The general description of a caregiver is someone who is responsible for the care of a mentally or physically disabled person, or whose health has been impaired by sickness, old age, or an injury.
Caregivers often have different conceptions as to what this role means. They might manage medications and talk with doctors and nurses on someone’s behalf. They also help with daily activities, take care of household chores, prepare meals, or help with financial matters.
(Do not confuse care giving with power of attorney or guardianship and will be discussed in future blogs.)
Accepting a role as a caregiver means you and your family need to be flexible, very flexible. The first month David was home with me, we learned how to rely upon each other and this gave me a new perspective on life. We also learned that life-changing events do not consider your convenience.
David’s dad had two years to go until he retired. We were in uncharted waters both mentally and financially and we needed every bit of income coming in, so he stayed in Ohio to work while I began my journey as David’s caregiver. And every night around 7 pm, we could count on either a phone call or video chat from him. David often checked the clock anticipating these calls. It’s something we do to this day if one of us is out of town.
The first months were the most challenging as far as how I coped with getting the foldable wheelchair in and out of the second door on my truck, and navigating through life with a person in a wheelchair.
By mid-August, I no longer had the energy to write in the journal and instead made a form called a daily sheet to keep in a binder near the telephone. This was a way to capture what was happening in our lives, what worked, what didn’t. It was also a way to track medications, foods, and activities that I shared with my sister and David’s doctors.
On September 2, my daily sheet stated that David walked around the house today because I hid his wheelchair again. Then he asked me to ‘help’ him as he was experiencing one of his headaches.
Headaches and/or stabbing pain are unfortunate side effects of TBIs. In order to stop the ‘buzzing’ in his ears (which I understood David through gesticulations and his way of getting his point across…I attempted to reduce the over-the-counter medication his doctor said to use, cutting it back to one capsule instead of two. I reasoned that it might have been responsible for his bloodshot eyes, a disturbing development that was difficult for me to observe.
David had rehabilitation therapies three times a week and the other days I invented ways to get him out of the house and moving. Of course, that meant schlepping his wheelchair in and out of my truck. On one trip to the grocery store, I pulled up to the front entrance and asked him to go in and sit down on an electric cart while I parked the car because I knew he could walk a short distance. From that day until he no longer used it, David could walk into any store and figure out how to use their carts within minutes.
There were times people would shout at David when greeting him. I remember saying that there was nothing wrong with his ears. Other times, people would try to talk to David and when he didn’t respond, I would say that his brain was on delay, like the windshield wipers on a car…traumatic brain injury accident, you see.
Finding information was not an issue, as we were inundated with it after David had his accident. Perhaps I just wasn’t ready to read it or it was overwhelming, or I didn’t know what I needed to know…but whatever the case, it sat in a cardboard box near my desk. Occasionally, I’d reach in to read something; my intention was not to discard anything because eventually there was often a ‘nugget’ that could help in some way.
One of these ‘nuggets’ came in the form of seven little pamphlets titled, The Road to Rehabilitation. Starting with Part 1: Pathways to Comfort: Dealing with Pain & Brain Injury that dealt with several issues we were struggling with, mostly the pain on the left side of David’s skull. This was about the time when my sister and I, along with his Neurologist’s directions, began our ‘medication reduction campaign’. (Note here that this is only one month after we brought him home permanently.)
As it was explained to me, your doctor can prescribe medication, but if they are certain muscle relaxants and antipsychotic drugs, they must be reduced incrementally…or as in David’s case – he became Dr. Jekyll and Mr. Hyde. Don’t do this without a doctor’s instructions. It took a step-down of dosage every 6 – 8 weeks; it is not an overnight process. I am convinced that if the person has the correct dosage, that person can live a full life – but if the dosage is off – you will have a completely different person to contend with!
My daily log sheets go on until the end of June 2008. They are tedious even for me to read so this is where I stopped including them in my writing but more importantly, David had so many significant achievements that happened so frequently, it was difficult to document everything.
I’m going to change the focus of my blogs slightly from a chronological journal of David’s progress to sharing the information I discovered as his caregiver. This is prefaced by the fact that everyone who suffers a traumatic brain injury may be at different stages in his/her recovery and so most certainly the ‘care giving process’ will be different for each individual. No two injuries or recoveries are alike, period.
The role of the caregiver is an important one in the life of any injured person but it takes on a completely new meaning for those who have suffered a TBI. This TBI survivor learns to depend on their caregivers many times over for everything and it is our job to teach (or reteach) them how to move forward with their ‘new life’. They most certainly are not the person they once were, and it is important for the caregiver to ‘let the old person go’ in order to embrace the ‘new person’ they are now. This was/is probably the hardest thing I had to do and I continue to wrestle with it daily.
I found strength in my faith and the information, as they are powerful tools as you learn what to do for your loved one; you also begin to feel more empowered and peaceful. It is a learning curve, to say the least; there is no magic pill – no analytical formula that will work for everyone. You just have to try things and tweak them until you find what works. Sometimes, the cure is worse than the ailment, and you will find yourself frustrated right along with them, but for the most part, just keep plugging away because eventually there is a ‘light at the end of the tunnel’, you just can’t see it yet.
I feel extremely lucky that David mostly understands what I try to teach him and if this is not your case, it is not my intention to flaunt our success, rather I hope that my writing helps in some way to either steer you to the right information, or onto a path where you can succeed.
In a note I wrote to myself on January 8, 2008, David started to recall things. He tried to tell me he wanted to go but could not tell me where, so we got out his photo albums that were started after his accident as a way to help him remember things. He pointed to his house (that went into foreclosure) and truck (that I sold). I told him that they were gone and he became almost inconsolable and I cried along with him. As I reflect back upon this time, this is probably where the stages of grieve started…
The next day David was sad but not as bad as the day before so we went through the albums again. I put his favorite movie in the DVD and he watched 50 First Dates. When the movie was over, we both sat and cried – but it was another opportunity to talk about sadness and the changes in his life, what happened to him and this allowed him time to grieve for what he had lost.
Reading further into those notes, it says that I told him that he was given a ‘new life’ and it will just take time to adjust to it. He asked, how long…my answer was that no one could say…I could see in his eyes how frustrated and sad he was, but this gave me hope that we were moving forward.
The following keys may help you on your journey of recovery – they certainly helped us. David would give these two thumbs up – his way of saying ‘it’s all good’!
Keys to recovery for the survivor of (Traumatic) Brain Injury and their Caregivers:
- Grieve for the sense of loss of who you were
- Handle denial and then move on
- Consider a lower dosage of medication/monitored by Physician/Neurologist
- Learn to re-train your brain
- Do everything in moderation
- Have patience with yourself and others
- Use humor wherever possible
- Care for the caregiver, thanks are always appreciated
- Embrace the ‘new you’ and accept the ‘new normal’
- Don’t forget to smile