Care Giving 101

I’ve spent the last twenty years of my life care giving for family members. While it is definitely NOT in my skill sets, God provided enough support for me to blunder through those first years.
My father was diagnosed with Alzheimer’s at 80. One year later he was diagnosed with Myasthenia Gravis, a disease we knew nothing about. The flexibility of my teaching schedule allowed me to take Dad to his appointments and support my parents in all ways possible. It worked well until my husband and I wound up relocating to Oklahoma an entire state away from my folks. I began teaching at the university in town and did what I could to balance the care giving support that I could from a distance. Let me be clear. It was not enough. It could never be enough. 

What my mom went through in caring for my dad is beyond the imagining of most people. First, my dad was six foot four and my mom is five foot two. She only two years younger than dad and yet she was trying to care for him 24 hours a day. She lost all privacy. She lost her support system and her husband because he slowly lost all of us. When we take those vows, no one warns us that death is not the worst thing that can happen. Try losing your spouse, best friend, and lover to a stranger you don’t recognize and he doesn’t recognize you. Mom was adamant that she would care for Dad until he passed. As soon as he was diagnosed, I read everything I could get my hands on. This wasn’t going to happen, but Mom and Dad shared a stubborn streak a mile wide. Finally, a kind ER physician sat her down and explained to her that she wasn’t being fair to either of them.

Dad deserved the best of care which meant full time nurses 24-7. Finally, she relinquished. There were hard feelings in the family over this decision, but hard decisions must be made with only two peoples’ feelings involved: Mom and Dad. We did the hard thing. We tried to bring him home to be at family events but quickly he became scared. Strangers were picking him up and bringing him to a strange place. It hurt. In spite of it, we did everything we could to help Dad. Unfortunately, so much effort went to Dad that Mom who had lost her life mate felt abandoned.

When Dad turned 90, we made the next difficult decision. We called in hospice. They removed all the medications keeping him alive and focused on keeping him pain free. During this journey, I traveled from Oklahoma to Olathe, Ks. every four to five weeks. During that last year, I went to visit my parents and my mom looked green. She was too weak to stand. I put her in my car and took her straight to her doctor. He took one look at her and told me to take her to Olathe Medical Center. He would meet us there.

The result of the tests ran that first two days was a cancer diagnosis. I canceled my summer classes and spent the summer in Olathe as Mom underwent four surgeries. I was told repeatedly that most 85 year olds would not survive one let alone four. I had to leave and return for fall classes before she recovered so her neighbors jumped and helped her through her recovery. I’ll never know if Dad understood when we explained to him why he didn’t see Mom for so long. (four months)

Care giving takes a toll. My dad would never have wanted my mom to make herself sick taking care of him. It would break his heart. I thank God constantly that Alzheimer’s saved Dad from knowing. When Dad passed in February of 2020, I gathered our family to move mom to a facility where she would have more support. Then, the pandemic shut the world down. My grieving mom was locked down, forced to eat and live alone. She missed my dad, but she was also now grieving her entire existence. She had to question who she was without Dad. I was locked in another state and I cannot imagine how awful that time was. I knew that I needed to do what I could to protect myself from the care giving trauma.

I began seeing a counselor, considered it a gift to myself. My doctor prescribed anti-depressants. The pandemic forced us all to do whatever we could to get by. When I talk to other care givers, I’m adamant about one thing: take care of yourself first! No one else can benefit from you if you fall. Do whatever. There are groups that meet in person and online with other care givers. Rely on your pastor or other religious leaders. Friends, family, neighbors. We are in this life together. Never give in to the stress, the trauma, the emotional detritus, never give up.

Care givers: You will feel alone, but you are not! I promise you are never alone.