Watching someone you love struggle to gain back their independence and dignity after brain injury creates major stress for a husband, wife, Mom & Dad, or other caregiver. In the early stages, that caregiver may not realize what a toll it will take on them personally. For sure, the brain-injured person will not know how much daily pressure is placed on the caregiver. Good doctors and therapists will advise those who will be providing the care to find a way to have some time away from their loved one to re-energize. After all – Everybody Deserves a Break!
This topic came to mind because Larry’s birthday was last Saturday. He and I started celebrating it several days earlier and the rest of the family wrapped it up on Sunday. Birthdays are very special to us since my brain injury in 1990. We don’t even mind being a year older - celebrating life every chance we get. That tragic event reminded us all of how fragile and short life really is.
The victim of a traumatic brain injury, stroke, anoxic or hypoxic brain injury, will not be aware of all the things their loved one does for them. In fact, they will likely have no idea of the stress that the caregiver is trying to manage. Here are just a few of the situations that might be part of those day-to-day responsibilities.
Answering the same question they just answered five minutes ago and for the fifteenth time (their having memory problems)
Using restraint because of the hateful attitude expressed by the loved one when something didn’t go his/her way (their being irritable)
Preparing all the meals, and doing the cleaning and shopping (because they are unable to do it properly and/or in a timely manner)
Taking care of the children – at home, school, recreation (because they have medical or other issues and can't do it even if they have the desire)
Going to work (got to make money to keep paying the bills - regular bills in addition to massive doctor bills)
Communicating with doctors and insurance companies (they can't remember and have trouble expressing what needs to be conveyed)
Of course, these are just a few. There are many, many more. If you’re a caregiver, I’m sure you could add a multitude.
Also, brain injury rehab, in the majority of cases, is the responsibility of family members. Loved ones will see problems when no one else does. Only loved ones know the vast number of problems that arise following a brain injury, and only those loved ones will know what areas need to be addressed during rehabilitation. In addition, not all problems come to the surface at the same time. Here are some of the problems they will likely face:
Denial
Being too optimistic
Being impatient
Being irritable
Verbal outbursts
Being impulsive
Being suspicious
Lack of motivation
Inappropriate social behavior
Increased or decreased sexual interest
Since not all areas of brain injury rehabilitation can be written down in black and white, there is no "do this and everything will be okay" program. Formal rehab in a neuromedical facility usually lasts at least four or five months. Brain injury, however, lasts a lifetime.
For the most part, Larry took no breaks from his caregiver duties. However, he does recommend it. I don’t know how he did it. I’m surely aware of how much he loves me, but even major love can wear thin when you’re under such stress. Maybe some of the things we endured could have been prevented or lessened if he had found a way to take some breaks. He was basically “on call” 24x7. However, I think that was one of the reasons why he came up with so many new strategies to help me become more independent. I still had that independent spirit – it just needed to be channeled and controlled. So, I was pretty open to suggestions for strategies that would allow me to do things on my own.
Family support groups are an essential part of being a caregiver. They offer you the opportunity to exchange ideas and get answers to your many questions.
Estimates show that only about 25% of brain injury victims receive formal rehabilitation services. It might be that many victims do not have insurance coverage for brain injury rehab. It might be that the medical community does not think neuromedical rehabilitation will produce positive results. It might even be that no one thought about brain injury rehab as a possibility.
Family caregivers are the answer. -- In our book, Brain Injury Survivor’s Guide, and on our website Brain Injury Online, you will find a number of facilities that provide neuromedical rehabilitation. Not to downplay the role those facilities provide, but, the best care will come from family members (caregivers). The best rehab programs will tell you how important the caregiver is to true rehabilitation after brain injury.
But, again, since those caregivers are only human, they need support too – (a break from the day to day stress of being the primary caregiver). I encourage all family members to participate in the many sections of Brain Injury Guide. We have quizzes, games, and articles that all lead toward the same goal: helping a brain injured person become a successful brain injury survivor.
No one understands the changes in your loved ones more than you. You can help them find strategies to deal with behavioral, memory, and cognitive problems. It is imperative that you, the family caregiver, arm yourself with knowledge that you can share with your loved one. You are the rescue team.
If your family has been fortunate enough to have a professional team working with you, there is something you need to know. The day will come when the professional team goes away, but the brain injury will still be there.
Physical therapists can do only so much, but the therapy, to be successful, must be continued. The same goes for any services you have obtained from speech and occupational therapists or social workers.
In order to develop a successful lifestyle, a brain injured person must have hope, a plan, resources and at least one loyal person to guide them along the way. That’s you – the caregiver. Just don’t forget - Everybody Deserves a Break! You can be an even better caregiver if you can find a way to step away long enough to catch you breath and be ready for the next crisis when it comes.
In most cases, there is a definite light at the end of the tunnel. There will come a time when you have developed routines and strategies that will enable your loved one to be more independent, allowing you more time for yourself. But for now, just hang in there. Get educated about brain injury and remember you deserve an occasional break.
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