So many friends in low places - and not in the low places like the Garth Brooks song.

Just low, feeling bad, struggling with the reality of what a brain injury has done to them, to their family or to their loved one.

Low because there are so many parts of this process that directly change who a person is, what they can do, and how they interact with the world.

Low because they see the suffering, and they often feel that there is nothing that they can do to make it better.

Low when they see the tears, the angry moments, the frustration that seems to repeat itself day after day, night after night.  Without fail, life cannot be controlled enough to make the world an easier place.

Those of us on the sidelines can only shout out the plays - we are not the ones in the game that feel as if they are playing by rules that they no longer understand.

Be conscious of how you treat yourself - how you treat others, and where your words can take you.  Words are palpable in the low world, and can do damage to everyone.  Try to find kindness, and if there cannot be kindness, step away.

Breathing space is always better than feeling defeated.

I noticed today that the weekend went by in a blur - time seems to be moving faster again for me, which is a clear indication that life is moving on.  As much as everyone tells you it will happen, and you don't believe it, it eventually returns to a more typical pace.

We seems to be back at that pace.

Now I will clarify that does not mean that I am working 12 hour days or spending my weekends on the computer.  Days and weekends are VERY busy, but they are family focused busy, at a pace that seems more familiar.

Our weekend started with a presentation at the MN Brain Injury Alliance conference, and ended with another round of house hunting and soccer practice.  Life is good, and it is what we knew before, with some significant purposeful modifications.

Time is not allowed to just leach away without meaning.

Children are not allowed to go to bed without hugs, encouragement and knowing that I am engaged in their lives.

Frank knows that I am with him, through thick or think, regardless of how the day started or ended.

I spend moments each day telling myself that life is good, people have my back, and each day is another day to make good on my promises.

These are good things. and even if they don't look much, they mean a lot to me.

 

Compassion fatigue - do you know what it is?

The textbook definition has many pieces depending on where you look.  The one that I think fits best for many people living within the world of brain injury goes something like this - extreme fatigue or emotional distress because one has spent all of their own energy caring for others.  This exhaustion can become so severe that an individual caring for others becomes incapacitated.  This level of fatigue can cause the caregiver to become ill to the point of hospitalization, and when this occur, the system set up to support one individual has failed the other.

The flip side of this can be seen with family members, volunteers or others that want to help someone recover, and spend a great deal of time assisting a family, organization or group.  Repeated requests for help to those that are "helpful" can quickly deplete their ability to continue to be there, resulting in losing that individual from further help in the future.  People have lives outside of their "helping mode" and when those lives need attention, the attention for those that need help is reduced.

Families living with and helping those with a brain injury begin to realize the true extent of this process early on in the journey.  Brain injuries heal slowly; recovery can take months and years to reach a stable level, although ongoing recovery in small ways can continue for a lifetime.  This thought can be incredibly daunting when you are facing 20, 30 or even 40 years with someone that needs ongoing assistance in their lives.

Those living with a brain injury face the opposite side of this ordeal - an individual depending on someone to help them navigate the areas of their lives that are difficult face uncertainty and worry when the one person or people in their lives begin to fade.  Some individuals may not notice a change in their world, but others, relying on that help, may see their support and comfort slowly disappearing.  This change can cause changes in their own behaviors, ability to cope in their lives, and even health issues.

Caregivers face a lot of challenges in the ongoing support of an individual with a brain injury.  Whether their loved one needs continues medical, financial, and ongoing care, or they just need help navigating through parts of a day or social situations, compassion fatigue can easily become a reality.

So how can anyone make it through a lifetime of caregiving without losing the strength and ability to endure?

They key to caregiving is to put yourself first.

For many this seems to be counterintuitive - how does helping oneself help another?

The hard truth is this - if you don't take care of yourself first, you cannot take care of those around you.  Think about the instructions everyone receives as an airplane is taking off - "make sure to put the oxygen mask on yourself before helping those around you."

When you take the time to ensure that you are well, then you can give energy to those that need it.

While the picture of what this looks like is different for everyone, you can be sure that the end result is the same.  When we eat well, exercise, get rest, and ensure that we have relationships outside of the caregiving role, we increase the odds of successful partnering.  It is with this idea of self-care that a balance can be forged between the energy going to care for another, and the energy to ensure that the caregiver can keep going.

When it feels like it is almost too much to deal with, it is already too much.