Hello from Canada

[What about me?]

Hi Everyone,

My name is Deborah and I'm a caregiver.  I met my wonderful husband 4 years ago.  We were married 2 1/2 years ago and he started dialysis 6 months after we were married.  He has PKD and is 41.  We have no children, but 2 critter kids.  A dog and a cat.  I've really been struggling the last while as a caregiver.  I'm exhausted and I just felt like I needed someplace to vent or to find out that I'm not alone or a bad person for getting frustrated sometimes.  I came across this site and thought I'd take a look around.

[MooseMom]

Oh man, if everyone who got frustrated was really a "bad person", we'd all be on the road to Hades.

No, you're not bad; you are normal.  ESRD and dialysis are just very frustrating issues, and that doesn't even count all of the peripheral stuff like drs appts, getting supplies, paperwork.  It can all just take over your life.

What is it that is most difficult for you, the caregiver?  Which particular task(s) are the most frustrating.

We have LOTS of caregivers on this site who know exactly how you feel.  I'm sure they'll be along shortly to welcome you to IHD. 

Thanks for joining us!  I hope you find we can help you out in some small way.

[Sugarlump]

Hello from 

[Poppylicious]

Hello from England!

My Blokey is on haemoD and my story is pretty similar to yours, although we're not sure what caused his kidney failure.  It is terribly exhausting sometimes (and I don't consider myself a caregiver).  Feel free to grumble and vent on here ... we all understand.

*huggles*

[What about me?]

Wow, this is my first time in any kind of forum setting and just having a couple replies brought tears to my eyes.  Thanks for reading!!  Just knowing I'm not alone and some acknowledgement makes a huge difference

Most of my frustration is that my husband doesn't realize how hard this is on me too.  Not only the worry and concern for him or all the appointments, supplies, etc but the running most of the household, and just missing having a partner.  A little acknowledgement goes a long way.  I've recently started seeing a counsellor.  I was feeling so down.  My husband is a wonderful man but sometimes I feel like he's milking his condition to get away with being lazy.  Over the last 2 years he's become more and more sedentary.  We live in a 3 story townhouse, so we have to haul supplies from the garage to the 3rd floor.  I have had some back issues lately (ligament damage in my neck) so it's really not good for me to haul the boxes.  When he does it, he carries on like he's going to have a heart attack, so I do it because I worry about him.  We're trying to find a neighborhood kid who we can pay to do it once a month when the delivery comes.  Every time he tries to do something physical (even walk a distance) he has to stop and says he's dizzy and doesn't feel well.  He won't discuss it with his Dr and just says that's it's because of his kidneys.  His blood pressure has stabilized and he's only a few lbs overweight.  I think it's just 2 years of doing NOTHING.  Anyone would feel that way and be out of shape.  I just don't know, is that part of life on dialysis or is that him being a bit dramatic (he does have a tendency that way).  I read about other PKD patients who are leading active lives and wonder.



   

[MooseMom]

That's a great idea, finding a neighborhood kid to do some hauling for you!  That's a very practical solution to a very common problem.

It's really hard to analyze what is going on in your husband's mind; none of us know him personally, so the best thing I can offer is some questions that may lead you to some answers.  He may be just a lazy sod, but do you think he may be feeling some depression?  Depression is common in dialysis patients, and depression can lead to real physical fatigue.  It's also often the case that once you stop moving, especially when you think you have a very good reason for not moving ("I can't do that because my kidneys might explode!"), it gets harder and harder to get up off your butt the more time that passes!  It is all to easy to let a chronic disease lead to inertia.  So I think your suspicions may be right on target...he stopped moving, got out of the habit of moving, and now won't move at all.

In saying that, though, it may be an idea to find out if his doctor is pleased with his labs; there may be some privacy issues there, but it might be worth making sure your husband is not anemic, or if he is, is being treated for it.

Seeing a counsellor is a very good idea because let's face it, if your husband refuses to change, there's not a lot you can do for him.  But there IS a lot you can do for yourself to make it easier to cope, and a good counsellor will be able to help in that.  It's also great to have a place like this website and post all you want.  If you need to vent, this is a grand place!  You are NOT alone...you and the people who feel just like you do are large enough in number to occupy a small country!

[looneytunes]

Hi Deborah and welcome to our community.     I also am a caregiver to my hubby who has been on dialysis since 2007.  It was a sudden and very abrubt change for our lives.  He has been through 2 years of PD and a couple of rounds of in center hemo but we have been doing home hemo with NxStage for the past year.  Like your spouse, he has limited energy and I also went through a period of time that I thought he was just being lazy.  But my hubby was a "hoss" of a man prior to the diagnosis of ESRD and so it was hard for me to believe that he suddenly just became lazy.  So...after quite some time, I came to realize that he really just doesn't feel very well a lot of the time.  It may be due to a poor diet, bad lab results, inadequate dialysis, depression, or a host of other things.  But, the fact remains that he doesn't feel well and has no energy to help me with a lot of the work around here.  So, like MooseMom says, the only thing one can do is to accept what is and make sure YOU are ok.   Do something nice for yourself every day even if it's just a short walk, a bubble bath, a glass of your favorite beverage, some retail therapy or whatever. 

