Wits end

[vcarmody]

I am at my wits end.  I give up so much to take care of my husband.  I love him with all my heart but sometimes I wonder why I work so hard trying to keep him healthy when he don't seem to give a crap.  I mean I know he is sick and feels crappy all the time, but I am getting tired of having to be on his back all the time about going to doctors to take care of issues he has.  He refuses to watch what he eats, he drinks way to much fluid daily, I mean I know we are on Nxstage and they say there are no restrictions but the more he drinks the more we have to take off and the more time we have to spend on treatment.  I work 12 hour swing shifts and sometimes just the extra 10 minutes I could have to myself because we have less to take off would be so nice.  I hate to complain because doing Nxstage was my choice.  I wanted my husband to feel good and he never felt good in center.  But I just don't get why he will not take a little care himself.  His sugar is out of control.  I heard for a long time it is because he had an infection in his foot, that infections is gone now and has been for months but his sugar is still almost always above 200.  He hardly ever checks his sugar, rarely takes his fast acting insulin and is always eating chips, cookies and all the junk he shouldn't be. I been trying to get him to go to an endocrinologist but that request falls on deaf ears. If he gets his sugar under control then he will drink less, its a cycle.  If I say something to his doctors about him not doing what he is supposed to then he gets upset and always says how I don't take care of myself.  I have no serious health issues.  But he is always like your back hurts, you didn't have a mammogram, your foot hurts, or anything else I may have complained about.  I feel like saying well hello there honey, I'm not gonna die from back pain of foot pain, but you are if you don't take care of your issues you will.  He put on some weight and he can't get on the kidney waiting list because his BMI is 40.6.  Everyone at my work is always like is he on the transplant list and I don't know what to say.  I hate answering well he can't get on the list because his BMI is to high and he can't lose weight.  I mean I know he don't eat much because he really don't but its all the snacks and he just don't get that those 5 cookies is like 2 full meals to a normal person that don't have diabetes.  His back always hurts, he is always achy which everyone is at some point especially when you get older and slow down a little, but he is getting worse and worse because he don't exercise.  I wish he would just get up a few times a day and do some stretching  anything to get him a little more mobile. Does anyone have suggestion on what I can do to get him to care a little about himself and our life together? The last thing I want is to lose him to this damn illness, but I don't want to be on his back all the time either making him miserable.  He has a great attitude and is never depresses that I can see, he never says why me. He never reads about his illness really so I try and tell him all the time that average life expectancy of a dialysis patient is not very long.  He don't agree he said that was years ago but now they are living much longer. 
Beside his sugar being out of control and him not being aggressive at all about it, he also has hand pain that I fear could be steal syndrome, it may not be but a visit to the vascular doctor can answer that but I mentioned it and instead of making an appointment he says it don't hurt that bad.  If he don't care why should I??  The problem is I do,  and I just can't stop caring... but I want him to care about his health to.   

[okarol]

There's another thread where someone posted a good quote about not being able to save someone from themselves - where is it... I will keep looking.

Another thought comes to mind, and I have felt this may apply to many patients (including Jenna) - it's called learned helplessness. You're probably so competent that he is detached from it all, while you're doing backflips trying to manage it.

Tell him you're going to take out a really big life insurance policy on him. I know, sick joke, but he's doing damage and you get no vote in the matter.

I am so sorry. I really feel for you.   

[carol1987]

I am so sorry.... I have not been in your position but it sounds so difficult   

[MooseMom]

Gosh, I work so damned hard to keep myself as healthy as possible.  I cannot understand the reasoning of someone who does not.  It must be so very frustrating for you.  I do wonder what would happen if you didn't do so much of the work...would your hubby step up or just stay inert?  I wouldn't begin to know what to suggest, but what Okarol had to say might be a good place to start.

[del]

Hubby works so hard too to keep himself healthy. He is almost too much the other way watching everything he eats .  But with kidney failure that is a good thing!!  He watches his fluid intake so much that sometimes I have to remind him that he needs to drink more!!

Wish there was some way I could help you.  If he is not willing to help himself you almost need to take a step back and take care of yourself.  I know that is hard to do when you love him and don't want anything to happen to him but you can't force him to do things.   

