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Need help? Simple tips: Where do I go? When? How can I ask for help?

30 Mar

So many might think asking for help comes naturally.  Millions of individuals never need to ask for help, hence they do not know how. Of all these people life goes on without great difficulty because they easily deal well with daily living…until that event occurs that changes their lives forever.  Until that time you probably were independent with everything in your life organized and successful.  Most likely, you put others first and everyone seemed to look to you for answers. Unfortunately asking for help following a brain injury sometimes seems impossible simply because all the other consequences of this devastating injury.  It’s a travesty that with all the recent media attention so many are struggling with life altering changes that fluctuate from day-to-day and year-to-year without rehabilitation or help.  Others simply do not understand.

The first key to getting help is to find someone who listens! After getting someone to listen I have included several different ideas to ask for help and receive it for traumatic brain injury, spinal cord injury and other chronic illnesses as well as any life problems to reach your highest level of functioning. Educating one person at a time may be the closest solution to the problem and this will probably occur quicker by those who are injured than any other sector in our society.  You may need to just casually mention “I have a brain injury” when you feel rushed, or confused in the presence of strangers.  This isn’t a plea for empathy, sympathy, or anything personal. It’s just an opportunity to educate with the hopes that others may understand or become interested in this complex and invisible injury.  Nothing else needs to be revealed. These are practical ideas for anyone needing helping.

In my experience as both a professional and a challenged traumatic brain injury and subarachnoid hemorrhage survivor I’ve come to one obvious conclusion.  Individuals with a higher level of functioning prior to injury typically receive less treatment simply because they appear much better than their counterparts.  These individuals had a higher level of functioning initially, and they now become what the healthcare community portrays as “normal.”  So, how could they understand brain injury if they don’t know the individual and believe you are “okay” or “normal”? The healthcare professional findings of objective data include your overall-appearance, speech, and vital signs.  This does not include any subjective and objective symptoms both reported by yourself and the family of how you are able to function daily in your own environment.

Nonetheless, if you fall significantly below the level of “norm” the injuries are no longer invisible and healthcare believes it is the brain injury issues and they attempt to intervene. This happens even when the family says they are at their baseline.  They can’t fix something that hasn’t been broken…but they try just because their situation appears unusual.  How do you rehabilitate someone that hasn’t been habilitated to begin with?

On the other end of the spectrum, social status also plays a role in who gets treatment and who doesn’t.  It’s truly not all about insurance, no insurance, worker’s compensation, or federal compensation systems, albeit still a financial system it is depends upon proper diagnosis. Without a proper diagnosis it is impossible to receive treatment.  Everyone is entitled to the same level of ongoing or intermittent rehabilitation for any permanent and life altering situation that leaves them vulnerable forever.  Brain injury survivors go through constant adjustment and re-adjustment with little time to adapt because of the unpredictable daily life experiences.  They need support continually and not dropped from treatment programs or totally excluded from treatment because of so many variables and many unjustifiable.

All too often one’s social status or so-called value to mainstream society is used as an unfair criteria to the type or length of treatment they receive. This is evident in the type of treatment a celebrity, politician, or most professionals receive as compared to the average or below average citizen.

Have you ever considered how you would go about asking for help if you never have before? That’s probably not a question you even contemplated.  So now you have found yourself at a turning point in your life and in crisis.  Now you need to get help and simply don’t know how to ask.  You may have had a stroke, heart attack, brain injury, spinal cord injury, illness or disease. How do I ask for help after these injuries or chronic illnesses?   What is it that I need, and how do I get there?  The way you ask for help may have some bearing on how you are treated when you are asking for help in healthcare.  This holds true when asking for help in your daily life as well.

Here are some simple tips to prepare yourself in the process of asking and getting help after brain injury.  The when, where, why, and hows you need … to get you help.

First, you need to journal what’s happening in your life and advocate for yourself.  Some individuals do not have the capability of documenting or journaling so someone definitely needs to be their advocate.  We don’t want those people pushed into our prison system and nursing home without rehabilitation for any time let alone till their death. You will need your journaling to help connect the dots to resolving issues along the way.

I urge anyone knowing someone with a new, recent or old brain injury to help these people and reach out for further education, understanding and support so they can again return to some form of functioning that helps enhance their life.   

You need to answer the following questions to be as clear and concise in your ability to ask for help.  These answers should also help with your problem solving abilities. You might need to review and revise this list once a week or once a month.

