm has a Doty House. this is where the grandparents/great grandparents live out their retirement. they still help out with what they can and are an active valued member of thier family and community.

we are not Amish. but if we needed help with something, they would drop what they were doing and come help. and be offended if we offered payment.
likewise, they have come to ask to use the phone, get a ride somewhere, and many many times we have helped with farming, frolics (barn raising) canning, doing honey, many times i have walked over and picked up the baby, changed a diaper, rocked it while mother did something else.
this is how it is supposed to work.
Vicky, and None of Us, should ever be left to fend for ourselves with no help or support system.
what the heck has happened to the Good Old Days?

[The Noob]

one of the biggest obstacles in this Cariad, is that the person in question is an adult, judged to be in his right mind, and therefore there is not a thing anyone can do for him until he is ready to do for himself.
even a nurse/doctor/therapist will tell you the same.

when my DH went through this, i urged him towards counseling, meds, etc. i asked the doc and the nurses and the SW. they all repeated the above.

i have had terrible times of depression in my life. unfortunately, some of those times took losing everyone and everything i had before i woke up enough to get help. all the good intentions in the world wouldn't do a thing for me until i was ready.

 

[MooseMom]

Cariad, you are absolutely right in that there is great difficulty in defining what "doing everything one can" actually means; it will be defined differently for different people, and even the same person will define it differently in healthier times than they will in sicker times. 

If Vicky's husband is indeed suffering from suicidal depression and resulting shame, then that is a horrible ordeal to live through, and I would fervently hope that that specific need be addressed.  Your description of what that feels like was very eye-opening, and it does serve to remind us that all too often, a chronically ill patient's psychological health is ignored.  This has been a real irritant for me.  I personally feel that anyone who is diagnosed with a chronic, incurable illness should immediately be referred to a mental health professional, or at the very least should be given a list of local therapists for their perusal.  The patient could then choose when/if to see someone to help with these issues instead of being left to wallow in despair.  When my son was diagnosed with autism years ago back in the UK, we had access to family therapy if we wanted, and I think the same should be offered to both patients and families in this terrible situation.

Fundamentally, I think it is both folly and extreme negligence to leave such patients and their families to just fend for themselves.

Interestingly, I am reading Ann Patchett's newest book, State of Wonder, and Lariam plays a rather major role in the psychological makeup of the main character...just a bit of a side note there.

Back on topic, though...I may be wrong, but it seems to me that what both Vicky and The Noob are railing against is the lack of support from friends and family, and this is a complaint that we, sadly, hear about so often here on IHD.  Chronic illness is a lonely road in our society, it seems; maybe it has something to do with the "rugged individualism" we seem to value so highly.  Maybe we just don't know our neighbors anymore, and our families are tossed all across the continent because that's where jobs or husbands have taken them.

Anyway, Cariad, thank you for your insight as it is particularly valuable to be reminded that we are not all alike.  The fact that I insist that I will "do everything I can" is really irrelevant.  It means nothing other than right now, I will do everything I can.  It doesn't mean that a year from now I will be saying the same thing because I may be too ill to do anything at all.  And it certainly does not mean that anyone else is obligated to do "everything they can" just because that's my own personal motto.  So, thank you for reminding us that we mustn't be judgmental nor should we project; that's largely unhelpful.

[cariad]

Oh, Noob, I totally understand the legal obstacles in this. My brother checked himself into a mental institution when he was around 20. If he had not been willing to do that, there would have been nothing my parents could have done for him beyond a possible 5150, and then he would only be held for 72 hours max. The mental health care in this country is shameful. That whole saga (which was only beginning all those years ago) taught me a lot about the fine line between assistance in times of need and outright coddling that in the end only destroys the person on the receiving end. There is no love lost between my brother and me, he was a violent and wildly angry presence in my life, and I wanted and want nothing to do with him. Still, I see the waste of it all, the fact that he really needs someone to insist that he do something for himself (probably take meds, which my mother has convinced herself are just damaging poisons churned out by a corrupt pharmaceutical industry). Do I agree that the pharmaceutical industry can be terribly corrupt? Of course, but with my brother, he quite literally has nothing to lose by trying them, and until someone can explain the often disheartening process of trial and error that is part and parcel of psychotropic drugs, and my mother stops believing every op-ed she reads in the New York Times or from her European doctors, I see him wasting his life away. He does not have a chronic illness beyond depression, but perhaps he wishes he did. I do know that no one would chose to live as he currently does, and has done for a couple years now.

