In-Center Respit Care

[kporter85db]

I have been doing HHD on NxStage for about 6 months now after doing PD for 2 1/2 years. After about three months I went in-center for two weeks to establish my buttonholes. My wife (caregiver) found this break very welcome and refreshing. My experience in-center was actually pretty good.

I now plan on going in-center for a week or so every three to six months just to give my wife a break. I am told the biggest reason for people to stop doing home hemo is caregiver burnout. My center and nurse have encouraged this.

How many of you use respit care? How often and why or why not?

[PrimeTimer]

When we first started, our nurse brought this up, too. On one hand, sounds like a good idea...I wouldn't mind a break from doing all the setup/priming/cleanup/monitoring during treatment because afterall, it is a lot of work! But on the other hand, I think I'd only end up worrying and being stressed over my husband going back to the center (altho briefly) and encountering germs from other people thus, possible infection or catching a bug and not receiving the kind of one-on-one attention that I give him at home...heated rice bags for when his neck and access arm gets stiff, big fluffy ovenmitt to keep his hand warm, homemade red-neck hemostrap to hold his bloodlines, blanket, remote for the tv, music on (almost) any volume and help guiding his hands to do self-cannulation. We also get to use "treatment time" as "our time" to laugh and talk about things other than dialysis, especially if we are listening to the 70's music channel or the goldie-oldies. I know my husband would like me to be able to take a break and he go in-center but I honestly think I'd end up stressing too much over it and just want him home with me. That is, unless I could afford to get on a plane and go somewhere fun, then that might be a game changer....

[cattlekid]

I did  home hemo for 18 months with no respite care. I  knew it was an option but since I did all my own setup, needles and teardown, there was really no reason. The only reason I would have needed it would have been if something would have been going on at home like a major renovation that would have disrupted my treatment area.

As far as going in center, I would have gone back to my training center which never had any more than one or two patients at a time with their own rooms so II don't think it would have been too stressful other than no TV I and bad wi-Fi.

[obsidianom]

NO WAY , NO ONE TOUCHES MY WIFE BUT ME.  I would have to be very ill or dead before I would let her go back to the center . Thye dont do it the way I do and take off too much water and go too fast. I dont trust anyone but me to do it for her. I gave her my word to take care of her and I will live up to it. PERIOD

[nursey66]

My hubby didn't want to do the Next Stage after getting all the info. I did offer to help him with it, I was a clinical nurse before I retired last spring ,so it wouldn't be hard for me, but he still said he wasn't interested. I think he worries about the time it would take. He is so busy when he isn't sick, in the hospital. This AM, he drove School Bus ,then went biking for 3 hours , will do anouther School Bus route this afternoon, and then go to the Center for Dialysis after that. He likes to visit with the people there ,too. I do worry about infections, and the fact that I have read the Next Stage is better for the Patient, but not a lot on how time consuming the whole thing is.I know there is a lot of boxes to deal with. Maybe if he is unable to have anouther transplant because of the bowel problems he just had, he will decide on trying the NS .We will find out about that in about 2- 3 weeks.

[obsidianom]

My hubby didn't want to do the Next Stage after getting all the info. I did offer to help him with it, I was a clinical nurse before I retired last spring ,so it wouldn't be hard for me, but he still said he wasn't interested. I think he worries about the time it would take. He is so busy when he isn't sick, in the hospital. This AM, he drove School Bus ,then went biking for 3 hours , will do anouther School Bus route this afternoon, and then go to the Center for Dialysis after that. He likes to visit with the people there ,too. I do worry about infections, and the fact that I have read the Next Stage is better for the Patient, but not a lot on how time consuming the whole thing is.I know there is a lot of boxes to deal with. Maybe if he is unable to have anouther transplant because of the bowel problems he just had, he will decide on trying the NS .We will find out about that in about 2- 3 weeks.

The other option is Fresenius Baby K machine for home use. It is only 3 to  4 days per week . It is a little more involved to use but is just like the machines in center.
Nxstage doesnt have as many boxes as you would think. With the pureflow it uses fewer than the hanging bags. WE use about a total of 3 boxes per week. 2 of the dialysate boxes and 1 of the cartridges.
Time isnt too bad. Each treatment is about 3.5 hours for us and it requires about 4 hours total of my time , 5 days per week. You can do it 4 days per week for longer treatments also.

[Simon Dog]

I've done both NxStage and BabyK.

My BabyK Rx was 4 hours 3.5 times/week (every other day).   NxStage is volume based, but works out to a bit under 3.5 hours per treatment.

I thought the NxStage was going to take a lot more time, but the difference in setup/teardown means that the total dialysis time/week is about the same with either protocol. 

