“I love you, and will always love you.”
One mission of this foundation is to help prevent parents and loved ones from making the same mistakes we did. Every day with Patrick we were dealing with a person in a downward spiral and we were doing our best to provide a safety net and yet at the same time teach some life lessons. We were doing our best to set goals, dissuade detrimental behaviors, and instill better behaviors, but we were not making progress. We did not know Patrick had CTE (Chronic Traumatic Encephalopathy) but we knew something was wrong. We were unable to get any indication from the many doctors we took him to that CTE was even a possibility. We were in the dark. Our main mission is to spread CTE awareness as quickly as we can… so young men like Patrick, will be diagnosed and supported and kept alive until a cure is discovered. Currently diagnostic tools for CTE are in the research phases but as more people become aware of the disease and its presence in young athletes that will change.
In this article we want to share the experiences we had with Patrick to serve as a possible guide to caregivers on what worked and did not work while dealing with a person with CTE. Patrick suffered with CTE for a long time. It started gradually and progressed so slowly that none of us knew what was happening, yet we saw changes. As parents and loved ones our only goal was to help Patrick be happy and successful. But (and he used to hate that word) our outreach for help and advice and expressions of love were not received well and so off the mark. We thought we were dealing with a normal guy going through some tough times. None of us knew until the autopsy that Patrick had a disease. He wasn’t being inconsiderate, ungrateful, angry or lazy as it seemed so many times. He was experiencing brain malfunction. We always knew he was strong and could conquer problems and many times we pushed him to “get-it-together”, when all he really needed was a hug. And he needed a way to fight the disease that was growing in his brain.
Based on our experience communicating with someone who has CTE is difficult to say the least. The symptoms of CTE may lead the person to react to things irrationally and to misconstrue information. The brain in the person you may have raised/loved/cared for/befriended is gradually changing and sadly changing without their knowledge. You will see glimmers of the “old” person, but mostly you are dealing with an altered brain. And if your loved one’s CTE symptoms also include drug addictions or suicidal thoughts, it becomes even more complicated. But CTE is like any other terrible sickness. The goal is to help the person deal with their illness to the best of their ability and to cling to hope and positive thoughts. We want nothing more than to let the person know they are loved and they can get through this. Knowledge is power. The more we know the more we can help.
Below are some things we learned the hard way. Many times we offered advice or became frustrated or exhausted because we did not understand CTE. Our goal going forward is to help others, if they are finding themselves in our position. It is tough being a caregiver and we will provide links below to give some more resources for you if you find yourself in that situation. You will need a support network for sure so don’t be afraid to ask for help from family and friends. The sad part for someone with CTE is that everything is literally becoming unglued. As a caregiver, you are the sticky tape. It won’t fix things but you can help them hold as much as they can together. It is a huge challenge because it is unending and far reaching. But if you are successful you will have your loved one. And someday there may be a cure. We miss Patrick every minute. On Patrick’s last week of time with us he played his favorite game of golf three times with a best friend. It made us happy to hear because he was out of his room and enjoying life. Yet he came home frustrated because he lost three golf clubs in the process. We foolishly offered advice on how to remember where to put his clubs next time he plays. Ughh! Who knew. We didn’t.
We are not clinicians and doctors and any advice we give is based on our experiences with just one patient. Seeking professional help is a must and finding medicines to deal with some of the symptoms may help. Our hope is to give you one piece of a very complex puzzle. Every person is different, every brain is different, and every injury is different. Below are some things we learned the hard way. Regrettably we learned too late to share these with Patrick.
- First and foremost, let them know they are loved and you will always be there for them no matter what. Be their friend. Give them a hug even if they act like it isn’t wanted.
“I love you, and will always love you.”
“Call me if you want to talk later. It doesn’t matter what time.”
“Things may be difficult right now, but you are here. That is the important thing.”
“I love being your friend.”
- Show empathy. Say you are sorry and ask how to help. Don’t even pretend to know what they are going through. CTE is not visible to the naked eye, but it is there. And your loved one is struggling. Many times Patrick complained of intense anxiety possibly from a fear of not knowing what was going on and facing it alone.
“I am sorry you are going through this; tell me how I can help you.”
“I am here for you no matter what.”
“If you feel anxious give me a call and we can do something.”
- Become informed about CTE and the symptoms. Ask your loved one what it is like for them. Pay attention to what they are telling you and try to respond in a way that shows you care. Don’t pretend to understand, and don’t offer advice. Sometimes listening is the best medicine.
“I am reading about CTE so I can understand. What is it like for you?”
“If you’re having trouble with that; I am here to help if you want it. “
“I don’t know what to say except that I care.”
“I wish I could take your sadness away.”
“What is hurting right now?”
“It breaks my heart to see you going through this.”
- Look for ways to compliment them on their strength, willpower, and anything else that they are doing positively.
“I saw how hard you worked on that and it was impressive.”