Thanks for taking the time to really hear what I was (clumsily) trying to say, MM. I noticed that I wrote that what someone can and can do is a "judgmental call" rather than what I meant, which was a judgment call. I guess that little Freudian slip says it all. I was feeling defensive, which I believe makes it difficult to concentrate on my point rather than just telling me to calm down and stop taking everything so personally. I appreciate that you looked past that surface. It is hard not to feel guilt and shame when in the throes of a mental illness, and I think some would find it a weird relief to have an illness that everyone can recognise and see. When I reacted to Lariam, I did not feel like I could tell a soul, only Gwyn knew. I even felt like by blaming it on the Lariam, maybe I was just making excuses and that it was not the Lariam, it was just me. Depression was both easier and harder when renal failure really hit me. Easier because people could easily understand and "allow" it - I had good reason to be depressed. Harder because when people think you have good reason to be depressed, in fact perhaps you "should" be depressed, it is not seen as a big emergency. Which probably goes to your point that mental health education/assessment should be offered to anyone with any major illness.

What a coincidence about your book. It is real, though - Lariam is a monster drug. In South Africa I heard tell of visitors up all night, talking to themselves, crying uncontrollably, climbing onto rooftops, self-injuring. The people i stayed with banned it from their premises and have seized it from their guests when necessary.

I heard an NPR piece about the difference between autism care in the UK and the US, and how many American parents cannot believe how far other governments go to really care for ALL citizens. I would love to see a return to neighbours all pitching in to help each other, and I think things are coming round to that, very slowly, because so many people have come to realise how lonely and empty life is without community and human connections. We have the Milwaukee Time Bank here, a fledgling organization that basically lets you earn hours by performing volunteer tasks for others, and then you use those hours to purchase volunteer time from any other member. It is basically a barter system, and 100% free to join and participate in. I hear stories about neighbours coming together to build homes, install green technology, dig people out from a blizzard, whatever. Economic anthropologists argue that community and identity is now based, sadly, on products. We have people who feel so strongly about a company (our local example would be Harley Davidson) that they join clubs based on the weak bond of both owning the same machine. And this a reaction to several things, the dissolution of other choices being a major driving force. We all want to a feel a part of something bigger than ourselves, feel like we really belong somewhere, but this country does not offer that opportunity in many areas.

I honestly wish I knew what to suggest to Vicky. Her husband sounds depressed into paralysis, but it could be that he is just coasting along because he can. In the end, it does not really matter because she is at the end of her tether and it does no one any good to stay in a miserable situation for someone else. Of course caregivers are people and as valuable as anyone else! I don't think anyone was suggesting otherwise. There are surely many examples of lazy, hateful, selfish patients with a ferocious sense of entitlement, and then there are people like me who worry that they will turn into this, who do their best most of the time but have to cut themselves a break now and again or collapse into self-hatred. I have a very understanding spouse, perhaps too understanding in that I can get away with being lazy. He was not always that way, and I was not always where I am now, which is stable and healthy and desperately wanting to do my part.

[The Noob]

hey had a quick minute to jump on here before rest of night chores.
please no one take offense, please.
but i would like the MODS to consider moving this thread to the "spouse/caregiver section".
it was started by a caregiver, about what that caregiver is/has been dealing with, and not from the "patient" themselves on D, so i think its more appropriate there.
seems like a good many of the replies are from D patients, and though they mean well, might be caught up in defending themselves as this is in the D section.

the Caregiver section is just for Caregivers. Lets move this there?

