Quiting home dialysis

[katieking1981]

I recently posted here about care giver burn out and unfortunately the stress of fitting in dialysis during the holidays did me in. After numerous issues with medical supply deliveries gone missing, Pureflow malfunctions,, and a needle popping out, I'm done. The problem is I don't feel good about the decision, instead I feel really guilty. Now we're scrambling to find daycare for our 7 month old so that John can go in center after work. Plus I know John's quality of life has been better since being on home dialysis. He says that he would rather go in center than stay home and put stress on our relationship. I appreciate him "letting me off the hook", but I can't help but feel that I let him down. I just hope that it works out for the best.

[Rerun]

Maybe he can find a nocturnal shift.  He will get twice the hours worth of cleaning and he will feel better.  Worth a try.  He will be gone 3 nights a week but you can give him that to be stress free and not feel guilty.

[katieking1981]

I think nocturnal is a great alternative. Unfortunately, his davita center doesn't offer it and he likes the staff and doctors too much to switch.

[MaryD]

Maybe after a month or three, you might feel like home haemo again.  A break from something never did anyone any harm.

[amanda100wilson]

 Does John need a caregiver?  I do mine myself.  My husband is generally in the house in case there is an emergency but otherwise it's down to me which is the way that I like it.

[MooseMom]

I think nocturnal is a great alternative. Unfortunately, his davita center doesn't offer it and he likes the staff and doctors too much to switch.

Then that is his decision to make, and so you shouldn't be feeling guilty.  If he looked, he might find a center that offers nocturnal with a staff that he might grow to really like.

People change modalities as their life's needs change.  Having a safe and happy home environment is so important to those of us who are chronically ill.  Home hemo might make him feel better physically, but if he feels that he and his treatments are proving to be too stressful for you, then he will feel guilty.  It's a tradeoff as most things are in life.

He may do perfectly well with inclinic dialysis.  See how it goes.  I just hope he will be honest with you if he feels that inclinic is making him feel worse.  Then it might be time to rethink.

[CebuShan]

Maybe after a month or three, you might feel like home haemo again.  A break from something never did anyone any harm.

I totally agree with MaryD. Sometimes you just need a break.
Have you thought about seeing if there is a friend or neighbor willing to be a backup? I just had 2 friends express interest in learning what they would need to do to help out if needed.
Best of luck to you both. Just feel comfortable with whatever decision you make.   

[jbeany]

Why not just take a break?  Maybe see if your clinic will let you keep the NxStage set-up for a while.  My center offered "vacations" from NxStage - when it got overwhelming or when your partner couldn't be there, it was fine to schedule regular D for a time.  Maybe a break would give you a chance to rework the schedules and responsibilities so it would work better for both of you.  Make a list of what bothered you most, and work with your center to find ways around them, perhaps?  Maybe a better supply of back-ups for missed deliveries, or maybe a switch to all bags and no Pureflow?

There's nothing wrong with saying "This isn't working for me," though, so don't let the guilt get to you.  Plenty of people try home hemo and quit because it is too much for them.

[lmunchkin]

Oh Katie, I can so relate to this!  At first, I thought, Lord what have you got me into now.  We had talked about putting him incenter.  He did not want it, and truthfully I hated the thoughts of it myself, but I would have a spare bedroom back and no machine of supplys taking up our home.
Then in Feb 2011, I slipped on some ice and broke my ankle on both sides of it.  I could not weight bear for at least 4-6. John had to go back in-center till I had surgery to repair and recovery was indefinate. Talk about scared, I was worried about who, what, when and where to take care of John.  Well, God supplied everything.
Long story short, I was so thankful to have him back home on NxStage, and I would much rather do him when I can on my schedule.

That being said, don't ever feel quilty about things you can not control. He wants what makes you happy and I admire that in him.  He knows your'e stressed and overwhelmed.  He also knows if Momma aint happy, no body is happy!  lol

I rescently had an offer to join with my church & Operation Blessing to go to New York & New Jersey to help victims of Sandy out.  I couldnt get John in-center and no body offered to take him back & forth to clinic.  Not because of any reason but the Holidays.  I took that as a sign that now was just not the right time. 

I have no problems putting him in for a little while if I need to do something constructive.  He understands that too!

It would be nice to get your husband in the nocturnal side of in-center.  That way, he will get adequate dialysis.  But if not, then don't feel bad.  Certainly don't feel quilty about it.  There are lots of people on this site who do in-center all the time.  They are happy with it, no reason the two of you should be any different.

