Whether you are a survivor or caregiver to someone with a brain injury, it is sometimes quite difficult to find a confidant that you can feel comfortable talking with when it comes to issues such as the stresses, emotional trauma or everyday hardships that can be inflicted upon one’s life. An individual can run the risk of losing friends, or in some cases, even family members.
Today as I write this I want to scream, “Yes! You can have a merry Christmas after a family member’s brain injury!” I want to shout it out from the mountain tops and let everyone know.
But today, after all, is a good day for me.
Now ask me on one of my many not so good days, and it might only be a whisper of a yes, but it would still be a yes!
This will be our fourth Christmas after my son, Chris’, brain injury, and this year we are stepping away from our holiday traditions and going on vacation as a family.
I would like to say we all wanted to ‘skip’ Christmas and go away this year, but it was my idea. After all, I am the one who does all the preparation for it and I did not want to spend my limited time, energy and money on gifts and decorations.
I wanted more time to rest and enjoy my family. We will still participate in the real meaning of Christmas while we’re away, but we are saying goodbye to the materialistic, unnecessary work and clutter that comes with the holidays. So basically, this is just another idea I had to avoid caregiver burnout!
Christmas year two and three post brain injury were very different. For one, we stayed at home, and we were not ready to host a dinner like we normally do. Lucky, our families took us in.
One of the big ways my son’s brain injury has affected the holidays is that it takes attention away from our daughters. The focus is always on the person with the brain injury, holidays or not. My son is now over the age for getting gifts in my family, but he still gets them, and the siblings take note. I hope noticing this has developed empathy in them and and not jealousy, envy or, worse, anger.
Of course my son’s brain injury slows the family down. It takes longer to do anything, and sometimes once you get there, Chris wants to leave because the noise and chaos are too much.
The extreme fatigue from the brain injury no longer lets us swing by more than one event in a day. And preparation is mandatory, because with the brain injury, there is no room for flexibility.
My son hates change and gets frustrated with anything different from what he’s been told about in advance. We never surprise him with last minute changes and plan nothing else on a day of a big event. Easy and simple, right?
But writing this really reminds me of our first Christmas together post brain injury. Let me give you a little background of where we were. Our son had been catastrophically injured in a car accident on Aug 20, 2011. It was a miracle that he survived, and then was able to walk with a walker at seven weeks.
At about three and a half months, he was able to start eating on his own, and get off the feeding tube. At four months he was coming home. It was planned for Dec 21, 2011. According to my son Chris, that was his best Christmas present ever – to come home to his family.
Now I, on the other hand, was doing everything I could to keep him in over the holidays. Why might you ask?
Well first, it meant I was now responsible for him. I did not feel ready to take this on at all. Was I a nurse, a doctor or a feeding expert? No! I was none of the above, but I was in charge of him. Everything shuts down over the holidays, there’s minimal staff at support agencies and doctors’ offices are closed. I was terrified to become my son’s full time nurse, taxi driver, rehab worker, you-name-it worker.
Did I mention I was scared? I did not know how to care for a brain injury. What if something happened? I was not even thinking of Christmas, only of my fear and lack of ability.
What could we do but grin and bear it? We had to rush to get prescriptions ordered now that we were in charge and before the doctor’s office shut down for the holidays. We rushed to get a tree and decorate it, and find room for it, as the living room now housed his hospital bed and the dinning room table was his rehab/nursing station.
I can assure you there was not a turkey served in our house that year, and there were no parties or socials. Luckily, our extended family prepared a holiday dinner.
That Christmas was all about quiet visits from close friends at Chris’ bedside, and us. It was the best Christmas I could have imagined. After all, we had our son home.
Turns out Chris was right, and I was wrong. I got caught up in the all the work and fear. I forgot what the real message of Christmas means to me – God’s love sent through a small helpless baby named Jesus. Helpless and weak, that was our son too. And God showed us His compassion through Jesus for us.
Compassion and love for our son, that was all we had that year, especially. Wow, we had our son home for Christmas. There is no better gift. I thank and praise God everyday.
So yes, there is a Merry Christmas after a brain injury.
Barb Kustec is the mother of three – Christopher, age 23; Cassandra, age 15 and Samantha, age 12. She is married to her husband, Danny. This is her third article for Brain Injury Blog TORONTO.
Recently I’ve had a chance to visit England and walked through the doors of Headway Essex. Headway is a large organization which provides brain injury care and support throughout the U.K. I came in contact with Headway East London through discovering their art studio website. I discovered Headway Essex through Dr. Carolyn Lemsky, Clinical Director at CHIRS introduced me to Steve Shears, Trainer and Psychotherapist at Headway Essex. Steve kindly showed me the agency and I had a chance to visit and meet the people at Headway.
