Navigating My Mom’s Dementia
By Felicia Coleman
I’m a firm believer that anything you go through in life, good or bad, there is a lesson to be learned. It is either for our own elevation or to motivate and uplift someone else. I often contemplate how one such lesson presented itself, albeit devastating, it also did something else. It brought unity to my family. Mom was our matriarch.
I recall how family and friends would come to her for candid advice on things from business issues to everyday life situations. I marveled at how she always seemed to have a solution to any problem that someone was going through. She had infinite wisdom, and I’ve learned so much through the years. Little did I know, she was preparing me for my new role in life, a caregiver for her.
This was a new role, not only for myself but for my siblings and other family members as well. This was a role that none of us could fathom having to carry out or even be prepared for. A role that flipped our family dynamic on its head and challenged every family bond that we knew existed. So how do you cope when your once very independent, pillar in the community mother, needs to be cared for?
The truth is the need for care wasn’t something that was suddenly onset. The need was already present and had been for several years, however since mom was still functioning, we didn’t take heed. We just wrote it off as mom is just aging. But as time progressed, we couldn’t ignore the signs anymore. Her demeanor had changed drastically, and we couldn’t pretend like it was just aging anymore. How did we get to this point? This has to be medical.
In March 2018, mom’s strange behavior had a name – Dementia. This disease wasn’t something that I was familiar with and by the time we received the diagnosis, it had already wreaked havoc on the livelihood of my mom. Some of the changes were subtle and some came with a vengeance so profound, I questioned whether any of us would recover. Her life was spiraling out of control. She was losing her independence and her ability to make sound decisions. She became a compulsive hoarder. The home that once held many fond memories and family get togethers, was no deemed uninhabitable.
From the date of diagnosis until 2021, we attended various different follow up appointments searching for various medications to slow down the progression. The only phrase that resonated in my mind though was, “There is no cure, it’s only going to get worse”. I had to accept the inevitable. Dementia was winning.
Many times I felt like all of the caregiving work was in vain. I became angry, frustrated, depressed, and overall burnt out. I no longer had the zeal to deal with mom or her illness, I was simply just going through the motions. But one doctors appointment for mom turned out to be a life saver, not only for her but for my well-being as well. It was during this appointment that I was introduced to the many various resources available through respite care.
Respite care helped to alleviate some of the burden of caregiving. Resources were provided for mom to enroll a memory care adult daycare program. There she gets to socialize and participate in group activities with others seniors battling with dementia as well. For myself, I took advantage of the opportunity to join a caregivers support group and book club. The program is facilitated by Rosalind Scott of the Dementia Alliance.
It was through this support group that I learned so much. From the various books and information shared by other caregivers, I realized that I wasn’t alone in this journey. I was able to embrace every aspect of it. Being able to relay things that I have learned from the support group to the rest of my family has been beneficial in their journeys as well.
It’s amazing to see my entire family from a different perspective now. To know that mom planted the seed of helping and caring for one another into our family, and watching that gift be passed down to her children, grandchildren, and great grandchildren is the biggest blessing. It is truly beyond words to watch everyone actively participate in her care and honor the legacy that she has built.
We weren’t defeated by dementia, we just received the rare opportunity to care for her as much as she has cared for us. I am honored to have the opportunity to cherish one of the best teachers I’ve ever had, my MOM!