If You Have A Traumatic Brain Injury,Don't Miss This Opportunity

If you or someone you love has survived a traumatic brain injury,there will still be a lifetime of struggling ahead. Many survivors face the difficulties alone. There is help available. There are others who know exactly what you are going through. Many of our doctors initally do not recognize our symptoms of TBI. We know something is horribly wrong but,we are too sick to know how sick we are. We may not have the proper support or therapy as we deal with our injury.There is a place to go and meet others who can enlighten us. We all have different information, stories and resources that need to be shared. No one should have to face this journey alone. That is why Ann Boriskie created her website.

 

www.braininjurypeervisitor.org      

 

 

The Brain Injury Peer Visitor Association® provides HOPE, SUPPORT, EMPATHY, EDUCATION, and INFORMATION for hospitalized and rehabilitating brain injury survivors and their families. and via email and the telephone, from someone who has BEEN THERE …and DONE THAT.

   Would you like to: 

• Speak to a brain injury survivor?
• Talk to the caregiver of a brain injured loved one? 
• Have a personal visit, email or phone call from someone who has BEEN THERE …and DONE THAT?
• Receive a free helpful packet of information? 

 

All types of brain injuries are visited (caused by aneurysm, anoxia, tumors, surgery, brain disease, brain bleeds, car wrecks, falls, beatings, sports related, and stroke).

 

All services provided are free.

 

       Click on this website link www.braininjurypeervisitor.org or contact Ann Boriskie, Director and Founder at 770-330-8416, aboriskie@braininjurypeervisitor.org

 

This association is run by Ann Boriskie who is a survivor of a serious car wreck in 1998.  She is a volunteer who leads her team of 150 volunteers (all types of brain injury and stroke survivors and caregivers of brain injured survivors)

 

7.24.13

 

We Only Pass This Way Once- And Mostly What We Leave Behind Are Memories

As a caregiver for a family member with dementia, I am always collecting memories and holding on to them. Each day takes him further into his own private world, which is far removed from the one we shared. As the horrendous disease claims his memories, I am the connector to his past. I remind him of the things that were important. Everyday experiences that seemed ordinary are now precious.

I went to the gardening shed to get the electrical cord to do some hedge trimming today. The bright orange professional grade 100 foot cord was neatly looped, just as he had taught me to do it on a long ago day. He was the owner of his own construction company until his disease took away his ability to function in that capacity. There were things that were very important to him. One was putting away tools properly. He taught me how to loop the cord to prevent tangles. Today, I almost cried when I saw it neatly stored just the way he taught me. It was a bittersweet reminder of the man who kept everything in order.

Now, I am the one who makes sure everything is done. His red truck remains spotless. The yard is neat and trimmed. His hours are ordered and filled with things that I know he likes. Little Debbie cakes and Sundrop are always in the kitchen. I call his old friends and hook him up with them by phone. I label the old family photographs. I encourage the familiar stories that bring laughter to his face. Today, I went inside and told him about the cord and how it was stored just the way he had taught me. His eyes sparkled because he realized that  he still has great influence on my life. He is the love of my life and the has taught me so many things. I want him to know this.

Preserving old family memories is one way you can help your loved one to hold on to reality. Label old photographs and share them as an activity.Share the stories that go with the photos.

 

It is a struggle to be a caregiver when I myself am a traumatic brain injury survivor. I suffer from memory loss also. As I search for lost pieces of my life, I realize the importance of holding on to what you can. It is a blessing to be able to keep up with all the important pieces of our lives. Be thankful if your little brain still works properly and be understanding of those who no longer are able to function as they once could.

Keeping the balls in the air and the ducks in a row

Today the balls were flying about everywhere and the ducks were running in many directions. My little broken brain just could not keep all the balls in the air while I was rounding up the ducks. I am everyone to my family.Whatever they need,I make it happen.I am shopper,nurse,laundress,therapist,maid,yardman,car detailer, and Mom. Multi-tasking is enough to make anyone tired.Simple truth is....I was exhausted.So,I temporarily let some balls fall.Brain injury people find it difficult to disengage from things they feel passionate about. They seem to repeat the same mantra,I think I can, I think I can,I think I can. I am a perfectionist. I want everything in order. As a TBI survivor, I have trouble keeping everything in order.

Today, two added pieces of my life's puzzle were thrown into my day. It was too much for me to handle. I had a family concern that caused me to be sad. The situation required my brain to address those feelings.And, a former co-worker contacted me by e-mail. She is a part of my past that is very painful to remember.

