Taken care of a loved one with brain issues

Caregiver Research 

 

  1. Common mistakes caregivers make and how to avoid them
    1. Mistakes commonly made
      1. Don’t: Ask “Do you Remember?”
        1. Can be anxiety provoking and disheartening if they do not remember 
        2. Do: re-introduce people regardless of how close they are
      2. Don’t: Correct Facts
        1. Arguing with them about incorrect facts will not help and may cause confusion/anger
        2. Do: Just agree and change the topic
          1. If they are acting out, distract them with another topic or a task to do to get them to focus on something else 
      3. Don’t: Avoid the Past
        1. Pleasant memories can help lessen the load when things begin to get heavy
        2. Do: Ask them what they liked to do as a child, listen to music from their past, and/or go through photo albums 
      4. Don’t: Believe You Should Never Get Upset
        1. It is okay to be annoyed → all feelings are normal/valid 
        2. Do: If you get upset/annoyed and no one is available to give you a break, try to step back, take a few deep breaths, and remember that what you are feeling is valid and completely normal. We are all human and even our loved ones can get under our skin. 
      5. Don’t: Forget to Laugh/Feel bad for enjoying your life
        1. Don’t feel guilty for laughing or experiencing happiness
        2. Do: Although the patient may not understand what is going on, just hearing someone laugh or seeing someone smile may lighten their mood 
      6. Don’t: Ease Off on Physical Activity
        1. Staying physically active is important for both patient and caregiver
          1. Benefits both physical and mental health
        2. Do: Take them on walks/get them moving even if it’s just around the house. Have them complete tasks like putting dishes away, gardening, or cooking simple recipes (with supervision of course)
      7. Don’t: Hide the Illness from Friends and Neighbors
        1. Do: Share the illness with them. They can act as another set of eyes or a helpful presence if something ever goes wrong 
          1. The more people know, the more they can help 
      8. Don’t: Refrain from Asking for Help
        1. Do: Allow others to help you, and ask for help when feeling overwhelmed. Caregiving is a 24/7 job and is both physically and mentally taxing, no matter how much you love the individual
          1. Be direct with your needs, some may not know how to help
      9. Don’t: Refrain from Taking Time for Yourself 
        1. Your effectiveness as a caregiver decreases if you are not taking proper care of yourself
          1. Similar to putting on your oxygen mask on first before helping others 
        2. Do: Take breaks throughout the day (even if only for a couple of minutes). Participate in activities that make you happy/help you relax
      10. Don’t: Make Promises You Might Not Be Able to Keep 
        1. Many promise their loved ones that they will never “put them in a home”
          1. Sometimes this is necessary, both for the patient and the caregiver
        2. Do: Be honest/realistic both with the patient as well as with yourself (Say that you will always do what is best for them, even if they may not see it that way) 
    2. Often times both caregivers and patients have trouble accepting the severity of the illness
      1. May lead to ignoring/dismissing the person’s symptoms, which is not helpful 
      2. Denying their symptoms may lead to a delay in them obtaining medical attention while also impairing your own mental and emotional adjustment to your loved one’s needs 
  2. Strategies to help caregivers avoid burnout and feelings of frustration (towards themselves and those they are caring for)
    1. Caregiver Burnout: a state of physical, emotional, and mental exhaustion
      1. May be accompanied by a change in attitude, from positive and caring to negative and unconcerned. May experience fatigue, stress, anxiety, and depression 
      2. Burnout occurs when caregivers do not receive the help they need or if they try to do more than they are able (either physically or financially)
      3. Other factors that can lead to burnout: role confusion, unrealistic expectations, lack of control (over situation), and unreasonable demands
    2. Symptoms of Burnout
      1. Withdrawal from friends, family, and other loved ones
      2. Loss of interest in activities previously enjoyed
      3. Feeling sad, irritable, hopeless and helpless
      4. Changes in appetite, weight, or both/changes in sleep pattern
      5. Getting sick more often
      6. Emotional and physical exhaustion 
    3. How to Avoid Burnout:
      1. Find someone you trust to talk about your feelings and frustrations
        1. Can also turn to a support group (local organizations may provide these) → can also provide time away from the patient 
      2. Set realistic goals and accept that you may need help with caregiving 
        1. Delegate tasks between yourself and others 
        2. Know your limits and be honest with yourself about your personal situation
      3. Be realistic about your loved one’s disease → acknowledge when the patient may require nursing services or assisted living 
      4. Take time for yourself 
        1. Taking care of yourself is not a luxury. Rather, it is an absolute necessary for caregivers 
      5. Talk to a professional (therapists, social workers, and clergy members)
        1. Develop new tools for coping → use humor to help deal with everyday stresses 
      6. Educate yourself → the more you know about the illness, the more effective you will be in caring for the person with the illness
      7. Stay healthy by eating right and getting plenty of exercise and sleep 
      8. Accept your feelings
        1. Having negative feelings about your responsibilities of the person for whom you are caring is normal
        2. It does not mean you are a bad person or a bad caregiver
    4. Feeling angry/frustrated/guilty is natural and valid. These emotions are human and unavoidable. If possible, remove yourself from the caregiving role whenever these feelings crop up or take a few deep breaths and remind yourself of the importance of your role if you cannot get away.
  3. Deescalating an outburst caused by feelings of frustration/anger
    1. Causes:
      1. Physical Discomfort
