How we celebrate Christmas after my husband’s brain injury

BY: THERESA McCOLL

My husband, Norm, has lived in a long term care home since acquiring his brain injury six years ago. Each holiday, be it Easter, St. Patrick’s Day, Halloween or Christmas, the facility decorates the common areas, in attempt to give residents and their families a more festive experience.

The McColl at the Elliott Christmas dinner Saturday December 17, 2016

A post shared by Theresa McColl (@mccolltheresa) on

To be honest, since Norm’s accident, I really haven’t felt like celebrating the holidays. Norm and I don’t have kids so why bother? It seems as though I am just going through the motions.

Thankfully, Norm and I have good people around us. We get a crew together to decorate Norm’s room each year. His brother, sister-in-law and friends come to help. They help bring out the holiday spirit – which is hard, as Norm doesn’t show many emotions.

Remember to take time for yourself. Even a walk around the block to clear your head, or sitting down to breathe can work wonders. If you don't look after yourself who will?

As much as possible, we try to keep things the same as before the accident. Christmas Eve we go to our parish church for mass. On Christmas Day we go to Norm’s brother’s to open presents and see the rest of the family. In the afternoon, Norm and I head over to our friends to wish them a Merry Christmas.

Despite this, our trips are more complicated now and planning is essential. When Norm and I go anywhere, I have to book the mobility van that is at his long term care facility. If the van is booked, I have to phone the taxi company. I have to strap Norm in with seat belts for safety. When we go out for Christmas dinner, to a restaurant or to friends, I have to make sure that Norm has a pureed meal to eat.

Remember to take time for yourself. Even a walk around the block to clear your head, or sitting down to breathe can work wonders. If you don't look after yourself who will?

 

At the end of the day, I think having family and friends around is all Norms needs as when they are around, he just beams.


After her husband’s injury, Theresa went back to school to become a Personal Support Worker. She has taken courses in brain injury, and is now a full time caregiver. You can follow her on Instagram, HERE

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What we don’t like to think about, but need to prepare for

Do you ever think, what would you do if your spouse was in a serious accident?

20170304_200345
Theresa and Norm McColl at Theresa’s college graduation.

Who pays the bills? How are they paid? Do you have access to your spouse’s bank account?

And the big question: do you have a will and power of attorney (POA)? Do you know where they are?

If you answered ‘yes’ to these questions, I applaud you. You are prepared.

Regardless of our age, many of us think we’re too young to worry about the practical details of what would happen if we or our spouse were suddenly seriously injured or deceased. These are difficult topics to talk about, and we are like to think ‘it’ll never happen to me’. That’s what my husband, Norm, and I thought.

One day, we drove past a place that did wills and power of attorneys. Norm said, “We don’t need a will and power of attorney.”

But something in me felt differently, and I insisted we get them done.

I am so glad we did. A little while later, on Thursday, April 28, 2011 things changed for us forever when Norm was in a very serious car accident.

20170304_195518
This photo collage represents Norm’s passions before his injury. From top (R-L) logos from Guelph Storm Hockey, Kinsmen Club, Guelph Fire Department and Guelph Radio Station.

The pickup truck he was driving was T-Boned and ended up underneath a tracker trailer.

Norm was only able to mumble his name and where he worked before he lost consciousness. He was air lifted to Sunnybrook Hospital from where we live in Guelph. He had several broken bones, and we were soon to learn, a traumatic brain injury.

Until then, Norm lead a busy life. He worked at the firehall and had a radio show. He was, and continues to be, a Kinsmen.

Norm’s injury changed my world in countless ways, including the practical ones. Until then, he had been the bill payer and, in large part, the provider. In an instant, those duties became mine. I had no idea what to do, and I needed to find our POA.

All of our bank accounts and bills were under Norm’s name, and I needed the POA to gain access to them. Without the POA, who knows how long it would have taken before I could start to live and pay bills.

Norm and I at are 30th anniversary open house at the Elliott

A post shared by Theresa McColl (@mccolltheresa) on

I am very grateful Norm listened to me that day when we were out for a drive. I am glad that our wills and POA were in effect. If we had just said, “Oh, that’s just for old people,” and drove by, I would have been in a heck of a mess.

After hearing my story,  what are you waiting for? Are you prepared?

Please don’t wait, tomorrow, may be too late.


