As a former caregiver for my late son with cerebral palsy, I have learned a few things about cerebral palsy caregiver duties . Like what time to wake up so I did not run late to his therapies or that I needed to pack LOTS of essentials when we went on outings. But most importantly, I learned how to laugh at the little things and find joy in every moment.
Even when I felt like I was constantly juggling chaos, there was always something funny (or at least interesting) happening in our lives. So if you’re reading this and feeling overwhelmed as a caregiver parent, or if you’re considering becoming a cerebral palsy caregiver, or are simply curious about what the job entails, read on.
I’ll share some of the things I’ve learned in my years of personal experience.
How do you care for someone with severe cerebral palsy?
As I mentioned above, I know that it takes a lot of patience, love, and understanding when parenting someone with severe cerebral palsy. One of the most important things is to be there for them when they need you.
They may not be able to communicate what they need verbally, but they will often let you know through their body language and facial expressions. It is also important to help them stay as active as possible. This can mean anything from helping them with range-of-motion exercises to taking them for walks in the park.
Keeping their muscles strong and flexible will help to prevent joint pain and contractures. Through all of this, I personally, had to learn how to provide my son with medical care and physical therapy that he needed.
I had to stay positive and keep fighting for my son even when I was dead on my feet. I refused to give up on him, no matter what obstacles we faced. Caring for someone with severe cerebral palsy is not easy, but it was worth it for that pure beautiful smile I received at the end of every day.
What is considered severe CP?
There are many different types of special needs and cerebral palsy is one of them. Severe cerebral palsy (CP) is the most debilitating form of the disorder, and is characterized by involuntary muscle contractions that make it impossible to control movement [1].
The contractions can be so severe that they cause the joints to lock, making it impossible to straighten the arms or legs. In some cases, the contractions are so strong that they result in a deformity known as scoliosis, in which the spine curves to one side.
Severe CP can also cause dysphagia, a condition that makes it difficult to swallow. As a result, people with severe CP may require a feeding tube. In addition, severe CP can lead to seizures, chest infections and gastric reflux.
There is no cure for CP, but early intervention and therapy can help improve function and quality of life [2].
How to calm a child with cerebral palsy
As a parent of a child with cerebral palsy, I know that tantrums and meltdowns were a part of life. Though they can be frustrating and exhausting, there are ways to help calm a child with cerebral palsy.
First, it’s important to try to understand what may be triggering the behavior. Is your child tired, hungry, or in pain? Once you’ve determined the cause, you can take steps to address it. For example, if your child is tired, try playing music; this worked wonders for my son, he just LOVED music.
Use music to create a calm environment where they can relax or take a nap. Maybe they’re hungry? My son had scheduled feeding times as he fed through a feeding tube so these melt downs were usually expected.
Is there pain? Try to always stick to medication as prescribed by their doctor and give it like clockwork. In addition, there are certain techniques that can help to soothe and calm a child with cerebral palsy. Gentle rocking (I used to sing or hum while I did this) or a massage (with lavender scent) can be calming, and distraction can help to refocus their frustrations.
Finally, remember that it’s important to stay calm yourself. Children with cerebral palsy are very perceptive, and they can sense when their caregivers are stressed. By remaining calm and patient (which is hard, I know), you can help your child to do the same.
As a special needs mom and caregiver it was often hard to become one with the universe. Trust me.
What is the life expectancy of someone with severe cerebral palsy?
My son had severe cerebral palsy (as mentioned). He was confined to a wheelchair, unable to talk and he required around-the-clock care. My husband and I were told that he would likely not live to see his second birthday.
But our son defied the odds, and we were able to spend 16 wonderful years with him. We were constantly amazed by his courage and determination. However, my son passed away on the 11th of March 2020. Jaden’s (my son) death was devastating, but I am grateful for the time we had together.
Although his life was shorter than we ever could have hoped for, he enriched our lives in ways that we could never have imagined. While the life expectancy for someone with cerebral palsy can vary depending on the severity of the condition, most people with severe cerebral palsy do not live past the age of 20 [3].
Cerebral palsy caregiver duties
I was my son’s primary caregiver for his entire life – all 16 years of it. I became a cerebral palsy caregiver when he was born, and I remained in that role until he passed away. I know firsthand the duties and responsibilities that come with being a caregiver. I also know the rewards that come from providing care and support to someone you love.
As a caregiver, my duties included changing his diapers, I rocked him to sleep, I fed him, I bathed him. I did everything I could to make sure he was happy and healthy. Everything from providing physical therapy and managing his medications.
I provided assistance with mobility aka handling his wheelchair and standing frame. I also advocated for him, both inside and outside the home. I went to every doctor’s appointment, I researched treatments and I fought for the best possible care for my son.
We were determined to give my son the best life possible. And we did. We made sure he had the best possible ‘education’ and we had access to good medical care.
I had to daily, monitor his health and well-being, as cerebral palsy can lead to other health problems such as respiratory issues, problems with digestion and seizures. I was his voice when he couldn’t speak for himself. I am so grateful that I was able to be there for him – every step of the way.
Wrapping up: Cerebral palsy caregiver duties
Being a cerebral palsy caregiver wasn’t a walk in the park. It required a lot of sacrifices, of time, patience and a lot of energy. However, you get to see the person you are caring for grow, learn and develop. The relationships you form with them will be unlike any other.
So if you are thinking about becoming a cerebral palsy caregiver, go for it!
Just be prepared for some long days (and nights!).
Good luck 🙂
Charlie
Charlene is a published author/writer who has embarked on a personal journey, with the hope of providing guidance, support and advice to all who may need it.
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