I feel horrible - what is wrong with me?

[bevvy5]

I lurk here and don't post much.  Hubby is on PD using a cycler.  Lots of complications a few years ago and he's facing hemo now, waiting for a fistula and the plan is home hemo.

He ended up in hospital on Monday, just really dehydrated and some otehr symptoms have the doctors believing it might be some sort of bleeding ulcer or some other gastrointestinal bleeding.  Plus an ultrasound revealed "something" on/in right kidney so he's had a CT scan.  He's feeling much better than he was, and we're just waiting for results and more tests tomorrow. 

Here's the horrible part - I'm actually kind of enjoying the break.  I'm not toting boxes of fluids, making sure he's not falling down when he stands up.  There are some mental health issues, depression etc. that overlays the physical problems and three months ago he decided he didn't need his antidepressants anymore.  For two days I have not had to mentally edit everything before I say it, and not worrying that something I say is going to set off a round of how I set him up to fail, how I'm only happy if I get my own way, how I laugh at him behind his back with my girlfriends.

I'm a very positive person so my mind is not immediately rushing to the worst case scenario, just not who I am.  I'm confident that it will turn out to be some sort of cyst or something "fixable" and things will be sorted out in the near future.  I truly believe that.  My kids keep saying that I should "let it out.  Don't try to keep a stiff upper lip."  I can't tell them that I'm just not missing him that much.

Honestly, this is the only place I could come to actually voice that feeling.  I'm not sure if writing it down makes me more or less of a monster.

[okarol]

I don't blame you for enjoying the break you're getting. Life sounds very tough for both of you, and it can be so hard to keep a positive attitude when there's not much hope for improvement. If you can, I would try to find a woman's group or some sort of support group so you can recharge. Can you get some help for the day to day tasks? Please come back and post when you can. You're not a monster, you are dealing with a lot of stress.
 

[MooseMom]

Life with someone with ESRD is hard enough without the added accusations of ridicule, failure and other negative behavior.  Far from being a monster, you've held up remarkably well, saving your ire and frustration for a time and a place that is "safe."  In my world, that makes you an incredibly compassionate person who is struggling in very difficult circumstances.

I agree with your kids..."let it out", but do it in a way that doesn't lead to great regret.  You can come onto this forum and tell us how you REALLY feel, and we will not judge you.  You can say what you need to say, and you do not need to feel shame.

It does sound like his mental health issues are darkening the world for you, and I don't like the fact that he has made the unilateral decision to stop his anti-depressant meds.  That's not going to help any of you.

Enjoy your break.

[jbeany]

My ex pulled that.  He went off his Wellbutrin because he "wasn't suicidal, so he didn't really need to be spending the money."  I lasted about 4 weeks before I told him he was gonna end up dead anyhow when I killed him.

Hang in there, and we're always here to listen!   

[Auntie G]

  I like to think of the hospital as my recharge time. I don't have to worry about what He eating or is it time for meds. I hate asking did u take ur medicine?  Watch how much fluid intake. I can sit back and know that he is in a safe place and I can take a little time for myself. Of course I feel bad and battle with the same thoughts.  Mine doesn't like the way the anti depressants make him feel, so he refuses to take them.  I on the other hand take fists full of them  . There r days I want to knock him out  and shove the anti depressants Down his throat!  Hang in there 








EDITED: Fixed smiley error - jbeany, Moderator

[Gandalf]

I think you are amazing - it must be an enormous challenge to have the responsibility of caring for someone with ESRD, without the complexity of depression and the other emotional issues which you seem to have to absorb.  It must be exceedingly difficult not to be pulled into a state of misery by him, what with all that negative talk in your direction.
"A monster"?  No way, I really salute you; that you have endured this for so long and not ventilated at all in his direction!  Please take care during this short respite, and be kind to yourself.  Am keeping you in my thoughts

[bevvy5]

I must truly thank you all.  Reading words like "recharge" and "respite" makes me feel that maybe it's okay to think of it as time that both of us can use - he's in hospital getting sorted out and I'm at home having a rest.  I feel much better about not feeling bad that he's not here.

As for the antidepressants, it's something I've spoken to our family doctor about and she will be following up with him, hopefully keeping my name out of it.  This whole emergency issue came up before she really had the chance.  He's alienated our son completely at this point, although I'm hoping it's not permanent.  Our daughter and he have been very close and she's limiting her contact with him - just too much negativity and criticism when she calls is what she's told me.

After these few days, it has been an eye opener.  The hardest part to deal with in the last three months has definitely been the mental/emotional aspects of it.  The rest of it,the kidney disease, the dialysis, it's just something that has to be done and it gets done.  So I suppose the time out of the situation kind of has focussed me a bit so hopefully I can cope with it a bit better.

Again, I really want to thank you for the very quick and very affirmative support.  I may hang around here a bit more - hopefully not get myself into such a state before I "scream in my pillow," as it were and voice my frustrations.