        1. May have an infection that they are unable to articulate or identify due to loss of cognitive function
        2. They might be tired or hungry/thirsty
        3. Their medications may also be causing side effects, especially if their are taking multiple medications at once 
      2. Environmental Factors
        1. May be overstimulated by loud noises, physical clutter, or an overactive environment 
        2. They may feel lost
        3. Most dementia/Alzheimer’s patients function better in the mornings, so take this into account when making appointments or scheduling activities
          1. Sundowning: common symptom of dementia; a state of confusion occurring in the late afternoon and spanning into the night 
          2. Can cause a variety of behaviors, such as confusion, anxiety, aggression or ignoring directions
          3. Can also lead to pacing or wandering
      3. Poor Communication
        1. Make sure instructions are simple and easy to understand
        2. Try not to ask too many questions or make too many statements at once 
        3. They may also be picking up on your mood, especially if you are stressed or irritable 
    2. How to Respond: 
      1. Try to identify the immediate cause
        1. Think about what happened right before their outburst to determine what triggered this behavior 
        2. Try to stay calm, you freaking out will only worsen the situation
      2. Rule out pain as the cause of the behavior 
        1. Pain can trigger aggressive behavior for a person with dementia. Once the pain subsides, typically their outburst will as well
      3. Focus on feelings, not the facts
        1. Consider the person’s emotions, rather than focusing on specific details. Try to decipher their feelings from their words and actions (will help you differentiate between when they are in pain, angry/frustrated, or sad)  
      4. Shift the focus to another activity
        1. The immediate situation or activity may have unintentionally caused the aggressive response → try something different
        2. Try a relaxing activity → soothe them with music, exercise, crafting, etc.
      5. Ensure safety
        1. Make sure both you and the individual is safe
        2. If they cannot calm down, call for help (another family member or caregiver, the Alzheimer’s Association 24/7 hotline, or 911 if it becomes an emergency)
          1. If you call 911, make sure to inform the tell responders that the person has dementia which causes them to act aggressively 
      6. After the fact, share your experience with others
        1. Reach out to other caregivers or professionals (either in person or online) for strategies they have used in similar situations 
  4. How to determine when nursing home/assisted living placement is necessary 
    1. Every case is different (depends on how fast the illness is progressing, the resources their family possesses/whether the family can care for the individual physically/financially, etc.) → varies based on both patient and caregiver
      1. If you wait too long, there is a laundry list of things that could potentially go wrong
    2. Medication Management
      1. The nursing staff administers medications on a strict schedule and ensures the patient takes their meds (either in pill or injection form). They also look for an indications that a resident’s regimen should be changed
      2. While at home, caregivers must administer all medications and look out for signs that more/different medicines are required 
        1. Some signs that it may be time to move the patient to a nursing home is when the medications become too difficult to manage, if the patient’s regimen is frequently changing, or if the patient begins refusing their medications
    3. Mobility Issues
      1. At the end stages of dementia, patients have extremely limited mobility 
      2. It can become incredibly difficult/dangerous (if patient is larger than caregiver) to constantly move the patient around the home 
        1. Facilities are much better equipped to safely handle bathing, toileting, dressing, and other daily activities → they have the proper equipment, training, and manpower to assist residents and prevent accidents
    4. Wandering 
      1. If a patient wanders outside of their home without their caregiver noticing, a number of accidents can happen, with some even leading to a life-threatening situation
      2. When wandering becomes more constant, you  may want  to move the patient to a facility
        1. In these homes, residents are limited to specific spaces in the building and sometimes secured areas outside. These premises are heavily monitored and feature specific security measures to prevent them from wandering and getting lost/injured 
    5. Caregiver Stress
      1. Stress can quickly manifest itself in people of any age and can exacerbate even minor ailments
      2. Be honest with yourself about your emotional and physical limits while caregiving
        1. Placing a loved one in a facility does not mean that you have failed as a caregiver. Rather it reflects that you recognize that your loved one needs assistance that only professionals can offer (the patient deserves the best care, and sometimes we just do not have the training to offer the best care)
        2. Delaying nursing home care in order to not feel guilt/shame is far more detrimental to the patient than placing them in a nursing home even if they do not want it 
    6.  Rely on a plan, not a promise
      1. A patient’s daily care should not be substandard simply because of a promise their family made years earlier
      2. Make a plan before the patient reaches the stage of severe cognitive decline
        1. Allow them to be a part of the decision making process, let them choose the home they want to go to and determine when they want to be placed in said home (i.e., when they can no longer get out of bed without help, when they cannot prepare even basic meals, etc.)
    7. Placing a loved one in a facility does not equate failure. Rather, you are still caring for them and ensuring that all of their needs are met and they are receiving the best care possible
    8. There are also different types of facilities that a patient can move to, such as memory care, assisted living, and nursing homes. Having options is important, especially if your loved one is against going to a nursing home. 

