Caregiver Stories
“I have difficulty functioning”
Category: Family of TBI Survivors Written by Family Member
Summary - the cause - the injury - today's quality of life?
May 20, 2011. My mother was completely independant. She was sixty years old, worked full time, had her own home, drove her own car, and behaved like a woman of 30. Around midnight, after a night out to dinner with her friends, she was running up her front steps to get in out of the rain, lost her balance, and fell backward. She cracked her skull on the pavement, suffered multiple hematoma's and other TBI related injuries. Two strangers found her, called 911,
and stayed with her until help arrived. She was on a respirator, had an IVC filter inserted, and was placed on a peg tube for sustinance. After the first two months she seemed to be improving physically. She was participating in therapy, walking short distances with assistance (even without the use of her right side, which still has not returned.) She went back into the hospital to have her skull piece re-inserted. Since then her cognition, at least her understanding of what is being said to her, has made leaps and bounds. Unfortunately, her ability to communicate with anyone else is next to nothing. She refused therapy, to the point that we were kicked out of rehab and she was moved into the Altheimer's/Dementia unit. She recieves no stimulation other than her interaction with the staff and with me. She cries when she tries to communicate because she gets so frustrated and scared and there's nothing I can do but hold her and wait for it to pass. I don't think she believes she can get any better. If you talk about therapy or goals she screams and cries, "NO" until you promise to stop talking about it. I don't know what to do. I am so lost and scared and sad and I don't know how to reach her. I really and truly believe she is trapped within her own body and depressed beyond words.
Please share your experience at the time you became aware of the injury?
My mom's cell phone's ICE contacts were her work number, her home number and her cell phone number. Not very useful to contact anyone in case of emergency. The ICU staff called her last incoming number to attempt to reach someone. The person they contacted was her new boyfriend of three weeks, who didn't have anyone's phone number. He called her workplace at 7:00 AM the next morning. Her friends at work called me at my workplace and I ran to the hospital. I thought maybe she broke her arm, or fractured her leg. I never imagined I would walk in to find her on a respirator with tubes down her throat, and clinging to life. I had just spoke to her the night before, how was this possible? She looked horrific. Her whole face was swollen like she was beaten and her head was wrapped in bandages. Words cannot express my distress and loss of my own cognitive function to see her that way. It was so sudden and so unfair. I wanted to be angry, but there was no one to be angry with. I wanted to scream, but there was no one to scream at. I wanted to cry hysterically, but I had to remain calm and collected for her. There is no other family beyond us. Iam an only child, my mother was an only child, and my grandparents are deceased. I still struggle with the reality of it all.
Tell about the experience immediately after the injury. Surgery? Coma?
She was in a coma for several weeks, even after she went to therapy her measurement on the scale indicated that she still had coma-like symptoms even though she was alert. I still don't understand how that is possible.
Tell us about the hospital stay after the survivor was no longer in a coma
The hospital experience was awful. She was successfully weaning herself off of the ventilator (we had to have one inserted to get the respirator tubes out of her throat) so the insurance wouldn't approve a weaning facility, but the hospital staff wasn't experienced in weaning (because it's that's what a trach-weaning facility is for.) By the time we got hospital staff wasn't experienced in weaning (because it's that's what a trach-weaning facility is for.) By the time we got her out of the hospital and into Moss Rehab she had a horrific hospital acquired bed sore that was tunneling and surrounded by necrotic tissue. This wound was a direct result of the collar they had on her. I have since learned that the Aspen collar is well-known for creating these types of wounds and that preventative measures are needed to insure that they do not develop. The skin care team at Moss was horrified by the wound and it took weeks of care to heal.
Tell us about the time in rehabilitation?
Her first two months of rehab at Moss were great and encouraging. She progressed from transferring from bed to wheelchair with a board, to stand, turn, and pivot with assistance (because she has no use of her right side. She could support her weight on the leg but had no use of it beyond that.) She was walking in therapy with assistance. We had a problem keeping her blood pressure within range so there was times when she couldn't stand or walk because of that problem, but it was so great to see her up and walking. She would go into screaming and crying fits, but I was told that was to be expected. Communication with her was extremely limited, but she could understand what was asked of her, but she wasn't always able to perform as requested and was never able to communicate verbally. PT and OT were thrilled with her progress, "slow and steady" they kept telling me. The problem was that she was not progressing quickly enough for Moss's standards. They sent us out to have her skull peice re-inserted and then would not approve us to be re-admitted (I am still vehemently upset about that.) We were forced to find a facility for long-term care that could accomodate trach care and peg-tube feedings. There was only one in our area. The first night there my mom pulled her trach and by they time they realized it the stoma had already begun to close. We went back to the hospital, where they told us that there was no reason for her to have it anyway!!!! So, we left it out and went back to the facility. I finally got the staff to realize that my mom's cognition was to a point that she was at least able to make her wishes known. That development was a two edged sword becuase they told me that meant she was refusing therapy. This resulted in us getting kicked out of therapy and now my mom is in a senile/dementia/Altheimers unit. The staff is not adequately educated on TBI and most have never dealt with it before. I have to constantly remind them that the goal is to stimulate her to gain abilities, not to just make her comfortable and check to see if she needs to be changed. I know it's not their fault, she's not in the right facility to suit her needs, but there's nothing I can do.
Tell us about coming home!
I wish I could. She is still in River's Edge Nursing Home. It's been almost a year since her injury and I've been told that we have a two-year window before she her brain has completely healed and at that point we will have no further ability to recover. I am so afraid that because of where she is, she will never recover beyond where she is now and it will not be her fault, it will be mine, because I have failed to help her and find a way to reach her.
"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"
Devastated
Tell us about life today?
I have difficulty functioning. I have so much I have to do for her beyond the medical aspect. The finances are in ruins. I was laid off from my job while under FMLA one month into this process. I have made some decisions that was so much less than intelligent when trying to self-medicate mysel through this process. Now I am on medication, real medication, and I am trying to piece my life back together. It is a fruitless pursuit, because I still have the legal and financial and medical aspects of my mom's life to take care of. My own business is so far on the back burner I almost don't care anymore. I know all about care-giver illness, but knowledge of it doesn't prevent it from happening. There is no one else to rely on, there is only us. I am failing her and I don't know what to do.
What do you want to tell others going through the same process? Treatments, understandings and actions that made a difference?
I wish is did.