Category: Caregivers of TBI Survivors Written by Caregiver
Summary - the cause - the injury - today's quality of life?
motorcycle accident - severe traumatic brain injury - quality of life is slowly but continually improving one day at a time, but is dramatically different from life before the accident
Please share your experience at the time you became aware of the injury?
I was just getting home from a fun day of shopping with our daughter when my husband's friend called.
He had gone on a bike ride with the guys for the day - the "wild hogs" I liked to call them. His friend told me that he had some bad news to tell me...my husband was in serious accident. Just then a police car pulled up to the house to tell me the news in person. My husband was taken to the hospital in St. Louis, a 2 hour drive from home. He was supposed to have been airlifted there from Alton Hospital but it was lightening so he was taken by ambulance. He got a hospital employee on the phone and they wouldn't tell me about his status, just that I needed to get there. I told our daughter he was in an accident and I had to get to him. I made the 120 mile drive in about 40 minutes. I saw him in the ER. He was unconscious, was found that way at the scene. He looked awful...bloody, bruised, swollen, and hooked up to many machines. He was taken up to ICU and in the waiting room I gave the surgeon permission to insert a bolt to messure his intercranial pressure. The surgeon told me it was likely that he wouldn't survive and then rushed out to start the procedure. I went in the bathroom and fell to the floor and completely lost it. Panic and fear took over.
Tell about the experience immediately after the injury. Surgery? Coma?
He was in a coma which they kept him in with the use of propophol for about 2 weeks. His ICP numbers were going crazy. He was unresponsive to pain stimulus. His heart went into Afib several times and the crash cart was used. His fever skyrocketed and they had to insert a cooling unit into his groin to fight off the fevers. He was given several units of blood. It was a very delicate balance of several different medications to keep his ICP numbers below 20. I stayed by his side 24 hours a day, taking a short break every 4 hours or so. I prayed the rosary over and over. I talked to him, touched him, did the range of motion exercises for him. I appointed myself the number watcher. I would watch the numbers on the machines - ICP, CCP, blood pressure, ventilator, temperature, blood sugar.
Tell us about the hospital stay after the survivor was no longer in a coma
The doctors told me that his brain injury was so severe that it was likely that he would never wake up when they stopped the coma-inducing drugs and would remain in a vegitative state. It took several days, but he did wake up. I would see his eyeballs moving under his eyelids when I talked to him. Occasionally he would follow a command I gave him (squeeze my hand, wiggle your toes) but of course he would never follow commands given by the doctors or nurses. After he woke up, the doctors said he would never talk again. After 8 weeks in the ICU, I was told find a nursing home that takes patients on a ventilator. I got very angry and protested this idea. I was adament on at least giving him a chance to breathe on his own before just passing him along to a nursing home. After 8 weeks in the ICU he was moved to the PICRU (post intensive care rehabilitation unit) where the goal would be to get him weaned off the vent. He was successfully weaned off the vent and he started talked after several weeks. It didn't make much sense, but he was talking and he was breathing. He was very agitated. He pulled out his peg tube and his trach. After spending 13 weeks in the hospital in St. Louis, he was transferred by ambulance to the rehab unit at the hospital here in Springfield where we live. Those 13 weeks I spent alone in the hospital, away from our kids, sleeping in the chair in his room, was by far the worst time of my life. I have never felt so alone and terrified. My kids would drive down once a week and spend the night in the waiting room just so we could spend some time together. Thank God for my 18 year old who took over the house for me - taking care of her little sisters, doing the grocery shopping, mowing the grass. She is a Godsend. My husband spent 5 weeks in the rehab unit at our local hospital. He was then released. He needed, and still needs, 24 hour care. He had home health for about 3 weeks and then we started outpatient rehabilitation - physical, speech, occupational. He had his last outpatient therapy sessions last weeks because our insurance will no longer pay for therapy. His therapists recommended sending him to a rehab facility, but of course our insurance will not pay for that either.
