Caregiving is HARD
Diseases
Issues and Challenges
Stacey has encountered: Caregiving
My Story
I have always been a caring and organized person—you have to be to be a caregiver. As a caregiver for two elderly parents and a very ill husband while working full time in retail management, I am here to tell you it was not easy.
Mom (who had Alzheimer’s) and Dad (Parkinson’s) lived on separate floors of the same care home for the last six years of their lives. I learned that the closest caregiver is the one the patient lashes out at. That was me! I also had to navigate their lack of finances and the Medicare, Medicaid, and Veterans healthcare systems. Every day off was spent with them. Dad passed in September 2020. Mom passed in January 2021. As soon as she passed, Greg, my husband, was failing and starting new treatments. I had no time to mourn.
Greg had never had a serious illness prior to October 2019. It started with fatigue—then bruising. After he finally visited the doctor, bloodwork showed dangerously low platelets and hemoglobin counts. We rushed him to the hospital. Over two months, Greg's doctors ruled out several conditions before diagnosing him with aplastic anemia. A bone marrow biopsy showed he had no bone marrow and his platelet count had decreased to 1,000 per ul. We tried to get to the NIH for a clinical trial, but by then, COVID had shut down the NIH unit. Over the next two years, we went to our local hospital twice a week: on Tuesdays for platelet transfusions, on Fridays for blood transfusions. When I could not take time off from work, my brother-in-law took him. All told, Greg received over 150 platelet transfusions and over 100 units of blood during that period!
In March 2021 I took a leave from work to care for Greg. By June 2021, I realized I could not return to my job and give it 100% while caring for Greg. I made the difficult decision to take early retirement. In August 2021, we finally saw Dr. Neil Young at the NIH, a top specialist in aplastic anemia. He told us that none of Greg's treatments had been working, and Greg needed a stem cell transplant. A 100% match was located after 2 months—a 22-year-old from Poland. We were ecstatic. Greg received his stem cell transplant on December 16, 2021. Greg's blood counts began to improve after the transplant, but he was still severely immunocompromised and susceptible to infections. Just when we thought he was out of the woods, he contracted COVID in October 2022 and was admitted to the ICU for fifteen days. A few months later, he contracted shingles. His blood counts have since stabilized.
Physically, Greg is not as strong as he used to be. Because of all the transfusions, his iron levels are very high and he undergoes therapeutic phlebotomy every 3 weeks until his iron levels normalize. Other than that, he is healthy! We were blessed, but Greg's illness has taken a physical and emotional toll on me. We were grateful to have good Medicare insurance that covered most of his medical expenses, and we were lucky to receive some grants for medication co-pay assistance. Managing his illness was and still is a full-time job! I wish I had had someone to guide me during Greg's illness. I took copious notes at each doctor's visit and asked a lot of questions. I was constantly on UPMC's patient portal checking his test results. Advocating for your loved ones is important as they may not be in a position to advocate for themselves. I want to share my story with the IMF community so caregivers won't have to feel like they have to do this all alone.
Greg's blood and platelet numbers are now great. He works around the farm every day and loves working on his 1934 pickup. We have also connected with his donor in Poland—he was excited to hear from us.
I am an advocate for LLS, working with a wonderful group of advocates that support patients and their families to help improve their treatments and work with lawmakers to educate them on the importance of research and lowering treatment costs for all blood cancer patients. I am looking forward to using my new knowledge from our Legislative Advocacy Masterclass to help current and future caregivers. You need to know you are not alone. I have been able to mentor a fellow patient on how to prepare for his stem cell transplant--he was grateful. Caregiving is hard—but I became a great caregiver!
My Motivation and Inspiration
My Motivation is my husband Greg. I have been a caregiver for over 12 years between my husband and my parents. Even though Greg has fought his Aplastic Anemia I still watch out for him every day. I also am an advocate for LLS and that keeps me going to help other patients and caregivers so they know they are not alone
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