[RichardMEL]

You and TexasStyle need to catch up and go on a road trip. Both your hubbies should be told they either man up and take some responsibility or sink, because you two are off to Vegas, or Atlantic City, or hell, Boulder, Colorado (but hey if it's Vegas, make it for when I'm there  ). Sounds like youb oth would have a lot in common to vent about and you probably both need some quality time away from what you have to witness from your partners' self destructive ways.

It must hurt so much to care so much and feel like you're the only one, yet not really be able to do much about it. As they say you can lead a horse to water....

Perhaps you need a different approach (apart from the road trip!). Just back right off. Let him sink or swim. Don't harass him to see doctors or take meds or not eat chips or whatever. It's his body. He has to live with the pain feeling unwell etc... Part of him probably resents being "harassed" all the time to do the right thing when he just probably wants the comfort food (You know, if life is so sucky might as well enjoy what you can - right?) and perhaps avoiding the doctors is natural enough with everything he's got going on health wise he probably just doesn't want to know.

Seems to me there's a few different types of patients out there.

- Positive ones - who want to know and do the best they can for themselves. Follow instructions, diets, anally compliant, work hard to keep healthy and fit and in the best shape to face what they have to face.

- Neutral - just let it play out. Leave everything in the hands of the medicos. Do what you're told but don't enjoy it

- Negative/depressed - Doesn't want to know, or learn. often rejects advice and possibly acts against it out of a "need" to push back and have SOME control over some aspect of life. Even if it's the act of rebelling to eat chocolate.

- Disconnected - might as well be on another planet.

- Agressive - resents everything to do with their problem and pushes everyone away. Looks to blame others for the issues being faced. Does not want to take responsibility or an interest in improving their own lot.

oops, I seem to have gone off on a tangent. Sorry.

Now back to Vegas..... TS I have a few ideas !!! 

[boswife]

This breaks my heart vcarmondy..I have all the worries as you, but my hubby is so pro active in his illness (now).  It took getting ON dialysis to realize that he was really heading to dialysis, but i tell ya, he now appreciates so much the prodding i gave him to keep him off it as long as we did.  I wish your hubby would do it for you if not himself.  Its such a painful thing to give your all and not have the partner give too.  Does he feel like he doesnt want to 'mind' you??  Like is it a macho thing? Denial?   I mean geesh, your doing all the work, all he has to do is take advantage of a giving wife.  I dont know, i just wish it would be easier for you..  my first thought to was for a get together with texasstyle and have yourselves some fun.  I tell ya, we have just finished our nxStage training (well tomorrow) and if he isnt bowing down to you with gratitude for your assistance, he needs a lesson in how to!!  This is HUGE in my opnion!!  It kicked my BUTT!!  And then for you to put your life and time into it and not mean much to him, i have to say, i really dont know if i could carry on and live to tell about it.. I think my broken heart (or my anxiety over it all) would kill me.  My hubby is the most appreciative man alive and i believe is taking good care of himself now more for me than for himself..I can live with that    I wish you some of the same..  I truly do.  I just wish i knew how to wake up your hubby to the dedication you have, and he just needs to share some of that with you so y :cuddle;ou can share your lives just that much longer.   Wishing you some rest and a wake up call for hubby

[vcarmody]

Thank you all for your advise.  This is not a macho thing at all, my husband is far from the macho type.  He is actually so sweet and caring, that is why I love him so much, he just don't seem to care about himself as much as he does me, my children or anyone else for that matter.  He thinks he is invincible, or maybe he just is disconnected, or maybe it is denial.  He treats me like gold in every way, he cooks, cleans, shops does laundry (as long as he feels up to it) he sets up his machine and all I have to do is put the needles in monitor his treatments and take the needles out and break down the machine while he is clotting.  Today when I got home from work at 7AM, he had the driveway and walk ways all shoveled so I would not have to walk in the snow.  But that is the most exercise he gets.  I have tried to set an example by watching what I eat, exercising and cutting out most junk from my diet, it has resulted in an almost 40 lbs weight loss.  But as I write this he is sitting in his recliner having his treatment and so far I have watched him eat honey roasted cashews, beef jerky, and dots candy, while drinking a qt container of his sugar free energy drink.  At least when he was in center they didn't allow eating or drinking during dialysis.  Has he checked his sugar today? Probably not.  Has he taken any insulin? Not sense his long acting last night at bedtime.  Think Okarol is right I should just buy a large life insurance policy... my only fear is he is going to pass away before his 91 year old father, then what do I do, right now we both take care of him as best we can, taking him shopping, to the doctors, filling his prescription, managing his bank accounts and paying his bill, arranging all his repairs on his home and its quite a task being that his dad is a very selfish, unloving person, who insist on living in his home on his own even though he can no longer do some of the most basic things anymore.  If Chris passes away, I don't want to feel obligated to take care of him, but there is no one else, no other family except Chris's sister and she don't want to be bothered.  I have decided not to suggest he try and get his sugar under control anymore, or that he diet or exercise.  It is really his choice.  I have been on top of his whole dialysis since the day he started. I have poured over this board and read every thing and any thing to do with his illness.  I have fought to get the treatment he needs and what is best for him.  But I can only do so much, it is time for him to take an interest in his health.  I will be here for his treatments, but I am gonna shy away from attending his other appointments and stuff, when he takes an interest in getting better, then I will be there 100 % for him.   