During my day visit, I had the opportunity to visit BounceAbility – Special Needs Trampoline Centre. Watching people of all physical abilities getting out of their wheelchairs and working on balance, coordination and stretching. There was also added “stealth benefits” (according to Andy Plowright, Service Manager) such as allowing another person to help you with your balance and relying on another person to support you on a moving surface can build trust and re-establish physical and emotional connections with another person. This supportive and trusting relationship is especially important for a person who have experienced physical trauma that have resulted in the head injury.
Visiting the day program and meeting people at Headway was heartwarming. One person showed me his ankle foot orthosis (AFO) brace that is very well made and seems to be protective of sensitive skin areas in the lower extremities. The brace was red and the owner of this brace is proud to be a Manchester United Fan; in Toronto, our AFO brace are uniformly white.
I had a chance to talk about my meditation and art program which hopefully generated some interest in developing meditation and art programming for people at Headway. When it was time to part, I was given several information guides, newsletter and a large Headway t-Shirt. Andy Plowright, Service Manager at Headway Essex was apologetic that the t-shirt would not fit me but generous in his giving spirit and gesture of appreciation.
When I came back to Toronto, I wanted to do something special and carry on the momentum of giving. I was speaking with my colleague Amanda Muise, Behavioural Therapist about my excitement and ideas. I thought it would be cool for CHIRS and Headway to connect and a T-shirt could be a good catalyst. We talked about who could wear this T-shirt and she suggested Mr. Rob Ashe.
When I told Rob about my idea and showed him the picture, newsletter and T-shirt, he was very excited about the idea. He eagerly put the Tshirt safely away in his backpack. When I saw Rob two days later, he had taken pictures of himself around the city with the help of his friend, James.
Rob and I know each other through his participation in Mindful Art Workshop – Winter 2014. During the workshop, Rob learnt to meditate and try to do an art activity that was new to him. He made new friends whom he tries to keep in touch with. Rob was able to complete his art activity quickly and was ready to move on to the next task.
So sitting still and waiting and listening was new to him. He is very articulate and easily shares his stories, successes and difficulties but this ability to articulate could overshadow others who had a harder time sharing their voices. As the workshop progressed, Rob learnt to sit back and listen. To reflect quietly, then use his articulate voice to deeply appreciate other people’s talents and gifts. He talked more about others and less about his stories and came to appreciate this new way of being. Below is a sample of his art work. He called this piece – Anointed.
After taking a series of photographs, Rob and I sat down and I helped to upload the photographs from his phone. During the summer months in Toronto, there are several festivals and celebrations.
Below are the places that Rob visited with his friends from CHIRS:
When I arrived at work on Monday morning, I found a treasure inside my mailbox. When Rob and I were sharing stories and photographs, he had tears in his eyes. Rob loves to connect with people and especially people of all abilities. He told me, “You couldn’t have asked for a more perfect person to do this task.”
Rob understands that people with a brain injury may not have the same physical abilities as they did prior to the injury. Through his travels he wanted to share with people the places and events that he has access to and hopefully through these images, all persons may have access to these places and events.
Hi!! My name is Rob Ashe and I am a client at CHIRS (Community Head Injury Resource Services) in Toronto. When I was asked to have pictures wearing your group shirt, I took on the task because I feel strongly that groups wherever and whoever need to make contact and then we have a better understanding of each other and That is Great!!!!
I want to thank you for this opportunity and let you know that I believe that having a brain injury should not hold us back as we have much to say, much to experience and above all, much TO GIVE
I can’t begin to tell you how much this has touched my heart. Sometimes the work that we do can feel like work and there are good days and challenging days. Some days are full of beautiful moments and some days are problem solving days. My motivation for doing this work is to help others, whoever comes to my door. Knowing that we can touch each other’s lives and share in meaningful moments is a good reminder for me of the goodness inside each person that I’ve met. I am sure many therapists, helpers, teachers out there will share in my experience that the work that we do is relational and it takes two to form a relationship. The support and encouragement I give to the clients that have come into my life are reciprocated in so many ways that surprises me when I need it the most. It is these moments that helps me to remember what is important to me. To help others knowing that we all have an important part in each others lives.
NOTE TO HEADWAY ESSEX FROM BIST:
We’re sending you a t-shirt from our areyouaware.ca campaign – and can’t wait to see where it goes!
Amee Le is a Occupational Therapist (OT), meditation teacher, and art therapist practicing in the city of Toronto. She developed Mindful Art Workshop based on helping people with a brain injury through periods of high stress and anxiety.
This is us last summer, when our family decided to drive to Canada’s East Coast provinces and take a real family vacation.
