Posted on May 7, 2012 · Posted in TBI Voices
This entry is part 32 of 32 in the series Quinn

Patience Key to Caregiving After Severe TBI: Quinn Part Thirty-Two

After spending so much time with Quinn and his wife we have learned that  patience key to caregiving after severe TBI. Quinn’s wife elaborates on this. Quinn ended his interview with an ode to his wife.  Thus, in honor of her commitment and of all the other caregivers, we will finish with her words:


Caregiver Advice: Patience Key to Caregiving after Severe TBI

What would you say to someone who might be in a support group, whose spouse is just coming home?

Patience is a virtue  (patience key to caregiving after severe TBI). It’s difficult.  At times you just need to walk away.  You just, you can go in circles trying to argue, but you can’t reason with somebody whose brain isn’t necessarily going to understand the reason or logic behind something.  There are many times, now, that I just need to say, this isn’t going anywhere.  We need to take a break.  Most of the time, he honors that; at other times, he doesn’t agree and he’ll kind of follow me around the house, and insist on continuing a conversation that’s obviously not going anywhere.  But, you need to try to take those breaks, and just sit back and take a few deep breaths (again meaning patience key to caregiving after severe TBI).

How Not to Be Offended with Patience Key to Caregiving after Severe TBI

How do you learn not to take it personally?

You have to remember that this is their injury.  This isn’t the person that they were.  This isn’t the person that they’re trying to be.  They can’t control what they’re doing, and they’re not trying to hurt you.  They’re not doing anything intentionally.  This is their injury, not them.

What are your goals for the next year or the next five years?  What do you think you need to get to those things?

The next year is definitely going to be one day at a time, trying to get his physical symptoms under control; his mental symptoms, mood symptoms, all that under control with the right medications; hopefully, the right diagnoses.  If there are some ear issues still going on, to resolve them.  They might be effecting the headaches and some of his symptoms; trying to, to get him in better shape, one day at a time.  And then, longer-term goals would be to get him back to active employment, active exercises, sports and, and, you know, slowly start integrating things that he used to do, back into his world.

What do you want to say to other spouses, in terms of how to get through that first six months about patience key to caregiving after severe TBI?

The first six months is going to be difficult.  It’s a learning experience.  No one has the answers.  No one has a script on how it should go.  Everybody’s injury is different.  Patience, patience, patience, and just do your best to help and be supportive; and take some time for yourself.  You can’t let yourself get worn down because if you’re not okay for yourself, you can’t help anybody else; so you need to take breaks and do what you need to for yourself, so that you can be there for your spouse.

As a professional, what more can you add to that, than you would be if you were just a spouse?

I don’t know if this is really professional versus personal, but you know, you need to take time for yourself.  Go to the gym.  Try to keep your fitness up.  Keep your nutrition up.  Try to sleep well, I mean, health, you’d be surprised how quickly your health can deteriorate, if you don’t take good care of yourself.  So, as a medical professional, and somebody living it, you know, you’ve got to do what you need to do for your own health; first and foremost, and that’s not being selfish because if you can’t be healthy yourself, you can’t take care of anybody else.

There are support groups out there.  There are resources out there.  Don’t be embarrassed, ashamed or anything, to reach out and get whatever help from resources from the community or from anything that, that you possibly can.  We happen to know somebody else who had a, a brain issue, not a traumatic brain issue, but a medical issue, an AVM that burst.  She was, I believe, close to, in her mid to late 40s; and I don’t believe that they have reached out, her or her spouse, to appropriate or possible avenues; and I think they’re, they’re suffering for it because they; I don’t know if they’re embarrassed, or don’t know exactly what’s out there, but use the community resources.  Use whatever’s out there; whatever means you can to, to try to get help.

Your support group actually breaks out the caregivers from the survivors?  How has that helped you?

There are different issues that the caregivers are dealing with, versus the survivors.  We go to two different support groups.  Both of them are run that way.  One of them starts off together and then separates.  The other one that you were at, separates and then comes together at the end, and the issues that are discussed are definitely different among the caregivers versus the survivors.

Do you get a chance to vent that you don’t otherwise?

I have, on occasion, vented, as I was not aware of a lot of the community resources for quite a while; where the discharge from the hospital wasn’t a pleasant one, initially.  I wasn’t given any information on the community resources, on support groups, even on inpatient rehab, which he probably should have gone to, instead of home at the time.  And I definitely vented my frustrations about that.

Without the caregivers, I would never have started my TBI advocacy.  It was a caregiver who got me interested in brain injury, it was a caregiver who co-authored with me.  It is typically caregivers who enlist us to help with a brain injury case.  Caregivers come with as many different styles as there are people. Yet what they share is the thirst for help and the commitment to the brain injury survivor. Patience key to caregiving after severe TBI

By Attorney Gordon Johnson


About the Author

Attorney Gordon S. Johnson, Jr.
Past Chair Traumatic Brain Injury Litigation Group, American Association of Justice :: 800-992-9447