Take care all of you- our people do love and care about us, I think they're just dealing with so much inside and out, we're the easy ones to take the brunt of it.  But that's nothing we don't all know.

Bev

[billybags]

bevvy5, Do not feel guilty about enjoying a break whist your husband is in hospital. As you say he is being looked after. My husband was in hospital two weeks ago and I must admit I did enjoy the break, OK I did feel a little guilty, he was in for 3 nights and I slept like a baby. I had to laugh, when he said he was coming home I said "what so soon" that is awful.  Dialysis and the other things that go with it, heart, depression,tiredness, really take it out on a carer, I know I am getting more and more wapped out and that is not good. I can not remember the last time I had a holiday. You take care now and remember all the things you are thinking, we have all been there, are there or are going there.

[del]

  to you.  Sounds like your hubby really needs to be taking the anti depressants!!  ESRD is not easy to deal with and depression usually goes along with it.  My hubby struggles with depression but he makes sure to take his medication if he didn't I would probably have it so I could do it through IV while he is doing dialysis LOL.  Seriously through he really does need to be taking the meds and a lot of the anti depressants are not supposed to be stopped cold turkey because you can have withdrawal effects.  Hopefully the family doctor can convince him to start taking them again.  Don't feel bad about being relieved that he is in hospital for a while.  It gives you a chance to recharge. 

[monrein]

  Bev...enjoy the respite, you need it and have earned it and I do hope the doctor will address the depression issue and that it will make all of your lives a bit easier.   

[lmunchkin]

Bev, you are not the only one to feel this way, trust me.  Just do the best you can and take a break often as you can.  I pray that things smooth out for you and hubby!

lmunchkin

 

[looneytunes]

Bevvy...you are SO normal!  When hubby is in the hospital, I used to sleep in a chair in the room beside him.  The last few times, I actually left and stayed in a real bed....slept real well and enjoyed having a little break from the daily grind.  We don't wish these episodes into existence but there is no reason to not make the best of them when they happen.   

[texasstyle]

OMG, it does sound so bad, but when my husband is in the hopsital I enjoy the break too. Of course as long as he in stable condition, then I can be a little worry free but in reality, you never stop worrying. Our lives become wrapped up in, and around theirs. We  often some how forget about ourselves and  leave the "me" behind. Use the break and do what ever your little heart desires. Lay in bed all day, go for an outing friends, or take time to catch up on things that have been put behind. It is ok for you to take of "you" as well. Our loved ones want that for us too. And for those who are actually on the dialysis: we wouldn't be there if we didn't want too. I know sometimes we as "caregivers" get a little carried away with  venting our frustrations but please don't ever take it as a direct hit against you. I guess there is no real right or wrong way to properly handle dealing with all this, so we're only doing the best we can with what we've got.

[paris]

Bevvy, you are in good company here.  Everyone needs a break, time for themself.  The hospital is taking good care of him and you don't need to worry one bit. They will call if they think you need to be there.   While you have this time, rest and enjoy the time.  Don't clean, do laundry --- just rest and remember who you are.    And keep venting here --- we are really good listeners!   This is the one place I can be mad at the world and everyone understands.          Eat a piece of chocolate!  Eat the whole bar!!   

[bevvy5]

THanks so much, all.  Update - he came home on Friday and basically they figure it was some kind of viral thing.  However his blood pressure still must be wonky as we went out for lunch today with his sister and her husband and he basically had a dizzy spell and collapsed in the lobby of the restaurant.  Caused quite a stir.  He laid on the floor for a bit, we got him up and into the car, I got him home and we have sort of a community wheelchair in the building we live in, so got him up the elevator and into bed.

I love his sister dearly, like my own sister really and because they live about four hours away, we don't see them that often.  I'm not sure how I'm going to deal with the aftermath.  She will lovingly be full of suggestions - already was saying we should have a wheelchair or walker in the car and so forth.  The problem is hubby sees it as a huge betrayal if I speak about his medical issues other than the most perfunctory of information.  He's suggested, as I think I mentioned, that I sort of talk and conspire behind his back.  So I have to figure out a way to basically not appear rude or disinterested but not speak to her about him - he loves and trusts his sister and I don't want to jeopardize that by having him think she's part of the "conspiracy."

I mean, when I write it all down, it sounds like something from the other side of the looking glass.  Overthinking it maybe. 

Anyway, thanks for letting me vent.  Expect to see me a bunch more and I'll try to be on the supportive side too, not just the whiny side!!

Bev

[jbeany]

When sis starts on the helpful suggestions, I think I'd go with a breezy "Oh, sis, save your breath.  He makes all his own decisions, so if you want to make suggestions, you should make them directly to him."  If you can manage that in front of him and hand him the phone right then, better yet!

I think people who aren't around D patients much have no idea just how common dizzy spells and bp dips really are.  Annoying and sometimes scary as heck when they are happening to you or yours, but not uncommon at all.  If you have to talk to her at all, try to stress that.  (I know I've spent far more time in my life crawling around the floor in my house than anyone over the age of 2 should ever have to.  And even post-transplant, I still can't stand up too fast.)