  • What is the best time of day for you?
  • What do you do during this time of day?
  • What can you do on your own?
  • What is the most bothersome problem?
  • When is the most physically productive time of day?
  • What is the best time of day for you emotionally?
  • When are you thinking the most clearly and logically during the day?
  • How is your sleep patterns?
  • What do you do for spiritual healing?

Examine the above list to help you identify areas you need help.   Here are some gentle suggestions to communicate your wishes while asking for help.

  • I’m working on my memory but ________________  is what’s happening and I’m having difficulty dealing with all these issues at one time.  I need your help to improve my health and life.
  • This has been a long journey, I’ve come far but I need help doing this ____________
  • I noticed that no matter how hard I try I’m still having difficulty with this ____________ and I need you to help me with this matter, or with sincere appreciation refer me to a brain injury rehabilitation specialist____________________________________.
  • I appreciate all your help, and I know you would not mislead me by referring me for further therapy so I can achieve my goals of __________________________________.
  • You’ve been there for me for such a long time and your gratitude is so appreciated.  I’m finding I still need help in these specific areas_________________________________.
  • I’m not asking you to be critical of my personality or make false allegations against my character.  I have enough to deal with.  I am asking for your help so I can live my healthiest and reach my optimal level of functioning, even if it has been altered as a result of injury or illness.  I believe you will help me because you’ve been monitoring my needs and _______________________________________________.

Write down everything before you are going for help, either to appointments or on the telephone.  You can hand a copy of your agenda to the healthcare professional and they will read it. It’s usually easier to make an outline of what you want to accomplish at your appointment. If you have difficulty with sentences, especially when stressed feel free to write out the entire sentences.  You need to ask for help, whether it’s on paper or verbally.

During an appointment tell the examiner, physician, or healthcare professional upfront that you have difficulty with open ended questions. This should keep them from asking you to retrieve information in your memory that is difficult to retrieve.  They should conduct the interview in a “Yes” or “No” format if you tell them immediately that you have difficulty with processing questions and information, especially open-ended questions.

If you don’t have a patient advocate with you at your appointments and can’t take notes, tell them you’d kindly appreciate them writing down important things.  That is their job!  Don’t assume you will remember.  Most people don’t remember much while at a healthcare professional appointment…even if they don’t have a brain injury.

A physiatrist or physical medicine and rehabilitation physician specializing in brain injury and neurology are in the best position to help you.  Please search for one in your area, ask a nurse, or have a friend be an advocate.  Do your homework and investigate what type of physician you are seeing.  Knowledge is always powerful.

Some interventions you can ask for do help. I will add more in other posts.  Start making connections with professionals for help while receiving outpatient treatment.  They are a good source of referrals, especially when they know you and your body. The following treatments beyond traditional medicine I find effective and helpful to function in my daily life are:

  • Craniosacral Therapy – Enhances circulation of cerebrospinal fluid ***Highly recommend…Very effective
  • Meditation
  • Acupuncture
  • Reikki – Energy balance
  • Biofeedback
  • Tai Chi
  • Pilates
  • Hyperbaric Oxygen Therapy

Community resources can be helpful.  I find what we need to do is educate all the children, beginning with young school-age children.  They are the future. By teaching children about differences we can also teach them about traumatic brain injury and disabilities. Within 13 years these young adults will be educated about brain injuries and disabilities.   Prevention and education is healthy and powerful.

Everyone needs to be accepted in society.  Through this process of youthful education there would be less discrimination within this fragmented healthcare system and more education leading to prompt treatment and recovery. We all have challenges in some manner or another. I was developing and implementing a “Caring Children’s Program” at the time of my TBI for exactly the reasons mentioned above. Little did I know that injury was lurking right around the corner.

Asking school-age children for help appears to be the least threatening and most acceptable.  This is an innocent avenue for brain injury survivors to be acknowledged and not judged, yet receive much needed assistance.  Surprisingly, young children are the least judgmental. So if you have small chores around the house, to walk a dog, to pick up the mail, or just stop by and visit for cookies and milk or coffee can still be a pleasurable experience. At times, pleasurable experiences can seem improbable or impossible with a TBI.

You can also connect with community services such as: Girl scouts, boy scouts, church groups, YMCA groups, CYO groups to name just a few.  Asking for help can be a trade off by educating these young minds to a better future, a better understanding, improving health of these young souls and enhancing their ability to communicate well with others.

Let’s figure out what makes your life so difficult.