 

Resources:

  • The 36 Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss

(https://www.amazon.com/36-Hour-Day-sixth-Alzheimer-Dementias/dp/1421422239/ref=asc_df_1421422239/?tag=hyprod-20&linkCode=df0&hvadid=312643571004&hvpos=&hvnetw=g&hvrand=10893513336980022451&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9025150&hvtargid=pla-437060210315&psc=1)

  • Charlie’s Place: Provides programs for Alzheimer’s patients as well as tips for caregivers 

(http://alzbr.org/charlies-place-activity-and-respite-centers/)

  • Alzheimer’s Association: Provides tips for caregivers along with in-person/online support groups and a 24/7 hotline (800-272-3900) 

(https://www.alz.org/help-support/caregiving)

  • Alzheimer’s Foundation of America – Caregiving Resources (fact sheets, free community classes, webinars, etc.)

(https://alzfdn.org/caregiving-resources/)

  • Memory Cafe Directory (places where those with dementia and caregivers can connect with others in similar situations to avoid social isolation)

(https://www.memorycafedirectory.com)

 

References:

10 Mistakes Alzheimer’s Disease Caregivers Make (https://www.healthgrades.com/right-care/alzheimers-disease/10-mistakes-alzheimers-disease-caregivers-make)

Common Dementia Caregiver Mistakes and How to Avoid Them 

(https://www.wehelpcaregivers.com/news/dementia-caregiver-mistakes/)

9 Mistakes to Avoid When Caregiving for Someone Living with Alzheimer’s 

(https://www.healthcentral.com/slideshow/mistakes-to-avoid-when-caregiving-for-someone-with-alzheimers)

Caregiver Burnout

(https://my.clevelandclinic.org/health/diseases/9225-caregiver-burnout)

Anger and Aggression

(https://www.alz.org/help-support/caregiving/stages-behaviors/agression-anger)

When is it Time to Place a Loved One with Dementia in a Long-Term Care Facility

(https://www.agingcare.com/articles/when-is-it-time-to-place-a-loved-one-with-dementia-188309.htm)

Signs it May be Time for Memory Care for a Loved One with Alzheimer’s or Dementia and Differences Between Types of Facilities

(https://www.dementiacarecentral.com/memory-care/knowing-when-its-time)

 

public speaking

Speech Anxiety

I remember vividly my father reading me books at night as a child. The way he emphasized every reaction of each of the characters in my stories while reading in a smooth uninterrupted rhythm. I remember being asked to read aloud for the first time in class, and constantly getting stuck on a word. From a very young age I built an anxiety around speaking out loud or reading aloud around anyone. No matter how hard I tried to say a sentence that sounded perfect in my head, it would always come out stuttered. I struggled making friends throughout grade school, because of my fear of being picked on or bullied because of my disability. My confidence and my entire mood were dramatically affected because I truly felt I would never be normal and get the right words like everyone else around me. I fell into depression in my teenage years and became a loner. People would whisper hurtful things about me in class, but I did not even care at this point. I was already my own worst enemy and no one was harder on me than myself.

I sought the help of therapists and counselors to help. Most of them tried hard, but they were no help to me. Until I met one woman who suffered from the same problem as me in her younger years. Her speech was superb. I remember listening to her story for the first time in disbelief because she told it flawlessly. She told me a secret that would become like a miracle cure for me. She told me to practice everything in the mirror before you say it. Think about what you want to say 3 times before it comes out of your mouth. In the beginning this made my responses very long and drawn out, but her story inspired me so much that I kept trying and practicing. Not too long after I was cured. My confidence was back, and I began forming new relationships that I never thought were possible. The heavy weight of anxiety and nervousness around groups soon faded away and I saw life in a new way. I am so hopeful for the future now because I know there is nothing I cannot do.

-Anonymous

park bench

Barbara’s Story of Suicide

I am writing this story today in support of the Concussion, Pain & Mental Health Awareness organization, otherwise known as www.CPMHA.com. as well as to honor my daughter, Erin, who took her life at 15. I never thought anything like this could happen in my life. After the initial shock, I woke up one day thinking, how could this be my life? How did this happen? Maybe this resonates with you as well, or someone you know.

This is a story that is becoming all to common in today’s world, suicide by our youth. As I attend & support our Palm Beach County Survivors of Suicide, I see the effects first hand and hear the stories of the families. Recently, I heard a statistic that hit me hard, it is getting worse, not better. The # of suicides in girls ages 11-15 has tripled since 2012. It is my wish that Erin’s life and our family story can help others outsmart this phenomenon.

I want to start by giving a brief background to show that childhood factors play a part in our future decisions. I never felt that I could be myself amongst my family, so I played at friend’s houses & put my efforts into school activities & sports, Cheerleading, Student Council and the National Honor Society.

I had a realization at a young age that I had a gift for noticing behavior patterns and went on to pursue a degree in Early Childhood Development. Even with this background, I could not save my daughter. Suicide is insidious and crosses all age, race and economic barriers.

Right now, I feel so strongly that we must be aware of our greatest future resource, our children. These are not easy times to parent, especially with social media, children living in a one parent household or a blended family home. Parental Alienation is also on the rise along with bullying & sports concussions.

After I married, I waited a number of years to have children. I wanted my husband’s career to be stable and lucrative, as well as our marriage. I wanted to be a “Stay at Home” Mom and raise our children.

When my 1st daughter was about 2, I knew that this marriage was not working. I experienced a lot of emotional abuse & I did not know how to rise above it. I was taught to be a victim and I found myself becoming depressed and having feelings of unworthiness. Just as I was about to leave I found myself pregnant with Erin. I was really afraid to leave for a number of reasons so I kept setting mini goals before I would file. For example, I’ll leave when Erin is out of diapers, then I’ll leave when she goes to pre-school, etc., but Erin was a very difficult and conflicted child and parenting was exhausting and stressful. I couldn’t put my finger on how to help her. I sought professional help for her in spite of my former husband’s efforts to block it. I knew there was something wrong, but no one could diagnosis it at the time. I even had Erin court ordered for counseling, but she was told by her father not to share her feelings and she didn’t.

As a mother, my intuition was very strong. I could not shake the feeling even when professionally trained therapists could not find a diagnosis in the DSM book, that there was something wrong ,however I began to doubt myself. It takes a lot of tenacity to stay on this journey, but her behavior was proof of a problem.

