Having a brain injury is very dangerous out in the world and at home. It is a real issue for many reasons.
As you may already know, Veronica, my 31-year-old daughter has a severe tbi and I have a moderate tbi from a car accident 15 years ago. How I wish I had a “How to” manual from the start. But the truth is, having a brain injury myself, the information may not have made the sense it was intended to, in the beginning. We were given many resources shortly after our brain injuries. My husband couldn’t get more than two weeks off work from his company and was busy while he was at the hospital, going from the icu where Veronica was, to the floor I was on. I did not retain any understanding of what resources were available to us, and neither did he.
I was pretty confused and forgetful about things for quite a while and have a really bad memory today. I was Veronica’s caregiver once she came home from the hospital. My older daughter helped out a lot when she was home, and I really needed her. Only a couple days after Veronica got out of the hospital, I was helping her in the shower. When finished I left her sitting on the toilet wrapped in a towel. I told her I would be right back, and was within just a few seconds. I ran to another room really quickly. I rushed back into the bathroom to find my 15-year-old, that was the age of toddler mentally, standing on the toilet naked and reaching for something off the top of a cabinet behind the toilet.
- Never leave your loved one alone in the bathroom when they are still like a young child. It is not safe.
There are so many things I look back on and know how fortunate we are that nothing worse happened. It makes me cringe. How about you?
In the beginning there are so many questions that are unanswered and can only be known by trial and error. How do you know when it is the right time to leave your loved one at home alone while you run an errand or need a break outside the house? What amount of time is it safe to be gone? What kind of directions do you leave for a severely brain injured person with extreme short-term memory loss?
It was about seven months after Veronica’s brain injury. She was back in school half days and was so tired most of the time the only thing she did in the evening was watch tv, look at her phone, and sleep. This was a ritual before dinner, after dinner, whenever she was not at therapy, not eating or going to the bathroom…for such a long time. So here Greg and I had not had any time alone for seven months, except when Veronica was still in the hospital. But that was devastating, so I don’t count that. It was quiet. Veronica was relaxed. Greg and I decided to go down the street a couple miles to eat at a restaurant and actually have a few minutes alone while we were awake. Lying next to each other in bed at night is definitely nice, but we had things to talk about. We reminded Veronica to stay put. Lay on the couch and only get up to go to the bathroom. We reminded her we had our phones and all she had to do was call. If anything happened and she needed us, she would probably not even be able to find our numbers. I don’t know about your experience, but in ours, it is very easy to become flustered and overwhelmed to the point of needing step by step instructions. Life was so stressful. I know any caregiver reading this will probably agree. The truth is, at that time, it wouldn’t have mattered if we were in the front yard. If she needed us, we weren’t there. We still had a few friends at that time. We should have called one and just asked if they could spare two hours. There is respite care specifically for this reason. I didn’t know what that was back then. Now I think back and say to myself, “I don’t know what in the hell we were thinking.” Thank God everything turned out just fine, but looking back, we would have done things differently. If you are reading this and have an injured loved one that needs overseeing, ask for help.
2. Get someone to stay with your loved one if you are unsure if they will be ok staying alone for a couple hours.
One time our family went to Las Vegas and Veronica really wanted to go to the bathroom by herself. We let her and immediately I thought, “There could be sex traffickers watching her.” That is not unheard of, if you are reading this and thinking I am overreacting. Veronica is gullible and will go with people. I won’t write more details about that, but I can tell you she is very trusting. Just after letting her go, I panicked. By the grace of God, she knew where she was going and came back to us. We let her go by herself in a restaurant there too. I immediately got up and ran to catch up with her. An unfamiliar place is not the place and time to let your loved one spread their wings.
3. Escort your brain injured loved one, adult or child, to the bathroom in Las Vegas or any place unfamiliar to you.
All these things seem like common sense, but I guess that is not something we had in every situation. I often look at Veronica and have made the mistake of thinking Veronica is more mature than she actually is. Staying home with her day to day, just her and I, there aren’t many dangerous, unsafe situations I need to protect her from. It is when she is around a lot of people that her immaturity comes out most. She loves to be the center of attention and sometimes uses inappropriate behaviors to be just that.
As some of you know Veronica was in a nine-month relationship with a man child that had an alcohol problem. She trusted him and gave him her debit card, pin number, our garage code, and lots of her social security money until she was overdrawn. Not only she cannot manage her money, but her boyfriend took advantage of her generosity. He said he would pay her back and that didn’t happen. She trusted him and he would often say this or that did or didn’t take place saying, “You don’t remember, but I told you.” It is so easy to judge and say you would have kicked him to the curb, right? Well, Veronica had not been in a relationship with anyone for 10 years. That was since her brain injury. She wanted to handle her relationship and to an extent we gave her a chance. She wasn’t telling us many of the things he was doing and saying because she wants to be an independent grown up. More awful things than those I mentioned happened. Once we found out, we DID kick him to the curb. By the grace of God nothing ever happened when he ended up drinking and driving with her in the car. And Thank God we got emergency and permanent guardianship of her before they moved to FL and tried to have a baby like they planned.
4. Trust your instincts and let your loved one be sad rather than allowing someone else to take advantage of them and put their life in danger.
Life as a caregiver or family member of a survivor is no easy life, as you know. My husband takes care of all of us including Veronica and I, brain injured mother and daughter. Many families don’t survive having one brain injured person in the family. We are thriving with two. But don’t think for one minute many of us don’t go through somewhat similar situations, because we do. The difference is often in how we handle them. I have been wrong many times and I get so upset with myself. At the same time, I have the support I need to pick myself back up and move on. I am well aware not everyone is so blessed. And for those I pray.
If you would like to know more about our first twelve years of recovery, trials and triumphs, please read my book titled,
A Miracle a Day, One Day at a Time: Hope After Traumatic Brain Injury
Available many places online. Here is one:
https://store.bookbaby.com/book/a-miracle-a-day-one-day-at-a-time
Thank you so much for taking the time to read my blog.
May you have a beautiful, blessed week and a Happy 2024.
Dawn Corbelli 