Lessons I Learned as a Caregiver

December 4, 2024

Sandra R. Kiser is an author, and speaker dedicated to increasing awareness of — and supporting those affected by — Alzheimer’s. She was a caregiver to her mother and brother who both lived with Alzheimer’s.

My name is Sandra R. Kiser, and I am the third youngest of twelve children. I never imagined the day when my mom would still be alive but couldn’t talk to me. Nor had I imagined one of my brothers being unable to comprehend what was happening.  

In 2001, one of my aunts was diagnosed with Alzheimer’s. She lived for 10 years after her diagnosis. Around the same time my aunt died, Momma was diagnosed as being in the mid-stages of Alzheimer’s. Looking back, I see my aunt’s journey as an “Alzheimer’s-in-training” course for me; I provided caregiving and moral support to my uncle and cousins during her journey, not realizing it would benefit me a decade later. The road to caregiving for Momma officially began in 2011, and for the next eight years I would help provide care for her and my brother, Greg, who was diagnosed with early-onset Alzheimer’s a year later. 

I’d like to inspire others who may be walking this same journey, and share three lessons I learned in caregiving.

Lesson one is learning to pack your patience. I can recall being frustrated when I placed something on the kitchen table, and it would disappear. I would ask Momma if she had seen the missing item, and she would say no. It occurred to me that she didn’t even remember if she had moved it and so I had to learn to be more patient, change my behavior, and know where to hide certain items so she couldn’t find them.

Momma began to experience forgetfulness in 2010 and received an early-to-mid-stage Alzheimer’s diagnosis. My youngest brother — her primary caregiver — noticed changes in her behavior. After several doctor’s appointments, her gerontologist noticed symptoms that prompted further testing. My younger brother remained her primary caregiver and I was next in line for any caregiving needs. My elder brother Greg’s story is a bit different. My sister-in-law recalled his frustration when he couldn’t remember what he did with the mortgage payment. Then he didn’t recall having that conversation with her at all.

The first day our mother received the diagnosis, I remember being sad; almost numb. A family friend offered encouraging words, but that initial diagnosis broke my heart and I felt trapped. Processing the news took a few days, and I began planning for my new future. There were conversations with my siblings about how we would provide the best care for Momma and how we would attend to her business affairs.

Soon, I was making trips home to stay for multiple weeks throughout the year in addition to Mother’s Day and the Christmas holiday. A typical day caring for her would include preparing breakfast and sitting to talk with her for hours before her cognitive skills declined. It was always hard leaving her in such a weakened state, and driving home would be filled with heartfelt memories and tears as I gazed into a future that appeared dark and painful. 

During my last trip home for a weekly stay, I knew that Momma’s health was declining quickly. In 2015, she needed help with her personal hygiene, although she could still feed herself. Some nights she would get out of bed and wander, which meant many sleepless nights for me.

My life changed again in late 2015 as Momma’s health declined. The following year I relocated from Orlando to Montgomery, Alabama, to be closer to her and provide consistent help with her care. Deciding to move was easy, but I had a year to plan ahead. Lesson two is to make a plan when Alzheimer’s strikes. One of the significant adjustments for me was work because the company I was working for did not offer remote work. God intervened, and I became a remote, part-time employee in another state. This blessing allowed me to continue to provide for my needs and achieve the goal of helping with my Momma’s care.

As I watched Momma’s health decline, the heartbreak became real. I asked myself questions such as, what am I going to do? Who will I call to talk to when I need advice? How many more times will I get to tell her I love her?

Caregiving for Greg was easy. We would laugh and share childhood memories, and there were several trips to Starbucks: a Strawberry Refresher for him and a Caramel Frappuccino for me. Other times we would sit and eat Subway outside Pike Road City Hall when the weather was pleasant. Greg’s health seemed to decline more rapidly after Momma’s death in January 2017. He died two and a half years later.  

Caring for someone with Alzheimer’s is a team effort and not something you want to take on as a solo project. We are blessed to have two sisters in the medical field who could help answer questions and give guidance on the next steps. They helped us organize Momma’s medicines, keep track of changes in her vitals, and record behavioral changes for future appointments. We also had a great caregiver who assisted us five days a week for four to five hours each day. 

Lesson three is realizing the importance of prayer, flexibility, and compassion. One of Momma’s favorite sayings was: “You’ve got to treat people right.” She knew what she was talking about. We don’t know when or if we will need the support of others in life. I’ve realized the importance of prayer in my life and the benefits of talking to God. I always start my day by praying. Taking a compassionate approach to treating others with kindness is excellent advice for any day.

Finally, there are three things I like to remind Alzheimer’s caregivers:

1. It’s okay to talk about the disease.
2. You don’t have to be afraid of it.
3. Be careful of what you say in the presence of someone living with Alzheimer’s; they can see and hear, and you don’t want to be offensive.