Our vacation began when headed out late one afternoon in our rented, and very comfortable, RV. Leaving late was our first mistake. Our plan was to get to the Maritimes fast (we wanted to get through Quebec before stopping for the night). That was our second mistake. Then we realized we had forgotten the sleeping pills and other brain injury-related medicine for my son at home. That was our third mistake – a big one.
We learned that to survive on our vacation, we must be better organized. We had to call ahead for hotels, and eat before hitting the road. We needed to get into the habit of allowing for extra time, for everything and anything that could come up. Getting up in the mornings takes longer for the person with the ABI, and changes in environment and routine are harder for them to deal with. Once we slowed down and got organized, the trip went much better.
As soon as we reached the East Coast, it was smooth sailing. The slower, calmer pace was perfect for our family. The landscape is beautiful, and our family relaxed and began to have a great time together.
We went whale watching, swimming, walked on the ocean floor, did Peggy’s Cove and visited Anne of Green Gables. We took lots of pictures, and it was amazing to see our son take everything in. It was wonderful to see all of us, my husband and two daugthers, relax.
I totally recommend vacation for families who are living with brain injury – especially ones where you’re trapped together in a comfortable RV. The bonding and closeness are moments that will last a lifetime. There were periods of chaos, do not get me wrong, but even those add to the story of us. (And, after the fact, they are funny to remember – like when my husband didn’t take the time to learn where the gas tank was, and had to figure it out when the RV was almost running on empty. After about an hour, the gas tank was found by a carload of young men who Googled it, and it turns out it was inside the driver’s door. My prayers were answered once again!)
Did the brain injury change our vacation? Absolutely. However, the rewards were greater than the challenges. Thank God we still have our son and brother. Who could ask for more than that?
Barb Kustec is the mother of three – Christopher, age 23; Cassandra, age 15 and Samantha, age 12. She is married to her husband, Danny. This is her second article for Brain Injury Blog TO.
A few months ago, my husband and I were invited to our youngest daughter’s high school for an academic award ceremony. As I sat with about 200 other family members waiting for our kids’ names to be called, I thought about how lucky she, and the other students, were that so many parents and family members could be present for this special occasion.
I also thought, what would happen if I couldn’t have been there to support her? Would her life have been significantly affected if I hadn’t had the luxury of being able to reschedule my work day to be there? Of course not.
But what happens to people who suffer traumas who do not have a support system? Who advocates for them when they cannot advocate for themselves? Who helps them navigate through the complexities of the medical, legal and insurance systems? Who sits by their bedside, and cares for them during the early days of recovery? Who holds them when they cry and cheers them on when they succeed?
The support system plays such a significant role in the recovery and therapy process, and can also significantly affect the outcome. The process of recovery from a serious trauma or injury is difficult enough without having to go through it alone. How does someone who cannot communicate make their wishes known? How does someone who needs care or supervision rely on strangers to provide this care? To have familial support can be the difference between someone finding the strength and motivation to cope and carry on versus giving up.
The family plays such a crucial role in the rehabilitation and recovery process that some would say that it is one of the most critical factors in determining outcome.
I’ve had two very similiar cases recently, men with significant brain trauma which had rendered them in prolonged coma (approximately four months). One client has a mother who was at his bedside 12-15 hours per day. She talked to him, changed his diapers and generally cared for him. The other client has no family in the Toronto area.
Upon wakening, both clients were non-verbal and non-weight-bearing. They both had tracheostomy and were fed through a G-tube.
Today, the client whose mother was with him all day is living with her. He is weight-bearing, verbal and despite some swallowing issues, he is able to eat and is engaged in a full multidisciplinary rehabilitation program. He also volunteers and attends a gym, but will always require access to 24-hour care. The other client is in a semi vegetative state. He is non-verbal, does not voluntarily move, does not consistently respond to cues, continues to have a tracheostomy and is fed through a G-tube.
Did the presence of family make the difference in these two cases? The hospital staff of the client who had his mother at the hospital stated that they believe the client’s outcome was a direct reflection of his mother’s daily presence – caring for him, nurturing him, talking to him and being available throughout his hospital admissions and post discharge.
What will the outcome be for my other client? Who comes to visit him daily? Who talks to him, who cares for him? Where will he live should his cognitive status improve? How motivated will he be to recover or engage in rehabilitation without someone supporting him? I fear that this client may remain in hospital indefinitely.
Jodi Harendorf has been working as a case manager in the field of rehabilitation in the private auto sector for the past 29 years. She is the owner and manager of Catastrophic Injury Management, Inc. and has developed partnerships with many service providers / lawyers / insurers also working in the private auto sector. Jodi is also a Canadian Certified Life Care Planner.
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.
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.
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.
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.