Bill/Dad here.
I write these comments on this sixth anniversary of Joe’s accident. I recite some of the lessons I have learned over these past six years. Maybe it will help others who have loved ones suffer a TBI or other traumatic injury. Some of my comments apply more to people personally visiting their injured loved one; hopefully, they will be of assistance to everyone.
We never know when we will be more involved with an injured person than we could ever have imagined. TBIs and other serious injuries occur across the general population.
Below I write lessons I have learned, mostly the ” hard way” . I am known as a “Control Freak” and this TBI journey has taught me there are situations we experience in life where we have little or no control. I am a more patient man now.
You may not agree with all I write, but my comments are heartfelt, based on experience and I suggest you might
agree more than you can imagine if you had seen what I have seen. Thanks for reading.
Here goes :
1. Maintain Hope. Most of us are “Spiritual”…use that strength.
2. Smile. Costs nothing. Difficult. Helps enormously. Humor carries the day.
3. Protect your health. Exercise. Eat well. Take breaks. Do not smoke. Insist those that you love wear helmets when on skis, skateboarding or a bike. No motorcycles. If you are a friend of a family member or another who is constantly visiting the injured patient, encourage them to take some breaks. Maybe send them home and you go.
4. Do not ask : ” Why did this happen ?” Irrelevant. No good answer.
5. The Goal of treatment is to make the injured person as Independent as possible. I used to open doors for injured people, try to do things for them. It was a surprise to me to be often told “no.” when I asked if the patient wanted help. It may take several minutes to open the door, but they are determined to do so. Need to develop confidence along their Journey to Independence..
Just this week I was moving an obstruction in Joe’s room so he could get into the bathroom to brush his teeth. Joe told me, “No. I need to do this. You will not always be here.”
6. Educate yourself about the injury. This is much more difficult than it appears. I remember being reluctant to learn things I did not want to know. I joined a discussion group with friends and family of TBI patients. One family member was disruptive and the moderator not able to control the situation. I quit. I had stress enough. With the internet, we can learn a lot. There are legitimate “groups” and blogs that help. You will always be talking to your loved ones, care givers, and friends. You cannot help but learn on a daily basis. Your loved one’s social worker can direct you to resources. The people that work mostly with your injured people can give you the most information. The CNAs and nurses and therapists see your injured patient 100 times as often as the doctor.
7. Advocate for your loved one. Be polite but if you sense something is not right, seek a remedy. You will be told many times negative comments. Do not accept these comments. There is often another approach. Even highly educated people can make mistakes.
8. Thank the health care providers. They “do the work of angels.” They are kind, educated, compassionate and underpaid. Thinking about it, virtually everyone they deal with is traumatized : the injured person, family, friends. Co-workers. When I see a nurse at the grocery store, I stop the nurse and say : ” Thank you. We love nurses”. Rarely, you may observe an example of poor care. No profession is perfect. Speak up about it. I remember Joe’s brother Jim observed a nurse giving Joe a plate of food as Joe and Jim were waiting in an ER area of a NY hospital for some 20 hours. The nurse acted out of compassion, but at that time, Joe could not chew or swallow. I remember a nurse picking up the tube from the floor that was being inserted into the PEG… that provided liquid to feed Joe. I stopped her. Be alert.
9. Balance patience with advocacy. Patience with the injured person, with your family, with caregivers. This is not easy. As I said above, I learned very quickly that I have had very little “control”during this TBI Journey. I remember telling Joe once as he waited a very long time for assistance:
“Joe. you are sure quietly patient.”
Joe : ” Or quietly impatient.”
Joe told me : ” I am upset, but that is no reason to impose this on others.”
10. Chances are, a severe medical emergency will happen to you or a loved one. You need health insurance. We all need to push for modernization of the health care system. More and better computerization. We need additional health care professionals. They need to be paid more. They cannot finish school with a mountain of debt. Many of the people resisting a national health insurance plan have health insurance. Joe had health insurance with a huge insurance company…Aetna, that several times played games and refused and delayed agreeing to pay for meds and care. It is terrifying to have your loved one be denied care. I talked to an Administrator of a Facility where Joe resided. Due to cutting of funding by the Tea Party, the facility could not repair its air conditioning. Paul Ryan needs to stop claiming his healthcare cuts are “based on his catholic faith”. Pope Francis, the nuns on the bus and I disagree. I can speak from 75 years of being a catholic. Paul Ryan needs to read and live the bible and not Ayn Ryan.
11. Modern technology is a huge help to patients. Joe is able to use his lap top and his cell phone. He loves contact with the world outside of his facility. Television is also good.
12. Visit with and communicate with your disabled loved ones. Call them to say hello.
Write them. I know you will be a breath of fresh air.
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