I don't agree this whole thing is about the lack of community support. I personally believe it is about someone, as Cariad said, "coasting because they can". And because of that, the Caregiver is at the end. It might wake up the person on D, and it might not. And even so, it still may be too late.
Either way, I will be sorry to see Vicky lose what support she has, this site. But i will continue to be there for her and will encourage her to build a new life and keep moving ahead. Its going to be a long road no matter what fork in the road she takes.
Vicky:

[lmunchkin]

Noob, your mentioning the lady in your clinic, reminded me of myself somewhat.  When J. was diagnosed in 2004 and reality had hit me, I "flocked" to him to "help".  I really did do this to myself!  He literally did not have to do a thing!  Why should he, he had me to do it all.  I wore myself out and I was wrong to do it.  This was before his amputation's.

Well, when they amputated his leg (BKA), it infuriated me to no end that where he went to rehab, they did not want me staying over night or to come all day for a visit. Per insistance of his VS, I was like what the heck, he is my husband and I need to be there.  Well long story short, I was wrong again!  They did not need me there and nor did He!  I learned that he could do alot of things, and without my help! 

So in this case, it did not take me threatening or ultimatums on my part, it took a Rehab hospital and their staff with my husband, to show me that he could do things on his own.  On the way home from Rehab, my husband told me it was the best decision we made!  He felt like he was useful again.  Now, he helps to do things that he "knows" he can do.

Sometimes, I feel like when an illness like this "comes upon" us without warning, we just want to reach out to help, but inturn hurting ourselves!

lmunchkin   

P.S. Oh Cariad, I never have those "Fruedian slip ups",  LOL  Yea Right!!!!

[Vicky]

Today was a rough one.  I tweaked my back at work about an hour after I got there and stayed another six hours before i could leave, bad stuff.  Dave had gone for his "walk" and then went fishing.  I got home ahead of him and he asks how work was I told him what happened and he was like oh.  My sister called and said she was going to take me to the hot springs to soak my back and hopefully help it.  Dave was in bed again so I limped in to get my shorts and he says what's wrong with you!!!! I was like OMG are you fricking nutso or something, told him sister was taking me to the springs and he got all disgusted with me and nasty talking to me.  He can't get in the springs, and the few times he has gone with he sits there on the bench and complains he's cold or tired or anything else so I get out and go home before I"m ready.  This seriously is like taking care of a two-year-old and I've raised my kids already I don't need to raise another one who threatens me with this and that.

Back in January we went to Salt Lake City, six hours away, for him to have his PD tube replaced.  I wanted to find the doctors office so I would know where to go to and I thought his appt was within 20 minutes of us getting there, I said ok I'm going to check to make sure of the time, when I came back out and told him we had to go back in then he literally threw a temper tantrum in the car that he was hungry and he had to go get something to eat because his blood sugar was dropping, I've learned this trick pretty well over the last four years, he was throwing himself back and forth in the jeep yelling and me, his eyes glazed over and for the first time I was scared of him.  My ex-husband flipped me out of a chair the night I left him and I wasn't as scared as I was that day.  We had to go in the office for the appt and he was a cool as a cucumber and when we got done went to get something to eat and he didn't act like that again for a few months. 

We were headed down for hemo and the mountain pass we had to go over was iced over so thick I could not see the road under it.  I said we have got to go back I had my Jeep in 4X4 and I was sliding on the ice doing 15 mph, I said we can go on Wednesday, again it was the throwing himself around the Jeep like a 2-year-old having a temper tantrum, scared me worse than the Salt Lake City event.  Now I refuse to go on the road with him and that ticks him off, but I'm not going to subject myself to that at all, I don't have to. 

I need to take care of me for a change.

Friday night was my true breaking point.  He made burgers and corn on the cob and I ate about three bites of my burger and couldn't tolerate it, it was good, my stomach just couldn't take it.  Later on he asked if it was overcooked, when I told him no it was fine, I just haven't been able to eat for a few weeks, he says oh.  I see you getting on the scale are you trying to lose weight.  Really hurt me, I've lost 27 pounds in two weeks because I can't eat because of the stress and he has never noticed.  It may sound like a stupid reason to get to the breaking point, but if he can't even notice that it shows how much in my life he doesn't notice because he's always in bed.

