Burn out - home dialysis

[katieking1981]

I'm 30 years old and have been doing home hemo with my 33 year old boyfriend for 6 months. We also have a 5 month old baby and I have an 8 year old daughter. We both work full time. I work four days a week, 10 hour shifts. Most nights we do dialysis after I get home from work.

John takes most of the responsibility for his dialysis. He is just not organized and I feel like we're always running out of things or scrambling to make a batch. I do his needles, because he has tremors. Sometimes I feel like doing home dialysis is no big deal. Other times it seems to be a big inconvenience and the cause of tons of stress.

We had some equipment issues a few weeks ago and decided to use the time as respite. John went in-center for a week. He ended up feeling so sick and his blood pressure sky rocketed) that he ended up staying home from work. It was awful seeing him feel so crummy. Now I feel stuck continuing at home.

I just wish that one of us could afford to work less. Or that we could afford daycare, maid service or an in home care taker. I know none of those are real options, but I can wish right?

Thanks for letting me vent.

[MooseMom]

I admire your tenacity because I just can't imagine doing dialysis of ANY modality where both husband and wife are working full time AND have young children (one being a baby!) at home. 

That's good that John takes most of the responsibility for his treatments; that's as it should be, if at all possible.  Maybe the two of you could work on setting up some sort of system that helps him to be more organized, a set schedule of some sort.

Please vent all you want!

[Lillupie]

Is there anyway that one of you can only work full time??Can he do PD at home?? I do PD and am on the machine for 8 hours a night.


Lisa

[katieking1981]

Thanks for the suggestions. Unfortunately, financially we are already stretched tight and trying to buy a house. So no we both have to continue full time. John isn't a candidate for pd, because he has severe scaring to his abdomen from previous surgeries.

I really do feel like home dialysis is our best option while waiting for a transplant. It's just that some days are good and some days are a challenge.

[smcd23]

And I don't want to sound like Debbie Downer, but even if he COULD switch to PD, I think you'd have many of the same problems. My husband did PD for 2+ years, and we have a 3 year old son. My husband would set up his machine but the supplies! PD generates a lot of waste in the form of boxes, tubing and plastic wrapping. My husband was TERRIBLE about breaking down the boxes and getting them to the dump. I used to call the pile of boxes Mt. Boxsuvius because they'd get so high, and randomly fall down in the middle of the night, or prevent me from going to the closet, dresser etc. So I can totally sympathize because we faced similar challenges.

Hubby doesn't work, and he is now on in center hemo. He is actually feeling a lot better on hemo than he was on PD. In center just takes a few to get used to because it's not like home hemo where you are getting dialysis every day. If your boyfriend wanted to try in center to make it easier on the rest of you, he would adjust to it. I honestly think switching in center made life so much easier in our home. We have one less thing to stress over.

It's very hard being the partner of someone on dialysis. You are doing a great job. I think all caregivers get burned out and frustrated with everything. You are not alone in your feelings, and they are very valid. Just try to stay strong and keep doing what you do, and make sure you communicate with each other on the things that are difficult but also make sure you let him know when things are good, like I am glad you remembered we needed more supplies and ordered them, it makes things so much easier etc. I don't know how much it will help, but it would hopefully encourage him to stay on top of things

 

[lmunchkin]

Yes we caregivers get burned out alot!  Thank God we are healthy enough to handle it. Our loved ones with this Crap, do not have that luxury, unfortunately!
I know it gets hard for you sometimes, just hang in there and try to work together more. Communicate as much as possible and tell each other how much you love one another.  There might not be a tomorrow, so do not let a moment go unspoken.

God Bless,
lmunchkin

[Poppylicious]

Hubby doesn't work, and he is now on in center hemo. He is actually feeling a lot better on hemo than he was on PD. In center just takes a few to get used to because it's not like home hemo where you are getting dialysis every day. If your boyfriend wanted to try in center to make it easier on the rest of you, he would adjust to it. I honestly think switching in center made life so much easier in our home. We have one less thing to stress over.

My experience with my Blokey was that he did so much better (and we were both so much happier) when he was on in-centre haemoD too.  We don't even have children, although we do both work. I found it hard enough to cope with just Blokey and the cats when he was on PD; throw in at least one baby/toddler as well and I think I would have gone completely nuts! I therefore have a lot of admiration for anyone who can cope with the whole shebangle.

