When you have a TBI, you also have a large medical team. It amazes me how many physicians we have seen in the last 16 months. Although there are so many doctors that are dealing with John’s physical injuries and future surgeries, personally I feel the most crucial of these is his neuropsych doctor. In a recent session we discussed the importance of having a break.
I am John’s 24 hour caregiver. This is an assignment that I love, but it can be overwhelming from time to time. Imagine whatever field you work in having to be at your job 24/7. That thought alone is probably enough to cause a whole range of emotions. Now take that feeling and add to it a feeling that if you take a mini-vacation something harmful could happen to your family. This is what I am going through right now.
At one point when this doctor said that she feels John needs to have a week in a facility so that our family can have a respite, I felt a huge sense of relief. Then the sudden turn of emotions in my heart hit. I could no longer hold back the pain. The pain was intense. It was as though my world yet again came crashing down. Why do I have to be in this position? I just want our life back.
I could tell it was affecting my husband too. As my husband went through the day he acted almost as a child that was just grounded. There was anger and resentment that I could see in his actions even though he was not capable of identifying what he was feeling. How can I put him in a “home” even if just for a week? Sometimes it is hard to look at him at 38 years old and yet think of how I would handle a situation with a child. I also felt like he must have been feeling betrayed and let down so I planned an evening of fun for just the two of us.
We went out to dinner at Olive Garden and then went to see some movies. I wanted us to have some fun times. I checked my frustrations at the door to the theatre. I decided before I entered the movie I was not going to use this experience as a behavior lesson. Yes, that means when he would pick his nose, laugh at the wrong time, or turn and bury his head when an ‘inappropriate’ scene came on I would not correct him.
I have to do this. That is what I have ‘logically’ decided. Although it pains my heart, I know I need a break. I know that if I take a little time away I can come back refreshed and have even more patience and tolerance for the day-to-day challenges of living with TBI. I also realized that since the day of his accident I have not been away from him other than two times that there were situations that I had to address. It is hard to put that trust into others’ hands. All of the thoughts that run through my head, like what if he has a grand mal while I am away or what if he falls and has more injuries? I have to give him to God. I have to practice letting go because the reality is what difference would it make if I were sitting right there when it happens? He could fall as he walks out our front door or go into a seizure sitting on our couch.
Even though I “know” all of this, I am finding this to be one of my biggest struggles at this time: letting go. I share all of these thoughts because I know if I am feeling this way there must be others too. Maybe it isn’t caring for a TBI survivor, but a child that you need a break from, or a parent that is ailing or even taking the time to take a break from a stressful job. We all need rest. I tend to be a workaholic so this will be a challenging journey for me to get through. Once it is all in place, I am hoping to write about the rest and the anxieties that come with not being by his side every moment. Maybe that can give others the strength to take a break too.