Right now he's pounding around in the other room, and I'm sure it's because he didn't go to the springs with me.  I moved my wedding set over to my right hand sometime last week and he hasn't even noticed that. 

I'm not sure at what point I stopped being his wife and became the caregiver.  When this all started all he could say was, I don't feel sick, how can I be sick.  I think that is a lot of why he was so noncompliant, then it just became routine I guess.  I did everything and he laid back and did what he wanted.  It's been three weeks since he was started on Renvela three times a day with meals and he has yet to take one!!!!!  Makes me furious.  I know there is an element of depression with him, that is why he's on teh Wellbutrin, but if he refuses to go to a psychologist I can't force him and I can't take his hand and make him go.  The only thing I am doing by staying is digging my own grave a little more each day, so I have to go for my own health and sanity and peace of mind.  I know I can't make a grown man change his ways unless he wants to and he doesn't seem to want to.  If he can go fishing all day long he can do a lot more for himself, he just won't.

In the past year he has replaced his computer, gotten new glasses, and a new truck.  I have needed glasses for over a year and now can't afford them, I am on his old E-machine because my computer bit the dust and it's like a dinoputer.  The old truck he traded in blew a cam and it would have cost $1,500 to repair, but instead he decided he needed a new truck and now we have picked up a $375 payment a month when the old one was paid for and only about six years old!!!!!!!  He does what he wants not matter the consequences to anyone else. 

I have ot do for me for a change I guess, I think I deserve it, maybe I don't, maybe I'm just being selfish in not taking care of all his wants and needs anymore, maybe I'm just an uncaring person, maybe I'm a beotch, but I need to take care of me this time around.

[jbeany]

Vicky, honey, this isn't a polite question - but what was he like before he got sick?  Are the tantrums just an extension of that?  Because it sounds more like mental and verbal abuse than anything else to me - and no one should have to put up with that, no matter how ill the abuser might be.   

[looneytunes]

Oh Vicky, you are not a beotch or any other bad thing.  It sounds like you have been through hell with this crazy ride.  I totally agree, if he can go fishing, he can sure do a lot of other things for himself.  And it also sounds like you have become very unimportant in the relationship.  To not hear you, see you or listen to you. 

My heart goes out to you.   

[cariad]

Vicky, honey, this isn't a polite question - but what was he like before he got sick?  Are the tantrums just an extension of that?  Because it sounds more like mental and verbal abuse than anything else to me - and no one should have to put up with that, no matter how ill the abuser might be.   

Absolutely right, jbeany. As you share more, the picture is coming into clearer focus, Vicky, and I am glad you have a plan in place to leave the marriage. What you are describing is inexcusable - don't let guilt stop you from saving yourself. Back pain is so hideous (just had a long bout with it myself) and needs to be properly attended to. Please take good care of yourself. We are here all hours of the day to offer support as you go through this difficult time. 

[Vicky]

Vicky, honey, this isn't a polite question - but what was he like before he got sick?  Are the tantrums just an extension of that?  Because it sounds more like mental and verbal abuse than anything else to me - and no one should have to put up with that, no matter how ill the abuser might be.   

We were only together about a year before he found out he was sick, he never knew, never had an inkling.  He went to the doctor for a check up after my brother-in-law had a heart attack and his kidney functions came back bad enough it was straight to the neph from here.  Before the disesase took over, it's almost hard to tell because we'd been together such a short time he was loving and caring, held me, called me "pet"names, made me feel important.  Since all this started it's like a whole different person who's mad at the world and me all the time.  I understand the mad at the world, but I haven't done anything to him, but support him as much as I can, I just got tired of the nastiness.  I talked to the doctors at clinic one day and said something has to be done because of the attitude and not wanting to get out of bed and everything else that was going on that is when they started him on the wellbutrin.  Counseling is not an option since he won't go, so it leaves me in a pickle I have to get myself out of.

[Vicky]

It's so hard I hate to see a marriage dissolve, but I can't do this anymore.  I'm tired of being sad and myself getting depressed.  Not sure how to get over the guilt but I have to some way or other.  He has no family here so that makes me feel worse.  Not sure how he can make it back to Michigan, but he will have to deal with that when the time comes.

