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Author Topic: Respite for home hemo caregivers  (Read 1110 times)
NCspinner
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« on: December 27, 2018, 07:15:25 AM »

I hadn't realized when I agreed to train as a home hemo care partner that it would be so difficult to get even a couple of days off to visit my family, who all live very far away. (We're in NC and they are in MA, ME, ID & WA). Our home hemo nurse is willing to help but she's very busy and the last time I  visited my 93-year-old mother, the cannulation did not go well. It appears that if I need to be gone my husband probably ends up going in center for dialysis using sharps. Not a good alternative except in dire emergency. We've tried to find qualified people to come and do the dialysis here at home if needed but it's proved amazingly difficult ... and DaVita absolutely refuses to talk about it. Why isn't there a resource for locating respite caregivers? Has anyone out there found a way to deal with this?
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Mr Ken
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« Reply #1 on: December 27, 2018, 08:43:10 AM »

I hadn't realized when I agreed to train as a home hemo care partner that it would be so difficult to get even a couple of days off to visit my family, who all live very far away. (We're in NC and they are in MA, ME, ID & WA). Our home hemo nurse is willing to help but she's very busy and the last time I  visited my 93-year-old mother, the cannulation did not go well. It appears that if I need to be gone my husband probably ends up going in center for dialysis using sharps. Not a good alternative except in dire emergency. We've tried to find qualified people to come and do the dialysis here at home if needed but it's proved amazingly difficult ... and DaVita absolutely refuses to talk about it. Why isn't there a resource for locating respite caregivers? Has anyone out there found a way to deal with this?

One BIG WORD: LIABILITY!!! Says it all.....
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NCspinner
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« Reply #2 on: December 27, 2018, 09:24:21 AM »

I know, I know. Our local center is making a big push for patients to do dialysis at home--lots of posters with smiling faces all around--but IMHOP this is the dirty little secret  they don't mention when they're telling you how wonderful it is.
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PrimeTimer
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« Reply #3 on: December 27, 2018, 02:12:21 PM »

If I remember correctly, Fresenius allowed respite maybe every 2-3 months. I think I posted about it. Hubby had to go in-center during that week. I probably should have regularly taken some time off.
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
Michael Murphy
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« Reply #4 on: December 27, 2018, 05:18:17 PM »

IMHO the only thing worse then a being a patient is being a home health giver.  The never ending grind is bad enough if you are the patient.  Worst case see if you brought hubby and nexcare box do home hemo on the road, I figure if Bill Pulham can do it in the middle of the Grand Canyon on a river raft it should be possible to set him up at a relatives house. 
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Mr Ken
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« Reply #5 on: December 27, 2018, 06:05:09 PM »

I know, I know. Our local center is making a big push for patients to do dialysis at home--lots of posters with smiling faces all around--but IMHOP this is the dirty little secret  they don't mention when they're telling you how wonderful it is.

What is the dirty secret?? There is no secret that the push is for home dialysis over in center dialysis. Trying to cut costs by shifting the responsibility onto the patient..
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iolaire
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« Reply #6 on: December 27, 2018, 06:26:35 PM »

I was treated in center for 3.5 years and found it good. I would think a week of in center treatments would not be that bad for many patients. So unless you have had bad experiences in center I recommend trying it so you can have your break.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Simon Dog
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« Reply #7 on: December 27, 2018, 09:06:17 PM »

Quote
I hadn't realized when I agreed to train as a home hemo care partner that it would be so difficult to get even a couple of days
NxStage is FDA certified for solo (no caregiver) home hemo as long as the patient is not doing nocturnal.

Fresenius supports this, and it is possible to be certified to do your own D without a caregiver present.
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PrimeTimer
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« Reply #8 on: December 27, 2018, 09:32:00 PM »

I know, I know. Our local center is making a big push for patients to do dialysis at home--lots of posters with smiling faces all around--but IMHOP this is the dirty little secret  they don't mention when they're telling you how wonderful it is.

What is the dirty secret?? There is no secret that the push is for home dialysis over in center dialysis. Trying to cut costs by shifting the responsibility onto the patient..

I wonder how much the cost of those cute plastic measuring cups and teaspoons with the Fresenius logo on them handed out as Xmas gifts was shifted to the patients.  >:(
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
cassandra
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When all else fails run in circles, shout loudly

« Reply #9 on: December 28, 2018, 08:17:36 AM »

I know, I know. Our local center is making a big push for patients to do dialysis at home--lots of posters with smiling faces all around--but IMHOP this is the dirty little secret  they don't mention when they're telling you how wonderful it is.

What is the dirty secret?? There is no secret that the push is for home dialysis over in center dialysis. Trying to cut costs by shifting the responsibility onto the patient..



It's the only reason this (slow) shift is happening though. A bit like the abolition of slavery. Nothing happens unless there's an economic adnantage to the powers that be. But in this case I can see the patient as a huge winner too.
I have independence back which I had lost.
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
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