During the early years of caregiving, every time my visits ended with Mom, I wrapped my arms around her and squeezed tightly and then said, "Goodbye, see you in a few days." I always forgot how much that statement bothered her until she quickly responded with, "It's not goodbye, it is so long for now." I did not appreciate the difference until much later in our journey when it became very clear that the time to say goodbye was fast approaching. Back when I was still frustrated in the corporate world, I left the office with thoughts accompanying the blanket "good-bye" with "and good riddance!"
It took two years at least after I stepped away from an environment lined with rows of cubes with harsh deadlines of month-end close processes, before I adjusted to a whole new mindset as a caregiver with physical and emotional demands. If you had given me a choice with the stipulation that I would have to allow my heart to break into fragments on a daily basis, I probably would not have taken the leap of faith. At least, what I had been doing allowed me to stay in my head and not venture into the depths of my heart.
I could check the boxes on a regular To-Do list without many unknown factors. I could systematically and logically prioritize the steps involved for monthly processes. Once I stepped into Mom's world full-time, I panicked because I could not see the logical system to guiding, protecting, assisting, and eventually, advocating for her needs. She had physical needs linked to the activities of daily living that were easy enough to assist with early on. The emotional needs caused me to look at her differently, but only after I began to look within myself.
There were so many days I doubted that I was enough to walk along side of Mom on this journey. In the end, I felt that I needed her more than she needed me. That mindset came from my inner 5-year-old that was never going to be ready to say, "so long for now."
What I did not recognize in those early years, though, was how much my heart was already broken. In the early years, I transitioned from following processes to creating daily routines. I gradually lost my identity and confidence and slipped into the scary heart space that made me feel the impact of our journey. My inner 5-year-old had to grow up fast.
Life as a caregiver is messy! I don't mean cleaning up after an embarrassing incontinent accident. I mean fighting the realizations through every concept you once felt secure with that made the world turn around you. Every bit of knowledge that once gave you confidence that you mattered. Every ounce of joy you could muster up that reminded you of what a purpose driven life felt like.
After never hearing the term step-down before Mom's first diagnosis of early dementia to suddenly it becoming a main focus, the term quality of life became a new reality for hers and mine. The early years were spent shuffling her to various different doctor's appointments and managing two household. I continued to struggle to find balance and eventually lost sight of my needs. My life was consumed with her needs and increasing resentments.
It is ironic how we marvel over our children's accomplishments throughout their development from infants to graduated seniors going out into the "real world." Another term that I slowly began to hate because the real world with dementia is a lie. I had to be careful with all the terms because in the early stages they meant one thing to me and in the later stages something entirely different.
In the real world, there are families and spouses caring for their loved ones and going far beyond their limitations out of love or marital obligation. Also in the real world, there are business with strategies to exploit the needs of our aging loved ones. The sole reason caregivers need to build a support network around them to be protected by the real world and able to function without breaking down entirely.
By the time Mom reached stage 6 of 7, her kidneys were shutting down, cognitive abilities were disappearing, and I felt like the real world was pulling me down to the ground. Many days the weight of reality made it difficult to get out of bed to do all the things that felt like a thousand papercuts to my heart. Many days I wanted to be the three-old throwing a tantrum saying, "But what about me?" However, many days I was reminded how this journey was not entirely about me.
No matter how challenging this journey became I am grateful for every bit of it. I can honestly say this now because without being so up close and personal with Mom, observing her every action and reaction, my heart would not have broken open enough to allow the Spirit to begin my transformation. I am grateful for every argument I had with Mom because I now see how the Spirit used those moments as the catalyst to break me free from the corporate logical thinker. Don't get me wrong, there is a purpose for that mindset, but when it comes to love there is no room for logistics.
When I stepped into this role I did not call myself a caregiver because I was an angry daughter and partially hurt friend. As the years passed and my resentment increased I became familiar with the role of a caregiver. I also found many more parts of me that contributed to my stress and feelings of inadequacy that kept me from loving myself and others. I look back at what my siblings and I were challenged with to see similar problems that caused my parent's divorce. Learning how to care compassionately takes time because it requires these kinds of life experiences we typically want to run away from.
Now out of the ashes of caregiver burnout I rise to fight for others. Mom not only taught me how to connect with others and care compassionately, she showed me why healing a broken heart is vital. She showed me where the systems in place today fail so many who seek it out for help. It is time for more Proactive Caregivers to rise as well.