I lost my job due to my brain injury.In my job as a department head in a nursing home,I felt pressured because I couldn't work at my prior level. My TBI hindered my ability to run my office and keep up with all my responsibilities.I tried to keep up with everything. I was accused of not listening,not being interested, not being friendly. The truth is that my brain injury made it hard for me to concentrate and focus. And, I was working so hard to keep up and stay ahead of my staff that I forgot to remind myself to smile.All the interruptions and demands that disturbed my efforts to get my work done were very harmful to me. It wasn't that I was unfriendly, I was just overworked and stressed.

I was trying to manage conversations and responsibilities in a tiny office with at least three other people who were trying to carry on their jobs and details of their private lives.I was held to a standard of perfection that I had set before I was injured. Co-workers expected to see the old Sylvia and her creativity and level of expertise. That Sylvia died in a four car collision. Her life was gone. I, a broken replica, was left to gather the shattered and forgotten pieces of her life and create something useful out of them.

Today,I felt unraveled by the added stress of the day. I had to take some time to allow my brain to slow down and become calm. I drove to the park and sat in my car reading an inspirational book while the caregiver took care of my family member allowing me the gift of a small respite.

I have a TBI, an injury that would require special understanding in the workplace-as a blind or deaf person's injury would. A person with no legs would be given the help needed to accommodate his workplace needs.I suffered unmercifully in my workplace because of lack of knowledge of TBI and lack of empathy for my injury.In the middle of a million dollar renovation my office was untouched. The renovations stopped at my door. A baby grand piano was permanently moved to within one foot of my door. Loud programs were held right outside while I was trying to work and concentrate.Nothing was done during this renovation to make my workplace more accommodating.I have hear the stories of other survivors and how they have been able to remain in their chosen fields. Accommodations were made and coworkers were educated about TBI. This is as it should be.


No survivor should be forced to sit in a meeting with another co-worker who formally accuses that they have no brain injury-that they are lying and that they are pretending to be sick. This happened to me. Over and over, I have heard stories of mainstream society refusing to validate the existence of a person's brain injury. Survivors are often accused of pretending. Because our injuries sometimes can't be seen,TBI is often referred to as an invisible disability.

Why would anyone want to falsely imply that they have a brain injury? That information certainly wouldn't serve to advance you to your goals. The only reason would be to get disability payments. That is not a goal, it is a compensation for what you have lost. It doesn't make up for what you might have been able to accomplish if you were allowed to pursue your dreams.This ignorance and lack of information causes much suffering to brain injury survivors who already are dealing with such tremendous pain and loss.

I was accused of being rude when I shooed co-workers away with a hand when they interrupted while I was trying to carry on business phone conversations. I heard their blended office conversations, overhead speaker announcements, conversations from the next room,radio sounds,computer sounds and more. All this stimuli was coming at me while I was trying to process the business conversation that I was engaged in on the phone. I waved them away as a coping mechanism to be able to do my job. They could have educated themselves about traumatic brain injury and the difficulties of processing information with the hindrance of not being able to properly filter sounds.

By creating this site I hope to educate the public and doctors about Traumatic Brain Injury survivors. That will be my legacy-to keep others from enduring the pain that I have encountered. We must educate,educate,educate and then hopefully,we will be supported by the medical profession, our employers and peers.

Please be kind to yourself. Don't be so down on yourself about what you are no longer able to do. Parts of you don't work so well anymore-but,parts of you are exquisite and you still deserve to be loved. Check out my other blog www.startinglifeinthemiddle.com it features my Etsy shop and my newest design, a shabby rose necklace that is shattered on the inside but is (normal) perfectly intact on the outside. It was created as a reminder that even though we are broken,we are beautiful and worthy of love.




.

I haven't forgotten you,I just don't know you at the moment

It happened to me again today. I was in the grocery store and a young woman spoke to me. She told me to put down the grocery item I was holding.I looked at her and did not know her. I had a sense that she was a good person, not someone I should be afraid of. Her smile and direct comment to me made it evident that she knew me. I didn't want to appear rude. So, I used the same coping strategy that I always use. I walked over to her and told her that I had a brain injury and did not remember her. I asked if she knew me. She informed me that she was a former co-worker of mine.Once she told me who she was and where she had fit into my life,a little file opened inside my head and I remembered her. She was the sweet,friendly CNA who always had nice hair and makeup and was friends with one of my staff members.

The inability to remember people is one of the many things I struggle with as a result of my TBI. I used to be embarrassed to ask for help.It is really strange not to know a person whom you have seen  and interacted with often. But, that is my life. I have a problem remembering faces. It is unnerving to say the least.

