Caring for My Mom Has Taught Me to Care for Myself, Too

Patient Expert
Terry Byrne

I have been taking care of my 89-year-old mother, who has advanced dementia and is on a feeding tube, for more than nine years. Some days go by and there are no problems at all. And I really enjoy those days. But other days can be difficult.

This was one of those days. I took our cat, Lucky, to the vet because I was concerned about his health. The vet gave me three possible diagnoses, which were all worrisome. Upon returning home, I discovered that Mom's feeding tube had come out again and had leaked all over her, the bed, and the bedding.

This was no easy fix. I knew it would take 45 minutes to an hour to clean her up, sanitize the special air mattress, change the bed sheets, her nightgown, make her comfortable, and then sanitize and reinsert or change the feeding tube in her stomach.

I reinserted a backup feeding tube that I had on hand for emergencies. (Fortunately, I learned how to do this with the help of her homecare doctor a few years ago. It is not something that most doctors recommend, but I am confident that I’m doing it correctly, and I always ask the doctor to check my work during his next home visit.)

After Mom was all cleaned up, I noticed a disturbing new stage two bed sore had emerged on her bottom. Mom has been free of any painful bed sores for the past three years, thanks to thorough caregiving and a state-of-the-art recirculating air pressurized mattress bed.

After inspecting the mattress, I realized that it seemed to have lower pressure and might have a leak. That could be the cause of this bed sore. I called the service technician at the mattress/bed vendor and scheduled a service appointment. (He came the next day, and yes, as suspected, the bed had a leak. The company replaced it immediately.)

Praying for strength

During times like this I just go on autopilot and focus on what needs to be done. I pray for strength and stamina to get through each crisis. There is no question that my spirituality is my saving grace.

I often call a friend and vent my frustrations, asking for prayers and advice. Usually my friends will offer consolation, lower my anxiety, and offer sound guidance. This time I called one of my brothers and had a good heart-to-heart conversation about how he has dealt with loss and the stress that comes with it, and that helped a lot.

I also had a serious conversation with a childhood friend, who is a spiritual person and was a dedicated caregiver for her mother and several family members. Many times she has comforted me with relevant, timely advice.

This time was no different. She told me that her two cats were each diagnosed with hyperthyroid disease (one of the three possible diagnoses the vet gave me) when they were the same age as Lucky. She said her cats were treated with medication, got better, and lived to be 19 years old! This put my mind at ease.

After those conversations and the big cleanup, I adjusted Mom in bed, fixed her blanket, gave her a kiss, set my alarm, and took a much-needed nap to recharge with my buddy Lucky alongside me.

I awoke with Lucky at my feet and a renewed sense of hope. As Mom often told me, "Feed your faith and your doubts will starve."

Taking care of the caregiver

Later that day, after I finished giving Mom her bedtime meds, I tucked her in and kissed her good night. A familiar, fulfilling sense of accomplishment wrapped around me like a comforter. This is my life as a caregiver. Tomorrow, it starts all over again and a new journey begins.

I will make homemade chicken vegetable soup, and that too will be cathartic and fulfilling. It’s for a friend who’s sick, and it should help with her recovery. And it will be good for me, too, to get my mind off of the heavy things that can weigh me down. And, I actually enjoy making soup.

One thing I’ve found to be true over the years is that it’s very important for caregivers to make an effort every day to talk to family and friends and do things that we enjoy. We need to strike that balance; it’s essential for healthy caregiving. My wise Irish grandpa often recited a still-relevant Oliver Goldsmith line to me:

“While self-dependent power can time defy, As rocks resist the billows and the sky.”

He often said it was important to take care of yourself first so that you could take care of everyone else. That is how he said he and my grandma raised their six boys. It sure makes a lot of sense.

Being strong first so that you have the energy to help others is essential for any caregiver. Balance your life, get your rest, socialize, talk to friends, listen to music, take a walk, read a book, and vent your frustrations to family and friends. And always make time for yourself.

See more helpful articles:

3 Ways Caregivers Can Improve a Relationship

Questions to Ask an In-Home Care Agency

Caregiving Can Be a Mixed Blessing, Families Say

Dating Someone Whose Spouse Has Dementia