“Mom, my head hurts!” As a 5-year-old, I stood in the kitchen repeating those four words several times, each time louder, until I fell to the floor and had my first grand mal seizure. This is the day I became a patient and my parents became caregivers. Neither role is easy.
November is National Family Caregivers Month and today I am recognizing the three caregivers that have helped me become the strong, positive PKD patient I am today.
Due to my epilepsy, PKD and scoliosis, my parents and I have endured an unimaginable amount of stress and pain together. We share an indescribable amount of love for one another. Mom stopped working to care for me full-time and dad became the sole provider for our family. Doctor appointments, hospital stays, tests, sickness and operations were a large part of our family lifestyle. Even though my role has been a patient, I have witnessed and learned that caregivers are the unsung heroes.
My perspective of caregivers has evolved since childhood. Looking back on my youth, I see how devoted my parents were. They would do anything to make me happy and feel better, and even the tiniest things they did to provide comfort meant so much. From when mom would cut off the crust of my bread to when dad would rub my forehead. I can appreciate that even to this day, they are scared if I call them at an odd hour for fear that something is wrong. Now, as an adult with an understanding of the big picture of life, I wish I had not always expected them to physically be there for me and that they would have taken more time for themselves and each other. I have learned from this and make sure that does not happen with my daily caregiver: my husband Noah.
I feel fortunate to have my husband. Noah is extraordinary. He gives me hope and something to look forward to. His love, support and positive attitude inspire and motivate me. I am in awe by his dedication and desire to share this life with me, which can sometimes be extremely challenging. It takes a special man to marry a woman with chronic health issues and have the strength to handle them with such grace. Just like my parents did, Noah sacrifices a lot. There are many situations in our lives and things that we deal with that other young couples are not faced with. I know at times it is hard work and stressful for Noah, but our unwavering love for one another and how we face health issues with positivity and humor helps us to live a happy life together. I believe two words empower caregivers to be unsung heroes: unconditional love.
Thank you Noah, dad and mom for loving me unconditionally. Thank you to all caregivers for helping patients lead a healthier and more rewarding life.
In next week’s blog post, you will be hearing from my very own caregiver, Noah!
Who is your caregiver and what does he or she mean to you?
Hi Valen! What a wonderful tribute to the caregivers in your life! I was recently diagnosed with ADPKD and have enjoyed reading the stories you have posted. Could you suggest any books you found helpful or think might be helpful for someone newly diagnosed? Thanks so much! I will continue to read your stories and am grateful for your willingness to share it.
Hi Monique!
It sure makes me happy to know that you enjoy reading my posts. Thank you very much for following and for reaching out. If you are on Facebook, feel free to connect at Valen Cover Keefer.
On the following link, the PKD Foundation shares a few books related to PKD that may interest you:
http://pkdfoundation.staging.wpengine.com/learn/resources/great-reads?
My biography, “My Favorite American” by Dennis McCloskey was published in 2008. You may enjoy reading it. 🙂 It is listed on the above link.
Take good care and please let me know if there is any way I can help you along your PKD journey.
Hugs,
Valen
Thanks, Valen! I look forward to reading your book. I had seen the list on the PKD site, but was looking for a book geared to someone newly diagnosed. If you have any other suggestions, I’d be grateful. Thanks again for sharing your experience, strength and hope. Monique
Aww, thanks, I hope you enjoy my bio! Unfortunately, I am not aware of a book for newly diagnosed. If I learn of one, I’ll be sure to let you know. I hope you have a wonderful Thanksgiving!
Thanks! Hope you had a wonderful Thanksgiving!
It’s much easier being sick than watching a loved one suffer AND the emotional aspects are much worse to cope with than anything physical! My illness doesn’t even begin to compare with all yours or every single PKD or dialysis/ESRD patient, My new husband is my caregiver today and I’m probably the most cranky and picky patient ever because I demanded high standards of care (from myself as a caregiver and health care professionals), so I am going to show more gratitude by being a nicer person! I suck. Seriously, I actually asked for water with “3 pieces of ice in it” last night. He is so sweet and adores me just as much as Randall Dixon did. I know you remember him since I told you guys about him all the time, since he was so positive and grateful to all of his hundreds of caregivers through his ESRD journey all the way to the end! This is the sickest that I’ve ever been in my life and can be life-threatening and I’m struggling in my latest caregiving role for my father-in-law with dementia who is probably walking the dog outside at this very moment and they are both peeing on the same tree. ‘No joke. It’s happened before, but I think that it’s absolutely halarious and humor is still one of my best coping skills. He even brought glass drug paraphanelia into our apartment after he had stuck it in his shirt pocket, then forgot about it for 5 hours. I’ve never done illegal drugs (much less put a regular cigarette in my mouth), so I almost yelled at him until he had a logical arguement: “I didn’t want any kids to get hold of it and get hurt.”. Then I just took a breath and couldn’t be mad. Now it’s funny to me.
Hi Amy,
Thank you for sharing what you are enduring. Humor has helped to keep me sane and I’m glad to hear that it helps you as well. You have great knowledge and strength as you endure both ends of the spectrum as a caregiver and now a patient. I did not know you were sick and I am so sorry to hear this. I can tell you are strong and determined. Hang in there and keep that humor. I am thankful to know that you are surrounded by love and have a wonderful caregiver in your husband.
Wishing you all the best,
Valen
Looking back, I think my job as my moms caregiver began the day she had her kidney transplant on July 26, 2002. Together we weathered many a storm: Cytomegalo Virus (CMV) in her lungs, steroid psychosis, broken bones, skin cancer, weight gain, mood swings and wounds that wouldnt heal until her body finally gave out on August 20, 2014. What I admired most about my mom was her strong will and determination especially during the last two years of her life. Constant pain and issues with her mobility led to a two month stay in rehab. Unfortunately, her immune system could not fight off the MRSA, Sepsis and, ultimately, the pulmonary embolism that took her from me. Being a caregiver is hard work. There were days when I just wanted to run away and hide from life. Your own life takes a backseat to that of your loved one. Sometimes your own life ceases to exist because your main focus is on someone else. But despite all the negatives, I would not have changed the time I spent taking care of my mom for all the riches in the world.
Dearest Miki,
I read your sentiments several times as they touched me greatly! Your sacrifices were huge but I can feel the love that you have for your mom and I know she could too. She was so lucky to have you by her side. Thank you for setting an extraordinary example and sharing the truth of the role of a caregiver. I will now think of you and your strong mother when I look at the necklace you gave me! <3
With admiration,
Valen
Thanks to all caregivers. I don’t know where I’d be or how I would cope without the loving devotion of my husband. Big shout out to all that help and support all of us who live with PKD and those who suffer with any health issue.
Thanks Valen for another awesome writing!
So happy you have your dear husband! 🙂 Hope you have a wonderful Thanksgiving! xo