Tell us about the time in rehabilitation?
He has been getting speech, occupational and physical therapy. While he was in the hospital rehab unit, he was extremely uncooperative. He received 3 hours a day of therapy (1 each-speech, occupational, physical) for 5 days a week. He was also in a lot of pain due to a terrible bedsore he got while in the ICU (while he was in a coma with the bolt in, he had to have his head elevated or his ICP number would soar, this resulted in a very bad bedsore.) He was also very agitated during that time and difficult to work with. He has come a long way with his therapy now. He walkes around the house pretty well these days. I still have to be close by because his balance his off. He dresses and bathes himself with my assistance. He is starting to take on more and more all the time. He still suffers from aphasia (words don't come out right) with his speech. His comprehension has improved a great deal. He still has a long ways to go and I believe that he will continue to progress. We are still in that first year time frame as his accident happened just this past June. I find it very sad and frustrating that our insurance will no longer pay for therapy because he could greatly benefit from it now. He is much more cooperative and is now trying hard to improve and become more independent. He was not motivated during his time in the rehab unit and the initial months of outpatient therapy.
Tell us about coming home!
Coming home was very nice after 18 weeks in hospitals. At the same time it was very scary. He couldn't get around the house very well, even with a walker. Showers were especially scary. He still doesn't sleep for more than 3 hours at a time. He has mood swings, which I've discovered are a challenging symptom of TBI. I think that the more he is aware of his condition, the more frustrated and upset he is. Although he is still my husband, he is not the same man I married. I find myself grieving for the him I knew before the accident. It is very difficult being his caretaker 24 hours a day. I have a lot of guilt over my inadequacy as a mom as my attention is focused on him. I miss going out and doing fun things with my kids. I have missed out on a lot with them during the past several months. I also have guilt about not going to work. I miss my job and my paychecks. Unfortunately it would cost more than I make to hire a caretaker and we don't qualify for any sort of assistance. From a financial standpoint, I'm terrified. We are living without either of our paychecks and it costs a tremendous amount of money monthly to keep our health insurance. We have been living off of our savings and it's dwindling away to nothing. I wish there was someone out there with answers about how we are supposed to go on like this. I just keep praying and everything will work out. I am so grateful that I didn't go on the motorcycle with him that day; I don't know what our kids would have done if we both ended up with a TBI. I thank God for our kids and all the gifts He's given us and that my husband has come this far in his recovery. We are still here at home plugging away one day at a time. Friends don't call anymore and have never come by. Everyone has their own life and life goes on. I have found that in this sort of situation where you are virtually "shut in", people tend to forget about you. It is a lonely life for now, but we will geth through this long journey to the unknown outcome together.
"Please type some single words that describe how TBI has touched your life. For example: Frightened, confused, sad, etc. Enter as many or as few words as you like. Separate each word with a comma"
terrified, frustrated, exhausted, lonely
Tell us about life today?
Life today is very challenging. Some days are better than others, depending on his mood swings. When he's in a good mood, it's great. I can see glimmers of the old him shining through, which is a wonderful giflt. His mannerisms, some of the things he says, etc. When he's in a bad mood, he tends to scream at me and cusses. He has opened the car door while I'm driving in an attempt to get out of the car. His taste has changed and it's difficult to find things that he now likes to eat. He continues to lose weight because he doesn't have much of an appetite. But above all, he is here and is getting better each day. He had proven the doctors wrong and has already progressed above and beyond their diagnosis (he's always been stubborn!)
What do you want to tell others going through the same process? Treatments, understandings and actions that made a difference?
I would tell others to take things one day at a time. Recovery seems to be a dance of one step forward and two steps back - just go with it and try not to get discouraged. The doctors will tell you the worst case scenario; stay realistic, but don't give up hope. Keep your sense of humor; it will keep you sane. I find the serenity prayer very powerful in helping me to deal with the catastrophe of TBI -- God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.