Caregivers & Professionals
Stories About Caring for Survivors With Brain Injuries
Caregivers and Professionals
Stories of Caregivers and Professionals:
My son sustained his traumatic brain injury while traveling overseas. My husband and I took our son on a vacation of a lifetime to celebrate his graduation from college. Little did we know it was going to be a memory of a lifetime in a bad way. Our son fell in our hotel bathroom and hit his head hard. Initially, it was thought he had just sustained a concussion. He lost consciousness by the time he reached the hospital by ambulance.
My son sustained his traumatic brain injury while traveling overseas. My husband and I took our son on a vacation of a lifetime to celebrate his graduation from college. Little did we know it was going to be a memory of a lifetime in a bad way. Our son fell in our hotel bathroom and hit his head hard. Initially, it was thought he had just sustained a concussion. He lost consciousness by the time he reached the hospital by ambulance.
Numerous tests were run and it was determined that our son had a severe brain injury. His breath was shallow and he was barely hanging on. For quite some time, our emotions were on a roller coaster ride, not knowing if our son would live or die and if he survived what disabilities would he be left with. All this was going on while we were in a foreign country, far from our home and family.
We were told our son had a brain bleed and there was no part of his brain that was not injured. He was diagnosed with an anoxic brain injury with a coup countercoup. The injury caused his nerve cells to be sheared off and torn apart. His head was so swollen he looked lifeless. After about seven weeks in a coma, he suffered liver and kidney failure and had high sodium levels. We held on each day hoping for good news.
Eventually things turned around and our son’s condition stabilized to a point that we were able to med-i-vac him back to the United States. Upon landing, he was taken by ambulance to a hospital where he stayed for two months in a semi-coma. His eyes were open but he wasn’t present and he couldn’t speak. About forty-five days later, he was still not alert despite rehabilitation treatment. His doctor recommended we put him in a rest home as he required extensive care and his doctor wasn’t sure we would be able to handle it.
We chose to bring our son home and take care of him ourselves. We petitioned the court for conservatorship so that we could deal with his medical and financial matters. It was hard for us to see our son, who had his whole life in front of him, in this condition but we take one day at a time. It has been a hard road for all of us but especially for our son who suffers from wide-ranging physical and psychological injuries.
After release from the hospital, he was unable to talk, walk and see correctly. He was unable to perform personal hygiene like using the restroom but he has slowly improved and can do some of these activities without supervision. Today, he still has issues with certain activities along with difficulty with socialization, behavior, judgment (like recognizing danger) and has a lack of empathy.
It is understandable given that our son is a grown man who was living on his own and taking care of himself and now is dependent on his parents for everything. Currently, our biggest concern is what will happen to him when we die or are too old care for him. We don’t want his sister (who loves her brother and would take care of him) to feel like she has to take on that responsibility.
The Enoch TBI program will help address this concern by providing our son with a place to live as independently as he is able and where friends and family can visit him at his own place. It is a win-win for all involved.
- Ronda
When I was in my early 50’s my father needed to spend time in a care home. This was my first experience visiting one and I can’t get certain aspects of it out of my mind. As I was making my way through the halls to my dad’s room, I came upon a woman who looked to be in her 20’s having a difficult time getting her wheelchair around a nurse’s cart in the hall.
When I was in my early 50’s my father needed to spend time in a care home. This was my first experience visiting one and I can’t get certain aspects of it out of my mind. As I was making my way through the halls to my dad’s room, I came upon a woman who looked to be in her 20’s having a difficult time getting her wheelchair around a nurse’s cart in the hall.
I was able to get the nurse’s attention because the young woman was not able to speak loud enough. I now realize that her vocal cords may have been damaged by a tracheotomy or another injury caused her speech issue but I had no idea then. Because this woman was near the office section I thought at the time she must be there with someone visiting someone else. I now have the realization that the young woman actually was a patient who had to live there with nobody her own age to associate with.
When my daughter was finally released from care to me I was working full time and trying to figure out how I would handle things going forward. I was extremely lucky to get my daughter qualified to attend an adult day program put on by Easter Seals of America that was especially for people with brain injuries and the average age of these survivors was about 36 as there were no other programs available to young people. The program hours were 9 am to 2:30 pm and my employer was able to keep me on even though I had to reduce my hours.
After about 4 months my daughter was released from the program because she wasn’t compliant with their rules and I had to scramble to find a caregiver from In-Home Supportive Services (IHSS). If you are not familiar, IHSS is available to low-income people on Medi-Cal. The pool of caregivers are, to say it kindly, not really the type of person you would trust, and usually not reliable.
