Selma’s Story: Becoming a Caregiver Can Be a Subtle Process

My caregiver journey did not begin with a bang. My mom didn’t take a fall, or suffer a heart attack. There were no screaming sirens or vehicles rushing to the nearest ER. To the contrary, my status as a caregiver was a very gradual process. There is not a point in time that I can claim as the exact moment that I became a caregiver. It occurred over a number of years. That being the case, you might think that I was more prepared. Unlike someone who’s loved one has an accident and they are drafted into caregiving on the spot, you might suspect that I had time and foresight to prepare emotionally and physically for the journey. I did not. Although speaking so personally is against my character, I have learned from my care experience that sharing your story is key to helping others, as well as helping with your own personal healing and recovery. So, here’s my story.

At the time, my mom was in her early 70’s, still living in her own residence and taking care of her own daily activities of life, housecleaning, cooking, etc. My siblings who lived nearby would check in on her every day and make sure that all was well. Having left home at an early age, I have never returned to my home state, Tennessee, to live. So my caregiver journey was primarily from long-distance. I depended on my siblings to keep me updated as to how mom was doing health wise and to let me know if there was anything she needed. I helped out financially on a regular basis. I talked to her on the phone every Sunday morning and went to visit her as often as I could. Time off from my high pressure corporate job always meant a trip back home to visit with mom. That was my vacation.

During one of my visits home, my brother mentioned to me that he noticed that mom was acting differently. She spent a lot of time sitting alone either in her bedroom or outside on the porch swing. She didn’t engage in conversation like she used to. She would respond to questions, but she didn’t exchange dialogue back and forth and seemed to be daydreaming most of the time. After hearing that, during that visit with her, I was careful to spend time observing her behavior and how she interacted with those around her. For the first time I noticed a little twitch in one of her hands. I immediately asked her about it, and she simply responded by saying something like, “Oh, my hand always does that.” 

Before I left town to return home, my sister and I took mom to see a doctor. From there, she was referred to see a few other specialists who took all types of tests. A few weeks later, I received a call from my sister that mom’s medical tests showed that she was suffering from Parkinson’s Disease. This is a progressive brain disorder affecting the nervous system. Symptoms usually present themselves slowly over a period of time, but not every individual is the same. 

My immediate response was a feeling of guilt. How could I have not noticed that something was wrong during my Sunday conversations with her? Why hadn’t I seen the distant look in her eyes when I visited her in the past or the way she seemed to have lost interest in everyone and everything around her? Her big full-of-life laughter and contagious smile had been replaced by sullenness. In fact, my mom had changed before my very eyes (and ears) and I had missed it entirely. I had totally missed the “awareness” stage of caregiving. As we explained in our book, Working Caregivers – The Invisible Employees, the five stages of caregiving are : stage 1 – awareness; stage 2- responsibility; stage 3- increasing demands; stage 4 – end-of-life and 

stage 5 - bereavement. 

To be clear, the “awareness” stage is when you become aware that something is going on with your loved one. Once you acknowledge that there is a problem, you move on to stage 2 and decide whether or not to take “responsibility” to help them. I had no trouble making the decision to be there to care for my mom. My siblings and I took rotations and I would come into town and stay for short periods of time, caring for mom to give them a break. I enjoyed every moment I spent with her.

For me, the most difficult part of the process was the slow progression of disease that gradually robbed mom of her mobility, her zest for life, her ability to thrive through her circumstances and even her memory of those around her. I should mention that several years before the Parkinson’s diagnosis mom was diagnosed with type 2 diabetes. Subsequently, her illnesses included congestive heart failure, kidney failure, dementia and suffering several strokes. To this day, I can’t tell you in what sequence they appeared. That’s like asking which came first, the chicken or the egg. All I know is that after a period of years, my family and I found ourselves in the bereavement stage of caregiving. Despite the years it took, however, mom was gone too quickly. 

I should point out that over those difficult years, as mom’s ailments grew and her body weakened, I found myself spending less and less time at work and more time taking care of her. With every stage that her condition worsened (“increasing demands stage”) I found it more and more difficult to juggle my work and caregiving responsibilities. Eventually, I felt I had to make a choice between my job and being there for my mom. I decided to be there with mom through her end-of-life journey. 

I must say that I have never regretted my decision to care. During all those years of traveling back and forth to help take care of mom, I did so gladly with appreciation for the sacrifices that she had made for me. Like so many other working caregivers, I never shared this part of my personal life with folks at work. Now looking back, if you asked me if there is anything I would have done differently, I’m not sure. Maybe think through leaving my job a little more clearly since it had its negative consequences.  But today the climate for the caregiver storm is changing. Some employers are beginning to recognize the impact that caregiving has on their workforce and the need to address the challenges faced by these employees.  Employers want to retain their employees, not lose them.  

What I know now that I didn’t know then is that no one has to lose. The working caregiver, the company and the care recipient can all win through this caregiving crisis. Sharing your stories can go a long way in this struggle to victory. Communication is power! 

That’s my story. Please feel free to share your caregiver stories with us. 

Until the next blog.  

Thank you for stopping by, reading, and for caring!