Thinking of Some Respite

[PrimeTimer]

I am tired and I ache. My home is a real mess lately. Sometimes feel as tho I'll never get caught up on things around here. Attitude is important and right now, I've got a bad one. I would feel very guilty to have my husband go to the center but I'm not feeling so well myself lately either. We are thinking of having him go to the center for a week or two, whatever the clinic and/or insurance approves. I know that burnout is something to be expected and to be dealt with but I really hate feeling as if it's beating me. I don't like this feeling of "losing".








Moved: On dialysis topic, moved to general discussion- kitkatz,Admin

[Simon Dog]

Insurance approval is unlikely to be a problem since the billing is pretty much the same.

The bigger issue is going to be the chair time.  If you clinic has a NxStage in the clinic used for training, perhaps they would let you use that (my clinic does that when my wife travels, provided the home care RN is on duty and does not need the system for training).

Do you do care partner stuff for your husband?  If so, would he be capable of handling the treatment without your help?   You could do your stuff while available for emergencies, but let him setup/canulate/decanulate/takedown/etc.    This is the protocol used at my house.

[PrimeTimer]

Insurance approval is unlikely to be a problem since the billing is pretty much the same.

The bigger issue is going to be the chair time.  If you clinic has a NxStage in the clinic used for training, perhaps they would let you use that (my clinic does that when my wife travels, provided the home care RN is on duty and does not need the system for training).

Do you do care partner stuff for your husband?  If so, would he be capable of handling the treatment without your help?   You could do your stuff while available for emergencies, but let him setup/canulate/decanulate/takedown/etc.    This is the protocol used at my house.

His clinic for monthly appts has a NxStage they use for training purposes but his nurse is crazy busy so I doubt he could go there. In the past if he has needed to go in-center for instance, ordered by the neph after a hospital stay, they had no problem fitting him in at a clinic near our home. My guess is they would probably have him go to that one. Because of work hours, I do all the setup/monitor/pull needles so that we're not up all hours of the nite. He would take the time off work but only gets paid for completed projects. He helps with cleanup. I do inventory and ordering. He self-cannulates with my help but has some neuropathy in his hands. That makes it difficult for him to make his own blood line connections, he tends to drop things. I have my good days and my bad...and so does he. Not always easy to deal with. Think it's time for some respite.

[cassandra]

Definitely time for some respite PT. apart from your hubby's temporary in-center, maybe look into some kind of help with the household? Cos you'll be using that extra time 'free' to work like crazy in the house, and will end up even more tired.
And please stop feeling guilty, besides being unjustified, it sucks positivity, and energy out of you. Without you, hubby would be in-center all the time, and if you get more ill, that's what could happen.

I hope you'll get some respite soon PT, and I wish I could be of more help.

Lots of love and strength, Cas

       

[kristina]

Definitely time for some respite PT. apart from your hubby's temporary in-center, maybe look into some kind of help with the household? Cos you'll be using that extra time 'free' to work like crazy in the house, and will end up even more tired.
And please stop feeling guilty, besides being unjustified, it sucks positivity, and energy out of you. Without you, hubby would be in-center all the time, and if you get more ill, that's what could happen.

I hope you'll get some respite soon PT, and I wish I could be of more help.

Lots of love and strength, Cas

       

Hello PrimeTimer,
I am very sorry that you have reached the point to feel tired and aching and I do hope you can get some respite very soon.
I agree with everything Cassandra has already mentioned and I also hope you won't feel guilty that you need a respite,
because you sound as if you very urgently need to "recharge" your own "batteries" and I do hope you can start with your own "recharging" now ...
... I remember my husband looking after me when I suffered the stroke and he helped me with all my stroke-rehabilitation.
At first he read up on all the stroke-rehabilitation-books to find out how to "do it", then he assisted me with all the stroke-rehabilitation-instructions etc.,
and after a while there came a point when he felt tired and aching and "burnt out" himself and fortunately that was the time when I became well enough
to continue with the stroke-rehabilitation-program almost on my own and I needed no more rehabilitation-guidance/assistance from my husband ...
That was very fortunate at the time and we have both recovered from it all  ...
... I am very glad that your husband is going to the center for the time being and I wish you some respite and a good and speedy recovery
and send you all my best wishes from Kristina.

[hatedialysis2]

PT. I feel for you.  We have to come up with ways to take care of our caregivers.  what are the respite requirements under Medicare?  i would like to give my husband a break.  He's been at it for 3 years now . I don't want to ear him down.   Going in-center sets be backwards.   And hiring a nurse or tech who's trained in nexstage would run $150 + per treatment.  @ 5 days it becomes cost prohibitive.   I am going to hound my center to see if they can come up with solutions.   