“It was great how calm you stayed back there.”
“I love your smile!”
“You are a gift.”
“I need you very much.”
- Provide hope. There are many individuals living with CTE and surrounded by loved ones that are doing OK. To the CTE victim everything can seem hopeless. They may need prescription drugs to help with depression and mood. They may need help getting and keeping a job. They don’t need told they are grumpy, or too angry, or a failure. Suicidal thoughts are a major symptom of CTE so be careful.
“There is research going on out there to provide a cure. Stay strong and we will get there together.”
“You are here and we are grateful. We will get past this someday.”
“You are strong, heroic, and persistent and I am proud of you every day.”
“It is hard to smell the roses from a speeding train, but they are there. The train will slow down eventually. ”
“Be easy on yourself. You are an awesome person going through a hard time.”
- Be as understanding as you can. You may be presented with some of the craziest thought processes you have ever heard. You may see angry rants. Try to stay calm and let them know you are trying to understand. They may be experiencing a great deal of anxiety and need some prescription medication to help from thinking about negative thoughts. Don’t tell them to stop thinking about it, because it may force it to the forefront of their mind. Don’t say that you have heard it before or that they are focusing too much on the wrong things. It is good to hear their thinking to get a gauge on where they are. Sometimes the words and thoughts are scary and they may be scared too.
“Not everything will be right, but you are an amazing person.”
“Wow, I never looked at it that way before.”
“I can see how angry this makes you. How can I help?”
“After we are done talking about this, want to get out of here and take a walk.”
“You certainly make life interesting. I am happy you are in my life.”
“Let’s go to the gym and get mad at some weights.”
“I am sorry that upset you.”
“I blame the CTE not you.”
“You are always loved no matter what.”
- Be patient. Actions may take much longer than you would like. Continue to show encouragement as they attempt tasks. Don’t stress if tasks don’t get started. Making timelines and lists and trying to force actions usually only adds to the stress and feelings of inadequacy. And sometimes what is hard to do today can be easily accomplished tomorrow. They may not be procrastinating, but rather unable until ready.
“It’s alright if you can’t start that right now.”
“You did a lot already, maybe finish later.”
“You are doing great.”
“Take your time—we aren’t in a hurry.”
“How can I help you make this work?”
- Be there. Company is sometimes the best medicine. A CTE victim many times pushes away friends and loved ones and becomes reclusive. Ask them to join you or ask them if you can join them. If they do appear, be sure to show how much their presence is valued. Sleep is often very erratic. Let them know you are there for them no matter when. Sometimes their behavior may be so negative and hurtful that you find it difficult to be there for them. But they are hurting ten times more than we ever will.
“Want to go to a basketball game?”
“Can I come over to visit, maybe watch a movie?”
“Call me if you want to talk later, it doesn’t matter what time.”
“I am so happy you came here. You made my day.”
“Everyone would love to see you.”
“If you want company doing that I would love to be there.”
- Ask if you can help them with chores or bookwork. Sometimes the simplest tasks becoming daunting. They are not being lazy. They may also just be apathetic due to CTE or certain prescription drugs. They may not care if the house gets dusty. They may not even see the overflowing garbage can. They may not have the energy to mow the lawn. They may feel that no good can come from opening the mail. Becoming frustrated with their lack of action will only make things worse. Whatever you do, don’t remind them about how much you do for them to make them feel guilty or aware. Never blame their actions on prescription drugs, because they may stop taking them.
“I have to do laundry today, want me to do yours too?”
“I love doing bookwork, would you like help with yours?”
“I love opening mail and filing if you want help with that.”
- One of the most complicated symptoms of CTE is having difficulty with following directions, discussions, or events. The CTE victim can often do the opposite of what was agreed or discussed and fully believe they are doing what you asked. Don’t say they got it wrong. Be thankful they tried. Don’t try to get them to remember what you discussed. They can’t. And sometimes their interpretations of events in their life are totally made up. In their minds it is very true.
“Thanks for doing that. Are you happy with the outcome?”
“Thanks for the update!”
“That’s an amazing story.”
“I’ll call and remind you if you want me to.”
- Help them eat healthy foods, rest and get fresh air. Try to get them walking and finding things to enjoy. Don’t be disappointed if they can’t find joy in anything. Let them sleep when they can and maybe prescription medication can help with that. An injured brain is working overtime to do the littlest tasks and the more rested the better.
“Want to go golfing today?”
“Let’s take a rest.”
“If you need to sleep don’t worry, we will get it done later.”
For us, hindsight is 20/20. Our hope is to share our insights in a helpful way. There are many possible CTE patients out there with great support systems and loving families. Sadly, despite that, many have taken their lives. But our hope and dream is that we can keep them with us until medical advances can somehow reverse the disease. If you are a caregiver or doctor and would like to add something to the list, please contact us. We would like this to be a tool to save lives.
Find Additional Caregiver links on this page: