I feel just aweful!!

[TexanSummer]

I just don't know how you caregivers/spouses can do this for so long...I am envious. I feel like I am letting my hubby down right now.

I am getting so sick of looking up all this stuff about D, ESRD, what to (or not to) do, eat, etc. I am sick of getting up to get him something at his every beck & call it seems. I am tired of everyone asking about him....how is he doing, how is he holding up, how is he feeling.....but no one ever asks about me or even offers to help out a little...

I get up in the morning, walk 2 dogs, get our 6 y/o up & ready for school, get myself ready for work, make sure there is nothing he needs before I leave (or get him up & ready on the days he has D since we only have the one car & he has to drive me those days), go to work, come home, walk the dogs (because we live on the 2nd floor apt & the stairs are a challenge for him), fix dinner, get him what he needs (drink, meds, etc) on the days he has D, clean the kitchen after dinner, get the kiddo in the tub/shower, make sure laundry & dishes are done, look up & try to find answers to his questions (because for some reason, it seems, he can't look them up on the laptop right next to him), make sure the animals are fed, walk the dogs again, take a shower, help him with his shower (he still has the cath), then eventually go to sleep & start all over again....

I feel like he's taking advantage of me. I just want to walk out the door & drive.....maybe not come back.....but I don't. I love my hubby, don't get me wrong, I guess I'm feeling a little selfish right now....I don't know.....

It's only been TWO months since this started....I don't know if I can do this....I know I'm not alone, but it sure feels like it right now.

Thanks for listening...just typing all this out seems to help a little....

[Cordelia]

Hi Texan,

You are not alone. My husband went through the same thing, he was holding the fort down for me last summer when I went into renal failure.

Try to take a little time out just for yourself.
I hope things get better for you, hang in there

[WishIKnew]

Oh, I don't have any wonderful advice, I just wanted to say hang in there!  If my husband was feeling the way you are I would want him to tell me.  Can you talk to you husband about all of this?  Maybe there are things he can do to lighten your load.  I do PD, so my situation may be very different, but I walk our dog, do all of the grocery shopping and most of the cooking and dishes.  I do most of the cleaning and all of the laundry.  I'm not working and my husband is so, even though my pace may be much slower, I try to do a little at a time and over the course of the day it gets done.  Just saying, maybe if you talk things out there are some things your husband will take charge of so you are not responsible for everything!  Hang in there!!!!!

[willowtreewren]

I am getting so sick of looking up all this stuff about D, ESRD, what to (or not to) do, eat, etc. I am sick of getting up to get him something at his every beck & call it seems. I am tired of everyone asking about him....how is he doing, how is he holding up, how is he feeling.....but no one ever asks about me or even offers to help out a little...

I had a very hard time at first. I had a temporary crown come off and had to go to the dentist for some glue. They were all, "How is Carl doing?" and I just broke down in tears and said, "Carl is FINE. I'm the one falling apart!" 

They have been sooooo nice to me ever since. 

But I understand. It doesn't help now for you t hear that it DOES get easier. I think you kind of adapt to the demands on your time and psyche. But it is very important to do things for yourself, too. And don't let hubby turn his issues into a reason to make you a slave. The more he does for himself, the better he will continue to feel.

 

And remember to come here to vent. We get it. 

Aleta

[monrein]

I know your hubby is ill, I know because I'm the one with the kidney disease and I've been at this since I was 26 years old.  However, I think that the caregiver's job and role is perhaps harder in many, many ways and you've done an excellent job of describing exactly why this is so.

I don't know if your husband is taking advantage of you but you do need to stop doing everything for him and push him (gently at first but more forcefully later on) to do as much as he possibly can for himself....many of us have had catheters, we clean ourselves.  He can use the computer and feed the dogs and even take them out...that will help him also to be healthier by getting some exercise.  Stairs may be a challenge but challenges can be overcome even if ever so slowly.  He should be getting his own meds, getting his own drinks etc. 