Several days before my daughter took her life, I went to the Adolescent Psychologist, that Erin had just started seeing. I told them that I had an overwhelming sense that something was going to happen and we had to do something. I was adamant & extremely worried. The receptionist said that there was nothing we could do. We had no evidence that would support Baker acting her (she wasn’t on drugs) & they would just release her, but I could not shake this feeling. I had nowhere else to turn and my former husband refused to communicate, so I waited it out on pins & needles. I had exhausted all means that I knew of at the time and I just turned to prayer. This was between 1996 – 2002 and there were not that many resources available that I could find and this subject was pretty taboo.

Then, the worst thing that can happen to a parent happened to me:
My daughter, Erin took her life. I remember getting a call to come to my ex’s home right away. He never called or communicated, so I knew something was very wrong. Erin had hung herself in her dad’s home while he was home. She had been acting out that night & wanted to meet her friends, but was not on drugs or cutting or anything we know of. Her dad told her something that she didn’t like and she went into the garage, found string and sat in her room braiding string to hang herself. To this day, that just amazes me that she spent all that time braiding string to be strong enough & that he was home.

Erin's Bench

Here are some lessons that I know now from my circumstances, however, each story is unique:

Lesson # 1 – Trust your gut & heart no matter what someone says. I could do that now, but I didn’t trust enough then. Even professionals are wrong. Seek out the support team that you feel is the best you can find and trust them. Suicide is unpredictable & oftentimes there are no warning signs. In fact, the victim often is happier and throws us off prior to because they make up their mind & feel relief. I know that was what Erin did and I hear it over & over again. We thought she had turned a corner and was settling down.

Lesson # 2 – Put the oxygen mask on & take care of yourself (this is easier said then done, I know, but being aware that you are helping your child when you do this makes it easier, even with sleepless nights) Eat healthy, mind your thoughts, exercise and meditate. When I practiced this, it was easier to cope.

Lesson # 3 – No Matter What, put differences aside and work together for the benefit of your children, (even in healthy relationships there can be disagreements on how to help your child) … you are risking their lives. It is a game of Russian Roulette – it may not be death, but it will affect their future. Get your ego out of the way. Conscious Parenting is a great skill & tool to use when parenting.

Lesson # 4 – Have courage to do what you need to do. It is not heroic staying in a bad relationship for the sake of your children. I was so beaten down by the time that I did leave, that I couldn’t make the best decisions and was depleted. I also think that I was afraid to leave because I didn’t know how my husband would respond and what he would do. I think many women face this, especially with a challenging child. Another contributing factor at that time was that, the norm was to “Stay and Make it Work at Any Cost.” I believe staying too long cost my daughter her life. The circumstances kept getting worse.

Lesson # 5 – Keep searching for the right information. We didn’t have the internet back then. I even went to a Professional conference for Psychologists and Educators that my therapist recommended trying to find help for Erin. I think that she might have been Biopolar (no one talked about that then) or had something called Oppositional Defiance Disorder. We will never know for sure.

Lesson # 6 – Reach out to find others going through this, you can’t do it alone. There were not many support groups back in those day. We didn’t have the internet. Now, the world is available to you, even internationally. Find groups to support you. I found a 12step program & church groups, but not much was available back then. More things are becoming available today for us. Just today, I saw an initiative being put together by Deepak Chopra: neveralone.love It looks great.

Lesson # 7 – Be discerning who you listen to, everyone wants to give their opinion. It is often hard for people to believe that this could be happening, especially if they are in healthy family situations. You can get judged that it is you and you are crazy and this really affects your efforts and judgement.

I hope that the story of my daughter Erin can save even one life & bring more awareness to this issue. Thank you for allowing me to share my journey & my daughter with you. — Barbara

Erin’s life put me on a different career path with a mission to help others:
I focus on a Full Spectrum of Health: physical wellbeing, emotional wellbeing and mindful practices. I specialize in the aftermath of Trauma, Trauma Recovery practices, mindfulness and Activating your Body for Health. I am a speaker, I conduct private sessions for Trauma Recovery as well as workshops to help mitigate Trauma as it is occurring. I also have a Global reach in a new paradigm of health, Nutrigenomics, the practice of Activating your body vs Supplementing your body and how Nutrition affects your genes. It all matters.

CTE Diagnosis

View Paolo’s report confirming his diagnosis.

Paolo’s progress continues. He  also had new blood work done on 5/23. You can click below to to see the change in his numbers.

“Since I stopped the process sugar you will see a weight change and vital change compared to their original.”

View Report

Paolo’s Working Journal

First symptom or sign of Rage to physically hurt others but did not act out thankfully handle it differently. What triggered me I think was the frustrations not getting return calls from doctors and the way they talk to me. Now keep in mind I use my checks and balances system for every good and bad behavior. The story is as follows.

