PD Partnership is All About Teamwork
Article by Deborah Segelitz
I've been a care partner to my husband for nearly 4 years, since he started peritoneal dialysis (PD). It has its share of challenges, but for the most part it's a good option. I've learned a few things along the way, mainly that teamwork is key along with communication, that a sense of humor helps enormously, and that the situation can change day-to-day (sometimes hour by hour!).
What to Expect When You Help with PD
On the practical side, there is a very good tool on this website to determine which person is best suited to which task. All of those details, plus a few more you will discover as you go along, will make up the daily routine of PD. Bear in mind that these tasks may have to be swapped or shared sometimes, if your loved one starts to feel worse—or better! Kidney failure is somewhat fluid, in this way, with good days and bad days for your loved one, so being able to adapt to change is important.
On the emotional side, I've heard a lot of "you have to take care of the caregiver too," but I haven't mastered that one, yet. I do put my husband's needs first, but a great source of support can be found in online forums or Facebook groups. Find the right group that "fits" you, if you are looking for some support. (See the end of this article for two options.)
Keeping communication open with your loved one is very important, too. My husband and I each promised each other something. I promised not to ask, "Are you okay?" every hour, if he would promise to tell me if he was struggling, felt unwell, or needed medical help. This has worked for us so far, but it takes some trust on my part, and took some patience on his part, in the beginning!
If your loved one on dialysis is a partner or spouse, it's easy to fall into a caregiver-and-patient role, and lose all sense of intimacy. Bodies become things to worry about, scrutinized for infections or changes in terms of health and wellness, rather than just the body of the person you love. The best suggestion I can offer is to try to remain physically close in ways that have nothing to do with dialysis! I don't only mean sex (often fatigue gets in the way of that anyway), but hugs and affectionate touches that show your spouse/partner that you see them as the person you love, not just the person you are helping to care for.
Find Your Own Balance
Each patient is different, as is each caregiver. Some patients will want to be very independent, doing their treatments on their own or going to clinic appointments solo... Others appreciate that their care partners are involved and interested. Either way, finding your own balance is the most important thing, so that you can truly work as a team, in whatever way that works best for you both. Kidney disease is hard in so many ways, and it takes away so much! But with teamwork, life can go on, and go on well, even during the difficult times. Patience, communication, the ability to adapt, and the ability to laugh together are all things that have helped me to be a good care partner to my husband. I don't always get it right, but he knows I'm doing my best, and that helps both of us!
In fact, I've just asked him what it is that I do as a care partner that helps him the most. I was surprised by his answer, so I'm sharing it in case it might help someone. "You do a lot, and I appreciate all of it," he said. "Setting up my machine, dealing with all the physical 'work' of dialysis for me, and things like that help me so much. But I'd have to say that at this point, the thing you do that helps the most is that you remember things. I forget everything these days; taking my medicine, for example, or things the doctor tells me...but you remember. I couldn't do this without you for many reasons, but that is probably the biggest one, even though it sounds small. You remember the important things and the little things. You are my safety net, because I forget things all the time."
Lest you think I have memory superpowers, by the way, here is my Care partner Top Tip: Write everything down! I have a small notebook I take to all of our medical appointments, and in it I write all of our questions as well as all of the answers we're given. Changes in medication, changes in the PD “regime,” any and every change, question and answer are in that little book. It's surprising how often we refer to it, and how often it has saved us from getting it wrong!
Deborah administers the Peritoneal Dialysis Support Facebook group and is a member of the Home Dialysis Central Facebook group