I'm not meaning to sound mean or harsh but I think that the dependency that is being set up according to your description of things is unhealthy for you as a couple and as a family.  He may be depressed, clinically depressed and perhaps his doctor can help with this.  I have great sympathy for you both in this situation but if things don't shift somewhat I too could see myself driving away into the far of beyond.  Tell him how you're feeling, as hard as that might be, but you're his wife, not his nurse or nanny or maid.

Please vent here whenever you need to. 

[lmunchkin]

TS, Im not going to sit here and pretent that I have not thought or felt the same as you.  If I did, I would be lying! You are overwhelmed right now and you need to vent your frustrations!!! This is the right place to do that for sure!
This is fairly new to you and remember when it was new to me!  And so many people dependent on you other than your husband, make it 3 X as hard. Bless your heart!! Not knowing your husband at all, he may be taking you for granted and not realizing he is doing so. There may be alot more that he can do but possibly feels his disease keeps him from it. Notice the word "feels".  Doesnt mean he can't do it, he just "feels" that he cant.
Shortly after my hubby was diagnosed (2004) with this awful disease, He was devastated!! I was still in denial cause I really did not understand the severity of his condition!  I was ignorant of it all. I did not understand why he couldnt do things we used to do together! It infurated me to no end.  But as time went on, I learned alot about ESRD, and the effects it has on them who have it. But TS, I bet if you sat him down and told him just what you told us in a different tone, that you may find that he had no idea you felt this way!  Or if you cant talk with him about it, show him some things that he can do to help you around the house. My hubby can't drive due to his eyesite, and had right below knee amputation, to where he had to depend on me for thiings.  I dont take him to a center cause I do NxStage on him at home after I get off from work. 

My husband did work still when he was diag. but gave it up Jan. of this year. He doesnt know it but they had to release him due to his memory not being very well.  I took him to work then went to my work and picked him up after I got off.  We went home and put him on the D. machine, fixed dinner, then eat and clean up mess,, then 3hrs later take him off machine and we would get ready for bed to just repeat the same thing the next day.  No it is not perfect for us caregivers but it is necessary that we maintain a certainly stability and assurance for the ones that we love!  I know it is hard for you TS, but once you get some stablitiy going in your lives, you will make it better.

Are you being selfish? I certainly don't think so!  But if you are, you have earned the right to be.  I really just believe that it is not selfishness you are feeling, but more "overwhelmed".  The reason I believe that is cause I recognized your frustration and have gone through it myself!

Show him some things that "you know" he can do that wont be so physically demanding.  I believe you will be surprised at his enthuasim he will show you. Be meek, humble, & sweet cause it will draw more to you than being mad & frustrated all the time, trust me!  I tried the angry & frustrated and got me nowhere!

Just give it more time TS, and you will see it will get a little easier and more routine for you as days go on.  He needs you now more than ever! There were more than a few times I would have liked to "WALK", but always remained and it truly has gotten better over time.  Not to say we don't still have medical issues, but the handling of them is much better!!!!!

Hang in there TS.  Hope that my 2cents have helped!!

lmunchkin

P.s.  There is an ole saying my grandmother always said to me when I get worrisome and fidgiting all the time, "Dont trouble trouble till it troubles you."  Make everyday the best YOU can make it!  And remember, He truly needs you more than you need him! Dont mean that in an ugly way, just the facts as they stand right now!  Keep us posted, TS, and we love you!

[boswife]

Gosh, im all tuckered out from my 'caregiving' day and just want to add some hugs  and thanks to those who have already answered here.  That road your on right now is the toughest going right now, but hopfully, with using some of the suggestions given here, things will get better.  Not that they still wont have their mountains and vallies, but with 'their' help, it is an amazing reliefe in each job they tackle.  My hubby (now on home D) is running circles around me and is master cleaner of kitchen, mopper and cleaner of our hardwood floors, and is back to riding our lawnmower and  so many things i thought he couldnt do.  It just took feeling a bit better, "knowing" my needs of help, and then letting him do it.  I know i was one to over compensate his illness and i think led him into helplessness at first.  I send best wishes to you  and          You spoke for most of us, so you are not alone in this..

