Caregiving after Brain Injury
By Irene Young
Challenges and rewards of caregiving
Most of us have had the blessing to watch our children take their first steps, to hear their first words, to witness their first everything and to embrace them as they overcome the obstacles in their life. Imagine if you would that it wasn’t your child, but your husband, your sister, or someone who is very close to your heart. I have had a recent experience that most wives don’t usually get. I have been blessed for the last four years to watch my husband not only live, but overcome life’s obstacles after his traumatic brain injury. Caring for a loved one who has had a traumatic brain injury (TBI) is not glamorous, by any means. But by setting goals and making a schedule, you and your TBI loved one will be well rewarded.
As the caregiver, you will be responsible for not just goal setting, but you will be essentially the cheerleader for your loved one. So it is extremely important to train yourself to be happy and positive, even when you don’t want to be. And there will be times when you don’t want to be. The caregiver needs to give words of encouragement, such as “great job!” or “you were very close let’s try that again!”
Recovery from a brain injury
No one really knows if, when or even how much an individual will recover from a brain injury, but setting simple goals can be beneficial to the survivor and the family. Their goals need to be realistic. Start small and work your way up. If your loved one can only hold a spoon and doesn’t know what to do next, set a goal to work on lifting the spoon to his or her mouth. Keep a journal and maybe video tape your loved one working on goals, not to critique it or tell them what they did wrong, but to replay it when the goal is accomplished. When my husband used to say, “I’ll never be able to do that!” I used to read from the journal I kept that reminded him that at one time he was not able to eat on his own, but now he can.
Don’t expect too much at one time.
This will only add to both your loved one’s frustrations as well as your own. It may take a little longer than expected, but stick with the same repetitive goals. Remember your loved one has to retrain his or her mind to do things that you already know. I can remember expecting my husband to be able to do a simple thing like hug me, but even a simple hug needed to be retaught to my husband. It took him a whole year to learn how to wrap his arms around me and my daughter and gently squeeze. But when this blessing finally happened, it was like a fourth of July celebration at our house with fireworks.
Know when “Enough is enough.”
I cannot tell you how important this is. Sure go ahead and push your loved one, but watch for signs that signal he or she has had enough, such as getting angry, throwing things, or irritability. These are pretty good signs that your loved one needs a break. Keep in mind that their attention span may not be as long as it used to be. As the caregiver, try to think of your adult loved one as a child; I know it’s hard, but it is sometimes easier to make goals and set time limits if you keep this in mind.
As the caregiver you also need goals – this includes goals on becoming organized. This was very hard for me to learn, but I soon realized that people with a TBI need structure and don’t usually like change, so I had to put myself on a schedule. If you have small children or if you want a life after TBI, I assure you that you will need a schedule as well.
Set time aside for your TBI survivor, time for your children and time for yourself – all of these people are very important.
Set time aside – for yourself and others
I physically wrote the time I scheduled for me from 5 a.m. to 7 a.m. in a date book. It was my time to paint my nails, read a book, spend time with God and anything else that was just for “me”. You are not being selfish when you schedule things just for yourself. On the contrary, you are taking care of yourself so that you can be physically and mentally able to take care of your family.
Then, I would have time set aside for my daughter to play a game, color, or just sit and talk with her. While my daughter was at school, it was time for my husband: getting him ready for the day, bathing, dressing, feeding and helping him with his physical, occupational, and speech therapies.
Once I got good at these tasks, I found that even though I had scheduled time for them, it didn’t take me nearly as much time as I had originally scheduled. This gave me a little bit of time in between for a much needed rest.
Being a caregiver is all worth it
Yes, caring for a loved one with a traumatic brain injury can be very exhausting at times, but the challenges never outweigh the rewards and blessings for both the caregiver and their loved one. Watching your loved one take their first steps, hearing their first words, and witnessing their first everything are beautiful memories that will be remembered for a lifetime.
Be patient, goals are easy to set, but not as easy to attain, it has taken my husband four years to be able to take six steps without the help of anyone. He can now bathe himself on his own, and do all of his personal hygiene. It may take him two hours, but the fact is that he does it without any help. Questions that used to take him two or three days to answer now take only one day. His greatest goal he says is being able to tell his daughter how proud he is of her achievements, which he does on a regular basis.
By Janelle Breese Biagioni and Marilyn Lash, M.S.W.
Information and tips to help spouses cope with feelings of loss and adjust to changes in roles when a husband or wife has a traumatic brain injury or blast injury. Explains importance of self-care and setting up a support system to cope with and relieve stress in families after TBI.
By Marilyn Lash, M.S.W. and Janelle Breese Biagioni
Information on emotions and reactions of children when a parent has a traumatic brain injury (TBI).
By Don Hood, B.A., Marilyn Lash, M.S.W., Ann Glang, Ph.D., and Bonnie Todis, Ph.D.
Families become the real “case managers” for services in the community over time, whether is it a son, daughter, parent, sibling, or spouse who has a brain injury. This workbook teaches families how to communicate effectively, set goals and plan for the future, locate and coordinate services, make referrals that get results, advocate for services and funding, and evaluate what’s important.
Every family can use information in this workbook to cut through barriers, find resources, locate services, pull together care plans and build a future.