The NxStage has one "wait" of 15 minutes during setup; the Baby K has 5 waits of various time, starting with a 15 minute pre-rinse and then waiting for a couple of priming cycles (with tasks to complete between each "wait").  Finishing up with NxStage consists of needle site care, paperwork, and throwing out the cartridge.  Finishing with Baby K consists of needle site care, paperwork, start acid rinse, switch tubing from acid clean to heat disinfect, start heat disinfect, come back 20 minutes later to turn off water.

The "box load" with NxStage is MUCH lower than with the BabyK, assuming you use the Pure Flow rather than bags for solution.

I was happy with the Baby K, but my wife hated it so we compromised with the NxStage.   It is, so far, working out well and my wife is happy with it.

Both are viable options.  If you go with BabyK, be sure to ask you doc about the benefits of an every other day schedule over a traditional 3x/week protocol.

How often and why or why not?

My doc also told me caregiver burnout was the most common reason for home hemo patients to "fail".  When I started home D, I would have my wife bring me dinner during tx, and pull my needles.   After a few months, I noticed this was taking a toll, so I switched to completely self care - after all, it is my disease, not hers.   I do all setup, supply management, cannulation/decannulation, etc.   She's there whenever I have a tough time of it, or am just tired and would like some help coming off the machine, but I complete the majority of my treatments with her only involvement being that of "on call" for emergencies.   This is working very well for us, and I no longer hear comments about how I would be "better off in center".

What I do for "respite care" is booking tx in centers when I travel with my wife rather than than the NxStage with me - less hassle for her that way, and she gets to do all the things I am not interested in during my treatment times.

[noahvale]

^

[Simon Dog]

Ideally, this is the way HHD should work.  Patient takes control of treatment and spouse/partner is there for support/back up help.  Also, great rationale while traveling.  That is, unless wanting to go rafting down the Colorado River a la Bill Peckham!

I had this great idea of attending a out of town marathon tech meeting with the NxStage on the table at the end of the conference room (drain available), and one of my fellow geeks as a backup person I would train that day, but my wife would kill me if I tried to pull it off.

[Simon Dog]

I now plan on going in-center for a week or so every three to six months just to give my wife a break. I am told the biggest reason for people to stop doing home hemo is caregiver burnout. My center and nurse have encouraged this.

Why not just take a vacation (with or without her).  You can book into centers as a vagrant (er, transient) and give your care partner respite at the same time.

[amanda100wilson]

Been doing NxStage for 2.5 years.   Completely self-caring as hubby has little input.  I prefer it that way as I can do it to suit he, not fit into his schedule.  Also, much less stress this way. I would hate to be dependent on anyone.  If we travel he lifts machine but that is it otherwise.

[cdwbrooklyn]

NO WAY , NO ONE TOUCHES MY WIFE BUT ME.  I would have to be very ill or dead before I would let her go back to the center . Thye dont do it the way I do and take off too much water and go too fast. I dont trust anyone but me to do it for her. I gave her my word to take care of her and I will live up to it. PERIOD

I admire the way you feel about your wife. I totally agree with you.  NO ONE IS TOUCHING MY BUTTON HOLES expect my nurse when I can't do it myself.     

[PrimeTimer]

Verrry funny, Simon Dog, very funny! 

cdwbrooklyn, I agree; Doctor O is to be admired! He sounds like a real a bulldog when it comes to overseeing his wife's care.

kporter, I think whatever you and your wife decide what works for the both of you is best. That's sort of the beauty of doing dialysis at home, you can change and/or look into more options concerning your care. Doing home hemo takes a lot of work, it can be high anxiety but so can in-center. I think whatever the patient is most comfortable with is the most important thing -for ALL involved!

[PrimeTimer]

I have been doing HHD on NxStage for about 6 months now after doing PD for 2 1/2 years. After about three months I went in-center for two weeks to establish my buttonholes. My wife (caregiver) found this break very welcome and refreshing. My experience in-center was actually pretty good.

I now plan on going in-center for a week or so every three to six months just to give my wife a break. I am told the biggest reason for people to stop doing home hemo is caregiver burnout. My center and nurse have encouraged this.

How many of you use respit care? How often and why or why not?

I know this doesn't exactly fall under "respite care" but it has literally been years now since we've had any sort of vacation and sometimes I daydream about my husband and I being the couple who takes the NxStage RV out on tours to dialysis facilities to show people how we do home hemo. Wonder if it would be cool to drive an RV around and see some scenery in-between stops at clinics and have it all paid for. LOL I'd probably be too chicken to drive that big ol RV and not sure I could trust my husband with it, either! LOL 

[Simon Dog]

How many of you use respit care? How often and why or why not?

I use it when the wife travels.   When she is home, I try to do everything myself (she sometimes takes me off) to reduce the burnout.