[RichardMEL]

I'm tired from reading all that you do in a day (wait, do dogs need THREE walks?) let alone actually doing it.

it does seem, on the surface, unfair that hubby can't even do relatively easy things like looking up stuff on HIS condition on the computer, or heck even organising his own medication (!) - OK I can handle the memory issues, but heavens if it's in a pill box or something all he has to do is go to the kitchen(or wherever it is), get it out and take it. It's NOT HARD and doesn't require skills like getting up stairs or anything like that.

Now I am loath to pass judgement on someone I don't know in a situation I don't know - just because I did OK on D and was able to work, look after a house by myself (and my cat ), keep the meds going blah blah blah - everyone's different of course but it does seem that while this is all new to you both at just two months, there's a bit of overreliance going on here - and I can definitely understand your feelings as a caregiver that you're left to hold down the fort and it's just too much and you have little support.

I agree with the suggestion to find things that you feel he CAN do, like organising his own medication, finding stuff online, heck would it kill him to, if he's home most of the day, to work on dinner for you all a few times a week-m,aybe on non D days? I know D can tire you out - specially after treatment but it does seem that he can do more around the place to help you out. Maybe he does need a bit more time to stabalise on dialysis though to get more general energy and a more normal feeling/routine going though.

Have you discussed these issues with him? I know it's a difficult subject and he can turn around and say "you have no idea how hard it is for me and how I feel" (and so on) and to a certain extent that is absolutely true, but you observe him day by day and have a much better idea of what he's capable of and not, and I feel that while there should be allowances made for where he's at, it shouldn't be a free ride also.

As for you and getting support - I've never been a caregiver (unless my cat is included!!) but I can certainly understand how lonely you must feel when friends/family don't seem tow ant to help, or just feel you can handle it all etc.. and you do need help - even the odd break to recharge YOUR batteries (spouse dialysis?!). Maybe you should investigate options that might help like some kind of respite care for your kid and/or husband so you can get away for a timeout, or some kidn of help around the house eg: cleaning, cooking - even if on an irregular basis - just things to make your life a little easier.

Anyway I hope things improve for you.

[cattlekid]

Oh my, I am tired just reading all of that - you're right, you do have a lot on your plate! 

I see that you mentioned that your husband is only on the second month of dialysis.  I will fully admit that I didn't do a hell of a lot on the days I came home from dialysis for the first couple of months.  I work full time and am incenter 3x per week, 3.75 hours each treatment.  For the first few treatments, I literally came home and went to bed.  Luckily, I was fine in the morning.   Slowly but surely, I started tolertating the treatments better - now, I come home with a decent amount of energy and am still able to get a few things accomplished in the evenings even after D.  Saturday night, we went shopping and out for dinner afterwards.

I concur with the other posters who stated that your husband should be requested to take more responsiblity for himself, house, kids, pets etc. as he continues his treatment and starts tolerating the treatments better.  Maybe the social worker can get involved?

[Poppylicious]

I feel like I am letting my hubby down right now.

How are you letting him down?  You do EVERYTHING!  That is completely the opposite of letting him down!

I am getting so sick of looking up all this stuff about D, ESRD, what to (or not to) do, eat, etc. I am sick of getting up to get him something at his every beck & call it seems.

STOP!  He's a big boy.  He knows how to use a computer, and he presumably knows how to help out around the house and take care of himself.  He can walk to the kitchen/wherever whenever he needs something.

I am tired of everyone asking about him....how is he doing, how is he holding up, how is he feeling.....but no one ever asks about me or even offers to help out a little...

Next time, say he's fine but you're having to juggle this, that and the other, and gosh, do you wish you had time to sit down with a cup of tea and a good book.  Chances are they'll either a) never ask after him again, or b) offer to help in some way. 

 

It WILL get better, I promise.  Right now you see your future as today rolling into eternity.  It won't be.  And this is going to be a struggle, and nobody (really, nobody) would think any less of you if you just threw the towel in now and said, 'Nope, I'm not doing this anymore.'  But you're here, with us, and that means that however bad it gets, you really want him in your future, kidney-less or otherwise.  That's something you need to hold onto.  We are always here, always willing to listen to somebody else grumble ... 

