I always believed I had an understanding of how difficult life could be for people with long term injuries or disabilities. I did not. I had compassion but I did not truly understand. I did not grasp the full magnitude of what is required when the health and well being of someone you love is compromised. I did not truly understand the role of a caregiver. I never realized how drastically their lives may differ from mine. After my daughter’s accident I came to the conclusion that there is definitely a difference between having compassion and possessing an enhanced understanding.
The Accident and Lessons Learned
When my daughter was involved in a serious car accident in 2001, she faced numerous obstacles. As a family we had to pull together. It was an experience we all learned from.
The Accident and Awareness
My daughter was in a serious automobile accident in 2001. She was 18 years of age at the time. She suffered multiple lacerations on her face and body and fractures of the cervical spine. It was a traumatic experience for her and in reality, for my entire family.
After she was discharged from the hospital, she returned home and we converted our living room into a bedroom for her. A medical supply company brought in an electric hospital bed and we obtained other necessities to assist in her recovery.
I am sure there are many people reading this that can truly relate to what I am about to say and for those that can’t, I hope what I have to say enhances your understanding.
When the life of a loved one is in jeopardy, there is a feeling of helplessness that is riddled with too many emotions to express or try to explain in a short essay.
When the physical pain they are experiencing is at it’s worst, your emotional pain is severe as well. In my daughter’s case, recovery was the prognosis but the journey to that point was difficult and there was a lingering doubt that anything could or would ever be completely healed.
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The Involvement of Siblings
My other children were an incredible source of strength during this time. My eldest daughter was home from her Junior year of college for a 5 week period. It was her Christmas break. Together we would lift my youngest daughter each time she needed to use the bathroom and when it was time to bathe, she only wanted her older sister to help. She relied on her to fix her hair, read to her from magazines and monitor which friends she was comfortable seeing and the duration of their visit. My eldest daughter also provided primary care when I had little choice but to return to work.
My son was in grade school at the time. He kept her from feeling anxious and alone by watching television with her. He helped her to feel involved by talking to her about his day, school and activities. When he ran out of things to talk about, he entertained her with his antics. He was also a butler in training.
The Healing Begins
Eventually the lacerations healed and the facial scars faded. The fractures were stable in the cervical collar, mobility and strength had increased. It was time for outings that involved more then a trip to the Doctor or the hospital for x-rays.
This proved to be a extremely nerve wracking experience. With her limited range of vision and her unsteady pace there was a constant fear that she may slip on the ice, be bumped into, or push herself too far and become overtired in turn, further comprising her health. New fears arose based on actual occurrences: She choked while drinking through her straw and there was nothing any of us could do but sit and watch in horror as she struggled to regain her breath. On another occasion we were all escorting her into the mall on an extremely windy day. I believed the man that held the door for open for me would continue to hold it for my two daughters because they were right behind me. I was mistaken. He let go of the door and it began a quick slam into my youngest daughter. My eldest grabbed her with one hand and the door with the other, preventing potential further injury
A Return to Society
Both daughters returned to college. My eldest to her campus hours away. My youngest to the local community college. I was extremely proud of her determination but like her older sister did, I worried about everything. Her physical health, her safety, and her emotional well being while on campus. This was a big step, actually a huge step for her. Dropping her off in front of the college each day, I felt like I did on her first day of Kindergarten. Excited but extremely nervous.
I knew it was very difficult for her in the beginning. I knew she was trying to hide the extent of her struggles because she so desperately wanted to regain some aspect of her pre-accident routine. Eventually the time came when the neck brace was removed. It became much easier for her to see her surroundings, navigate around in public places and get in and out of vehicles. With this sense of freedom and decreased pain there was also a feeling of vulnerability to injury. It was no longer obvious to people that she was still in the healing process so there wasn’t patience with her slow pace. There were minimal offers for assistance and she rarely spoke up to express she needed it. My daughter faced further challenges as the year unfolded. I’ve explained in my essay entitled, “Traumatic Brain Injury, the Inexplicable Explained.” which I plan to publish on Wizzley by 1/21/13.
She graduated from college a semester behind her peers but she did it! She proved to herself and to her family that she had gumption, she worked through her obstacles, faced her fears and had begun her attempt to recapture all of the dreams and goals she had once been clearly focused on.
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Compassion versus Understanding
There were many lessons learned as a result of this accident. I believe that as a family we gained a greater understanding of the barriers, challenges, and hardships that many people encounter on a daily basis. Prior to this experience, I thought I had an understanding of what injured, disabled or terminally ill individuals and their families faced. I did not comprehend the magnitude of the financial, medical, and emotional hardships to name a few. I never contemplated 24 hour care or the need for special medical devices. I didn’t acknowledge the potential impact on family relationships: positive and negative. In retrospect, I realize I had compassion but not a true understanding. Believe me when I tell you that there is a distinct difference between the two.
What Others Said Later
At various time throughout the years, discussion of this experience or an aspect of it has surfaced. Various friends and family members have admitted that at the time they did not know what to do, felt left out, or did not initially realize the severity and impact of it. I am not surprised for a couple of reasons.
First of all, my immediate family pulled together and we rarely reached out for help. There would have been no shame in doing so and we should have done it more often. It would have been easier to cope at times.
Secondly, prior to this experience, I had been on the reverse side of situations similar to this. There were many times I did not know what to do. I thought I would be intruding if I came forward with questions, repeated offers of assistance, or just took it upon myself to do something without being asked.
Want to Help?
I am not an authority on how to respond when you know someone that is going through something similar but I can offer some suggestions. I can list what meant a great deal, what touched the heart and renewed the strength. I can also tell you what would have been greatly appreciated.