My sis, brother-in-law, and mother are moving to Arizona in about a month so I am going to stay behind and take care of their house they are trying to sell until spring time at least and see what life brings me and if i'm ready to go out there.  The plan was for all of us, including Dave, to move there this fall, but I know from past experience that a new location does not improve a situation or marriage. 

[MooseMom]

Just a quick thought a bit off this particular topic, but I am not comfortable with the idea that the " Caregivers" section is only for caregivers.  Move this topic if you please, but all sections should be open for all members no matter their position.  I personally have been taught a lot by reading posts from carers because I now have a good idea of which behaviors are particularly obnoxious.  I figure that I am a caregiver to me, and I have taken a lot of advice given by caregivers on IHD when I needed to explore better ways to take care of ME.  I would hate for there to be anything on this forum that might pit patients against caregivers, so I DO understand the concern that dialyzors might be "defensive", but caregivers might be "defensive", too.  I would hope that all of us as a community could get past those feelings and accusations and continue to support each other.

I know that the fundamental problem for Vicky is not merely "lack of support", and the same for you, The Noob.  The problem is the patient/spouse.  There's no good spinning that.  It's that simple yet that complicated.  I understand that.  But both of you have mentioned the lack of help and support from friends and family, and I know that lack does not help.  I was simply commenting on that; I wasn't trying to say that if you had all the outside help in the world that having a spouse on D who either refuses to take care of themselves or who is just abusive would be a picnic.

Lastly, I am not sure why anyone would think Vicky may be losing the support she has from this site.  I think this site is exactly where she should be.  She is being very brave in sharing her deepest, darkest thoughts about a marriage to a man who may have been just as abusive had he not had chronic illness.   But he DOES have ESRD, and we have seen how this disease can either cement a marriage or can destroy it, so we have seen it all and do not judge anyone who feels desperate and trapped.

Vicky, I don't know for sure, but you seem to need permission to leave this marriage, permission to feel as you do.  All of your feelings are certainly justifiable.  As for what you do with those feelings, we will support you no matter what decision you make.   This is a decision you need to make for yourself.  What you have to decide is which course of action will leave you feeling like you can live with yourself?  If you decide to stay, can you live with the resentment that will almost certainly come from sacrificing your life for this man?  If you decide to leave, will you be able to live with the guilt you will feel (and I know you will feel some guilt because you have said so, not that I think you deserve to feel guilt)?  We can't possibly make those decisions for you, but we can listen to you and encourage you toward making the right decision for YOU.

We wish you all the luck in the world and understand that this is so very difficult for you.  Thank you for trusting us with your deepest feelings.   And you are very fortunate to have such a solid friend in The Noob.  What a great gal to have in your corner!

[MooseMom]

(PS @ The Noob, I didn't take offense, and I sure hope I didn't come across as "defensive".  )

[Vicky]

I think part of it is how are the people in my community going to judge me for walking away from a chronically ill person.  Most in society feel someone has to take care of the chronically ill, as long as it's not them, and shame on anyone who doesn't have the compassion to stay and do that for them so they don't have to.

Dave is 57-years-old and most of his brothers are older than him and I don't feel are capable of helping him, and his mother is in her 80's so that is a definite no there. 

Who is supposed to take care of him, besides himself, I can't do it anymore. 

For the Noob, you've been my backbone for a long time, my friend, my confidante.  Who is doing to make sure Dave doesn't put his underwear on inside out?

[The Noob]

hehehe..well..
when i spoke at a few points in time to the doc/nurses/SW, they all said "this is his illness, this is his choice to make, same with a transplant, transportation, all of it is his deal and he has to make the calls".
so very true. in the end, thats the nuts and bolts of it.

you can't help someone who doesn't want it. in the end, losing it all may shock him into reality and then he can get back on the horse and ride. lets hope so.

i don't have links, but i have read that a caregiver ages 16 years for every 2 years of caregiving. i have also read (scary) that the suicide rate of a caregiver is in the 80%, likewise the divorce rate for this situation.

my sister has an 11 yr old with a serious terminal disease. no help at all and its 24/7 advanced care for 3 years now. she just went through a divorce. she tells me its quite common in the families of this scenario.

i will venture further to say that there are probably many reading this thread who are in the same boat, who don't post, or aren't registered members.

