Hello to everyone…I am a new member and am in need of some help about PD.
Here’s my story…
My dad has been a diabetic for more than 30 yrs, and 8 yrs ago, he was placed on dialysis (he opted for PD), not because of kidney failure, but because his kidney function had diminished to a critical point. My dad never really monitored his diabetes :shock: , and, as a result, he also developed diabetic retinopathy…he has been declared legally blind . Although he can see (limited vision), he can’t see well enough to do his own dialysis.
The tables turn…my dad is now dependent on us for his PD treatments. My mother, brother, sister, and I learned the PD process. My brother lives in Houston (we are in Dallas) and is not availabe to help out very much :? . My sister and I work fulltime and although, we try to help my mom out when we can, my mom carries the brunt of my dad’s treatments :? . My mom has absolutely no alone time…or free time for that matter. My mom is getting older and she, herself, is beginning to have problems with her vision .
I am now looking for alternatives to her doing my dad’s PD treatments…does anyone have any suggestions?..are there any PD support groups that offer a 'travelling PD service" that specializes in administering PD treatments? An obvious alternative for my mom would be HD for my dad, but we all know how hard that is on the body, not to mention uncomfortable. Oh, and by the way, MY DAD ABSOLUTELY HATES HD.
Does anyone out there have any suggestions? I’m at a complete loss .
Hi Loly, and welcome to Home Dialysis Central. I’m not aware of any traveling PD services, although folks here have mentioned being willing to do that for someone and wondering what to charge. I looked for the thread and couldn’t find it, so perhaps whoever suggested it could post again? Of course, you didn’t mention where your parents live, so this person might not be in the area.
A few thoughts:
1). People who are completely blind have done PD successfully without help. So, one possibility is for your dad to go through training again and learn to become independent with his treatments.
2). Is your dad doing cycler PD (CCPD), which only requires one hook-up and one disconnect each day, or is your mom doing several manual exchanges each day? (CAPD). If your dad isn’t using a cycler, it might be easier on your mom if he could switch to one.
3). What sort of insurance does your dad have? If he has private insurance, it might be worth checking on his coverage for home nursing care–perhaps a nurse could come even one day a week or every two weeks to give your mom a break. It may not be easy to find a visiting nurse who is familiar with PD, even if he has coverage; this could take some time to arrange. And, again, if he was on a cycler so there was only one connect & disconnect/day, this would be easier to arrange. (Canada has a visiting nurse program for PD).
4). You haven’t mentioned your parents’ financial situation, but perhaps they could afford to pay someone to do respite PD so your mom can have some time off. Your dad’s PD nurse might have some suggestions about where to find someone. This isn’t a typical service, so I have no idea how much this would cost, but it may be worth checking into.
Maybe some other folks will also have ideas…
Dori, thank you so much for your suggestions. Before I answer your questions, could I ask you what your area of speciality is? You seem to be very well versed in peritoneal dialysis. My parents live in Dallas, TX.
After reading through your suggestions, it seems that a support group and/or traveling assistance program would benefit a lot of PD patients. Over the years, I have seen a need for this kind of assistance. I think there is a very important, very needed service here. What do you thing insurance companies, Medicare, and/or Medicaid would say to a program that provides PD assistance to patients in need? I think there’s a business venture here, but I’m going to research it further and make some calls.
Thank you again for your suggestions–LolyJ
P.S. I almost forgot to answer your questions:
- This is a wonderful idea…the hard part is convincing my dad of this…he’s been so spoiled for so long that old habits die hard…I’m going to make the effort for my mom’s sake.
- My dad does both: cycler, for about 12 hours; manuals, 2 exchanges during the day.
3 & 4. My dad already has a nurse coming out to check on him twice a week. I’ve asked the agency if they have an experienced PD nurse who could provide the service…the answer was no.
I direct the non-profit organization that developed Home Dialysis Central. I’ve worked in the renal field for 16 years, conducting research and developing research-based educational materials (check out our Kidney School™ at http://www.kidneyschool.org and Life Options at http://www.lifeoptions.org). The purpose of our materials is to help people learn to self-manage their chronic disease(s)–hence the suggestion for your dad to consider becoming more self-sufficient… But I’m not a PD patient or nurse, and LOTS of folks know much more about PD than I do.
It’s not surprising that your dad has gotten “spoiled,” it’s a natural tendency to want to “do for” someone who is sick–but that impulse arises out of an acute illness model where eventually the person gets better and takes his life back. Diabetes and kidney failure (even if he has some function left, it’s considered “failure” at the point where he needs dialysis or a tranpslant) don’t go away. Doing things for a chronically ill person that he can learn to do himself can lead to dependence, depression, and low self-esteem. As an adult, your dad most likely has a need to feel independent, in control. I’d guess that he wouldn’t want to burden your mom as much as it sounds like he’s doing. So, this might help motivate him to take on more. Losing vision as an adult is not an easy thing. Your dad’s illnesses have cost him a lot, but he still has a lot left. He’d feel better about himself if he was able to help.
As far as traveling PD as a business, the trick would be figuring out how it would be paid for. The folks most likely to be interested in the service may also be the ones who can’t afford it because the’yre Medicare-only, or Medicare+Medicaid–neither would cover this.
Re: a PD nurse for home visits–it only takes a week to train someone to do PD. Perhaps the visiting nurse service would consider investing the time for one of their nurses to learn to do PD? It would likely come in handy for more than just your dad.
I am in the same situation as you. Almost exactly. My diabetic dad has retinopathy and nephropathy. He has not started dialysis yet but it is VERY near. He is going to do the CCPD, and probably some more manual exchanges during the day because he is 6’7" and quite large. He is also thinking about a presternal catheter in the chest. I am off at college in the fall but come home often and my younger brother has muscular dystrophy and cannot walk. So my mom is left by herself to take care of both of them. Please respond or email me at email@example.com. It would be nice to have someone to talk to and get any tips before he starts.