I met Nancy 30+ years ago when I moved back to North Carolina. At the time, she was working in a placement agency and placed me in my first job. She sent me on unique assignments and as the months went by, we became friends. During our friendship, I spent time with Nancy, her mom and entire family. It was a pleasure getting to know everyone, especially her mom, Gladys. She was eloquent in her speech, and always presented herself in a classy manner. We became like family back in 1986 and have enjoyed spending time together since. Here is Nancy’s story about role reversal and caring for an aging parent.

Nancy is the youngest of three children and was very close to her mom. Over the years they spent time together going to salons, shopping, and watching tv shows. Nancy was focused on her son and career that she had worked so hard to attain. But she always made time for her mom.

Like many children, she made a choice to be the caregiver her mom deserved.

But with every choice, comes a stark reality… “I bit off way more than I can chew!” With every situation, the enormity of caring for her mom became even more real. Nancy began questioning her caregiving abilities. There were many responsibilities and some days the overwhelm took over. She was always in “reactive mode!” And just like that, her emotional fortitude was put to the test.

At first, Gladys’ care was manageable. It consisted of weekly visits, in which Nancy happily engaged. She helped her mom with chores around the house that were becoming problematic for her. But as her mom’s health began to show a slight decline, the amount of time needed to care for Gladys became more consistent. When Nancy realized the decline was more significant, she dug in her heels and went to work taking on more responsibilities with her mom’s care. Other family members were unable to be of more help, so they suggested she look into care options. That would allow Nancy to manage her life better. But she refused to do so. Nancy believed that no one would be able to care for her mom as she could, so she put on her emotional blinders and kept moving forward. It was not apparent to Nancy at the time that she was neglecting her own care because she didn’t take time to think about it.

Most caregivers while in reactive mode, wear blinders like a badge of courage.

Caregivers believe it would be seen as selfishness if they were to set boundaries and prioritize their own care over the care of their loved one.

Prior to 2020, Gladys began to show signs of being unsteady on her feet and had fallen a few times. Nancy was worried about her mom falling again. So, at Nancy’s invitation, Gladys moved in with her and her son. They made changes to their home that made Gladys’ life easier and more comfortable. She had her own bedroom that she and Nancy decorated together. But bringing a parent into your home is difficult for everyone; routines are disrupted, and new ones need to be established. Concessions are required to incorporate everyone’s needs. Having multi-generational families under one roof, sometimes works out great and sometimes becomes more difficult. In Nancy and Gladys’ case, it was the best situation anyone could have hoped for. They were able to spend time visiting other family members, having dinners, and enjoying retail therapy together! Gladys was able to get out of the house without assistance. She looked forward to a much-needed hair fluff at the salon and a manicure when possible.

In 2020, when COVID hit and everyone scrambled to figure out how to safely care for their loved ones, Nancy dug in even deeper. By then Gladys’ physical health had begun to show some decline; her socialization with others decreased and Nancy raced into survival mode.

Gladys spent quality time with Nancy as they strolled down memory lane with childhood memories. Old photos were a weekly treat. They provided the mental stimulation that Gladys desired to keep her sharp. But they provided something more for Nancy, a sense of belonging to a past her mom spoke of so fondly over the years. Those photos became the bridge between the present and the past. In the last few years of her life, Gladys needed more care. And as her health declined she became dependent on a wheelchair for assistance.

During her final years, Gladys developed Sundowners.

It refers to a state of confusion between daytime and night causing people to stay awake at night and sleep during the day. Sundowning is often associated with dementia and is most common during the middle and late stages of the disease. Some show an increase in restlessness, and anxiety which make caregiving more difficult. Elderly people taking a number of medications can also exhibit Sundowning. Nancy learned to work with her mom’s condition by purchasing a special headset for the tv. That way, her mom could enjoy tv and music at night while everyone slept. As a result, Gladys flourished under her daughter’s care. Just when you thought she was nearing the end, she would bounce back with a resilience that shocked everyone.

Home Health was called in after each hospital stay and medical visits helped both mother and daughter. Nancy noticed improvements in her mom’s overall health and believed they were turning a corner as her mom seemed to always bounce back. This cycle went on for what seemed like years. Gladys would decline, go to the hospital, return home, Home Health would step in for a few weeks and Gladys would remain in stable condition until the next health crisis. No one could believe how tough she was!