Vicky, you are so correct in saying that, and this is just my opinion, that society places huge burdens of guilt and responsibility on the caregiver, to keep them doing what they do, so the rest don't have to.

i will be here for you. i will not judge you nor condemn you (not saying anyone else is) just that everyone has to decide what their breaking point is. and there ain't no right of anyone else to guilt/judge. (again not saying anyone here is). if someone makes those noises at you, ask them what time they will be there to take over?

ps: kitty doing good..and the winter is quickly approaching. last winter when i was driving DH to clinic, 10 mph, 35 miles one way, in the big truck, we were on a main hi-way, the truck even at 10pmh, suddenly on a curve, spun around 360 degrees. thank the Good Lord no one else was on the road at that precise minute. its a road all the 18 wheelers use. the ice was heavy and the snow pouring down. when we finally got to the clinic, i flopped in the chair scared and exhausted. after a 10 min break i went back out in it to get groceries and coal.
then i waited 4 hours+ to do it again back home. all DH said was where was i stopping on the way home to get him something to eat?

edit: i sure would like to hear what RichardMel has to say..he is one of the model patients, don't you think? i love reading his stuff.

[cariad]

Counseling is not an option since he won't go, so it leaves me in a pickle I have to get myself out of.

I don't understand how his refusal to go to counseling stops you from going? That could be a helpful way to work through the guilt.

[Vicky]

The way the last few weeks have been going I've been working every day and haven't had time to even think about making an appointment for myself to go.  That is no excuse I know, I just need to do it.

It makes us all wish there were a magic wand like in the movies to wave over someone and either cure everything so life is "normal" again or to smack the snot out of them to get them up and moving. 

Yesterday when he went fishing he spent over $100 after I had asked him to slow down the spending so I could pay the bills, then this mornin he messages me at work and says i'm going to get the dog food.  Well that is a necessity, not the $100 on fishing!!!!!  I dont' get it.

I just have to come to terms with the fact that I can't make a noncompliant person become compliant and when I leave I can't go back no matter what because it will just slide right back to the way it is now.  He did okay for about five days this time around then slipped right back into the old habits again.  Empty promises just don't fly with me anymore.  I need more out of my life.  I need someone to love me, sometimes take care of me when I need it, hold me, kiss me, tell me they love me.  Maybe I'm asking for too much out of life.  I'll be 44 this month and I'm tired and worn out.  Thank goodness for Lady Clairol or I would really look my age lol. 

[cariad]

hehehe..well..
when i spoke at a few points in time to the doc/nurses/SW, they all said "this is his illness, this is his choice to make, same with a transplant, transportation, all of it is his deal and he has to make the calls".
so very true. in the end, thats the nuts and bolts of it.

Your husband's doctors and social worker may be saying that, but that is most definitely NOT what they are saying on the transplant side, and that is where things can get confusing for everyone. In that realm, it is definitely a mandate of "This is a family illness, call everyone you know, PROVE to us that you will have someone ready willing and able to hand you the drugs and drive you to the appointments for as long as it takes." I agree that there comes a limit for everyone, that you do not have to be (shouldn't be!) someone's personal attendant and that some people need a push, but the situation is both complicated and individual. For me, I saw demands that I bring a caregiver in as a gross invasion of my privacy. I never, never wanted Gwyn there, because I wanted him to see me as his wife and partner, not a patient. Others may think "Sweet! Finally the help/attention I want!" or something totally different.