Hugs to you!   

[monrein]

  to IHD.  I'm in Canada too, Toronto to be exact, and this illness can really take a toll on caregivers.  You are far from alone in your feelings and your frustrations and I hope you'll get the support and information you need from this site.  Is your husband on the transplant list?

[willowtreewren]

Hi, dear.

You are REALLY NOT ALONE! Sorry I had to shout, but you are pretty far off there in Canada! 

Another care partner, here.... Husband also with PKD, but recently transplanted.

You did not say whether you are doing PD or home hemo, but either way, it does seem that hubby should be a tad more involved - after all, he is the one having treatments!

Please vent all you want. You'll get some good advice here, not to mention being part of a super support community!

Aleta (in Tennessee)

[Rerun]

Hi Deb, and welcome to IHD.  I'm so glad you found us.  You will have support on here as well as learn more about what your husband is going through.

Rerun, Moderator       

[peleroja]

Welcome to the group, Deborah.  Trust me, you are not alone.  I've never been a caregiver, but being a dialysis patient is tough enough.  I'm glad you found us!

[boswife]

hi there and      and from another care'giver'/partner, i can say i've been through 'all that' as well       It's so hard to realize that mabie, just mabie they are not feeling as good as they say their not.  My hubby has/had always 'milked' any ill feelings as im a real softie and sucked up all that milk.. Well, we have made a solid pact that now that he is "really" ill and does need my help, that there will be NO teasing, fooling, or faking!!!  i just cant handle that along with all the REAL things to deal with.  So,,,,,, all has been so much better with that trust, and i can honestly feel for him when he needs feeling for..      Anyway, just wanted you to know heres another one with lots of feelings to share....  Glad ya found it here...

oh, and he's been on D for 1 1/2 years with us bringing it home now with nxStage for nearing 3 months now 

[paul.karen]

Hey Deborah.

I am a PKD dialysis patient.  I do PD at home and i work fulltime and it kicks my ass to do it but i have no other option.  PKD can be very painful for some patients compared to other kinds of kidney disease.  Our kidneys can grow to crazy sizes the cysts can get very big and pop which can be painful.

I have thought of going on disability but in the long run i think i would go crazy just sitting at home all day long.  Then I'm at work thinking I'm crazy to be working so hard so it is difficult to be on either side of the road so to say. 

As for your husband i cant say with any certainty but i know for myself climbing my two sets of stairs in my house at times can be very hard.  Other times it is no problem?  Crazy huh.  I hope he isn't playing lazy to get out of helping out.

For me i can kinda tell before i get my labs that i will need epo/arenesp and or an iron infusion.  I start to feel run down, get tired fast and have no energy so to say. Not that i have energy on any given day you just kinda learn your body i ques.

My advice check his hemoglobin and iron make sure they are in line with what they should be.  If they are low this can be a big cause of him or anyone having the feelings you explain in your post.  Could be a host of other things as well but these are easy to check and look at and the fix is easy.

Welcome to the group and hope to see you around often.

[galvo]

G'day, Deborah, and 

[RichardMEL]

G'day Deborah and welcome to IHD!

As you can see you're far from alone - a lot of supportive folks here. Hopefully we can help - even if it's just as a place to vent!

If hubby isn't working (you didn't say if he is or isn't but the context seems that he's not) then his days aren't filled with much except dialysis and being around the house. As you say that leads to doing little. However I don't have PKD and don't know what it's like for him. It could well be that lifting the boxes does make him dizzy or not well - or it could be an excuse. Have you suggested finding things for him to do to get more active, or going for walks together or something? Exercise is very important and specially working on the cardiovascular system will keep him in better shape - specially if he's on the waiting list for a transplant - and could well make him feel more able to help with the household chores. I did HD for 4.5 years and worked full time, lived by myself and kept the place in a reasonable state (my kitty didn't complain at least ). It is possible, though it is also true that dialysis can knock some people around more than others.

What I do think is very positive for YOU is that YOU are seeking support for yourself - both by seeing a counsellor and by coming here to vent, find out more info, talk to others and find support. It is a pity you are not seeing much of it from your husband - he is probably so self consumed with his condition that it's hard for him to consider your feelings etc. He's still young (I'll be 41 later this year so around the same age) and probably feels depressed because he can't do all the things he wants yet is unmotivated to try and do better for himself with what he has. It is a pity he will just blame his disease without discussing issues with his doctor - that's what they are there for. Still, you are doing what you need for you and your emotional well being and stability are just as important as his - heck perhaps even moreso in the context of providing care for him.

Again, welcome to IHD. I hope you find this a good community to be part of.

RichardMEL, Moderator