You are both so vulnerable at the moment, for different reasons.  Try to involve him in daily life ... bathe the kiddo together, look up answers to his questions together, hand him the tea-towel so he can dry whilst you wash (he can have a chair if he wants!)  Little steps that might make him realise that he wants to do more around the house. 

I know it's a difficult subject and he can turn around and say "you have no idea how hard it is for me and how I feel" (and so on) and to a certain extent that is absolutely true.

This made me chuckle, Richard.  I think Blokey only ever said it to me once (his mantra was usually 'Why do these things always happen to me?' but he seems to have grown out of that now.)  I don't remember my response, but I'd like to think that if he ever said it to me again my reply would be something along the lines of, 'No actually, YOU have no idea how hard this is for ME and you have no idea how I really feel because I keep everything bottled up inside so that I don't upset YOU, you plonker!'

Knowing me, I'd probably just bite my tongue and bottle it up inside instead, so as not to upset him.

 

Summer, things will start looking brighter ... just come back and vent often (it really does help!)

*huggles*

[RichardMEL]

aaah poppy my love if only you weren't married...  *huggles*

of course your point is absolutely valid - each side can't possibly know how it is for the other - and it doesn't mean that the lot of a patient is "worse" or "better" than the caregivers - they are different situations and roles, and no less important. I guess the trick is finding a balance that isn't too lop sided in favour of one or the other (like all good relationships - NOBODY likes a one sided one).


by the way another good point to Summer - that she's hardly letting hubby down by bending over backwards to the point of implosion doing everything she possibly can to make his life easier - almost to the point that it sounds like she's being taken advantage of - or at the very least taken for granted in some ways - while hubby adjustes to life with dialysis etc - I am not suggesting this is a conscious act/decision on his part - moreso that he's focusing on what he's dealing with, and with her taking on the role to do as much as she possibly can, it's unlikely he's going to jump up and say (in the middle of dealing with his own stuff) "oh yeah, let me deal with the laundry today and pop on a tin of baked beans" (ok the BB comment was a joke).

[okarol]

Lots of good suggestions here.
I think when someone is new to dialysis it is natural to want to jump in and take the pressure off them.
And thank God you were able to.
But it's ok now to step back a bit, tell him you're getting burned out and come up with a plan together.
And next time someone asks how he is, tell them, "Why don't you give him a call? I'll bet he'd love to hear from you. Better yet, come get him and take him walking with the dogs."
Life with a 6 year old can be very challenging, and you're working too? Wow, I hope you get some help and support soon from your hubby.
 

[looneytunes]

Yesterday I started to reply to Tex but am glad I waited.  There are so many good comments here but I really like this one from Okarol.  How right it is.  When the diagnosis was new, I jumped in and began taking care of everything so hubby wouldn't feel like he had to.  Over time, this turned into enabling and there was no longer any need for him to do for himself so he didn't.

About 6 months ago, I implemented a campaign to allow him to start taking care of things himself.  It has worked out very well and I no longer feel so overwhelmed by all of the duties I took on.  I told him that part of him doing home treatment involved him doing the treatment and he needed to learn how in case I was not "able" to do things for him.  That discussion evolved into a further dialogue of how much of my time was spent taking care of his treatment.  He now takes care of himself and his medical treatment for the most part. 

As far as running the farm and the house, well...I just have to look at it like I was a single person.  If I was alone and it had to be done...I would be the one to take care of it.  He helps when he feels able and I take care of it when he doesn't.  I think over time he has come to feel "more able" partly because he was feeling "left out" when I would just dig in and do it leaving him here in the house. 

Hugs to all of you!   

[Hazmat35]

I guess that I have it good.  My G/F has been with me from day 1 on this.  She knows so much about Dialysis and the treatments that it is scary.  She can talk to dr.'s and nurses like she's been studying this for years. 