Somewhere around mid-May, my doctor noticed my hemoglobin was elevated and ordered a fresh panel of our posted bloodwork. He then left for vacation. I went to Quest Labs and the technician, while drawing my blood, said she worked at a blood bank and that my blood was like red glue. I could be at risk for a stroke or heart attack and I should contact the doctor first thing in the morning and have them write a prescription to have a pint of red cells taken out. This procedure in my scenario is based off the hemoglobin count. It has been known to help with inflammation pain hand is great for overall health. I took her advice thanked her because she is not supposed to talk to the patients she said. She’s only supposed to take the blood as the test required. Their staff was kind and compassionate. The following morning, I knew my doctor was on vacation, but I left three messages over the course of the day for the nurse’s assistant who works under my doctor to call me back so I can have the description and the procedure done. No one called me back. I repeated the same process leaving polite messages knowing some things fall through the cracks and I do not want to come off as being aggressive or a hypochondriac. The third day I went to the office personally to figure out why I’m not getting return calls and requested the procedure and prescription. They said there was no one in the office at that time that could write the prescription. Then the following day I called and asked for the office manager to let them know that no one’s getting back to me. They told me she left for the day, but the nurse’s assistant is in and they will have her call me back. Finally, the nurse’s assistant called me and said, “how can I help you Paolo”. I didn’t want to go backwards and point out how unprofessional their office is with returning a patient’s call. So, I just addressed the issue and told her what the technician said. I said my lab work is back and can you take a look at my hemoglobin count and tell me if it’s abnormal. Normal from my understanding is a score of 11. She said it’s just slightly elevated and the doctor on call will not write you the prescription that I would have to wait until my doctor got back in town. I am still using my coping strategies and breathing techniques to remain calm. Inside my head, all I can think of is I’m at risk at having only a slight stroke or heart attack. This is a perfect case for malpractice. But I do not have the strength to find another doctor or practice that takes my insurance. I took it on the chin and just waited it out until June 13 where my doctor came in. Now I’m a grown man, but I had my father and best friend come with me, so I didn’t pop off or miscommunicate or not comprehend what they were telling me. The disease is the reason why I use my checks and balances system; I have to always make sure my mind is not playing tricks on me and I am living in reality.  My doctor called me in. I did not even bring up the events prior. I just sat calmly as he read my bloodwork. And he said “oh yeah you should need this prescription for the bloodletting every eight weeks” my hemoglobin counts war 16.5 where they should be 11. I just laughed.

If I would’ve took out my anger on my doctor, then I would’ve lost a vital piece of my support team to get my medications. So that was probably trigger one.

 Triggered 2:

I get a call and I usually don’t pick up numbers that I don’t recognize, and my personal number is not listed on the site, but I picked it up and it was a kid asking, “Is this CPMHA”? I was little rough because I thought it was somebody soliciting something. So, I asked who this is and what is it regarding. He said his Name was X, that he’s a high school football player and he thinks has CTE and was crying on the phone. I told him to calm down take a deep breath. Then told him, first, if you read or got our information from the website, we have disclaimers everywhere. I am not a doctor or a licensed therapist. I am strictly Sharing my story. The good, the bad and the ugly with complete transparency. So those who are following us might identify with one of my symptoms on CPMHA.COM  whether it be TBI/ CTE, chronic pain or mental illness that I suffered from and learn coping skills/ techniques that have worked for others and see if they can apply for some relief or be motivated to help others. He then said I’m sorry to bother you. but I just want to kill myself right now and I wanted to learn more about CTE.

After hearing that, I went into protective Paolo mode, one of my core values/Life codes. I remembered when I spoke about this topic(suicide) with Dr. Russell Bourne. He said, when someone brings up suicide, it’s healthy to talk about it, the worst thing you could do it Is to shut that person out.

So I said to X, “it’s okay bro”, first thing I want do is give you a phone number to call someone whose professional so I don’t give you the wrong advice so I gave him the suicide hotline phone number. Then I said after I get done talking to you, you must promise to call that number and he said okay.

Now I was in a position that I did not want to be in giving advice because I am not a professional.

So, I asked him, what are the symptoms making you want to commit suicide. He said he had a concussion two years ago and now he is gay, and his parents hate him, and he hates himself for being gay. I took a deep breath and reiterated I’m not a doctor, but regarding the concussion, you should get an MRI of the brain and see a neurologist and tell him all your symptoms and history. Be completely honest, even if you’re smoking weed or taken any other medications. He jumped in right away and says he doesn’t drink or do drugs. I said cool, good for you, you’re a better man than I am already then I proceeded to say, “From my personal experience and research I have done on my own, CTE is not caused by a single concussion. And I might be wrong, but I’m pretty sure that a concussion cannot make you gay. I have heard a crazy story, I don’t know if it’s true, but during my research I found a story of a woman that had traumatic brain injury from England started speaking with a Chinese accent out of nowhere.

That said, if you are truly gay and that’s what makes you happy, what’s wrong with that. The world is changing every day, people are more open now. If you are gay, it’s not something you should be ashamed of. I have plenty of gay friends even though I’m straight and some of my gay friends were professional athletes. One in particular was a hard-core Navy seal who served our country proudly and is hero in my eyes.

Then I asked him, if he had anything around him that could harm himself. He said yes. I have my gun in my hand and I want the pain to stop. I said strongly X, if you want to talk to me anymore, which I’m willing to do. I want you to take the bullets out of the gun while you’re on the phone with me and put the gun under your bed. He said okay, and I actually heard him following my directions. He then thanked me for talking to him. I replied, “Good man Now we both need to take a deep breath and chill for a second. because I’m freaked out X.” He then let out a little laugh. Which made me relax a little bit.

Then I started the conversation back up and said I have a policy I don’t talk about politics or religion because everyone has the right to believe what they believe and from my experience. If you’re not on the same page talking about those sensitive subjects, there can be conflict and I’m not about conflict. That said, I told him I was in a lot of pain, physically, emotionally and mentally; I wanted to end it. Anything to make the pain stop.

