I am wondering, on a scale of 0-100%, with 0 being self-dialysis with no care partner, and 100% being the care partner does everything and the dialyzor doesn’t take part at all, where do y’all fall? Exactly which tasks do you each do? How did you negotiate who would do what, and did it change over time?
Andy and I usually take it in turns (roughly) to set up Freni. I do my needling,he puts on tapes and makes me comfy for Nocturnal. If I am having problems with the angle of my buttonholes I can usually rely on him to advise me if my angle has gone haywire as he has a better eye than I have for that sort of thing, although he has never done the needling and I wouldn’t want him to.
In morning, he assists me in getting off, strips machine and makes me a cuppa. If we stuff something up and blood goes everywhere or I have passed out he picks up the pieces. Gotta luv him :0)
I was trained to do it all myself but I don’t know that I would feel confident to do it anymore. However, I am sure I could if I had to.
Um, so to answer the first part of the question. he probably does about 30% (extra weighting for me needling myself) and 50 % of the worrying.
I do everything for Ralph.
When he had the fistula in his upper left arm he could not reach to put his needles in because of a frozen shoulder.
Now with the catheter and can not see close enough to put the lines in. And when his new fistula is ready it is in his right wrist (he is right handed). He is also not computer literate. So I do it all but he watches and reminds me of things most of the time.
At first when I came home I did everything due to my wife work SD . Now that I do nocturnal , I do all the set up (machine, kit) and Eleanor will help get me on at night. (blunts stick, taping up) As to coming off It 50/50. Sometimes I do all and other times Eleanor will take control. Both of us could do the whole 10 yards in a pinch
Even though I do have a partner, 99% of the time, I do 100% myself from set-up to clean up. There was a time though where I had bad tendonitus in my left hand and I couldn’t do anything, and he had to do it all for a few days. He hasn’t even learned how to stick me, and I don’t know if he ever will (I was using a catheter during the period when I couldn’t do anything). Every now and then, I will have him do my treatment simply so he doesn’t completely forget how to do it. I still have to talk him though it, though.
I say I do everything myself, but in reality I guess I don’t give my son enough credit. He handles all of the inventory nitty gritty of carrying boxes upstairs and is an eagle eye if we’re running short of anything. He also keeps my current supplies neatly put in the supply closet I use daily; putting the salines in the tub and putting cartridges on the shelf and putting needles and syringes in the proper drawer. He used to handle my dialysate bags and usually starts a PureFlow batch. But when it comes to my actual treatment, I do 100% of everything myself. So I guess I really don’t do 100% of everything myself.
Thanks, y’all. So far, we really DO show a range from 0% to 100% and many steps in between. It’s interesting that the role of a care partner can be so varied. Anyone else want to share their experiences?
I’ve done it all myself since 2002. 100% selfdialysis.
I handle inventory issues, do the talking when it comes to dealing with the machine co., the supplier and the clinic, set out my supplies each tx, self-cannulate, document, observe the machine all tx, deal with alarms, pull my needles, weigh, take blood pressures, tear down the machine, clean the machine with bleach solution every tx, rinse out the waste-line. My family members all pitch in and their tasks include, receiving the machine co.'s monthly delivery, carrying the many, heavy boxes upstairs, set up the machine for tx, assist in putting me on/taking me off, being present in the home when I am on tx, tearing down the machine sometimes, breaking down the many boxes, loading them into our truck and making trips to the dump for disposal.
My husband has been doing home hemo since June of last year. I am not working at the moment, haven’t been since we started this. We look at this as a partnership, he is continuing to work at his job and I take care of all dialysis stuff. The machine is set up when he comes home, we have supper as a family, still have two teenagers at home, then we do dialysis, my children clean up table after supper on dialysis nights. My son carries the liquids into our bedroom for me and keeps the shelves stocked in the garage with liquids. My husband works, so I think of this as my job, I do this for him so that he doesn’t have to go to a clinic, we are fortunate to have a center that taught us and supports us with this part of our life.
although we’d not made it that far …the plan was…and would still be that if my son (Jessie) or wife (Anne) would have needed a partner I’d be nominated…but it would have been a family thing…with help from Steven…our eldest. Perhaps I shouldn’t use the word nominated but more in line with my “mandate”…superceded by none
Anne and I would have taken care of Jessie…Jessie and I would take care of Anne…Steven and I would have taken care of both…confused… me too ! now the dog !!!
In all seriousness this was a family undertaking
I have been a home hemo patient for 2+ years in Ontario Canada.
As per involvement by family members, I have a very young family (daughter who’s 3) - and my husband works full time. Most of the responsibility falls on me. I set up & make dinner (tricky at the best of times) - eat, and then hook up. He cleans up after dinner though! ha ha… I think that would make it 95% me, 5% care partner.
I order supplies, receive, put away supplies… set up machine, cannulate, get on… my husband tears down when I’m done, and disinefects. I’d be in trouble if he needed to set up. He was trained years ago, but without ever doing it, has forgotten how I’m sure.
Thanks for sharing that info, Kidney Mom! It sounds as if you are making home HD work for your lives, which is the important part. It’s fascinating how many different ways there are to make home dialysis fit.
Glad to share… I am happy to have found this site, and look forward to sharing ideas, and learning from others. Dialysis can be daunting at the best of times - it is great to know that others have been there.
Dori - My wife has been on home hemo with the NxStage for about 6 months. We’ve done about 150 treatments. I do 90% of work. I usually set up the machine, snap & tap the lines, then do the buttonhole sticks. Then I take her off. We had been doing HD in the evenings, sometimes she would prime the machine before I got home.
This last week I’ve been setting her up in the morning and then going to work. She takes herself off the machine. At first she didn’t even want to do this, but now she feels comfortable being left alone.
We would like her to be more self-sufficient. Her problem is doing the buttonhole sticks. She just isn’t confident with her technique and taping the needle sets down 1 handed.
Our kids (15 & 13) are trained to help out. They know how to operate the machine and what to do, but they don’t want to stick their mom either.
My husband is the one on dialysis. We both do it I guess you would say 50% patient 50% carer.
I set the machine up while he sets his table up. I put the machine through prime etc while he washes his arm for 3mins. He is buttonhole at the moment, so I scrub up and remove the scabs for him. Then help him guide the needle to the right spot. He inserts his own needles. I help him do some of the taping.
He then gets up and gets into bed. We both do the connecting to the machine.
When finished I clean up the machine and put it into disinfect while he holds off his sites.
Any alarms during the night, I attend too.
Changing filters he does.
Packing up supplies he does most of the time and I help carry them in. We do it all together.
Well, in the beginning I did about 90% of the treatment and let my wife pull the needles at the end of the treatment. Now, I do 100% of the treatment, from set up to clean up. My son does the running to get me supplies when I run out in the room. Youth is wasted on the young.
I do it myself so that my wife can work and spend time with our four year old daughter and eight year old son as well as all the other things she does to keep our family happy. I shop, cook, some cleaning, take care of my four year old and keep myself alive. My wonderful wife of twenty years does just about everything else which includes being a partner of her law firm. Every day I count my blessings for her. Oh yea, she gave me a kidney too, but as you know - unfortunately that didn’t last. Cheers! Erich
I really appreciate all of you taking the time to fill us in on how home HD works for you and who does what–this helps us to get a much clearer picture of how much variety there is (truly a range from 0% to 100%) in how much the dialyzor or the care partner is doing.
This means that anyone who is thinking about doing home HD has some thinking to do about how much of the tasks he or she will do and which ones (if any) will require help. This negotiation will be different for every dialyzor or dialyzor/care partner pair. And it may change over time as your situation changes.