One mom’s perspective: caring for a son with a brain injury

BY: BARB KUSTEC

I have been the main caregiver of my son, who suffered a catastrophic brain injury in an accident four years ago.

The first thing that comes to mind about being the main caregiver for my son is the blessing of love, closeness, bonding and devotion that I’ve had the privilege of experiencing. There are no words to describe the many blessings granted me for that time with my son. It was as if he was a newborn all over again and I had a second chance with him.

He also remembers who was there for him at the hospital, day in and day out for four months, and it has shown him that family are truly the most important people in your life. What a gift that is.

Barb Kustec with her son
Barb Kustec with her son

The next thing that comes to mind is exhaustion, fear and anxiety. A brain injury has a very long recovery period, and may last a lifetime. So thinking about the future is not a fun experience for us. We worry who will look after him if we die. We worry if he will ever be able to hold down a job, find a wife or have children. Right now he is alone. Friends have disappeared.

His sisters are younger and not able to relate to him. All they know is he stole me from them. And they’re right, they did lose time with me. Feelings of guilt and sadness often surface in our family. But for me, the hardest thing has been exhaustion.

Caregiving demands are huge. It’s not just the care of the person with the brain injury, but dealing with insurance, lawyers and mounds of paperwork; all the time keeping the multiple doctors’ appointments, doctors’ recommendations, and implementing those recommendations; while managing the rest of your family and their needs. Such as bills. Such as school. Such as forms for school. Homework. Meals. Housework. Fun.

Obviously no one person can do all this, but you try to keep all the balls in the air, and before you know it, one drops. Maybe two. The first for me was cooking. We relied on fast foods. The second was housekeeping. The third was fun, followed by school and homework.

dirty laundry
photo credit: DSC_0611 via photopin (license)

Jump ahead to now, almost four years later. I am so glad I made the sacrifice. I have my son, and he has made a miraculous recovery. We still have a way to go, but it has really been a miracle. I would do it all over again. Of course my Faith was what helped sustain me and the prayers of many across the world.

I tired, exhausted and worn out. But I have learned to reward myself with a weekly hair wash and blow dry from my hair stylist. Every couple of months I treat myself to pedicures or manicures. I now have services in place to help in our weakest areas of need in the home, such as housekeeping and meals, and have set up tutoring for our girls. But the best thing we did for all of us was vacations and or outings. My sister took the girls to her cottage for the first two weeks. Six months into it, I took the girls to Walt Disney World and we are going back again this year. My husband also got away with the girls to Great Wolf Lodge and Ottawa. And this summer we all went to the east coast together.

All of this takes takes time and money. The burden of being a caregiver of a catastrophic brain injury survivor is about balancing short and long term needs. Brain injury rehab is costly, in terms of time and money, but you can’t put a price on family or individual health, so you do what you have to do for survival and pray it will all work out for the best.Your life will no longer be the same. It is forever changed, but we have tried very hard to see the good in all that has come about from the bad of the accident.

pedicure
photo credit: My Toes via photopin (license)

Would I want to do this again? No. But if the situation arose, I would humbly jump in all over again and pray for the best!

Barb Kustec is the mother three. Her son’s accident was on Aug 20, 2011. They have been members of BIST for the past three years.

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