If it helps Katie, keep venting.  Share some good times too!

*huggles*

[MooseMom]

Please keep in mind that katieking has already said that her husband DID do incenter hemo for a week, and the result was that he felt so ill that he missed a week's work.  And if the whole idea is for him to keep working, then it seems that for him, incenter just isn't an option.  Sort of defeats the purpose.

Katieking, home hemo is a very good option when you're awaiting a transplant.  Home hemo is certainly not without its challenges, but the REAL challlenge is to remain as healthy as possible so that once your husband DOES get his tx, he will have a healthier outcome.  The "easier" option isn't always the best one. 

No option is easier all of the time.  I hope he gets a tx soon so that you won't have to wrestle with dialysis anymore.

[katieking1981]

Thanks again for all the support. Just to clarify, John did do in center hemo for 6 months prior to us starting at home. Logistically it makes more sense to continue at home, ie we'd have to find additional daycare. Also he feels so much  better doing home dialysis. He is off blood pressure meds and had less fluid restriction. I'm also happy to have him home with me in the evenings.

But it's a huge trade off. Its easier when the machine runs right, but nights that we have problems are awful. I'm usually helping with homework, making dinner and changing diapers, doing laundry, ect. Sometimes we have to have family help us with getting my daughter to Girl Scouts. We have tons of boxes and supplies in the house that we don't have room for.

We've talked about going back in center, but when it all weighs out, John feels so much better at home. So it's worth all of the extra stress. He is going at the end of the month to get evaluated by the transplant team and hopefully put on the list. From what I understand, he'll have a 4 to 5 year wait. Maybe down the line John will end up in center, but for right now we're committed to making it work.

[Sydnee]

It's hard with kids. With a baby it has to make it even harder.
I know what you mean about boxes you have no room for.

[bevvy5]

I always think that no matter how hard it seems, it's better than giving up the time visiting him in the hospital.  THat happened all too often before Greg started Home Hemo.

I can't even imagine doing this with young children.  You are an amazing woman and you have every right to just have had enough every once in a while.  Then it's on with the race again.

Take care.

[okarol]

Does the local center offer nocturnal hemo? If he was getting more dialysis in-center he might feel ok. I'm sure you've already considered it, but thought I'd mention it because he could get it done while your family is asleep (I know, baby probably isn't!) and it could keep your home life a little less chaotic.
Good luck - you both have a ton of responsibility and it can't be easy! 

[katieking1981]

No. Our center doesn't offer nocturnal dialysis, but maybe  it's  a good option. Maybe I should do some research. I really don't know anything about it.

[bevvy5]

Definitely worth looking into.  It's the ultimate in multitasking - sleep and dialysis at the same time.

[Joe]

I do CCPD at night and really love the freedom it gives me during the day. I do have to do a manual fill in the afternoon, but that only takes about 20 minutes. The nice thing is that I'm usually free of dialysis stuff for most of the day.

[cassandra]

Mmm, maybe its time we start looking into somekind of relieve dialysis help for both carers and 'patients'. I'm only doing HH for a week, and am worried about my hubby burning out. I'll start looking into that, and mention it to the HH nurse and local health authority. Its no more than fair. Paid techs/nurses have at least 5 weeks holiday a year (UK) Must be cheaper to not have to treat a carepartner too. Must be better for the 'patient' too. Or am I just dreaming here?

take care Cas

[katieking1981]

I would definitely ask your nurse. We're allowed to do respite and John can go in center for a week a couple times a year. Also, his nurse is fantastic, if we get stuck, she'll take him in her office and run him on a NxStage. She really is the best and its such a relief to know she is there for us.

[bevvy5]

We're Canadians so completely different system but Greg could have his dialysis at the hospital or clinc whenever he likes.  As well, we have fantastic nurses - while we were training they had home hemo people in there who were having issues with one thing or another.  Would come in for a week or so, three times a week and she would assist them sort of around our training.

The issue in our house would be that I do all the dialysis stuff, which is fine, but Greg would never willingly agree to go to the hospital or a community clinic unless I was pretty much comatose.  So to be honest, the respite is considered such for the patient, not the caregiver.