“What do I do now?”, “Can I really handle all of this?”, are questions you may be asking yourself after a traumatic brain injury (TBI). These were the very questions I asked my self when I was told that my husband was brutally beaten and put in a coma because of it. If any one has lived though a TBI and that includes family members as well, you are all survivors, and survivors I am here to say “YES you can! You really can handle all of this.”
Life does not give you more than you can handle, yes it seems like there is no way you can trudge through this debilitating condition, but you can! Although it will not be easy and it will take a lot of hard work but you are a Survivor! All you need to do is take one day at a time.
In the hospital you fought for you life and won I might add or you would not be reading this right now. So now you must fight for your independence. One way to start is by listening to everyone who is positive and stay away from negative people. If you don’t trust your self find someone you do trust, your wife, husband, your parents, or one of your siblings. Let them be your “cheering squad” because you are going to need one.
I remember my husband did not trust me when he came home from the hospital. He would call his dad all the time. I felt very jealous to say the least, but I let my husband talk to his father and over time my husband began to trust me again. So spouses please if your wife or husband does not trust you try to put your differences aside and let him or her trust who they need to.
Make sure to be realistic about your goals and don’t set a time limit on them. This is very important because with a TBI you never know when you will accomplish your goals. For example- my husband had a TBI and for two years he could not walk, today he can now take two little baby steps on his own. Don’t give up!
This is also where your “cheering squad” will play a big role they will keep you going and working toward your goal by saying positive things to you such as “great job!” or “you were very close lets try it again” and my all time favorite one that I had to use with my husband, because he was very depressed and used to say to me “It isn’t going to work so why do it!” To which I replied “sitting on the couch isn’t doing it either” but I will worn you, you need to be positive when you say this sentence. I used to say it in a joking kind of way so that it would not be a negative thing and my husband would not take offense to it.
Another thing you should know is when “enough is enough”, sure go ahead and push yourself, but know when to stop. Family members also need to know when to stop pushing your beloved TBI family member.
Your memory may not be as great as it once was but again over time it can improve. My husband and I would do crossword puzzles and our satellite TV had word games on it that we would play. After one year of doing this my husband made great improvements he is better then I am and I don’t have a TBI.
The TBI surviving family members also need goals. Goals of becoming organized, this was very hard for me to learn. 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, you will need a schedule.
Set time aside for your TBI Survivor, time for your children and time for yourself all of these people are very important.
For Example: When I set up my schedule I physically wrote in a date book. I would wake up at 5am usually every morning while everyone else was still sleeping so I scheduled 5am to 7am time for myself- paint my nails, read a book, spend time with God, and anything else that was just for “me”. Keep in mind when you schedule things just for yourself you are not being selfish on the contrary you are taking care of yourself so that you can be physically and mentally able to take care of you family.
Then, I would have time set aside for my daughter. She would get up at 7am to get ready for school. She had a 45 minutes to eat, dress, and do personal hygiene in order to spend time with her I also did my eating and personal hygiene with her. My daughter was 7 years old so anytime I did something with her she loved it no mater what it was.
While she 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.
From 3:30 5:30 was for my daughter helping her with her homework, playing games, reading a book, or anything else we could think of.
5:30 6:30 was open time.
6:30 8:30 was for dinner cooking, eating and the cleaning up after dinner.
8:30 9:30 was for getting my daughter to bed, giving her a bath, personal hygiene, ect.
9:30 10:30 was for getting my husband to bed.
Once I got good at these tasks I found that even though I had scheduled time for them it didn’t take nearly as much time as I had scheduled, which gave me a little bit of time in between for a much need rest.
As a caregiver you need to get out of the house and your children need to get out of the house. Find someone who will come and sit with your TBI loved one. This is important even if you only go for a few hours at a time like I did. I would have my sister come and stay with my husband for a few hours at a time which gradually led up to the whole day. This day was dedicated to my daughter we would go to the park, the mall, bowling, skating or even just to the library if money was tight.
I know that at first you may be a little fearful of leaving your loved one home with someone besides you, but you have to do what is best for your family. The fact that I knew that my husband would not want our daughter to suffer because of his condition was what kept me from staying at home. This thought actually pushed me out the door. Yes, I worried so badly that something was going to happen and I would not be there for my husband, but I knew I had to get over it!
My 7 year old daughter did not trust her father, this was a horrible thing not just for my husband but for my daughter as well. How was I to help my husband gain the trust of his daughter?
I started by making Anthony and Christina watch movies together because that was what Anthony was capable of doing. Then when I saw that Anthony could play simple games I took advantage of it, I would say “Christina ask daddy to play the matching game with you”.
I didn’t stop there; I started telling my daughter to ask her father about things. Although my husbands mind had been affected he was still able to remember things he grew up with my husband grew up on a farm so any question that my daughter had that was directed toward something on a farm I simply said “Gee Christina I don’t know, why don’t you ask your dad he knows about stuff like that.” By doing this she slowly began to trust her father again.
It has been two years and she now fully has trust in her father again. You see being the care giver you are not just caring for the injured person you are caring for the entire affected family especially the children.
We don’t know what the future will hold for us but we are continuing on on our life’s journey. We have no doubt that there is more to overcome that what we have already overcome. But we keep our eye on the goal of returning to a “normal” life. The goal of walking, and dealing with the life we have now. And with God’s help we know we will overcome anything together as a family.