[Michael Murphy]

Every tech and nurse at the clinic gets a vacation, you should get one too.  I would try contacting the travel group and ask for a placement for a week in any close center.  The need for a week off is real and the center should accommodate you.  If they give you any crap contact CMS and tell them yor story,  check with other centers they may be more suportive. 

[PrimeTimer]

Thanks everyone for the support and your ideas. Your responses actually give me strength and help me feel better about things. I've had a very long day and well, things seems so much harder when you're not feeling up to it. I don't have kidney disease but my body doesn't always want to cooperate with me. Makes it harder. Hubby is going to ask his nurse so I can get a respite. I'm not sure but when he first started home hemo, I thought a nurse said we could schedule respite every 6 months or maybe every 3. I want hubby to ask about that because if that's true, think I should definitely take advantage and perhaps even regularly schedule some. Hoping to avoid future burnout. I hate this darned disease and everything all of you must go through just to survive each day. That's why I wanted to be my husband's carepartner. You guys are real heroes doing something so extraordinary and yet, you make it seem like it's just part of life. You are awesome people and how each of you cope serves as a bright light. You can't see it but you've just put a smile on my face. Thanks. 


  I am grateful to all of you!

[Michael Murphy]

I would add the care givers who walk this long road with us are as brave, as the patients. Since you care about your patient you are emotionally involved with him or her doing well.  That adds to the burden you carry.   You need to find some activity that recharges you. 

[hatedialysis2]

I found this link on staff assisted home hemo on home central.com. The thread gives info on how your center can bill for it and centers in your area that might be offering it

http://forums.homedialysis.org/threads/106-Staff-Assisted-Home-Dialysis

[Charlie B53]

Even if someone could come in just one day a week to handle Husband's Dialysis would be a break.

This is omething that needs serious attention as caregivers can burn out far too easily.   It most certainly is not like any regular type of employment, employee's at least get days off.   Not so for a caregiver.   And that takes a toll on everyone, no matter who you are, you need a break , regularly.

There are volunteer organizations, has anyone ever contacted some of them and presented this problem? 

[Xplantdad]

Hi Primetimer...

I feel for you...as there are days where I feel exactly the same way. Some days I want to pull my hair out! Also, for us-having to wait 20 minutes for an "on call" nurse from Fresenius to call us back when we have an urgent issue...because we "choose" to do her dialysis "after hours" according to the home health care nurse is ridiculous. I let my daughters care team at Fresenius have it today-at our monthly care meeting. My daughter's nephrologist told the head care nurse to shut up when I was explaining some of my frustrations with their recently started program at the center we go to (we were the second family trained)...he told the guy to LISTEN....and learn.

My wife and I get up and go to work at 4am and get home at 5pm, then I do my daughter's dialysis from 5:30pm to 9pm-ish. My wife was also trained as a care giver but doesn't feel comfortable doing it, plus her mom (who is 86) lives with us and is a double below the knee amputee/had spina bifida when she was a child and has her own host of health issues that my wife has to attend to. My wife has got enough on her plate now-including trying to find a health care facility for her mom after her mom's upcoming surgery on July 9th-she doesn't need to be dealing with the home hemo treatments.

 I SOOOOO look forward to Wednesdays and Saturdays-as these are my daughter's two off days from dialysis...and these are also the days where we catch up on housework and laundry...and yard work and servicing the cars, etc. I have only been doing the home hemo on NXSTAGE since January of this year-but my daughter has been on hemo for about two years.

When I start feeling like I am burning out-I think about all of the folks that have things much worse off than we do-and I also remind myself that since my daughter is at the top of the transplant list (what we have been told)-that eventually things will change. We are no strangers to transplantation-as my daughter is already a heart transplant-so the weekly clinic visits/blood tests, etc.- we have already been down that road!

So, please know that you are an awesome person for doing what you are doing for your husband. Even if he doesn't say thank you...THANK YOU! We're all in this together!


 My daughter doesn't have to say anything-her smile lets me know how she's feeling...and she's my daily inspiration...even when I don't think I can do it any more! Thanks for letting me ramble, too!

Bruce

[Charlie B53]

Bruce,

You are an Awesome Dad.  Congratulations on keeping up with the Faith.

Burn-out is all too real.  It looks like youi have managed to find ways to keep your sanity despite the rigors of a tight schedule.

