Evelyn and Nikki’s
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.