A Mother’s Love – 24/7

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Evelyn and Nikki’s Story

My daughter Nikki was born prematurely. Then she contracted bacterial meningitis. That was 31 years ago. Today, Nikki is confined to her bed—she relies on a ventilator and pacemaker to stay alive.

But when she was younger, we used to get out of the house more often. I remember taking her to the beauty salon. She loved getting manicures and pedicures. She used to enjoy camping and swimming too.

When my husband was alive, we would take her to social functions along with my oldest daughter. When Nikki was 7, I took her to the Philippines to visit family. I enjoyed those days very much—and so did she.

But Nikki’s health eventually declined over the years. That meant fewer social outings and more intense caregiving. Today, I provide most of Nikki’s care—though I have some outside nurses who help. But it’s mostly up to me to take care of Nikki’s daily needs.

Some people are surprised about the sheer amount of time it takes to care for someone who’s bedbound. Our daily routine includes—bathing and washing Nikki’s hair—brushing her teeth and changing her diapers and bed linens. But I also feed Nikki through her feeding tube and make sure her medical equipment is working properly.

To keep Nikki’s mouth fresh, I brush her teeth and mouth twice daily. Because she cannot spit, I remove the oral solution from her mouth with the Single Suction System, an oral suction device made by Sage Products. It’s easy to use—I just hook it up to my daughter’s suction machine.

Nikki had a tracheotomy in 1999, so I also give her neck treatments; massaging her neck everyday prevents excess phlegm in her throat and chest. By caring for Nikki, I give my daughter a better quality of life.

At night, I sleep lightly. I wake up several times during the night to check on Nikki’s ventilator. If I hear the alarm, I race into her room to check her breathing. I don’t think much of it—I just fix it and go back to sleep.

I spend about 8 to 18 hours a day caring for my daughter. I don’t think of caregiving as a burden. I am dedicated to Nikki and have been since the day she was born. I’m her mother—I love her—and that’s what I do.

Some people might ask – how do I manage all the work? I’m 74 years old. I lost my husband about 10 years ago. But my brother and his wife help out and I also rely on good friends. All I can tell you is this: I love my daughter. It’s really not that much work. I enjoy her company and I wouldn’t do things any other way. It’s just a lifestyle choice.

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