After her husband’s injury, Theresa went back to school to become a Personal Support Worker. She has taken courses in brain injury, and is now a full time caregiver. You can follow her on Instagram, HERE

Come with BIST to see Brain Storm: a Toronto Fringe play about brain injury, a psychic medium and Dr. Wilder Penfield

BY: MERI PERRA

If you’re of a certain age and lived in Canada, you likely remember this classic Heritage Minute featuring neurosurgeon Dr. Wilder Penfield:

Taliesin McEnaney remembers the commercial well. A theatre professional with over 16 years acting, writing, producing and directing experience, McEnaney’s family tree includes a spirit channeling grandmother, Claire Ward. One of the spirits Ward channelled was Dr. Penfield. (For the record, Ward’s relationship with the deceased Penfield began in 1980, well before the line ‘I smell burnt toast’ became Heritage Minute famous in 1991.)

Also, McEnaney has a family member who lives with brain injury.

“I was researching epilepsy and seizures and Dr. Wilder Penfield was coming up quite a bit,” McEnaney said. “I was remembering he was [one of] my granny’s spirit guides. So I asked my aunt for all her writings and there are like 200 pages of typed up transcripts.”

A still from the play Brain Storm, a woman in an old fashioned surgeon's uniform pulls off her gloves

After pouring through her grandmother’s notes, researching Dr. Penfield’s work and spending a year collaborating with four actors, McEnaney’s play, Brain Storm, about a woman trying to navigate through her new reality of living with brain injury, hit the Toronto Fringe Festival this week, and runs until July 15th.

(BIST Members can see Brain Storm for FREE on July 13th, and after join McEnaney to discuss the play. You must register in advance, HERE.)

“One of the ways [the main character, Kate] tries to [come to terms with her brain injury] is she turns to her grandmother, who is dead and had previously been a medium,” McEnaney said. “One of the messages she had channelled was from Dr. Wilder Penfield, and the message was that the mind goes on after death.”

Penfield’s work fascinates McEnaney because the neurosurgeon was able to change people’s reality – what they saw, smelled or heard – simply by placing electrodes on different parts of their brain. In Penfield’s book, The Mystery of the Mind: A Critical Study of Consciousness and the Human Brain Penfield theorizes that life after death is possible, if the mind can find a different source of energy. The brain, Penfield believes, is what fuels the mind.

From what McEnaney has experienced through her family member, this is similar to some of the effects of brain injury. A person’s injured brain may be unable to filter sounds and images, creating an intensity which is often overwhelming, leading to the question of what is reality and what is not.

“Without brain injury, we’re moving through the world not hearing so many things, not seeing so many things because the brain is filtering so we can focus,” McEnaney said. “When you are brain injured, everything is coming in at once and you’re becoming overstimulated because the reality is so intense. It’s like, ok whose reality is it?”

A woman in old fashioned surgeon's gear looks at the camera

For McEnaney, it’s not important whether her grandmother really channelled spirits. (Though Ward’s notes on Dr. Penfield mimic his writings, which Ward had never read before she began channelling him.) But what is important is that her play opens up a conversation in the brain injury community.

“Every brain injury is different, and so is the one that you see in the show, but I think there are some commonalities that people will recognize,” McEnaney said.

Register HERE to see Brain Storm on July 13th with BIST!

If you can’t come with BIST on July 13th, you can buy tickets for Brain Storm HERE.

 

BRAIN STORM is co-created and performed by Hayley Carr, Maïza Dubhé, Shayna Virginillo, and Alexandra Montagnese. Conceived of and directed by Taliesin McEnaney, set and costume designed by Will Bezek with lighting design by Claire Hill.

 Thanks to our Event Sponsor

bist-1.ca-Platinum-Sponsor

IMAGES COURTESY OF LUCID LUDIC

Notes from our ABI Caregiver Self Care and Communication Workshop

On February 11, 2017 BIST hosted a ABI caregiver workshop, facilitated by:

Stacy Levine of Journey Rehabilitation and Behaviour Therapy 
Carrie MacKinnon, BIST’s Peer Support Program Coordinator 

Click on the first slide on the left below for notes from our group discussion which concluded the workshop.

 

BIST members have access to our FREE workshops, programs and services.

To find out more about becoming a BIST member, click HERE.

Talking it out: ABI survivor and caregiver stress

BY: MARK KONING

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.

two friends talking
photo credit: Two girls talking via photopin (license)

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How to have a merry family Christmas after a brain injury

BY: BARB KUSTEC

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.

Barb's son Chris home for the Holidays after his brain injury
Barb’s son Chris home for the holidays four months after his brain injury

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.

The hospital bed in the living room
The hospital bed in the living room at Christmas

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?

suitcases packed for a vacation

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.

plane flying into the sunset

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.