She gets all my things ready for dialysis before I go (my book, laptop, MP3 player, what ever I'm using that week to stay busy), a clean shirt to change into (because i go directly after work), by blanket, snacks, ice chips, frozen handkerchief (to keep cool with and pat my head). 

She is generally there with me the entire time and then drives me home.  Helps me change clothes and puts me in my chair where I remain for the rest of the night. 

She gets all my meds together and gives them to me at meal time, and calls in all the refills ( at least I pick them up).  She does almost EVERYTHING for me, and I don't even ask her too.  When I try to do something on my own, she gets upset and says that it is HER job to take care of me, because I take care of her.  Sometimes I worry, that she will just get frustrated someday and leave, so I definitely do not take advantage of her. 

[okarol]

Yes Hazmat, I'd say you have it very good. How do you take care of her?

[RichardMEL]

Well hazmat can you clone your g/f so the rest of us can have some of that good lovin'? 

I guess this is where there's a bit of a bind - because she's SAID she feels it's her job to do all this stuff, if you try and do stuff for yourself, you upset her (which you don't want to do!) and so, you can lead a charmed life. The real question is if she feels it's her obligation to do this stuff for you because you're sick, or it's just that it is her nature and it is generally something she wants to do. Sounds like that's just her, and that's wonderful for you. Hopefully, over time, she doesn't resent all the work she's doing - but at least you've shown you're willing to do more for yourself, so I think that's good in that if she ever thinks it's too much or whatever you can say "Well yes, honey, I can do this, this ... and this..." etc.

Getting back to Summer though I had been thinking about that situation a bit more during the night and, after reading LooneyTunes response it also fits in with what I was thinking. There's an aspect that hasn't been covered here which may be important. That's one of self control. What I mean is that hubby is new to dialysis, and he's finding himself in a situation where a lot of control over things in his life is taken away - his health, his ability to work, etc - now if further things that he can do are taken from him (again, not on purpose or in a mean way) like sorting his meds, or doing stuff around the home etc, that may be a negative over time in that he may feel that he may have no control over ANY aspect of his life because it's all in the hands of medicos, technicians and even his wife. Looney's example of getting hubby to take more responsibility for his own things, while seemingly tough, might actually be a great thing because there he can exert some control, do things for himself AND feel a sense of acomplishment - even if it's something little like helping with the cleaning up or cooking or taking some things off you to do to help out. I know when I was on D and having to do that all for myself (I didn't have the clone g/f ) while sometimes it could be a struggle, it also felt really GOOD to be able to do things for myself - to prove that despite dialysis and kidney failure I could still work, and keep my apartment mostly liveable, keep the cat in the lifestyle to which she is acostomed, etc.

Over time this may well become an issue and maybe something to consider as part of the mix.

Just some further thoughts anyway.

[Poppylicious]

Wow, Hazmat.  Now I feel like a complete arse.  I very much leave the dialysis side of things to Blokey.  He has his dialysis bag which disappears from the hall on MWF and in which he keeps everything he needs.  I never go in it.  He could have mouldy sandwiches and empty cans of coke in it for all I know, or female nurses numbers.  He sorts his own medication out (I nag him and collect it, but everything else is down to him.)  I've only been to dialysis four times in nearly two years; Blokey doesn't like me going because he's worried I'll be bored.  For me it's important that he has responsibility and control of that aspect of his life; I think it's important for him too.

In return, I take care of the house/garden/cat/fish because he also works full-time and is doing a degree course (part-time.)  His only real jobs around the house are changing the lightbulbs and switching on the dishwasher when it's full. Richard brings up a good point about resentment.  There are times (not often, usually at a certain time of the month *grin*) when I resent it.  And even though I very occasionally resent it, I still get peeved when he tries to (nicely) interfere in my routine.  But I never tell him because, you know, he's ill and I don't want him to feel that he's a burden when life is so sh!t for him in so many other ways.  It's my way of taking the strain and stress out of the little things and I am happy to do it.

I suppose we all deal with things in our own way, and we all get into routines which suit us.  And eventually Summer will work out the best way of coping and she and hubby will get into a routine. It may not be a perfect routine, but as long as she's comfortable and (rarely) resents it, then it should all be fine.  It can take a lot of fine-tuning and adjustments on the side of both/all people involved and that's the tricky part.