God Bless,
lmunchkin

[bevvy5]

You have to make sure you oxygen mask is on good and tight before you're of any help to the rest of the clan.  So if it's just not working, it's time to look at other options.

I do agree though about seeing if you can keep your setup until you've both had a bit of time to see how in center works out.  And it may be that John will decide to explore nocturnal in centre - ultimately that's his decision to make.  Personally I find that the hardest part to deal with, that ultimately they must decide what treatment they are going to choose, etc.

Do take care. 

[katieking1981]

Thanks everyone for your input. John's nurse is really trying to help us problem solve so that we can continue at home. He is set up in clinic for the next week so that we have time to think it over.

We are looking at training his dad as a back up. John is pretty self-sufficient, but cant put his own needles in or take them out due to tremors. Also we may be able to schedule a couple respite days a month. Being able to take breaks does help, but doesn't solve all of the issues.

We live in a 2 1/2 bedroom apartment with hardly any storage. Clutter has become a big issue for me. We started home hemo, before the baby was born. Now he is 7 months and the apartment is filled with baby toys, swings, a play pen, ect.  So baby stuff on top of dialysis equipment and supplies has made cleaning super difficult. I'm also worried about the baby getting into things or picking up runaway caps and trash from the machine.

We have a lot to think about over the next few days. We're really lucky to have supportive family and a supportive nurse. So hopefully we can make a decision that we're both happy with.

[Simon Dog]

If you switch from home to in-center, be sure to say NOTHING that could be used against you in the future if you decide you want home hemo.    Saying something like "it fits your current lifestyle better at this time" is probably safe, but if you say you are "overwhelmed" or "burned out" you may find that statement pops up as an obstacle when you try to get back into a home treatment program.

[MooseMom]

If you switch from home to in-center, be sure to say NOTHING that could be used against you in the future if you decide you want home hemo.    Saying something like "it fits your current lifestyle better at this time" is probably safe, but if you say you are "overwhelmed" or "burned out" you may find that statement pops up as an obstacle when you try to get back into a home treatment program.

Oh, that's a VERY good point!!!!

[boswife]

Im on board with what everyone has advised    Theres been times (mostly the first 5 months  ) that i would have given about anything to have hubby go back to incenter so i certainly understand the need.  We didnt do it but 'if' there had been a nocturnal in our area, i wold have strongly encouraged hubby to give it a go.  OUr main reasoning for staying home is, well hubby is darn happy with it..lol, and i have grown accustom to it.  I dont know that i LOVE it as some (ahh hem  imunch  ) but i am happy that we stuck it out and now im so darn protective of those buttonholes of "mine"  that i cant even think of taking a break and letting someone else mess with them.  Sooooooo, you see different perspectives here, and we're ALL different in our needs.  WE're retired so this should be simple but even then, it's still a whole bunch of Dialysis time.  I surly say take a break, check it out, and see then how ya all feel............... and no guilt!!!!  We all must do whats right for us,,,,,,,,And our kido's   

[CebuShan]

I can certainly relate to the clutter issue! I have a 1 bedroom house and all of my supplies are in my "computer room" aka the small entry room! I have a cat and dog that both like to explore & I'm constantly having to chase them away from the shelves with my supplies!   

[katieking1981]

Thank you all again for all your advice. It looks like we're starting back home on Wednesday. John's nurse is going to come over for a home visit that day and help us get more organized. Hopefully, we can get a good system to make home hemo easier. I'm also counting on John to do what he says he'll do and be more on top of his orders and

The deciding factor is that John's quality life is so much better with home hemo. I'm also really hoping that John gets a transplant in 2013. If its not his year for a transplant at least he'll be happier and healthier than if he went in center.

[noahvale]

^

[ianch]

I'm sorry to hear he has given up.  I'm fortunate that my wife needles, and i guess also that our machine is pretty robust (ran for 9 hours over night with no alarms last Saturday). I slept like a baby.

I do appreciate though how it can be stressful if things are not going well.  I recall it took a few weeks to iron out the machine config bugs so it didn't alarm at 12am, 1am, 2am, 3am, etc.   I hated facility sessions and desperately wanted to give those up, so I do see where he is coming from - even if its from a different angle.

Give facility sessions a good again, and you might find he wants home hemo later on.  Its a choice and emotional stability is as important as good treatment.

Incidentally I went home because 15 hours a week away from family was causing my wife stress.