A simple phone call
Just receiving a phone call can make a big difference. It might come at a time when the person really needs someone to talk to. Someone who will listen. Refrain from judging or offering your advice unless you have first hand knowledge concerning what is being said. Keep the call short and simple if the recipient sounds tired, distracted or unable or unwilling to say much at the time. Don’t take this personally or let it prevent you from keeping in touch days ahead.
A card or email
This serves as a reminder that you are there, that you care, but isn’t intrusive and may open the door for the person feeling comfortable asking for help or calling you to talk.
Just dropping off a warm meal can mean magnitudes to someone who is struggling to find enough hours in the day to do all that needs to be done and provide 24 hour care for another.
This is a big one for me, requiring some explanation. I remember people stopping to visit. Initially the distraction was welcome but if they stayed too long, expecting me to sit and converse, it often became an additional stressor.
Short visits or visits combined with assistance were a true blessing.
For example, I had a friend come with an inspirational book in hand. She encouraged me to shuffle myself into a much needed, long hot shower and would not accept my protests. To shower without having to coordinate it with my daughter’s nap, make it “quick” or have to keep the door ajar with “one ear open” for the first time in weeks was beyond description. To come out of the bathroom to find my dishes done and kitchen table free of clutter nearly reduced me to tears of joy.
The final recommendation for visiting focuses more on the “patient”.
My daughter was young and friends were in and out. They didn’t stay long, which was usually good since she tired quickly. What wasn’t always great was when they would come in groups and talk about where they were headed next. Often they focused on what they had doing that was fun and exciting. This only reminded her of how much she was missing and how her life had changed, adding to her frustration and sadness.
There were visits that were extremely beneficial to her and greatly appreciated. They included times when friends would come and bring a movie to watch together, laughing and chatting throughout. On one occasion a friend brought all of the new tabloids and recent magazines about the Stars. They mulled over them for hours feigning shock and cracking jokes. My daughter napped in between and woke to find her friend still there, waiting patiently. That small act meant more to her then I would have ever thought. She repeatedly mentioned how nice it was in the days that followed.
The action that stands out most in my mind and that of my daughter, happened on a Friday night. She sat alone in the living room watching reruns with her little brother. She mentioned no one had called her but she wasn’t surprised since it was the weekend and everyone would have better things to do. Moments later a knock on the door changed t he course of the entire evening. Her friend came in with a duffle bag, announcing she thought a sleep over was in order. She set up her temporary bed on the couch beside my daughter. She brought makeup, hand mirrors and together they dolled themselves up. She l leaned over the hospital bed and helped when needed. They laughed and talked until the wee hours of the morning.
This is another area where I am compelled to offer various suggestions. Everyone has something to offer. Special talents are not required, just a willingness to do what you can.
I previously mentioned helping with household tasks and providing a meal but there is also the offer to run errands or provide transportation. I would not have let anyone else transport my daughter to medical appointments but I would have truly appreciated an offer to transport my son to or from school activities. Once my oldest daughter returned to college it was extremely difficult orchestrating transportation for him. The shift my husband worked did not make it easy. I often had to wake him so I could do what needed to be done, often tasks that someone else could have easily done with minimal effort.
Offering Your Time In Another Way, Renewing the Spirit of Another
Babysitting service is another big one. In our situation it is a misleading term but the act is comparable. Our daughter could not be left alone. The routine of everyone in the family was altered.
Compromises were made. Instead of spending her first long break from school with friends, engaging in activities most college Juniors do, my daughter chose to spend the majority of her time providing care for her sister.
It was impossible for my son to have friends over due to his sister taking up residence in the living room (the center of our house and directly below his bedroom), requiring rest, and relying on near constant help. More invitations to go to the movies, go skiing, or spend the day away, just being a kid would have been wonderful for him.
One morning my sister-in-law, a beautician, showed up at our door. She told us she was throwing us out of the house and that we weren’t to return until early evening. We all looked at one another with apprehension and hesitation. She insisted we get on our way and eventually all of us did. It a day more needed then any of us realized. My oldest daughter went to visit some of her friends, my husband and son left and spent the day together. Though I was initially extremely nervous I drove 40 miles away to do Christmas shopping. I called home too frequently the first couple of hours and shopped at a frantic pace, but by mid afternoon I started to really enjoy my time alone, holiday shopping like all of the other women I encountered. I even went into a restaurant and ate lunch. For the first time in a long time I truly tasted the food before I swallowed it.
At home, my daughter was having a hair shampoo, cut, and style. She had a manicure and for the first time in a long time she spent the entire day with a “fresh” face and new conversation. It was an opportunity for her to talk to someone about how she was feeling without worrying it would cause further anxiety. It was a chance for her to look the way she wanted without having to rely on us.
When I opened the front door upon returning home, the voice that shouted a greeting from the living room sounded renewed. When I entered the room her face was illuminated. It wasn’t because of the fresh makeup but because she had received a much needed “break” as well.
I know there are many more things I could say but I am hoping I have said enough. My intention in writing this piece was two-fold. I wanted to enhance an understanding of what someone you may know may be experiencing. I also wanted to provide some guidance based on our experience. In doing so, I hope what I have written may serve as a prompt for reflection or make a positive difference in how one may respond to the needs of others.
Comments for a Common Cause
We all know people in our community that may be caring for an elderly parent with diminished capabilities. Perhaps they have a family member who is terminally ill or disabled to the point of requiring daily assistance or are facing new challenges because of a severe injury caused by an accident or military activities.
Please leave any suggestions you may have for helping the individual or the family in need. Feel free to share your personal experiences!