In November of 2015, two days before Thanksgiving, I almost lost my wife Emily, who was in a horrible auto accident. My then 4 year old son and I were both home sick. I had dropped my older children off at school, we returned home, took meds and crashed. While I slept for a couple hours, I received messages from the Hospital and the School. I called the Hospital and was told I needed to get to the Hospital in a hurry because there was a good chance my wife would not survive her head injury. I was so sick! I was trying to get information from Doctors, while also rushing to the bathroom to vomit. My body finally gave out, and I literally stepped out of the restroom, took a few steps and passed out. From what I gathered, the men's room was near the elevators, and when I went down, my head slammed into the elevator door. I was taken to an emergency room where they checked me out thoroughly and gave me fluids. After a few hours, I felt much more able to handle what would be 2 weeks of almost no sleep.
Emily made it through night one. She was in a coma and on a ventilator for about a week.
Characteristics of coma
She transitioned to a vegetative state for the next three weeks. The Doctors were talking about getting her into a long term care facility or nursing home, because she was no longer progressing enough to get her into an inpatient rehab facility. Scary stuff!!!
Characteristics of the vegetative state
I was given a list of long term care facilities that our Insurance would accept, and was supposed to decide where to send my wife. That evening, while I was with my kids, I received a call from my Sister in law, that Emily spoke. I rushed back to the Hospital to see her. I walked in, grabbed her hand and leaned down to tell her I loved her. She looked up at me and responded, "I love you." Over the next several days, she began to progress so much, they called Mercy Rehab Hospital to come back and re-evaluate Em. Sure enough, they said they could accept her and within a couple days she was transferred. Once there, she made such amazing strides. The nurses and therapists there were amazing and Emily's strength and work ethic were incredible.
I now needed to learn how to care for Emily when it would be time for her to return home. Beyond what I would learn at the facility, I was constantly online reading articles. I went to some group TBI support meetings with others who had gone through what I was experiencing. Michael Harris and the Grey Matters Fund of Springfield MO are amazing people. Lost and Found Grief Center in Springfield, were also a huge help for the kids and I.
Having Em back home and being her Caregiver, has taught me a lot about my own resilience, patience and the complex nature of love.
There is a fine line between pushing her to do more, but not pushing her to do too much. She still needs plenty of sleep which is good for her continued brain recovery. Emily can easily get frustrated, which is part of suffering a traumatic brain injury. I usually try to defuse her anger or frustration with jokes, but when that doesn't work, I've learned to take a step back and excuse myself by saying, "hold on, I need to use the bathroom." Once I come back, she has usually settled down, and things are fine. Two or three times a day, she will intently walk towards me and say, "ok, we have a serious problem!" About 99% of the time, the serious problem is that there are no clean cereal bowls, or we are out of creamer for her coffee, or the batteries are dead in the Wii remote.
I want her to get back to being a functioning parent, which means housework, cooking and all that goes along with it. She still gets confused and forgets things, so I've gotta watch her, but I don't want her to feel like I'm constantly over her shoulder. When Em does the laundry, we all end up finding articles of clothing in our closets that belong to someone else. On multiple occasions Emily has emptied an entire load of dirty dishes and I've had to go find them and reload the dishwasher. Her response is usually "What were you thinking? Why didn't you start the dishwasher?" One time she tried putting cinnamon in mashed potatoes, but at least she wanted to attempt to cook for us.
Besides the memory loss and confusion at times, Emily also lost her sense of smell and is unable to produce tears when she is upset or sad. She has a blind spot when looking to her left, which will probably prevent her from ever driving again. This obviously puts a lot more pressure on me to get her and our three kids everywhere they need to be. I will say, I've met some fantastic people who have helped me out so much with this. Parents of classmates and teammates and past teachers of my children have been an amazing help to me and my family.
When Em really get to laughing, she struggles to control her bladder. This can get extremely frustrating when we try to play games or when we are in a hurry to get somewhere. There are times when she has to change her clothes 2 or 3 times because I'm yelling at the kids and saying crazy things to get them all ready to go. This always causes her to laugh. I get frustrated, but it's just part of it. It's all about adjusting. One time after one of my daughters games, we went out to eat. Obviously, I said something funny, and Em lost it. I had one of the kids get some paper towels so we could clean up the seat. We then formed a family train and walked out in a single file line, so that people could not see her wet pants. I now try to make sure I've always got a change of clothes for her at all times.
Being a caregiver can be an adventure, it can be frustrating and exhausting, but then so is being a parent and a spouse. The only real difference is I work harder to improve myself so I can be the best for those that depend on me.