I believe health issues become harder to face as we age. As children, we don’t analyze and worry about things the same way we do as adults. When growing older, the focal point we have on ourselves broadens and opens our eyes to new perspectives on life. As we evolve, so does our stress level and concern for things and people. Looking back, I’m glad that I went through dialysis, the removal of both of my kidneys, and my transplant in my teens because I feel it was much easier to go through all that with a young mindset and my parents there to take care of me. One aspect of my health journey that I have learned about, from childhood to adulthood, is the importance of caring for the caregivers in our lives.
In my youth, I did not worry much about my parents—not because I didn’t care, but because I thought they were invincible. My parents stepped into the role of caregivers when I had my first seizure and was diagnosed with epilepsy at the age of 5. This was a role they maintained through the years as I was diagnosed with polycystic kidney disease at age 10 and then had a major operation for severe scoliosis at age 12. My dad worked full time and my mom was my caregiver during the daytime. She took me to every doctor appointment and both of my parents provided steadfast love and support through everything.
The amount of stress and hardships my health has put my parents through is immeasurable. When I spent almost a year in the hospital at age 18, my parents lived at the Ronald McDonald House in Baltimore. Prior to that, they commuted daily from York, Pa. to Johns Hopkins. My dad or mom would arrive at the start of visiting hours and stay until visiting hours were over. I expected this to happen because it was all I knew. Now, at 34-years-old, looking back, I can’t fathom how exhausted they were. I remember during a six-month time frame when I could not eat anything orally and was fed intravenously, my mom would be in my hospital room for countless hours and would refuse to eat in front of me. My health was taking its toll on them emotionally, personally and physically, and I was too young and too ill at the time to notice its magnitude.
What my parents and I have gone through together has left a permanent imprint in our minds and hearts. If I am not feeling well, my mom gets “that look” on her face that my dad and my husband and I know all too well. We have too many scary memories burned in our minds from the time when I was fighting for my life and in need of a kidney. I know they never want my health to get that low again.
Fortunately, by the time I met my husband, Noah, I was post-transplant and past my nearly year long stay in the hospital. He came into the picture with a “clean slate,” but was well aware of my medical history and what the future would entail. Noah is patient, positive, loving, supportive, even-tempered and calming—the perfect demeanor for a caregiver. He has been amazing and encouraging through all of the health struggles that have come up over the past ten years.
Looking back on my life and how my health has affected my parents has given me a heightened awareness of the vital need to care for our caregivers. I tend to focus and worry more about my parents and Noah than myself when I’m going through something. I am even cautious of what I tell my parents and sometimes Noah for fear of worrying them. I struggle with feeling guilty as a daughter and wife for what my parents and Noah have to go through when I’m sick.
Since being with Noah, I have made a conscious effort to make sure he takes care of himself. If I’m in the hospital, I make sure that he does not spend long hours visiting like my parents did. I make sure he is eating well, getting enough sleep and not missing work unless absolutely necessary. When I am unable to be active, I try and encourage Noah to get outside for a walk or run. As my health and what I can do changes, it’s difficult to not be able to do things with Noah that we used to love doing together, like hiking. However, we must embrace our “new normal” and find other things that we enjoy and can do together.
As PKD patients, even though we often can’t get a break, it is important that our loved ones do. It’s hard enough going through health issues, and I know it is hard for caregivers when they want to help and feel helpless, but for me, it’s even harder to watch how my health affects those I love. It is important for us as patients to not be so hard on ourselves and be at peace with the idea that this is our caregiver’s path in life, too. We must also make sure, however, that we are not limiting them in their lives, but rather supporting and caring for our caregivers as they care for us. We lead unique and complicated journeys. Let’s vow to take the best care of ourselves and our caregivers. We all deserve it!
How do you care for your caregiver?