But wow, Hazmat!  Your gf is far too lovely!  I hope you show her your appreciation ...

 

And Richard ... awww, *huggles* for not having the clone gf to take care of you.  It must have been pretty hard; dialysis, work, cat and house.  I don't think Blokey would cope if he was single.  He'd probably have moved back in with his mum so somebody could look after him!

[RichardMEL]

Well I've always been the sort to do stuff for myself if I can and try not to rely on others too much. This isn't because I don't trust anyone, or anything like that just that I've always had to face challenges like this mostly alone (first poor eyesight, then kidney failure/dialysis/now transplant) which are very personal things that others can only help with things "around" them (like my sister helping to clean out my place more properly once I had my tx and looking after me for the first 3 weeks after). In general though I've always tried to do this stuff for myself - after all if i don't give a damn about my body/situation who else will?

Sounds like Blokey is similar - he wants to deal with his D stuff, meds etc (and it is probably also his way of trying to not burden YOU with HIS shit) as much as his way of asserting some control over his life in that he CAN do all these things (even if some times it's a struggle) so damnit he will.

Like you say though when you get a routine that works for you both - like he does the dishwasher, lightbulbs and stuff, while you deal with the other stuff, that it can just work.

[TexanSummer]

I want to thank everyone for your input...when I started this, I was just really upset at myself for being upset in the first place. Charles does help out when he can....cooks dinner sometimes, helps out with the washing/drying of laundry (just can't seem to get him to fold/hang yet), & every afternoon he helps our daughter with her homework. I guess the night before I wrote, I should have said this sooner....at 2:45am (we had both fallen asleep in the living room watching TV) he woke me up & instead of saying that I should go to bed, he asked me to fix him a drink....something I knew he was fully able to do himself....I didn't fall back to sleep for at least another 1- 1 1/2 hours after that....I had been waiting on him all day before that too....he was too busy playing his PS3 to get things for himself & I had just gotten fed up with it. There are quite a few times when he asks me for something I know he can do for himself.....but I do it anyway.....I do let him know that I don't like having to do some things for him when I know he can....sometimes he thanks me, other times....nothing.

He's gotten his AV fistula surgery done now....was done last Thursday....he got an infection of some sort in the cath site & on Friday the center gave him a large dose of IV antibiotics....they started him on 5 hours of D today....he drove himself there this morning & when he called me a little bit ago, he was slurring his words & driving himself home. I told him to stay home & am having his mom pick me up from work. I don't like it when he does that, but he hates being "stuck" as he calls it. I am putting my foot down when I get home today....his driving privileges are gone until further notice.

Thanks again for listening!!!!!

[Poppylicious]

... when I started this, I was just really upset at myself for being upset in the first place.

Sounds like me on a daily basis. 

 

[lmunchkin]

Yea Ive done quite a few of that myself TS, and felt awful afterwards. But it does seem like at times they may expect too much from us.

I was lucky as far as the driving went. The doctors told him no more driving!  But I must warn you, you will be taking his last bit of Freedom!  Not that he will, but he might resent you for it.  I would just ask his doctor to do it due to his medical condition.  Seriously girl, that is what I would do!  Now my husband tells everyone that he likes the "Chauffeured" feeling!  What a Ham, hah?

lmunchkin 

[karrye]

Ah Texassummer believe me I know how you feel and boy its a pain in the...hmmm...rear.  It does get better, abet it takes time to adjust and to actually accept it.  Its just a matter of having a balancing act and accepting what is more important atm and what is not.  Yes, it feels like the ailing partner/spouse is all that everyone is asking about, be thankful that people ask.  Now it has been 5 months since my husband was diagnosed ESRF and guess what? Rarely does anyone ever ask about  either of us.  Its like we fell through the cracks.  So, some things are a blessing and be thankful. 

Huge  !!

I have you all in my prayers and especially the youngster, who no doubt, is equally stressed. God bless and keep all of you!