VA Caregiver Support Program
A Caregiver Support Program (CSP) Editorial Series
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Dear Fellow Caregiver
A Caregiver Support Program Editorial Series
Thirty years ago, Kathy Parker met the love of her life, a Veteran of the United States Army who served in Vietnam. After years of taking on life’s adventures together, Kathy and her husband took on a new challenge after learning of his stage four kidney failure. Read her letter to other caregivers about how the Department of Veterans Affairs and the Caregiver Support Program are helping her and her Veteran during their time of need.
Dear Fellow Caregivers -
My Our story of love and dedication began nearly 30 years ago. We were both older adults, returning to college, seeking a degree in computer science. One evening, I was on my way to the computer lab, and he asked if I needed help with my computer program. That was a standard “pick-up” line, and I learned to “just say no” and keep moving. However, it was something different about him, and I said, “yes”! He was handsome, smart, witty, and made me laugh. I had no idea he would be my forever guy… our connection was instant, and we were inseparable.
My Vet had just recently retired after 25 years in the military, and we were together for eight years before we decided to marry. We never looked back, through the challenges of life. Our love and commitment were lasting. I remember the day he asked me if I wanted to jump on his train as it was moving. We both had shattered dreams; we were firstborns and fighters. So, I jumped on that moving train, and even today, we both look back with no regrets.
We loved traveling and cruising - it was on a cruise ship at the very top of the boat where he proposed to me. We roller-skated, fished, camped, and built computers; my Vet was a small aircraft pilot, and we would go on short-distance flights. We had a wedding photography business which kept us quite busy.
Soon, we decided to settle down and buy a home. We found an article stating there was an urgent need for people to open their homes to foster abused and neglected children. We both were on board, and shortly afterward, we became foster parents. For 13 years, over 100 children stayed in our home. Eventually, God made plans for us to adopt. We received a call to pick up a two-day-old baby girl at the hospital. We fell in love with that bundle of joy at first sight.
My Vet was diagnosed with type 2 diabetes several years before retiring from the military. We never fully understood the toll this disease takes on the body. He was also diagnosed with high blood pressure and an enlarged heart valve. He looked and felt great outside; however, his kidneys were slowly failing inside. There was no warning or preparation for what we would face and how this disease would change our lives.
As the years passed, my Vet began having trouble keeping his blood sugars (BS) and blood pressure in range. They were always high to the point he would say, “I feel better being ‘high’ than low.” His doctor suggested that he transition to insulin. After several years on insulin, the doctors struggled to find the proper medication to lower his BS numbers. His kidneys were quietly shutting down, and his body began to show the effects.
One day, I noticed a bruise on his face and asked what had happened. He said he blacked out in the bathroom and bumped against something. I noticed he began to tire quickly and was noticeably irritated. While visiting a neighbor, he stated he felt faint and could barely make it home. The next day, we went to VA urgent care, and they sent him to the nearest hospital in an ambulance. He received a defibrillator. He never fully recovered; a couple of years later, we were informed he was in stage IV kidney failure. I did not know about the kidney disease and felt he was keeping this from me. I vowed to go to all his appointments to be his eyes and ears, primarily advocating for him.
He was assigned a nephrologist, who told him his current and long-term options. He had already decided that dialysis would never be an option; therefore, we began finding and preparing for a kidney transplant. Meanwhile, as each month passed, his health deteriorated rapidly. My Vet could barely walk and was no longer able to perform daily personal grooming. He could barely get to the bathroom and stopped having meals at the table because he no longer had an appetite and was wasting away.
He was not in pain; it was me who was hurting, confused, afraid and alone. I was hurting because my Vet was dying slowly, and no one seemed to care. I was confused and afraid because I thought the VA would take my Vet away to a nursing home if I didn’t figure out how to take care of him. I was alone because no one had any answers to my questions or returned my calls for help.
He asked me to take him to VA urgent care; my daughter and I almost needed to carry him to the car; he was so weak. I just knew he was never coming home again; my heart was breaking into pieces. When I thought I was at the end, God turned that entire situation around and gave me hope. The doctor walked in, assessed the problem, and asked me to step outside the room. He told me he planned to get my Vet the help he would need by admitting him to the hospital. He assured me he would get the help he desperately needed. While waiting to be transferred to the hospital, a social worker tracked me down to let me know she would be talking to me later. I couldn’t believe what was happening.
After a few days, they released my Vet from the hospital. A member of the Caregiver Support Program (CSP) contacted me, and I was on the phone with this God-send angel for over two hours. She listened to me, understood my pain, and promised to speak to the necessary people to get us help. She followed up with me, stayed in touch and explained how CSP could help ME. She signed me up for a couple of programs. I never thought about myself in this process; I only focused on my Vet and his well-being. I was so overwhelmed with caring for my Vet I did not want to commit too much, still not realizing they were there to help, not to pressure me.
I began getting random text messages from “Annie,” a tool sending encouragement and affirmations. I signed up for a few classes through Caregivers FIRST and began learning about self-care, how to alleviate stress through breathing, setting goals and tips and ideas to get my Vet to change or improve behaviors. CSP also matched me with a Peer Mentor from the Peer Support Mentoring program. Let me tell you; my mentor is the perfect match for me! She’s a gift from God!
We soon began to get the right equipment that my Vet needed to stay in our home and help me better manage his care. I can’t begin to express my gratitude for CSP’s resources. My wish is to increase awareness and funding for this amazing program.
In closing, my fellow caregivers, the struggle is real. So are the feelings of abandonment we experience when no one seems to care and those thoughts of just giving up. Hang on! There’s a fantastic group of individuals in CSP that are there for us! They will throw you a lifeline and not let go!
I’m blessed to be connected to this amazing group of individuals!
Call VA’s Caregiver Support Line (CSL) at 1-855-260-3274 to learn more about the support that is available to you, and for assistance connecting with the Caregiver Support Team/Coordinator, at your local VA Medical Center.
VA CSL Expanded hours:
-Monday-Friday 8:00 a.m. to 10:00 p.m. ET
-Saturday 8:00 a.m. to 5:00 p.m. ET
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