The aides would come three times a week to care for Gladys and lighten the caregiving load for her daughter. But even with their help, Nancy always believed she was better at caring for her mom than anyone else and fought the extra care offered to her. Her son helped with meal planning and took the night shift while her sister and niece were as hands on as they could be considering their full lives. Even the pet dog, Copper, got into the act of caregiving as he alerted Nancy if her mom tried to get out of bed.

However, Self-Care was always on the backburner.

For Nancy, Gladys was her primary focus, and she neglected her own health and personal care as long as she remained in reactive mode. When she was able to take a break from care, she spent time at the gym working out her frustrations of watching her mom become steadily weaker in front of her. Each medical crisis and hospital stay saddened Nancy as she realized her mom would leave her one day. But she was always grateful her mom continued to bounce back and was able to enjoy the last year of her life. Gladys was engaged with her family until the last few weeks.

Hospice was called to help with Gladys’ end-of-life care and give Nancy much-needed respite. During her respite from care, which was never long enough, Nancy enjoyed Self-Care activities that helped her disengage from the intensity of caregiving. Her visits to the gym were a priority and each visit would bring a sense of empowerment. Nancy also spent time in her garden, planting flowers and sprucing up her yard. She found joy in the smallest things – listening to her favorite songs and the birds chirpping and enjoying the vegetables and herbs her son planted in their garden. Nature gave her a peace that she never knew existed in her already chaotic life. And once she began to allow those feelings to penetrate her everyday life, the more at peace she became. Time management was a struggle because of the many directions Nancy was pulled into.

When the parent becomes the child and the roles are reversed, many caregivers are not ready for it.

Gladys began to call Nancy “Mother” in jest. It was Nancy who took over the role of parent and Gladys was now in the child role. Amazingly, Gladys gave in to her new role and allowed her daughter to make all her medical and financial decisions. She looked forward to daily visits from the hospice care team members. They quickly became extended family to Gladys and her daughter. Monthly massages, music therapy visits and a hair stylist who came to the home comforted Gladys. What more could she have asked for? The nightly tv shows and songs in her headset were a real blessing to both Nancy and her mom. It was special bonding time that cemented their mother-daughter relationship. There wasn’t anything Nancy wouldn’t do for her mom. Singing to her mom’s favorite Tina Turner and Rod Stewart songs and dancing were a part of the special moments they shared. And Gladys did not let the fact that she was bedridden stop her. She raised her legs off the bed in a happy dance! Her laughter lightened the mood in the room.

Nancy’s life came to an abrupt halt in December 2023 when her mom passed away. The emotions she had been holding back for years suddenly rose to the surface. It was an unbearable pain like she had never felt before. This loss hit her hard as her mom had been her very best friend her entire life.

Once she had some time to reflect on her caregiving journey, she realized the magnitude of what she had endured. She thought about the other caregivers she had met along the way and longed for a way to make sense of the loss. As she was able to come to terms with her loss, she thought about the lessons she learned.

When asked what advice she would give others in her position, Nancy had this to say, “If someone reaches out to help, don’t be a superwoman. Let them!”

Nancy also had some advice for those who are beginning or in the middle of their care journey.

• When you are exhausted, you are not as helpful as you think you are to your loved one. Your patience wears thin sometimes at the wrong moment. Sleep helps with patience.
• Letting go of everyday tasks will help maximize your quality time with your loved one. Allowing others to help, can take the pressure off you to do everything yourself.
• Family photos and recipes are important memories to be cherished once your loved one is gone so ask all the questions you can while you can enjoy the moments together.
• Guilt is a powerful emotion. Don’t let it take hold of what is important… time together.
• Although you are not ready to discuss End-of-Life care, it is important to have a support system to help you through the difficult days ahead.
• Lastly, but most importantly, Nancy could not protect her mom from the suffering she endured during her last few weeks of her life. It is the most difficult emotion to let go of even today. But what she takes away from her experience and is grateful for is that her mom always had a zest for life. Even at the end she was a class act and lived her life accordingly!

***NOTE: How do you prepare for End-of-Life? If you choose hospice, they provide reading material that explains the signs a loved one goes through as they complete their life cycle. It is important to read all the materials offered to you and ask as many questions as you have. The information provided may not be relevant at the time but may prove helpful as you enter a new stage of care.

It takes a special kind of person to care for a loved one in need. I believe that as caregivers, we are more resilient than we think!