This is my personal essay on HEALTH and OLDER ADULTS.
Never in a million years could anyone have convinced me that my mom would become ill and I would be her caregiver, but that’s what happened.
The Back Story
My mother retired at age 61, stayed that way for 6 months, then worked for another 20+ years. She experienced various non-life-threatening health issues and bounced right back after each one.
At age 81, Mom survived lung cancer. The doctor removed the cancer and decided that there was no need for chemotherapy or radiation. A few months later she joined the 2020 COVID-19 contact tracing initiative and remained until her contract expired in February 2022.
At that point, Mom was driving, cooking, and doing everything she desired to do. She continued to live alone with no worries.
During the summer of 2022, my mother started experiencing episodes of shortness of breath. Her primary care doctor noticed that her heart rate was a little fast and he was treating her for that.
By December 2022, Mom was having extreme shortness of breath. I was on the phone with her one Friday evening and she told me that she couldn’t walk from one room to the next without losing her breath.
That was the day that changed our lives.
2022 Hospitalization
My mother was rushed to the hospital and was treated for rapid heart rate, also called AFib. Her legs were filled with fluid. She remained there for 12 days.
I stayed in constant communication with hospital staff on mom’s progress. I left a notebook at her bedside for her to record vitals and other health-related notes.
It appeared that the medical team was having difficulty locating the root cause of my mother’s afib and fluid retention. However, they focused on controlling the symptoms so that she could go home.
Mom was insistent that she wanted to leave and let all the staff know that from the day of admission. That’s a side of her that is rarely seen. She’s normally a calm person.
Before leaving the hospital, the doctor inquired about Mom’s living status. I informed him that I would be going home with her. Although I never had to do that before, I’d already made up my mind that I would go to stay with her if she needed help during recovery.
Little did I know, this time would be different than any other. My mother’s health was taking a turn in an unexpected direction.
The Return Home
Upon her discharge, Mom was breathing somewhat better, but her legs were still very swollen. She was weak and didn’t seem to be improving much. She expressed feeling nauseous almost every day.
At the follow-up visit, my mother’s primary care doctor was puzzled at how she was discharged in such a poor condition. After considering the ongoing symptoms, he decided to send her for an MRI of the heart.
That was the first time I ever participated in a medical appointment with mom. I brought the notebook, asked questions, and advocated as needed.
Within the first month that I was with her, Mom depended on me to help her navigate the healthcare system. Phone calls to health providers and therapy sessions needed to be managed.
If my mother was unable to respond to questions being asked, she would pass the phone over to me. As a former case manager, I understand the terms that healthcare providers use.
There were numerous medication changes, increases, and decreases due to reactions from mom’s body. It was extremely stressful for both of us.
Test Results
When the results from the MRI came back, the images indicated the finding of a rare heart condition called amyloidosis. My mother was then referred to a doctor who specializes in treating this disease.
I started to realize then that Mom was going to need long-term assistance. Whether I liked it or not, I was her designated caregiver.
Mom met with the specialist for the first time in February 2023. He explained what was going on with her heart. He told her why she was experiencing shortness of breath, AFib, and fluid retention.
The doctor stated that she had cardiac amyloidosis, but he wanted to confirm the type. Not long after the appointment, Mom had a PYP scan, an echocardiogram, and genetic testing.
The tests confirmed my mother has genetic ATTR cardiac amyloidosis. This is a rare and incurable disease. The doctor prescribed medication to stop the progression of the disease but explained that the damage that’s already been done by the amyloidosis is irreversible.
Both of us were shocked at the results. Mom did her research on the disease. I also collected as much information as I could on the subject. We tried to understand what ATTR cardiac amyloidosis was all about.
I also received genetic testing and was found to be a carrier of the amyloidosis gene. Of course, we contacted all our close relatives. No one else wanted to be tested.
2023 Hospitalization
In late November 2023, my mother was hospitalized with AFib and dehydration. This time she stayed for 17 days. The complication was the advancement of the heart damage from the amyloidosis.
Mom’s body was resistant to the medications and wouldn’t release the fluid she was retaining. Her heart rate continued beating higher than it should.
Her heart was expanding but not contracting. The cardiologist on the team was familiar with the amyloidosis and worked with her outpatient cardiac specialist.
The doctor was straightforward with us about Mom’s condition and informed us that the damage to her heart was extensive. To enable her to return home, the cardiologist started an IV medication that she could take with her.
Unlike the 2022 discharge, Mom left the hospital with regular-sized legs, a lower heart rate, and feeling much better.
Caregiver Life
As a new caregiver, I found my first year to be one of challenges, discovery, understanding, compromise, emotional highs and lows, and realizations.
At one point, I felt alone and abandoned by my siblings. I had to find ways to encourage myself as I treaded along this unfamiliar path.
My daughter was the voice of reason who stated, “Mom, you’re on assignment with Grandma.” I still hold those words close to my heart.
My first year as a caregiver consisted of the following:
- Learning about Mom’s health conditions
- Documenting important medical information
- Transporting Mom to medical appointments and other community venues
- Taking over laundry, grocery shopping, and housekeeping duties
- Advocating at appointments and other places
- Encouraging Mom when she seems a little down
- Assisting Mom with banking
- Shopping online and in-store for Mom’s clothing, etc.
- Observing changes in Mom’s abilities and appearance
- Explaining Mom’s condition to various loved ones
- Recording Mom’s vitals every day
- Routine care and maintenance of IV infusion
- Ongoing communication with medical providers
I’ve entered my second year as a caregiver with a different outlook. The goal is to make my mother’s life the best I can for as long as we are together.