Now what you call pain and I call pain could be to different things. But pain is pain and it sucks, and I hate to see anyone suffer. But, thankfully, I spoke to an amazing man; who is now my cognitive psychologist. He didn’t try to talk me out of committing suicide, but rather he just listened and did not judge me. Then he proceeded to calmly and with compassion educate me on suicide.  Telling me that suicide is usually a mental health impulsive behavior obviously once you make a final decision there’s no coming back.  Then he said from my experience anything impulsive: sex, buying something, etc. Is not a good or healthy thing. Then he gave me a tool that I use all the time, called three-day rule. I explained it to him and told him that it will be

posted on the website soon. Then I proceeded to tell him that if your feelings are true and your gay so what?

Let’s paint a different picture then tonight Its dark thought you did a good thing you reached out to a complete stranger for some answers that’s pretty brave and you have my respect.  So, you go off to college, besides getting an education and degree. You grow as a human and find yourself. Then say you are gay, and you come to terms with it. You find a partner and fall in love and are happy. But if you kill yourself right now. You will never get to experience that amazing feeling of falling in love. But I can give you this advice don’t get married until you’re at least 30 Play the field and be safe. He laughed and said wow I feel a lot better and thank me. I replied don’t thank me you were the one brave enough to fight through the darkness and pain and reach out for help. So, I said are we cool X can I sleep well tonight knowing that you’ll call and speak to a professional and get different advice that will help you. He said yes sir. I say good because I have a crazy migraine and I need to rest, and we hung up the phone. 45 minutes pass approximately my head is pounding I am icing every joint in my body just about to fall asleep.

The phone rings again but it’s a different number. I pick up there’s a woman on the other end of the phone, angry saying who is this. I said you called me who are you. She said I just got done talking to my son. He said you spoke to him and told him it’s okay to be gay. Who are you to tell my son it’s okay to be a sinner? Now I’m a little pissed off, I said ma am your son called me, I was just trying to help him did he tell you that he has a gun in his room, and he wants to end it. She said well that’s not your business, are you at doctor. I said no ma’am, I’m not. She responds with, let me ask you this do you believe Jesus Christ is your savior. I said what the fuck are you talking about. She said that means no, I guess. You’re going to burn in hell. If you ever contact my son again, I’m going to send the police after you and sue your ass then she hung up. I was so confused/Troubled then anger ensued.

Trigger 3

My partner/ girlfriend is a good Christian woman and a southern woman. We are polar opposites except I am extremely stubborn so is she. I am street-smart New Yorker and self-taught entrepreneur. She is not and everything has to be by the book. She was screwed over by her ex-husband and I have trust issues. So, I think I’m being pretty fair and transparent. I do not want to be throwing her under the bus at all.  Because not too many women would stand by their partner who is dealing with my situation/ illness.

Last week my Little brother Andrew and ambassador to CPMHA, Alex, were over my house and helped me to pick up my dog, Jackson, from physical therapy because I was too dizzy to drive.

He is recovering from an ACL surgery. Prior to the surgery, I went up to talk to the vet who was going to perform the surgery on Jackson.

In the past, I sent a lot of my former athletes to a specialist and I have a little bit of knowledge on ACL surgery and recovery. I talked about it to the veterinarian how about the process in the cost. I made her aware of my financial situation as well as my medical condition and told everyone in the staff about CPMHA and ask them to spread the word and support us. The veterinarian told me the cost would be $ 2300 for the ACL surgery, $170 for the physical therapy consult. Then it’s $150 a physical therapy session.

So, the New York Street hustler in me came out, and I said listen, I am a former professional sports performance coach. I would never have anyone I care for just have surgery and no physical therapy it’s a waste of time. Can you work with me on the price? She said yes if I sign off today it will be $4700. That would include unlimited physical therapy and the surgery but not the medication. I said that’s fair let’s proceed. Three weeks go by and I take Jackson for his second physical therapy session. And they tell me that the veterinarian, Dr. Evans, was fired and is no longer working with them. But it’s okay, I will be working with the main the veterinary who owns the practice and he’s a better Vet and I will be in good hands. So, Jackson’s physical therapy session was scheduled twice a week approximately 10 days ago, with Alex staying in the car, I walk inside to pick up Jackson from Physical therapy. The physical therapist tech brings Jackson outside and says he is doing great. We are going to cut back his physical therapy to once a week. I said why as soon after surgery he still can’t put pressure on the leg. The tech is giving me all this roundabout talk. Finally, he says when someone’s package is coming to an end, we try to stretch it out and cut back to once a week. I said package coming close to an end, what are you talking about? He tells me that I had a package of 10 that cost $800. I said fine, so where did the rest of the money go? I paid $4700. The surgery cost $2300 now you’re telling me physical therapy package of 10 which we have not even used yet is $800. If you add those together, that is only $3100, we are missing $1600, where did that money go. The tech goes back in the room and calls a bunch of the staff wait a half hour comes out and says we will have to go through the receipts and get back to you, I only do the scheduling and do the physical therapy with dogs under Dr. Chang. I said fine, mistakes happen, as long as Jackson is taking care of, we are all good.

The next day Sherry gets a call from Dr. Chang, the physical therapist, saying the whole staff was afraid of me and they know I have a mental illness and they feel uncomfortable if I come up to the office anymore. I was blown away completely speechless over the phone.

Sherry was at work and I could tell she was all stressed out. So, I decided we talk about it later. I proceeded with my day of doctor’s appointments and made sure the house is clean so that she was not in a stressful environment when she came home. She walks through the door looking stressed and out energy and I ask her just to give me 10 minutes of peace and leave me alone so I can compose myself because I’m hypersensitive. She doesn’t give me more than two minutes before she rants to me about something stupid and I pop I yell and say you can’t give me 10 minutes after I busted my ass all day. Now no matter how sick, I will never put my hands on a woman or child. I could feel this rage inside of me that I used to feel when I was a fighter and I did not like that feeling. I just walked away and went in my room to decompress.

