Valen’s husband, Noah, offers insight into what it’s like to be a caregiver to a PKD patient.
I sat with my face in my hands as the fifth person tried to start an IV in Valen’s delicate veins. She was trembling vigorously, staring at the ceiling; her tired eyes were red and glassy. She winced as the needle pierced her skin for the eleventh time; tears again welled up. We had been at the hospital for several hours at this point and we were both exhausted, neither of us had much left to give. This had to work. I waited with baited breath and finally heard the words I had been waiting for, “I can taste the saline!” Valen exclaimed. A wave of relief came across me and my eyes welled up with tears, the IV was a success.
Many of us who care for PKD patients have had similar stories and emotions as we bear witness to the lives of those living with this disease. The difference for us, in comparison to medical professionals, is it’s personal for us – these are our loved ones, our partners, our siblings, our friends. For them, it is twice as difficult; they endure the physical aliments and see the ravages this disease takes on us as it is printed on our faces and weighs on our emotions.
To help endure all that we go through, Valen and I are very open with our emotions. I know when she is upset and frustrated by what she is going through, as well as what she perceives she is putting me through. I am very quick to respond that it is a privilege to be able to be of some support in what she is going through. We chose each other to share this life together, both the stunning triumphs and the days that are a little cloudier. If she has the ability to gain strength from my presence, or positivity from my spirit, then I am more than happy to provide it. This is not always easy-going and both of us can become tired of watching what the other has to go through. We are sympathetic, compassionate people, but we would not change who we chose to share this life with.
The best advice I can give to those going through the PKD journey, caregivers and patients, is to be honest and open with your feelings, and do your best to control the only thing you have any control over: your attitude. The way I face the challenges of being a caregiver is rooted in a simple quote that hung on an old piece of paper on our refrigerator growing up. It was a quote my mom’s father had instilled in her and that she instilled in us:
PKD Patients: How do you keep the lines of communication open with your caregiver and what do you do to let them know you appreciate them?
PKD Caregivers: How do you keep the lines of communication open with your loved one battling PKD and how do you show your appreciation for your PKD patient?