[looneytunes]

VC, my heart goes out to you.  It is painful to watch someone you love self-destruct and it makes one SO angry to see him do this in spite of ALL you do to make things better for him. 

I have been in your shoes (and easily could be again if I let myself slip) and am learning to let hubby take more responsibility for his own health (or lack of).  I began practicing this several months ago when I also was at my "wits end" with it. Like you, I was the one who did all the research and reading and tried to share it with him and encouraged him to try NxStage and treat at home because he felt so bad after his treatment in-center.  What I accomplished with this was getting myself a full time job in unskilled nursing.   And this was on top of my other full time jobs as housekeeper, farm-hand, chauffeur, health-care advocate, social worker, gardener, bookkeeper, etc...etc...

A few months ago, I started with a small step.... quit nagging him about what he eats and drinks.  It was tough to do but the benefit was that I am no longer cooking much...he would prefer to "snack" than to eat a healthy meal.  I still cringe to see what he is doing to himself but realizing that I can not control what he does has helped me detach from this.  When his fistula failed, (and I was the target since I was the one trying to stick it with little success) and he had to have a graft put in, I told him that he needed to learn to self-cannulate.  He is currently trying to do this and not doing too well with it. (but's that's another story).  I explained to him that other patients do this routinely and I simply did not want to be the one causing him pain. 

This past month, I began a campaign to teach him to set up his own equipment each day.  I told him that it was necessary for him to know how in case I was not able to do it and that part of being a home dialysis patient was being able to do it himself.  I really left him no graceful way to decline the education.  We still have a ways to go with this, he fumbles around and I have to restrain myself from taking over and fixing everything for him.  The benefit of this campaign is that he is now realizing how much there is to his care and it really isn't a lot of fun to be a "party of one" doing all of it. 
 
My next step will be for him to learn to tear it down, clean everything and keep inventory of his supplies. 

The point of all this is that I realized that I was enabling him to be helpless.  By being so willing to do everything for him ( I like to think it was because my heart is in the right place) I took away any need for him to do it for himself. 

I'm not saying this is the right plan for you, just something to consider.  If he is hell-bent on self-destruction and won't take responsibility for his own care, there is really nothing anyone can do.    In the meantime, I'm sending you a big cyberhug.   

[Poppylicious]

Oh Vickie, I have no advice (rubbish, I am!) but I really feel for you.  I have an inkling of how it feels to watch someone who seems hell bent (maybe not even consciously) on destruction, but am lucky in that Blokey is on the path to 'I really want a transplant a know I have to take care of myself in order to get one' at the moment.  I do still have to bite my tongue sometimes when it comes to that extra drink or those choccies which really need eating up! 

Maybe it is time to take a step back and see what happens.  It will be hard, but as you say, if he doesn't (seem to) care then why should you? 

But as I write this he is sitting in his recliner having his treatment and so far I have watched him eat honey roasted cashews, beef jerky, and dots candy, while drinking a qt container of his sugar free energy drink.  At least when he was in center they didn't allow eating or drinking during dialysis.     