I also agree with MM that we don't have a section that is only for any particular group of people. I would not want to be part of a site that breaks people up into factions. If we want to understand a situation like this, we need to hear from all sides - patients, support people, medical pros, anyone with an experience or insight to share. I got into this discussion because I saw mention of yet another person being told that they are too fat for transplant, and for me, that is like the Bat Signal. I MUST comment. I have done so much research on this and really see this as fundamental size discrimination, and it is an issue that most people on this site are at odds with me over. I wonder what the reaction would have been had Vicky come on here and said "My husband is so underweight, the hospital won't list him until he gains 20 pounds, but he just lies in bed all day, not eating." I suspect there would have been a markedly different response from most members. But that's really a tangent for another thread.

That caregiver/suicide statistic sounds inaccurate to me. Perhaps I could believe that there is an 80% greater risk of suicide among caregivers than the general population, but even then, I think we are talking about caregivers who inhabit the very dark end of the spectrum where the person receiving care is profoundly incapacitated. All parents are caregivers, so there would have to be a pretty narrow definition for me to believe that the suicide stat is that high. If you do happen upon a link, please do post, I would love to see it. I do believe that divorce rates would be astronomically high. They are already pretty high in America, and stress is stress. Of course it will take its toll on a relationship if both parties are not engaged in the fight.

Vicky, coming to terms with anything is a process and you seem like you are at the start of the road, but will get there, at your own pace. I am glad you see this as a place where you can freely share your thoughts and struggles. 

[Vicky]

I don't look at weight loss as a discrimination against a transplant I see it as, if you are willing to lose the weight then it shows that you are capable of taking care of yourself physically so you are capable of handling all the issues involved with a transplant.  It's like a person who suffers from chronic obesity, sometimes there are underlying issues as to why they can't lose the weight, back issues, leg issues, thyroid issues, sometimes it's just love for food and total disregard of their bodies.  I know I'm big and I know I need to lose weight and I'm working on it, not just sitting sedentary thinking oh well I'll just keep doing what I want until I'm disabled because of the weight and can get SSI, and unfortuantely that is how some people look at it.  There are a lot of reasons why people are on SSI and I don't think that chronic depression, chronic obesity because a person doesn't know how to stop opening their mouth everytime their elbow bends, anxiety attacks which I know can be bad been there done that they can be debilitation but not long term enough for SSI, and I'm sure there are those that will disagree with me. 

Ultimately it's all up to us, we either live life sad or we make ourselves happy, we live abused or we get out, we live in poverty or we pull ourselves up by the bootstraps and make something of ourselves. 

I know what I have to do to make myself happy, I am working on putting that process in motion.

Dave was put on Renvela three times a day with meals almost three weeks ago and he has yet to take a single pill!!!!  He has made his choices and I can't make them for him, but I don't have to stay around and watch the self destruction and self pity.  He is capable of doing what he needs to do to be healthier and he choses not to.  So now I have to chose what is best for me.

[The Noob]

well amen girlfriend.

when i took DH to eval with transplant team, they asked me if i wanted to wait in the lobby. while i was in the room with him for 3 hours and 5 different peeps interviewing, they ignored me, kept their back to me and finally told me basically that they expect him to handle all this on his own without any help from anyone. they gave me nasty looks. i kept quiet except a few times after they all came in and asked the same questions over and over, and he was getting weary, i piped in and repeated some of the answers.

counseling is good i think if you can get it. i have no insurance for myself, and he only has medical, and the cobra is being paid by NKF and the time for that is ending. any dental/eye things come out of pocket.
i am on the last month of meds for my diabetes, my doc gave me several months worth. so in the next few weeks i am going to the free clinic (one night a week) and see what i can get. i'll be in good company as half the county will be there too.

look, under all this, i love my hubby. i want him to get well. and most of all, HE wants to get well. THAT is the key. Vicky is not in that spot, and again i keep saying, you can't help someone who doesn't want to be helped.
you can empathize, understand, analyze, til your blue in the face. it won't make that person budge.
i can attest to this from my 12 step group. all the love and help and support will not do a thing until that person is ready. and it takes what it takes.

i just got to take a quick break from chores. son and i have a load to do today. the wind is howling and its cold.
we're hoping to hear something from tx team this week. and that will be another roller coaster..but mayhaps a good one.

Vicky, surround yourself with those who will understand and support you. you don't need anyones permission to take care of yourself.