As a home care aide for her 35-year-old grandson Paul, Nancy Cook has mastered the art of providing specialized, compassionate care. (Pictured above, Nancy Cook and her grandson, Paul, in their home in Blaine, WA. Photo by Sara McCaslin)
Thirty years ago, she had just started running her own restaurant in Vancouver, Canada, when she got a frantic call from her daughter, Sandra. She was experiencing severe abuse from her husband and also having problems stemming from her Type 1 Brittle Diabetes.
Nancy had to make a quick decision.
Nancy left her restaurant and flew to Texas to care for Sandra and Paul. Not long after, Nancy’s daughter passed away. Her grief was so profound, she says that without Paul she might not have survived.
Paul’s care needs started immediately when he was born six months early. He was pronounced dead at birth and was left in an open incubator for several hours. After an orderly saw his chest move, he was rushed to the neonatal hospital where he remained for five months until his weight reached four pounds.
Paul was diagnosed with severe cerebral palsy, seizure disorder with profound muscle disorder and problems with digestion that required nine hours of surgery. He was given a life expectancy of six to seven years.
Paul will be 36 in January, living almost 30 years longer than doctors expected. Nancy and Paul’s story is one of how love and thoughtful care can extend a life.
Q: What kind of care do you provide Paul?
A: I do everything for Paul. He cannot talk, so I anticipate his needs and keep him on a schedule. He cannot walk or sit up on his own. His legs do not bend, nor can he feed or dress himself.
He has a wheelchair and a hospital bed and has to be transferred several times a day. Paul has had many surgeries in his life and even has to be in the hospital for his teeth cleanings where they sedate him.
Paul in his bedroom. Paul enjoys a darkened room while sleeping. (Photo by Sara McCaslin)
Q: Does Paul have any challenging behaviors?
A: Paul is happy and funny, laughing most of the time. Even when he’s not feeling well, he doesn’t complain very much. He does, at times, get very angry and has temper tantrums when he is not understood. He is extremely strong, so if I get too close during these episodes, he can hurt me. When he calms down he will usually end up sobbing. That is when I can give him a hug and comfort him during these extremely difficult times.
Q: Have you ever gotten hurt taking care of Paul?
A: Paul does not understand his own strength and he really does not try to hurt anyone. Once I was behind him and trying to keep him from jumping out of his chair during a tantrum. His head flew back and hit me in the nose, knocking me out and giving me a bloody nose.
He was watching me cook one day and eager to have his oatmeal. He grabbed my wrist and flung me over his wheelchair. My shoulder broke when I landed on the other side of him.
Q: Do those injuries limit your ability to care for Paul?
A: Until then I was still able to lift him from chair to bed or floor or the bath. I cannot do that anymore.
But you do what you have to when caring for a loved one and I devised a way of transferring using a pair of jogging pants. But it only works at his own home.
I cannot bathe him anymore and rely on friends to come over once in a while to help get him into the tub. Usually, we use sponge bathing.
Q: What things does Paul love to do?
A: He loves to eat! After he was on a feeding tube many years ago, I began feeding him oatmeal and puddings. We gradually added other foods until one day he had no problem with digestion and eventually, the feeding tube was removed. His favorite foods include fried oysters and baked chicken.
He loves getting into the water, the sound of chimes, balloons and his favorite rattles. He holds his rattles 24/7, night and day.
Paul loves his family, having visitors and going for rides in his van. He absolutely loves being around little kiddos and is a greeter at the library a few times a month.
Q: What are some of the challenges you face as his caregiver?
A: You get used to living with next to nothing. There are lots of challenges facing caregivers of a multi-handicapped person. These include dealing with the courts, advocating the state for full-time paid hours and finding good respite help. There are the emotional challenges that are too many to list.
Haircutting, nail-cutting, shaving and bowel therapy are just a few of the manual efforts to give Paul a healthy life. He hates all of that and does not cooperate, which makes it difficult and very time-consuming to do a good job while not injuring him or myself.
The wheelchair is all that some see and assume that Paul understands nothing. Hidden inside this body that does not work like yours or mine is a very alert young man. He loves his life and faces most things with his infectious laugh and personality. So caring for him, albeit challenging, is well worth the effort.
Q: What advice do you have for others who care for someone like Paul?
A: You have to take care of yourself first and foremost. I like to read and paint, maybe knit. All of these things clear your mind. I like to build things around the house and garden. Most of all I love to be around family with Paul. I have seven grandchildren and now two great-grandchildren. Paul loves to spend time with them, too.
I have never regretted this decision to care for Paul full time. Paul gives back love as much or more than he is given. He loves this life that we have together. My prayer is that it continues for many more years.
How many people wake up every morning with a greeting of a cheer and a huge smile from someone who is happy to see you? That is Paul and this is my life.