Have you tried enforcing that rule at home?  I know that the whole point of home haemoD is that it's less stressful and more comfortable for the one on dialysis, but perhaps there should be certain rules.  Maybe twice a session you could pop along with the tea trolley, just like in Blokey's unit!  You could even have a selection of limp and tasteless twelve-hour old sandwiches for him to decline and you could dress up in a fetching tabard to look the part  .  What is he doing whilst hooked-up?  Does he snack because he's bored?

Many *huggles* ...

[RichardMEL]

I think LT has just been added to the VC. RM & TS road trip to Vegas!!  ooooh I am glad I have a big strong kidney to cope with all these wonderful ladies!!! 

It's interesting that we have a common theme emerging (and let's not forget AnnaBanana and her hubby who was similar).  Is it a general mindset thing? Is it a reaction to the restrictions imposed on you by kidney failure/dialysis to "rebel" (much like a teenager) in a bit to asert a bit of control over your life (even if it is in a bad way)? I think a psychologist could write a paper or two on how patients deal with chronic disease like this.

But I digress. That thought doesn't help anyone.

I would generally support the idea of quitting nagging - as much as it pains you to see the junk and the obvious disdain for his own health, perhaps the "nagging" is pushing him more towards that activity than reminding him he should be doing better for himself. It seems some people reach a point where they just do NOT want to be told you have to do this or that and, like teenagers, almost go the other way to make a point - maybe not at a conscious level, but the result is still the same.

It's such a difficult time for you ladies. My heart really goes out to you and finding ways to keep your sanity.

 

[vcarmody]

Today I guess was my test, and I think I did really well with not nagging and only stating something once.  He recently had an endoscopic procedure. Today we received a letter form the doctors office it states "please call our office to set up an appointment to discuss your biopsy results."  I read the letter to him and told him he needed to call.  It feel on deaf ears. So I will not mention it again.  I'm sure the office called his cell and left a message and got no return call so that is why we got the letter.  I went to our primary care doctor a few weeks ago and the nurse said we have called your husband a few times and left messages but he has not called back so I have a note here to tell you his sugar is way to high and doc wants him to go to an endocrinologist, they gave me a referral and it sits on the table still not touched by him. His says they never called him, but I  don't see why they would tell me they did if they didn't.  I give up.  He asked me a few minutes ago if I was going to the center with him tomorrow for his monthly visit.  I'm not.  I have to pull a 12 hour shift tomorrow night and sense his appointment is at 1 PM and I go to work at 7PM, I am going to enjoy my day off from his treatment, maybe go visit my mom, or reconnect with some of my friends that I have neglected over the last few years.  Maybe I'll even turn on my radio and run a first aid call or two, something I have not done in a few years.  I can't make him better by forcing him to do what he is supposed.  I have called two different hospitals that do transplants in the past requesting an appointment to try and get him on the list, they have both called back left messages for him to call and set up appointments, that was months ago.... he ignored the calls,   so its time to throw in the towel and just try and enjoy what time I may have left with him. 

[RichardMEL]

wow. Just wow.

I am sitting here stunned reading that.

Not what you've done but what he is and isn't doing.

My mind is truly boggling. What an eye opener.

*sigh*

Good work VC. You're doing about the only sane thing you can do. You let him know once, then it's up to him. He really has no excuse.

[looneytunes]

Great 1st step, VC.  I know how hard it is. 

Some days I really have to struggle against the urge to step in and fix a problem that hubby is ignoring or just not willing to deal with at the time.  Most of the time I've managed to hold out but sometimes I slip back into old habits.  But the next day I start all over again with my resolve to respect his right to make his own decisions.   I've always believed that if you practice something enough, it will become a habit. 

Today was a really tough day.  It is the 3rd consecutive day that hubby has not dialyzed due to issues with his access.  I suggested he call his home hemo nurse tomorrow and I pray he will. 

I'll keep you in my thoughts and prayers.   