After going through many different caregivers I finally decided to leave my job and do the IHSS work myself for my daughter. In our family there are only myself, my now 33-year-old daughter, and her 29-year-old brother. I am very envious of people with large families who can call out for help and comfort.
When I met people through a support group for brain-injured people and their survivors I finally started to feel like I had a family to depend on for help and to give help to whenever I could. This is the type of life we need for our survivors, a big family around and a village to keep them safe and happy.
- Jenepher
What happens to my brain-injured son when I pass on is not only my son’s greatest worry and fear, it’s mine too! Several years ago a member of a brain-injury support group’s young son died from the after-effects of his brain injury. It was sudden and unexpected.
What happens to my brain-injured son when I pass on is not only my son’s greatest worry and fear, it’s mine too! Several years ago a member of a brain-injury support group’s young son died from the after-effects of his brain injury. It was sudden and unexpected.
As tragic as that was and how my heart hurt for that mom, I saw it as a blessing and a relief for her. Sounds horrible, doesn’t it? No parent should be relieved that their beloved child has died. But that is how I felt. I was actually happy for that mom. Why?
Because in my mind and my heart I knew her beloved son was with God. He was safe. For that young man would not hurt anymore or have to deal with the devastating effects of his brain injury. That mom would no longer have to constantly worry about her child and what would happen to him when she was gone. She did not have to worry about who would care for him and that he was being cared for just like she cared for him. While her hurt would still continue, her worries were over as her beloved child was now safe!
When I pass on my family will step in and take my son into their home and care for him. They have assured us of that. But for my son it will not be the same and I still worry how long this care will last for him as my family members are up in age like me. My son has expressed a desire to live on his own and be independent. In many ways he can be independent, but I worry that the isolation of living alone will increase his anxiety, loneliness, and depression.
While my son is independent in many things, he cannot live alone due to his seizures and because he does need a mentor to help him with the matters he doesn’t understand, such as social security, insurance, financial issues, some directions, etc., due to his memory and comprehension issues.
The Enoch TBI Center is my vision for my son. He will be able to live independently in his own apartment room and at the same time will have other brain-injured friends to interact with as well as the facility staff to help him with matters he does not understand. He will not be alone but will have that sense of independence he craves and will be in a safe and secure and affordable environment. My son is very excited about being part of the future Enoch TBI Center community. I want that for him, too
- Noreen
You’ve heard the saying “the best-laid plans often go awry.” That is exactly what happened to a beloved member of our TBI community. Had the Enoch TBI Center been in existence, this person would have had a wonderful and safe alternative for his future living arrangements and his life where he would have had social interaction with those who understand the challenges of daily living for many TBI survivors.
You’ve heard the saying “the best-laid plans often go awry.” That is exactly what happened to a beloved member of our TBI community. Had the Enoch TBI Center been in existence, this person would have had a wonderful and safe alternative for his future living arrangements and his life where he would have had social interaction with those who understand the challenges of daily living for many TBI survivors.
As caregivers our biggest worry is what will happen to our loved one when we pass on. As a result many of us have been trying to put arrangements into place that will provide future care for our TBI survivor. One of our caregivers in our TBI family had discussed the care of her TBI spouse with their adult child should the caregiver spouse die before her TBI-injured husband. Their adult child readily agreed to be the future caregiver should the need arise.
Everything seemed to be in place and the TBI survivor was agreeable to the arrangement. But when the caregiver spouse died somewhat unexpectedly, time had changed things. The adult child had a boyfriend and a new baby. Although the TBI couple and the adult child, the boyfriend and baby were all living in the same household then, the dynamics changed when the caregiver spouse died.
Suddenly the TBI survivor no longer felt it was his home and that he no longer had any say in matters. Tension and resentment grew between him and his adult child and the boyfriend. Suddenly his home that had been a safe environment became like a prison for him as he stated he spent most of his time in his room.
While the adult child was probably trying to do the best as a caregiver, it was evident no one was happy and there was concern for all their well-being. The authorities became involved and eventually through this intervention, the TBI survivor was reunited with family living in another state. Sadly what had been a loving relationship between parent and child was now destroyed.
While this TBI survivor is in a safer environment now, he no longer has daily access to his “TBI family” and the support, love and understanding he experienced through his TBI family which he states he misses. Being a caregiver can be a difficult job. For many it is a 24/7 job with no such things as a break or a vacation. It is a difficult role to ask another to shoulder when we die.
Life changes for all of us, so what may have seemed like the perfect solution at the time for future care of the TBI survivor may not work out like we planned as is evidenced by this situation. For this reason other options, such as the Enoch TBI Center are important and desperately needed.