Caregiver burden in NHHD

I was perusing RenalWeb today and came upon a link to an abstract in “Hemodialysis International” for a paper that investigates the burden of NHHD on caregivers.

I can’t access the whole article, but can anyone else, and if so, what are it’s conclusions?

I don’t plan to make my husband into my “caregiver”, but I’m not naive enough to believe that there will never be an occasion when I might need his assistance, even if it is just to hand me the remote. LOL. But still, I’d like to know more about this “burden” and how I might best avoid it in the future.


We checked,MooseMom, and this abstract has not come out in the journal as a full-length article yet. When it does, we’ll read it and summarize it. In general, in our research and that of others, it’s generally found that home HD works best when the person on dialysis does as many of the dialysis-related tasks as possible, especially putting in the needles (which is VERY stressful for a partner). And, in general, relationships that were already strong stay strong or even get stronger with the shared challenge of home HD. (Weak relationships can fracture; counseling to improve communication may help.) Clinics that use an in-center model (patient = dependent, passive recipient of care; care partner = tech) seem to have much higher dropout rates for home HD than clinics that keep the care partner (we don’t use the term “caregiver”) role as minimal as possible.

Of course, there are exceptions to every rule! I’m thinking of one couple that we have profiled in our stories where the husband seems to take a lot of pleasure in caring for his wife’s every need. Some people really enjoy caring for others.

Thanks for that, Dori. Yes, I’ve always assumed that HHD is more successful when the patient does most of the work, but I just was curious to see if there was maybe something new this paper would reveal.

Burdens to care partners is a real aspect of home hemodialysis. Not only do we invade their space with huge amounts of supplies, but they lose a bit of freedom by being tied to a schedule, no matter how flexible it is. Over time, I have assumed more and more of my own self care chores. The one that I believe will be the most difficult for me is when pulling the needles, My wife tamponades the buttonhole after I have pulled the needle. I have a very high flow fistula which is good for my dialysis, but I do tend to soak through at least one bandage with my venous after dialysis. I haven’t attempted to do a one handed needle pull and tamponade yet. I know a lot of folks do this, but for me, I am afraid of squirting blood all around the room.

Other than that, I can pretty much do everything myself. Learning how to self cannulate is the hardest task. That seems to be the divider of those that are able to do home dialysis for long periods of time. Those that are on home hemodialysis I know personally may have a little bit of assistance, but for the most part, it is their own personal job, as much of a pain in the neck it is to stay alive. But, that is what we are doing, staying alive.

I do believe that America needs to come in line with Canada and other nations that allow single patients without a care partner to do dialysis. If my wife were ever to pass, i would plant her in the back yard before ever going back in-center and putting an inflatable doll in my car for the office visits and put a mechanical arm that waves as I drive away. LOL, joke alert.

In all seriousness, going back in-center is something that I wish to avoid at all costs. If that was my only option, I would truly have to consider how long I would endure that type of treatment.

Dori’s research describes pretty much what I’ve heard from patients I’ve worked with over the years.

So far as removing some of the burden of doing dialysis in-center, convincing the doctor you’re capable of self-care (which should be easy if you’ve been a home dialysis patient) and getting him/her to write an order allowing you to do as much of your care as you feel comfortable doing can give back much of the control the typical in-center experience takes away. I’ve talked with patients who do their own needle sticks in-center and they say it has reduced their stress considerably. Patients doing self-care may set up their own machine, record their vitals at regular intervals, give their own medications, etc. Other than having to go to a place to do dialysis, it’s as close to being at home as you can get. From what I’ve heard, patients doing in-center nocturnal dialysis 3x/week feel much better than patients doing standard 3-4 hour dialysis 3x/week. And dialysis staff have reported that some of the patients who switched from standard dialysis to nocturnal have felt well enough to return to work, which to me is a true test of successful dialysis.

I’ve just spend several thousand dollars completely redoing my laundry room; it is very large and is the perfect place to store all kinds of stuff, including dialysis supplies (which was the compelling reason to get that room ready for action!). I have bought 4 of those tall baking racks on wheels, so storage space isn’t a problem, and I can tell you categorically that my husband does NOT consider the laundry room “his space” by any stretch of the imagination.

We are already tied to a schedule determined by my husband’s work hours. He works, he comes home, I make dinner, we watch TV. We can still watch TV while I am dialyzing, so schedule disruption shouldn’t be a real obstacle for us.

I, too, would be afraid of squirting blood all over the room as that just means more cleaning work for me! I think my husband could handle assisting me in pulling needles. It’s the putting them in he wouldn’t do, not that I blame him!

I like the inflatable doll with the mechanical arm idea. That could literally be a lifesaver!