[texasstyle]

Road trip it is! Richard, we're coming to the outback lol. Draining isin't it? We keep doing it because we love them and because are human, but man al mighty how much can we give when someoneone doesn't want it. I'm picturing our husbands spending a month together and us ladies spending our month together. Can you imagine the outcome? My lord. I mean would they actually be able to take care of themselves or would they just fall apart?  I have thought of this suggestion myself lately. Suggesting that hospice come in because "they will make it as painless with the least amount of suffering for you".  I don't think get that is what they're doing to themselves. Sometimes I wonder if I'm being selfish. You can't make someone WANT to live. We don't truly understand what they're thinking or how they're feeling about life with ENRD. I thnk my husband for example does want too, but just under his rules. Thing is that once you start dialysis it is a whole new set of rules. Sad to say it's like taking care of a child but one that argues back like an adult. You're venting and that's a good thing because bottling it up isn't. I think a good idea for us is to start learning about the deep emotional aspects of a not only dialysis patient, but one with CHRONIC illness because that's what it is. Chronic, it never goes away.Maybe we can find out some more about the nature of the depression, and possibly the issues of isolation. What is really happeneing in thier heads? Now,..what are you doing today for YOU? As a teen my mom used to tell me not to get too wrapped up in a boy's life and forget about my own. great words of advice. My husband is not on the list either. Just doesn't want it I guess. A transplant means you have to go to the city for bloodwork once a month he says. I simpy tell people that he has other medical conditions that do not make him a canidate and they it alone.  Looney: gee if that issue doesn't get resolved like, today, can he be taken to a hosp. to be dialyized?

[Poppylicious]

That must have been tough Vickie.  I hope you had a fabulous day doing 'Me' things and didn't dwell too much on hubby.

I think LT has just been added to the VC. RM & TS road trip to Vegas!!  ooooh I am glad I have a big strong kidney to cope with all these wonderful ladies!!! 

       
Damn!  Not only do I miss out because I'm far away in the Land of Afternoon Tea and Crumpets, but I miss out because my husband is better behaved?  Poo-ey!

                                                    

[looneytunes]

I'm with TX on this one...I'd love to visit Australia!  RM...you best get ready for all of us (Poppy, that means you too!) and get Danny in shape.  I've been to Vegas several times but never to the outback! 

[RichardMEL]

Oh Poppy darling I could not forget you. I love the UK so I will make a special visit and we can have afternoon tea, scones, cream oh and of course the crumpet will be for me (cor, blimey!!!  ).

You know ladies the reason to go to Vegas is two fold - one, IHD meet in October!! and two well it is the city of sin, and as they say "What happens in Vegas - STAYS IN VEGAS!!!" Danny's already pumped up for it!!

Anyway back on track - TS you raise some interesting questions/points about feelings of isolation, or wanting to live "under his rules" - I can see certain aspects to that that make a lot of sense. That was never the way I operated under dialysis, but as I wrote earlier I think there are different ways you can respond to a chronic disease and there are examples of all of them on IHD. 

I can't say I felt very isolated on dialysis, but then again I had a very social group in my unit, specially the staff - it was actually quite a pleasant chore to go to Dialysis (I know that sounds insane!) - I mean I didn't dread going there or hate it because I loved the crew who looked after me and was always happy to see them. Do I miss going to dialysis now? No!! As I type it is my dialysis session time and it's great to be at home doing what I want to do! I do miss the staff though and that's why I go visit them. Perhaps TS' hubby feels more isolated because he is at a unit that isn't very social and he doesn't like being there?. Does he have social outlets at all? Does he catch up with friends and do stuff or is he basically confined to home? I think that would get *me* down because I found the social aspects of dialysis very important, as well as being able to work outside of D to be with my mates and focus on something positive (and get paid for it ). Obviously not everyone can do that and I recognise I was very lucky in several aspects... buyt there may be ways where the various husbands here (and isn't it interesting that it seems to be males more than females who resist in this way???) can find more positive outlets to focus on rather than just focus 100% on medical stuff.

Btw he's not on the list because he refuses to get b;loods done ONCE A MONTH??? I mean.. REALLY??? Is that the lamest excuse you've ever heard? Anyway TS wouldn't his D unit take the bloods as part of his regular session? That's what mine did. It was no issue.

Gee I need to sit down with this guy and express just how fantastic the outcome of a transplant is. Yes, it's still just a treatment option, and I still have CKD, but my Gosh it's been just 7 weeks and I feel amazing. Oh and I ate chocolate and didn't feel guilty!!!  (well I did, but that's about getting fat now!! lol).