  1. Make a list of your most difficult issues.
  2. Prioritize this list.
  3. What bothers you the most?

***Know this is a list you are going to work on, but you will probably need help. Write down one long term goal (LTG), then write your short term goals (STG).  These will be several small goals that you will accomplish along the way to eventually achieve your long term goal (LTG).  By this strategy you will eventually reach your ultimate goal.  Make all your goals realistic.  Don’t set yourself up for failure.  Start small and easy.

This is such a long journey and it seems like no one is helping or taking your symptoms seriously. They simply don’t have the answers.  They do not know. Your life is filled with detours.  How do I get around these detours?  You need to expedite your healthcare and make it a #1 priority.  This is hard work, and a life-long journey for many. You are your own detective, and your best advocate even when your entire world around you is falling apart.  You are worth it and if you have come this far to read this post or have someone reading it to you … Yes, you have an incredibly strong spirit and inner strength.  You are not invincible, but invigorating!

 

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10 responses to “Need help? Simple tips: Where do I go? When? How can I ask for help?

  1. Bill and Dina

    March 30, 2012 at 6:20 pm

    I love your passion and wisdom. Never, never stop!

     
  2. Maria Tatham

    March 30, 2012 at 9:46 pm

    Edie, I know you intend these practical suggestions and behaviors as ways for TBI sufferers to help themselves, with the help of others. But really, there is much good advice for others who have less serious things going on, but who still find themselves dragging, or going around in circles. Especially the questions for ourselves, the way to talk to caregivers, the need to ask for help when we really need it. I only hope that I can have compassion on others and know how to take care of my health as it is better.
    Bless you so much!
    Maria

     
    • brain injury self rehabilitation (BISR)

      March 31, 2012 at 6:55 am

      Maria, Thanks you for the compliments and helpful tips. I changed the title and a few ideas within this post. Maybe it will help others. I’m always open to suggestions. If you have some specific ideas for titles please let me know. It’s all new to me. Take care and Stay Safe, Edie

       
      • Maria Tatham

        March 31, 2012 at 8:32 am

        You’re new to this, and yet do an excellent job, Edie! The title change is good, and perhaps more easy to find for people searching for help.

        Did you ever consider doing a post on “When your doctor won’t listen?” For months I’ve been pestering my Tom to have a spot on his face checked. He finally showed it to our doctor on his regular checkup (for diabetes), and the doctor said, “Let’s wait and see.” This can be dangerous–can’t it?

        Bless you!
        Maria

         
      • brain injury self rehabilitation (BISR)

        March 31, 2012 at 11:26 am

        Great title for another post. I will do one on this. Any other suggestions I am open and will do posts as long as I believe it’s something I can do honestly and without a great deal of effort. The “let’s wait and see” attitude is dangerous. How would the doctor respond if it were him or a loved one? If it’s of concern to you, it’s important enough to find the answers. It’s your life, and you are the only one who can take control. Make an appointment for a dermatologist to make sure there is not another problem. If it is a problem it can be treated. Earlier is better. Take Care, Edie

         
  3. Maria Tatham

    March 31, 2012 at 12:51 pm

    Take care, Edie! And thank you!
    Maria
    dermatologist is a good, safe route…

     
    • Maria Tatham

      March 31, 2012 at 12:52 pm

      With limited energy, yes, we must do just the ones that are important and doable!
      Glad this was a helpful idea,
      M.

       
  4. Laurie FourPaws

    April 19, 2012 at 11:03 pm

    Great advice. Another tip I found it helpful to carry a tape recorder with me at all times. I would ask permission 1st of course and explain that I was not able to take notes and concentrate or recall enough after the appointment to write the notes. I also had problems with discrimination and harassement the tape recorder was empowering stopping it when I would bring it out, even though I couldn’t always react and have it on. The week I retired, I found one of my best friends was diagnosed with terminal cancer. I took her to all her appointments and chemo etc. Her family could continue to work until they were needed They used the tapes to review and would write questions in her note book to ask doctors on her behalf. My injury rehab. experiences helped me keep her together too. I felt so good being able to help her as much as possible.

     
    • brain injury self rehabilitation (BISR)

      April 21, 2012 at 2:55 pm

      A TAPE RECORDER is great. Always use one. I wish I had. I did for myself and my own notes, but wish I had everywhere. A CAMERA is also essential for memory. When memory cards became popular in camera or now, cell phones that helped with so much more memories. Take pictures of everything. Record anything of importance, including appointments. I could see how that would stop discrimination and all the horrific comments made and prevent so much other emotional damages. It was great you were able to be a fantastic advocate for your friend and family because of your experience with brain injury and the healthcare system. You have given so many helpful tips, I just need to think them all through. Thanks so much. Take care and stay safe.

       

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