To be a caregiver is sometimes a choice, and sometimes not a choice. Sometimes being a caregiver is a gift, and sometimes being a caregiver is a painful experience. Sometimes the caregiver experience is all of this and more: a choice, not a choice, a gift, painful, joyful, heartwarming, satisfying, frustrating, and limiting.
On October 23, 1993, unbeknownst to me I would become a caregiver for the rest of my existence. On that day it never occurred to me that a new role was added to my life. All I knew was that my husband, Tom, was a very sick man on this day, and needed help, quickly. What we did not know but would soon learn is he had encephalitis. The encephalitis damaged his executive functioning ability and other, various parts of his brain.
All the things I knew about our life, our family’s future, and myself was flipped upside down on this day. Tom was 38 years old and I was 33. Our kids were 9 and 10 years old. Tom was our leader, he was the guy who loved us fiercely, protected us always, and worked harder than anyone I had ever known. How were we all going to survive this? It would be a few months before it dawned on me that we were surviving, and we were just surviving, because I was learning how to take the reins.
It would be 20 years before it occurred to me I was a caregiver. I had always thought of caregiving as something older people end up doing for their spouses. The first two decades of being a caregiver I did not have peer support. I did what I did because my family needed me to. Despite the sometimes-extreme difficulties I went back to work to help feed our family, to have healthcare benefits for us, to be on a forward trajectory that gives hope instead of mired in the muck of our lost man. Tom was with us but not with us in the way he was pre-brain infection. I finished my undergraduate degree, and earned two master’s degrees, all on a part-basis while I worked, raised my children, and cared for Tom. Faith and flexibility kept me in the game of our life, however, it was a while before I learned that this was key to success.
For a few months, when Tom was at his sickest, I was so overwhelmed with fear, and isolation that I nearly gave up on life. We had no income, his disability claim was denied, and he could barely get out of bed. It was winter in upstate New York. It snowed, and snowed, and snowed. The kids were out of school more days in January then in school. They were bouncing off the walls with boredom. Tom’s eyes were a mess and he wore sunglasses indoors because the sun reflecting on the snow was more than he could take. I hated it all. There was no relief in sight. I was more alone than I ever thought possible. Everything I had wanted to do for myself as the kids got older was permanently shelved. I was grieving hard and did not know it. I couldn’t see my faith through my tears and hurting heart, it felt gone yet it wasn’t. It was always there, and I know it because I am here today.
June of 2010 Tom was diagnosed with Amyotrophic Lateral Sclerosis, ALS. He is a Marine Corps veteran. ALS is a service connected disease. It is a devastating, fatal diagnosis. Even then, when Tom was diagnosed with ALS, I did not categorize myself as a caregiver. It would be three more years after the diagnosis, 2013, before a few younger caregivers of veterans pointed out that I was a caregiver, either way, with or without the label, Tom is still my husband, still the love of my life, and I would not have cared for him any differently if I had always thought of myself as a caregiver. Spouse first, caregiver second.
If I was sitting in a room with younger caregivers to impart the wisdom I have gained over the years I would say if you are faithful it will not leave you even if you feel you do not tend to it daily and it will carry you in the darkest of times. I would say embrace flexibility as a way of life, you will be less frustrated and stressed, it will carry you through some tough times. I would say to take care of yourself because if you do not chances are you will find later in life that some of your health issues are as a result of neglecting your own care. Self-care is health care. The better we take care of ourselves the more successfully we will care for our loved one.