TBI Support

What an amazing day yesterday – participating in a Brain Injury Conference is such a humbling experience for me.  Yesterday was no different, and I am so grateful that I got to be part of that conference.

When I was looking at the speaker list for the day, the Keynote speakers name looked familiar to me.  When I did a little searching, I realized that I had met with Doctor Karol at another conference where I was the Keynote speaker.  At that time he was working on a new speech that looked at the meaning and interaction of art and brain injury.  He wanted to see my tattoo – the one that I got after Frank’s crash – and asked if he could use it if he ever finally put together the presentation.  I of course said yes, and he took several pictures.  I had not seen him again since that day.

The conference was getting ready to start, and I went up to greet this gentleman before he began.  He didn’t know me at first until I mentioned my tattoo, and then he laughed and of course remembered!  We chatted and he told me that I would have had a nice surprise today – his presentation was on how art can heal and be part of brain injury recovery for those with the injury and those with family members, and my tattoo was part of his presentation.

It made me smile to remember that moment when I made the decision to get that tattoo – Frank’s partner Joey and I had already had a few conversations about tattoos, and Joey knew that Frank did not want me to get another one.  He even told Frank (while he was still in a coma) that he had his back and no way would he let me get another one.

Ha – well that didn’t work out so well did it?

I remember sitting in the chair, prepping my foot to put on the large blue rose, and the words “una stamus.”  I remember thinking how important it was for me to permanently state my feelings of thankfulness and honor while being part of the law enforcement family – it was important to me as part of the journey, and I chose to make that statement with a tattoo.

The presentation was amazing and thought provoking – it made me appreciate even more the power of art and healing, and how simple things that we do can make a huge difference.

My presentation was after lunch, and I had a full audience.  It felt good talking to individuals that work with clients and families living along the brain injury pathway, and as always, there were some amazing questions at the end of the session.  What I love the most are the people that come up to me afterwards that tell me their story – how they are at month 12 living after their husbands injury, or they themselves are 15 years living with their own TBI.  Each story is very important to me, and I am always grateful that people come to share with me their own struggles and life; it is a family of survivors, and we all need to stick together.

It was a day filled with energy of healing for me – spending the day with an amazing lady that I get to call my friend, and presenting at a conference filled with amazing people is a really good way to spend a day.

I am thankful I was given that opportunity – I went home and hugged Frank, and told him I am proud of him.

He laughed, and said “whatever.”

Always his typical response.

Una Stamus my friends.

Caregiver crash

Those two words define the last four weeks for me – and although it was a gradual process, now that I am on the other side, I am very aware of the consequences of allowing myself to get to the point of no return.

Caregivers are heroes – many people do not realize that when a family member or friend becomes a full time caregiver, they are essentially giving up a portion of their life, of who they are, to care for another.  Many times, this was not a choice – this new role – but a role handed to them by the circumstances of a life event.  Aging parents, injuries, accidents, and major medical events can all lead to a significant life change not just for the person that is dealing with the life change, but for those around them as well.

Caregivers often become completely wrapped up in the world of giving care.  What may seem like small daily tasks can quickly overtake all other daily activities, even things like watching TV or getting a haircut move to the back burner.

When a caregiver is wrapped up in another person’s life needs, their own world loses focus, becomes faint, less important.  It is easy to lean in and worry about another; those that are caregivers give without thought to the losses of their own.  But by doing that, it is easy to lose perspective of one’s own personal needs.

Those needs, things like regular meals, naps, stress relief and self care, become a thing of the past.  The things that once were part of regular daily needs become special, only needed now and then, and the one giving care begins to break down.  And as I can truly attest, when the caregiver is no longer able to be the support system, there is no system.

My own personal burn out happened just this past week.  I have been sick for a few weeks, but I am part of the belief that I can do it all, and that things will be fine.  I have always gotten over my illness in the past; there is no reason for anything to be different this time.

But this time was different.  This time, after being a caregiver for 15 months, I am depleted.  I am tired.  I am not giving myself breaks, or good nutrition, or positive self care moments.

This time, I am tired.  I am sad.  I am emotionally drained.  I am not nutritionally well supported.  And I am not giving myself time to do things for myself.

So this time, it’s different.

This time, I ended up at the doctor, in bed for four days, unable to be the caregiver to my family, the support that my husband needs, the mother for my children.

I failed them.  I failed myself.

And I know better.

Part of my education to others living with a family member that needs help, especially when dealing with brain injuries, is that we have to give time to ourselves.  When we do not do that, life begins to take pieces away from us.  When enough pieces are pulled away, we can no longer support others, let alone ourselves.

I know this lesson.  I teach this lesson.  And yet, when it came down to it, I did not listen to my own lesson.

It is an easy place to get to; the denial, the “I can do it all” attitude.   But none of us are invincible.  We all need to be supportive of one another.  And the first person we need to support is ourselves.  I know that this goes against our nature – thinking of one’s self first is not the nature of a caregiver – but when we don’t support our own self first, we fail, and the entire system that we are supporting crumbles.

I am lucky that not much damaged occurred when I crumbled.  There were enough people surrounding us that I was able to recover soon, and we were able to get through that time.  But not everyone is that fortunate; not everyone has people available for immediate takeover of care giving if something happens to the one leading the pack.  That is a plan that should be in place for all families, not just those living within the world of care giving.

It will continue to be a skill I need to develop – the skill of taking care of myself first.  It is not in my nature.  I bet that it is not in your nature either.

But we are important to the ones that we love.  They need us here.  We need to be at our best.  And only we can give to us what we need.

Website issues last night - hopefully the link to this post stays valid!

I want to make two announcements today for important events coming up in May.

The first is an open discussion forum being held in St. Paul on May 14th.  This event will have two hosts – me and Dr. Janell Matz.  The topics will include concussions/brain injuries, caregiver support and fatigue, and different options available during the recovery process.

Martin Luther King Community Center – 270 North Kent Street, St. Paul, MN – May 14th, 6:00 – 7:30pm

The second announcement is regarding National Police Week - May 12 through 18th.

Starting the evening of May 14th, officers will be at the law enforcement memorial standing vigil for 24 hours.  At 7:00 pm on May 15th, there will be a candlelight vigil honoring those officers that have lost their lives in the line of duty.  I would like to encourage you and your family to attend this emotional and memorable event.  With the events of the last few weeks across the country involving so many law enforcement agencies, I know that our support would mean so much to those that give to their profession 24/7 here in Minnesota.

I hope to finally get to meet so many of you that have supported us on our journey.  There will be more public discussion events throughout the year, and I look forward to being out more in the public to meet those of you that have done so much for us.