PKD Connection Blog

PKD Will Not Beat Me

Caring for the caregiver

Valen and her parents during a recent hospital stay

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.

Valen’s mom taking care of her when she was younger

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.

Valen supporting her mom during a recent hospital stay

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.

Noah visiting Valen in the hospital

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.

Noah being supportive during a hospital stay

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?

Comments

  1. Anne says:

    Beautiful words to thank your family. I havexADPKD, age 55. GFR is 36 as of this months visit to my doc. Hanging in there.

    1. Valen Keefer says:

      Hi Anne,

      Thank you! I appreciate you reading my blog and for your kind words. I hope your GFR hangs steady and you have many more healthy years ahead of you. Wishing you the best!

  2. Jan says:

    Everything you said is very true….I totally agree When my disease really progressed to a point that I was getting much worse, I had 2 small children to care for as well. I now try to never say when things aren’t good, or I’m not feeling well unless it comes to a point where I have too. I too have seen the terrible affects that me living with PKD, having had 2 liver transplants , having 1day to live 9 years ago and most likely a kidney transplant in the future , has had on all of my family . It’s easier for me, to keep quiet as long as I can, to give them the peace they deserve , after dealing with this …..for all of their lives in my kids case.

    1. Valen Keefer says:

      Hi Jan,

      I admire and adore you and your family! You are all amazing and we are for sure kindred spirits. Thank you for sharing the truth when it comes to the emotions of living with PKD and taking care of our caregivers. Lots of love to you!

  3. Paigey Paige says:

    I am so appreciative of you sharing your story, I have Pkd and I’m now dealing with enlarged kidneys which is very uncomfortable, not to mention the constant back pains! Thanks for sharing your story. Having a support system is awesome! That is the thing I lack it’s very stressful plus watching my daughter grow up and seeing me sick is difficult but she is my joy and I hope to be around for a long time for her. May you continue to win your battle against Pkd. ❤️✌

    1. Valen Keefer says:

      You’re welcome! It is an honor to share my journey! Thank you for reading my blog and for your sweet sentiments. I’m sorry you are enduring the awful effects of PKD and that you have to without a support system. I’m happy that you have your daughter to bring you joy and give you something to fight for. Please let me know if there is any way I can help you along your PKD journey. Are you on Facebook or Instagram? If so, feel free to connect with me at: Valen Cover Keefer. Wishing you all the best!

  4. Monica Magoon says:

    Thank you Valen, for sharing your life’s journey with all of us. Your courage and positive outlook help us all. I’m a caregiver for my husband who is on dialysis and I try to remember to take care of me, since if my health fails, I can’t help him. I’m so blessed to have the support of family and friends and sometimes get annoyed when my husband is having issues and they seem to worry about me more than him. He is in the hospital now as I write this.

    Thank you for always encouraging others. May God bless you and your husband and parents.

    1. Valen Keefer says:

      You’re so welcome, Monica. It is a pleasure to share my journey. Your sweet thoughts mean so much, thank you! It sounds like you are such a strong caregiver and I appreciate all you are doing for your husband and the PKD community. I hope he is able to find a kidney soon and that he is improving and can get out of the hospital soon and return home. Wonderful that you have family and friends to help and that you are mindful to take care of yourself. Wishing you, your husband and family all the best! We’re in this together!

  5. Marjorie Moore says:

    True words, Valen. As patients I think we need to work hard to avoid being self-centred. Caring for those we love and being positive is the best gift we can give them!

    1. Valen Keefer says:

      Beautifully said, Marjorie. Thank you for reading my blog and sharing your sentiments. Take care!

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