[bevvy5]

I wanted to post and thought I'd just pop in with my old thred.  Pretty busy month as hubby came home around Labour Day and was admitted again in the hospital on the 21st, this time for two weeks.  He was really bad by then, basically PD had completely dehydrated him, creatinine was up to about 1700 and he broke down and started crying with the nephrologist (who is an absolute sweetheart) during his clinic.

In the meantime on the 16th of September he had his procedure for his fistula.

Long story short, he is currently on hemo three times a week at the hospital but they are very respectful of not drying him out too much which was a major issue last time he was on hemo temporariloy.  He went UP in weight 6 kilos before the low blood pressure and dizzy spells stopped and that is his new dry weight.  He's scheduled to start home hemo training next week.  We don't have NxStage in Canada so it will be the "regular" type of hemo.  Nocturnal is the plan, possibly hybrid with some PD, but that's up in the air.

He's back on his antidepressants for about three weeks now.  When his Neph found out he'd stopped, it was honestly the first time the poor guy has ever looked shocked at anything we've ever had happen.  But he was super about explaining that having something like ESRD is depressing enough and trying to battle through a background of depression just makes it worse.  So DH has accepted that and now realizes that his mental health definitely impacts on his physical health.  He's working hard a reconditioning - he was basically sitting around for close to three months so needs to get some stamina built up.

So all is good - I am no longer having fantasies of smothering him with a pillow - LOL - truly kidding.  And his sister was completely supportive - basically she apologized for kind of trying to suggest things saying that we were in the best position to know what was best. 

My reason for posting?  To thank you all for your help.  I will definitely be in and out - working so so much to try to keep things afloat financially but that's okay, I like to work.

Also, just as a positive note that even when things seem really really hard, they can get better.  Not perfect, but better.  That might help somebody (or me) next time things are really really hard.

Take care (of yourselves and those you love) all.

[boswife]

oh please keep posting with us.  All these stories are helpful in one way or another and for me, it's watching that things do go to the down side but it's so wonderfl when they come back up......... to what ever leval that may be    The support of others, knowing what we're going through is what keeps us all going.  Thank you SOOoooooooooooo much for your posting and filling us in on whats up    Bless you and yours and home hemo is great!!  Adjustments for sure, but so worth it once you get the kinks worked out.   

[The Noob]

  got some good chuckles..been there..went through a spell where i fantasized about getting in my car and driving and not stopping. it sure looked for a long time that nothing was ever going to improve.
but..it did. i switched DH docs/clinic, they found the problem. he's been on hemo mostly since november. we start home hemo training next week. never ever thought i'd do it. now i wonder why i waited so long. but i was burnt..as in toast..and had to have some time off to recharge.
the thing they probably told you about the psyche meds is that they change the brain chemistry, so just stopping cold turkey can really be scary and make the patient crash.

i have since began utilizing my mothers old time tested remedy.."give the LOOK and say slowly..with a growl..Sit Down and Shut Up"..

LOl just kidding. maybe..

[MooseMom]

I'm really glad the antidepressants are again part of your husband's treatment.  The neph is absolutely right in that ESRD is bad enough without also having to deal with depression.  Depression is a symptom just like high phosphorus or any other physical manifestation of kidney disease.  We take binders for the high phosphorus, so why not treat depression, too?  Why suffer when you don't have to?

I know you are busy and have more important things to do than post on a computer to people you don't know, but any update you can provide would be very much appreciate it.  Everyone has something to contribute.  Someone who is still lurking might be in a situation just like yours and may now have a better idea of how to help her husband...or herself.

[bevvy5]

Thank you all so much for your kind words.  Yes, I will check in daily and while I may not contribute much, none of know what mght help someone else.

[ODAT]

I too feel guilty when I am out doing something. I often think of the reasons what I am doing is not something mom can do. It makes me sad. I am so lucky to have three other siblings who are there for mom. I was going to say take care of her, but it is so much more than that.

I have to comfort myself knowing that we fill her days with as much joy as possible. Sometimes it's just sitting outside.

There are so many issues that come up with dialysis that caring for someone can get overwhelming. One thing that most say on this board is that downtime is when you can refresh yourself and be better for everyone.

[lmunchkin]

So glad to hear you are getting a better handle on this, not just for hubby, but yourself too bevvy!  Good to hear from you too and please chime in every now and then!  We trully care about you and hubby.

lmunchkin   

[vcarmody]

My ex pulled that.  He went off his Wellbutrin because he "wasn't suicidal, so he didn't really need to be spending the money."  I lasted about 4 weeks before I told him he was gonna end up dead anyhow when I killed him.

Hang in there, and we're always here to listen!   

I read this and started cracking up, that sounds like somrthing I tell my daughter every time she thinks she can stop taking her medication.