Don’t Let Caregiving Keep You From Living

As told to Open Caregiving and lightly edited to enhance readability while preserving the author’s voice.

Getting to know the caregiver

Hi, my name is Brandi. I’m a millennial woman living in Central Texas. My husband, Daniel, and I have five children who are the fourth generation on my husband’s small family farm. As a family we cared for my mother-in-law for 10 years until her death on February 20, 2020.

What did your life look like when you became a caregiver?

In early 2010, my mother-in-law had a stroke. Physically she had a complete recovery, but it didn’t take long for my father-in-law to realize that mentally she would never be the same. He decided to retire to the family farm where my soon-to-be husband was already living.

We got married in December 2010 and I became a part-time caregiver the same day I became a wife. When I became pregnant with our first child in 2011, I quit my job to stay home full time.

My father-in-law, husband, and I worked together to take care of my mother-in-law until 2014, when my father-in-law suddenly passed away from a heart attack.

He was in the hospital for three days before he died, and in that time he asked my husband and I to take care of my mother-in-law and do everything we could to keep her home. I was seven months pregnant with our second child when my father-in-law passed away.

Who did you care for and what prompted their need for care?

In early 2010, my mother-in-law had a stroke. Physically she made a complete recovery, but the stroke caused frontotemporal dementia affecting mostly her short-term memory, making it impossible for her to be left alone safely. She was later also diagnosed with Alzheimer’s disease that began to attack her historical memory as well.

When I first became my mother-in-law’s full-time caregiver, I was very optimistic about how things would go. She and I had a great relationship when my father-in-law held the role of primary caregiver. While she struggled some with the dementia brought on by her stroke, we could bond well over our common interests of history, old Hollywood, and literature.

When my father-in-law passed and I became her primary caregiver, our relationship changed rapidly. Now I was the one having to keep on top of the medications she hated to take. I had to control her diet because of her diabetes and weight issues. I was the one forcing her to wear incontinence briefs and shower at least weekly.

Our relationship was further soured by discord among my husband’s four siblings, who were suddenly really concerned about my mother-in-law’s meager income and how it was spent.

For two years we struggled to find some harmony in our family. Finally, we could hire an elder care attorney who helped us draft a family agreement to appease the siblings. I hired a Family Caregiving Specialist to help me develop a plan that would help my mother-in-law stay as independent as possible, but also keep my own sanity.

At the time of her death, my mother-in-law depended on me completely. Our relationship was sweet and loving, and I treasure the time we had together.

What was a memorable learning?

One thing I wish I had done from the very beginning was to educate myself better on her dementia and what it really meant. I kept trying to find the magic words to make her understand, or the secret to helping her think better for herself and regain some independence she fought me so hard for.

Had I understood her disease with more clarity, I would not have wasted the years trying to make life better by reasoning with a mind no longer capable of reasonable thought. After the first two years, I learned just how vital education is to a caregiver.

What surprised you about caregiving?

Caregiving becomes so much a part of you. When my mother-in-law passed away I felt absolutely lost. I had been a caregiver for such a long time that I didn’t know how to not be a caregiver. I have struggled to discover how to be a wife, mother, and homemaker outside of being a caregiver. I knew I loved my mother-in-law, and caregiving took up a lot of my time and energy, but it surprised me how much being a caregiver became part of who I was.

How do you try to balance being a caregiver while caring for yourself?

As my kids grew in number and activities, I realized that I couldn’t give my mother-in-law the 24/7 care she needed and also take care of my other family. I hired a Certified Nursing Assistant (CNA) through a local service to come in several times a week.

This gave me a much-needed break and kept me from burning out quite as quickly.

I also made sure I took a few minutes to myself every day, even if it was just walking outside to get the mail and take a few deep breaths. I found new hobbies that didn’t require me to leave the house, like blogging and learning to cook (I’m a great cook now!).

What resource would you recommend to caregivers?

My greatest resource in my 10 years of caregiving was other caregivers. Caregiving requires a lot of trial and error. A lot of experimentation to determine what works for you and your loved one.

Some of my greatest success as a caregiver was learned from other caregivers and just adapted to my family. These caregivers also gave me a lot of peace in knowing that there isn’t a perfect caregiver out there. Caregivers are the people that keep stepping up every day, even when the day before held disappointment and failure. Seeing other caregivers experiencing the same emotions and similar struggles and challenges gave me a lot of hope.

What advice would you give to caregivers?

Caregiving gets harder and harder every year that passes, but I can honestly say my best caregiving years were the last two when I finally felt like I had found my groove. The challenges increased, but my ability to adapt and conquer also grew. I credit this to five caregiving principles that I learned over time. Secrets to caregiving, if you will.

1. Preparation: When I was a caregiving alongside my father-in-law, I basically just followed his direction. I didn’t worry about my mother-in-law’s illnesses and conditions, I just carried her to her appointments and gave her medication when directed. I didn’t feel the need to know where important documents were kept because surely someone else knows, right? I didn’t think about preparing myself for the day I might be my mother-in-law’s primary caregiver because I was certain that day would never come.  So, when my father-in-law passed away so suddenly I was thrown into paperwork I didn’t understand, medication I couldn’t explain, doctors I didn’t know, and legalities I wasn’t aware were even necessary (like obtaining power of attorney).
2. Support:  Another thing I would tell myself as a new caregiver is find support and take advantage of it right away. There are a lot of great organizations out there (Department of Aging and Disability, Alzheimer’s Association, even local nursing homes and assisted living facilities) that provide information and programs that make being a caregiver so much easier.
3. Education: One of my greatest failures as a caregiver was not educating myself on the realities of my mother-in-law’s diagnosis right away. Had I understood her conditions, I would not have made some mistakes I made in the beginning and would have saved myself a lot of mental anguish.
4. Help: Accepting help does not make you an incompetent caregiver. I balked initially at hiring someone because I felt it was a sign of defeat, that I couldn’t hack it as a caregiver. It was the greatest thing I ever did, and I became a better caregiver because of it. My mother-in-law flourished because she had a companion outside of the family. A friend and confidant that made her feel more “normal.” It made our relationship so much better and kept me from burning out as much.
5. Confidence: Finally, I would tell myself to just be confident. You can’t be timid and unsure as a caregiver. Being confident doesn’t mean you dominate your loved one or believe you are never wrong. A confident caregiver is someone who is prepared, supported, educated, and accepting of help. They are someone who learns to adapt and just keeps moving forward despite disappointments and even defeat. Your confidence and “can do” attitude will do wonders in helping your loved one trust you and feel comfortable and safe while in your care.

Is there anything else you’d like to share?

Don’t let caregiving keep you from living. Your life may not look like you dreamed it would, but don’t let that stop you from dreaming new dreams. Keep educating yourself, find new hobbies, get scrappy and creative.

Where to find Brandi Blair

Brandi shares her caregiving experiences and advice on her blog A Bridge Between the Gap.