Here' to Hoping all goes well with MIL's surgery.

Charlie B53

[Xplantdad]

Thanks Charlie...it's all part of being a parent, right?

BTW, I responded to one of your posts on Team Chevelle...I didn't know that you hung out there. 

[PrimeTimer]

Xplantdad:  Thanks for championing the role of being a carepartner to the ones we love. Your words really blew me away -gave me a huge lift.

NxStage Tech Support 24/7:  1-866-697-8243

I keep this number taped to the front of my husband's cycler. NxStage tech support is available 24/7 and even offers (on their phone menu) the option to speak with a tech if you have an emergency during treatment. I have used that number way more times than the number we have for the on-call nurse at Fresenius. Some of the reasons I've called tech support include Red alarms (for clotting or air) and even for alarms I didn't quite understand on the Pureflow. I keep the manuals to the cycler and Pureflow within reach and over time you do get use to handling common alarms but when in doubt, it's good to know that tech support is there. Also, thanks for ripping into Fresenius! Fortunately, we have a wonderful nurse but another nurse there once got a little rude and the Neph was quick to put her in her place. Haven't had a problem with her since. 

Hubby is going to ask about respite care next week at his monthly appt. I hope to be "respiting" soon after!

[Xplantdad]

Hey PrimeTimer...My name is Bruce

Also-NXStage Tech support is programmed into my cell phone. The tech support people are the best! I've used them a bunch of times...

I also have the local AZ NXSTAGE representatives phone number programmed into my phone as well as the director of NXStage's customer service department back east as well...as the customer service group sometimes leaves a lot to be desired.

I brought up the fact that the diaysis techs that are in center have WAY more training (12 weeks +) than us home hemo caregivers-plus if they have ANY issue at all-there is a nurse a few feet away to remedy the situation. I let them know that they are asking a LOT from us-and the least they could do would be to give us faster access to the help when needed (from Fresenius-since my wife's insurance is footing the bill). I told them to use the NXstage folks as a model of how to set up their home hemo help line...but at this point, we have to call the Fresenius on call line (also programmed into my phone) and we get directed to a call center-who then attempts to get the on call person to call us back within 20 minutes. Seems completely wrong to me-which is why I voiced my opinion

[PrimeTimer]

Looks like I get 3 weeks (for a total of 9 treatments) off. Just one week would have been good so 3 ought to really do me some good. He's okay with this. Don't know if his body will be but he is.

[cassandra]

Good to hear PT.  And hubby and his body will be fine

     

Love, Cas

[Xplantdad]

Looks like I get 3 weeks (for a total of 9 treatments) off. Just one week would have been good so 3 ought to really do me some good. He's okay with this. Don't know if his body will be but he is.

Good for you, PT....Enjoy the time off it will be good for you .

[PrimeTimer]

It's great that they approved of some respite but looks like it's not going to be any time soon. 

[Michael Murphy]

I hope you can schedule some me time to recharge your self.  Even if it's not soon if they let you schedule your weeks then you will have something to look forward to. 

[PrimeTimer]

I am now "respiting" and it feels kind of good. Except for the guilt. Hubby already had a bad day at the center but lemme explain, it's not what you think...The nurses and techs are very nice to him, so far very patient and help him self-cannulate and only go at the speeds he wants and removes exactly what he wants. Since his Neph's office is next door, she popped in just to tell him hello. She's pretty great. But then a late one comes in and when the nurse went to assess him, he started cursing and hitting her! Hubby said that if it weren't for the needles in his arm he would've jumped up and smacked the guy. He understands that patients can have a bad day afterall, he's one of them but no matter what kind of day he's having, he'd never hit a nurse or act like how this guy behaved. Guess it was so bad that the nurse ended up apologizing to my husband for having had to see and hear all that. That guy really peeved him off. Anyway, his treatments are going fine at least. 

[Michael Murphy]

One of the few things CMS allows the dismissal of a patient from a dialysis clinic is violence directed at a employee. 

[Simon Dog]

give us faster access to the help when needed

I'd like a direct dial # to the customer support queue.   I don't like having to wait through various recorded messages to be told to select 1 for service, 2 for support, etc., or hearing that "out options have recently changed?"  (Seems everyone's has "recently changed" - I wonder how long the new prompts have to be in place before they lose the status of "Recently changed")

[beckums70]

What is the possibility of finding a part-time home helper for you and your husband?  That might be an alternative that would keep you both from feeling overwhelmed and might give you both more time to just relax at home.