She comes in calmly in about 45 minutes and I can feel myself still in that bad place she says can we talk. I said no I really need to gather myself will talk tomorrow, thinking I was doing the right thing. She then proceeded to say, well look, I spoke to the doctor’s office. It is what it is, Jackson only has three more sessions left they’re afraid of you and I feel very uncomfortable. I explode, I said you’re going to take their side over me. She said well you’re always doing the street hustle deals now veterinarian who you made that deal with is no longer working there and it’s your word against theirs and obviously you opened your mouth about your CTE, so you have no credibility.

My hands were shaking, I said are you kidding me we have receipts, it’s simple math. She said she cannot deal with the stress or confrontation; it is what it is. I said no, it’s not that’s not how I work. When I make a deal, I stand by mine part and I made sure the other people standby theirs. I’m sure as hell not going to let somebody steal a dollar from me. Then I said something cruel and I regret. I said I’m not like you; you make stupid mistakes and let people walk over you. You payed a contractor upfront in cash to do work on the house then they never come back and finish the job and you lose the money and you just take it. She starts to cry. Leaves the room says she’s never had anybody ever talk to her this way or be so mean.

I know I am far from being saint when it comes to dealing with men you do not want to mess with me. But when it comes to women children or animals. I know I’m not perfect, but I know I’m a good man. Yes, I’m a passionate, loud, Italian New Yorker when it comes to confrontation or disagreements. Especially now, with what I’m going through not that it’s a good excuse for anything but every day the smallest thing I work hard to make myself meet one main goal: be a better person to myself and to others. I thought I was doing a good job. I told her not to worry, I love her, but I might need to go a hotel for the night to gather myself and I think I don’t know if it is healthy for me to be living under the same roof with her. If I am hurting her in any way or making her life any more difficult and stressful. I knew this disease would be a strain on my relationship, but I didn’t think it would happen until I physically started to breakdown like an Alzheimer’s patient where I’m not even close to being in that category yet.

So, I drove to the beach I meditated ended up breathing exercises for about an hour. Unfortunately, Dr. Bourne was on vacation, so I did not want to cross the boundary and call him for direction. But I couldn’t get rid of this rage also the feeling that I was going crazy that I was not in reality, and I felt betrayed by Sherry. That she didn’t have my back, so I feel like trust was broken. But using my checks and balance system. I reached out to my mother and father to run the story by them to get and impartial reaction. I explained it to them my energy was intense my mother said I’m looking at you right now and I’m afraid of you. My heart broke. My father said you can’t blame Sherry she does not come from our world. You should kiss that woman feet for sticking by you when you’re this sick. So, what, if the veterinarian’s office ripped you off the $1600. I know you telling the truth because I remember you telling me everything as it was going along. But is $1600 Worth hurting Sherry? I took a deep breath and said no but I just can’t handle somebody take advantage of me, and then on top of that They played a mental illness card.

I started to get heated up again thinking about it. You’re telling me you would let somebody rip you off. That’s why I can’t come to you guys and I must use Dr. Bourne. Then my mother chimed in she said she was bought up on the straight narrow my father always hustled for everything and at the drop of a dime he could become very scary people. It took a long time in our relationship for me to adjust to the way he conducts business. And you’re just like him but the major point your father said is $1600 Worth hurting Sherry for all that she is done for you and been there for you.

That’s the big picture. It struck a chord with me. At my age, I have to re-create myself, so I took this it on the chin and I apologize to Sherry. And I told her, if she wants to handle the vet from now on and that’s what makes her comfortable, that’s what I’ll do. My feelings and energy towards her have changed to be honest I feel a little betrayed but I’m hoping I will get over it. Just like she tries to be patient with my garbage.

Hopefully I can use this is a learning lesson to control any anger or frustration in the future to breathe walk away from a problem discuss with the support System and turn the negative into a positive and be productive.

Latest Trigger/ Two sides to every story (Week of February 15th):

I almost let the beast out but I try to bury those feelings and never break my code of putting my hands on someone that’s weaker than me physically or emotionally whether it be a woman, or a child or an animal no matter what the situation. There is no excuse. Thankfully I haven’t acted out physically and I have myself under control.

Case Study – Day 15

I have the house to myself, just me and my two dogs and there is complete peace and great energy. Pain and migraines are pretty bad as expected, but my neck and joints are feeling a little relief. There has been no ringing or sounds in my brain or senses. I’m extremely upbeat, motivated by the support of my small team of Andrew and Sarah and I am calm and have no anger working on coping skills for dealing with frustration and I think is working. My memory, concentration and vision have all seen a decrease. I went through my old workouts reaching back to 2015 when I started the CTE symptoms on a very small scale. I decided to push through the pain and do a very small-scale nonfunctioning strength test today. I could barely do three sets hope 20 push-ups. Back in 2015 I was bench pressing 395lbs one set of five. One set of three in the last set of one at 400lbs again this was not a functional or suggested training technique.

Case Study – Day 14

Finally, my doctor was back from Italy and wrote my prescription to have a pint of blood taken out to reduce my hemoglobin count which was 16.5 and should be in the range I will 11. I had a painless procedure done that in all took about 40 minutes with an appointment. I noticed a little reduction in pain in my neck this morning no nausea.