The other point you raised about some wanting to die vs. wanting to live is interesting (and I know it is a bit morbid - sorry). I would agree with you that it would seem he DOES want to live - I mean if he really didn't he'd just make the decision to quit all treatment and go under his own terms - and if he did I would say that we really need to support someone who does decide to make that decision and respect that it is their life/body and their decision to make. However he struggles on (mostly) which suggests he does want things to get better, but he's not doing a hell of a lot to help himself - and much to hinder.

I wonder what the real reason is he is scared of transplant as an option.

In the meantime just tell him you're packing for Vegas!!!! 

[Cordelia]

VC, my heart goes out to you, that sounds really difficult

[Gandalf]

VC, wow, how incredibly caring and supporting you sound - your husband is truly blessed to have you in his life.  I can only begin to imagine the frustration you must feel.  I have not been in the position of a caregiver, so am commenting more as a dialysis patient myself.  Your husband's behaviour obviously is hugely frustrating to everyone, and probably, at some level, to him too.  But, as a patient, it does sometimes seem unbearable to have to always be dealing with the "invalid" "renal failure" thing.  The words themselves become a terrible label, and speaking for myself, there are days when I absolutely long to just deny the reality of it, forgo all the endless rules about very aspect of life, and pretend that it does not exist. To anyone out there, it seems crazy and irresponsible I know, but to me, I sometimes just feel overcome.

I agree with many of the other posts, you cannot do this thing for him.  he has to take the accountability himself, as an autonomous persona and go at his pace, doing what he can.  I think your approach is right, although I am sure it must be difficult to stand by and watch him do things which seem so self-destructive.  I will be keeping you both in my thoughts.

[Poppylicious]

Vickie, how is it now? Is he 'seeing the light' or are you still having to bite your tongue and take a step back?  Hope you're both ok.

*huggles*

[thegrammalady]

wondering how you're doing and hoping he's doing a bit more for himself.

[vcarmody]

Things are going a little better, he actually is now watching what he is eating. He cut out a lot of the snacking, and he has already lost about 5 lbs in like a little over a week.  We dropped his dry weight by 1.5, I think we can go lower but I am fearful of making him to dry.  He is going to the gym tomorrow to sign up and he has an appointment with the doctor to get his biopsy results (also tomorrow, now we just have to hope he can get it all done before the storm hits).  Not sure what made him start taking a little action, but I am not complaining because I was really ready to give up. He is still not doing that great with his sugar, he is taking the fast acting insulin a little more often but he is rarely checking his sugar and he has not even considered making an appointment with the endocrinologist.  Hopefully when he starts exercising it will help with his sugar.
Its still frustrating because I want to nag him to do what needs to be done, but then I remind myself he is not a child and if he don't do what needs to be done there is no one to blame but him if things turn out bad.  Thanks for checking on us grammalady, its nice to know people care.       

[looneytunes]

Vickie:  glad to hear things are a little better.  I have been thinking of you two and hoping that he was starting to see that he was causing most of his own issues.   It's so hard to think of the consequences of his "bad boy behaviour" and the ultimate impact on both of you.  Diabetes is nothing to mess around with but I think a lot of men believe they are "bullet proof" and the bad stuff can't happen to THEM. 

I have found the more I detach (with love) the more responsibility hubby takes for himself. I still struggle with making myself stick with my "hands off" approach but it gets a little easier all the time.  Since he no longer wants an evening meal, he will "graze" as soon as his treatment is done.  Last night, I watched him devour 2 Little Debbie Snack Cakes, 2 large bowls of tortilla chips and salsa, a ham sandwich and an ice cream sandwich. (in that order)  Later, he cleaned out the candy dish.  There is a lot of healthy food in the kitchen, but this is what he will go for.  It's tough to keep my mouth shut but I am managing.  Some evenings I just know my tongue is bloody and raw from biting it    

Keep on doing what you can each day and don't beat yourself when you slip up and "nag".  Just try again the next time.  I'll be keeping you in my prayers.   

 

[Poppylicious]

That's brilliant Vickie! Not perfect, but at least he's attempting to make some sort of effort.  May he continue to progress.

 

Last night, I watched him devour 2 Little Debbie Snack Cakes, 2 large bowls of tortilla chips and salsa, a ham sandwich and an ice cream sandwich.

Gosh, you've made me peckish!  I would love an evening in front of the tellybox devouring all that junk.  I don't think my WW lady would be happy with me though!