The Benefits of Bloodletting

  • May help stave of illnesses. …
  • May reduce risk for cancer. …
  • Reduces hardening of the arteries and heart attack risk. …
  • May improve insulin sensitivity, thus decreasing risk for type 2 diabetes. …
  • Burns calories. …
  • Regularly purging yourself of iron is particularly beneficial for men’s health.

Also, another note regarding medical care and doctors that fall under my insurance:

The neurologist I must use now is Dr. Jeffrey Rubin. My first visit I was in a lot of pain and frustrated because the only reason I had to go to him now is to get my Xanax refilled because the new drug laws. I told him that I have post TBI/CTE he did not know what CTE was. Then after I told him I suffered multiple concussions mostly through fighting and football. He said, “oh, you’re what we call punch-drunk” which is ridiculous coming from a doctor. I bit my tongue. He was pretty nice overall. He’s from Canada. He went through a long story about speaking Italian and told a really poor joke which took 20 minutes or more.

After he did a memory test. He asked me to write on the paper. what is the first thing that comes to my mind? I wrote your jokes are terrible and don’t make me feel any better trying to be funny. He wrote the prescription and walked out offended. I realized I might’ve made a mistake. I walked after him using my cane and told him I was just being sarcastic, and I have a strange sense of humor and I hope I did not offend him. He said I’ll see you in three months and walked away. So, my goal was over those three months I would be able to get away from using Xanax, but it seems that will be delayed until September or October. I have been making so many different changes with my body. This particular medication has me in the lock. So, I wrote him a nice polite letter telling him. I would like to apologize if I offended him. And since I have no other neurologist that are working with me if you would like to be one of the many doctors on the case study. I went to his office in person left the letter as well as the bloodwork that I would be requesting, website information, Palm Beach Post article on my disease, and let him know my goal has shifted. I would like to stay on the Xanax until September or October and then have him work with Dr. Russell Bourne to help me get off the Xanax and possibly nonaddictive anxiety/ stress medication. That was approximately a month ago my next appointment is July 1.

So, anticipating on July 1 I will need a refill for the Xanax, and he won’t be cooperative. I have left several messages at his office asking him to give me a call back. And I have never received a call from him or his office. All I could do is hope on July 1 that will be issuing a refilling for my Xanax and continuing with my plan. Anyone that is ever contemplating taking Xanax or any benzodiazepine if you learned nothing else from this website, though I am not a doctor or a licensed therapist and I cannot give advice, but in my opinion on this one subject of medication do not take this medication longer than a week. Once it has a hold on you not only can you die if you stop taking it, but after three weeks it doesn’t work anyway unless you up the dosage.

Case Study – Day 13

I am still not able to do my gym session. I met with my primary care doctor and I got my bloodwork back; I will be posting it on the website. My vitals and blood pressure are better, and my pulse was great. I lost 14 pounds.

I am introducing spaghetti squash, with Rao’s marinara sauce, it’s the only sauce I’ve ever have and it’s the closest to what I make. I also added sweet potatoes and I am going to be having Cheerios every day to reduce my cholesterol. I also found a great product from Trader Joe’s to curve my sweet tooth and sugar cravings; it’s called simply light fine chocolate bar, and it contains no sugar added zero trans fats gluten-free. This can be a lifesaver for me at night with my cravings I can have a couple pieces and drink a lot of water. If something is too good to be true you know the saying, I’ll have to do my research on the product because on the back it says 2 g of sugar and 9 g of sugar alcohol which I don’t know what that is.

Case Study – Day 10

I noticed all my nausea is usually early in the morning, could be contributed to my disease, sugar withdrawal, or my last dosage of one mg of Xanax, I take it between 10 PM and 11 PM to calm my body and mind. It’s been two months that I have been trying to get off Xanax. But since I went cold turkey off of all opiates/pain meds; I’ve been pivoting to only eating plants, fruits, walnuts, almonds, pumpkin seeds, almond milk and water. I was holding on tough on meal plan. Until four days ago when I was triggered with frustration and anger. Two days ago, I was able to walk the dog for 20 minutes and push through extreme pain in my joints, back and neck as well as chronic migraines. I was not even walking that hard when I got home, I probably sweated out 2 pounds of water and felt like I ran a marathon, breathing has been a challenge.

Tonight, I woke up at 1 AM my mind was racing thinking about all the things I need to do this week, and due to the lack of support in our cause, I relapsed. I had a handful of Potato chips and eight mint chocolate girl scout cookies. It helped with the craving, but my body wanted me to eat the whole bag and all the cookies, so I’m still not satisfied.

I went online and tried to be productive, going to Joe Rogan’s podcast and watching an interesting YouTube video on crazy health benefits of sauna by Dr. Rhonda Patrick.

I’ve been doing a lot of research on the benefits of ice and heat. Though I have my limited education, I continue to research with a desire to learn more. I was always taught never to stay more than 15 minutes in the sauna because you could die of heat stroke. The sauna was one of my methods during my fighting and wrestling weight cutting days. Hopefully this week, I will be better disciplined to my meal plan and I really want to push to get in a gym session in hopefully I can motivate myself to get energy and block out the pain and other obstacles holding me back.

Case Study – Day 7

I am still feeling extremely nauseous and have a lack of strength and the sweats. Weird dreams that I can’t breathe in my sleep wake me up. Numbness in my arms and chronic migraines and dizziness hinder my actions. I’m going to stick to the nutrition plan adding some watermelon and pineapple for sugar. I am stopping all supplements except turmeric for the pain. I was able to walk the dogs and pushed through the pain for 20 minutes.