I have heard other TBI survivors speak of having memory problems in different areas. I have not seen the effects of this on someone else's life until this past week-end. I saw a movie called Remember Sunday. Zachary Levi portrayed a young man who had a brain injury that destroyed his short term memory. Every night, as he would sleep, his memories of the day disappeared. Each morning when he woke up, he had to remind himself of who he was, where he was, and what he was supposed to do. He could not remember anyone on a short term basis. He was brilliant and had enjoyed an awesome career. All that was lost. He could no longer function in that capacity.

After his brain injury he had computer calendars to remind him of appointments and things he had to do(so did I). The one note of his that got me the most was the computer note that reminded him to smile.I completely understand that note.I was often afraid of not having the proper facial expression at work. I was told that I appeared to be disinterested in conversations. The correct terminology is aphasia. It is the cognitive deficit of not being able to process and relay information. I literally had to remind myself to smile in order to not be perceived as unfriendly.

The young man in the movie used another assistive technology tool that I also used. It is an awesome pen called Livescribe. You carry it with you and take notes on a special pad. The notes are stored on the pen.It also is a tiny recorder. When you get to your computer,you insert it into your USB port and the computer types all conversation that is stored on the pen. This is a great organizational tool.
TBI survivors find themselves using sticky notes as reminders. The young man had them on his desk,on the bathroom mirror,on the refrigerator...everywhere,( so did I). The trouble with sticky notes is that you are using them to do what your brain can no longer do. It gets to be overwhelming. I would jot down a note such as, Meeting,Friday-2:PM,Brenda. I knew exactly what that meant the day I wrote it. Later, I needed more information. Meeting about what(so I could prepare)? Where at 2:PM?Brenda who? The Livescribe pen remembers everything.

If you want a better understanding of Brain injury,get the movie Remember Sunday and watch it. It is very enlightening. Levi looked normal. People that he came in contact with every day expected him to act normal. He could not,because he had a very real disability. Brain injury survivors fight a battle every day just to function in mainstream society. There is little public awareness in the area of TBI. It is my intent to share my journey and to get others to share their stories. It is my passion to save others the pain of what I and millions of others have suffered and endured.

Don't Dwell on What you Used To Be Able To Do

My brain injury therapist taught me not to feel sorry for myself and not to dwell on what I used to be able to do. She said to face each challenge and ask myself how I could do the task now, with a TBI. She taught me to search for solutions and helped me to build in helpful tools to assist me with my daily routines. Sounds good. It is, but, not so easy when you are challenged by not understanding hundreds of little things that others take for granted. I will be sharing some of my discoveries.

Tip for today: Make friends with a GPS. You'll never have to be afraid of getting lost again. I used to be intimidated by parallel routes that became mixed in my mind. Now, I just trust my little GPS. It doesn't matter how far I go, I can put in my home address and it will lead me safely home. If you do find yourself at a particular place and don't remember which way to  go, don't panic. Just find a safe place and stop. Give yourself a moment. Chances are your little brain will re-boot and you will be safely on your way:)

Admiration For Caregivers

As I mentioned before, I am a caregiver. I have a TBI and my family member has Parkinson's. I get a double dose of dealing with memory care. It is sad to watch my love as he slowly loses pieces of his life to Parkinson’s disease. One day he knows what a toothbrush is and the next day he is afraid of it. He remembers playing football with his buddies from high-school. But, he doesn’t remember going out to breakfast this morning. It is a huge undertaking to go out to breakfast. I give of my strength and love until I have nothing left to give. Then I reach down inside my heart for a prayer for strength to be able to give more. I must try to make his life as good as it can be while trying to hold on to the fragile pieces of my own life.
A friend of his commented on how difficult it would be to watch him lose his memory. It is difficult for me. There may come a day when he doesn’t remember me, but-I will always remember him. I will remember his laughter and his wonderful smile. I live for that smile. I once said that I would rather have one minute of his time than have a lifetime with any other man. It is still true. To love someone and to watch them disappear is unimaginable. To make a commitment to stay and watch over them and hold their hand throughout the frightening times is unconditional love. I have so much respect for caregivers. If you want to share this feeling of admiration for caregivers, get a copy of the movie The Notebook. You will cry, as millions of caregivers do. But you will see real love. Take care of yourself and those you love.

One resource that I have found to be helpful is a Parkinson's disease caregiver's forum. We caregivers on the forum share our journeys and our joys. When we have a problem, we put it out there and see if anyone else has faced it and found a solution. The forum not only deals with Parkinson's but can be related to many memory care patient issues. Check it out at www.myparkinsons.org

If You Can't Have Everything,Make the Best Of Everything You Have

Good morning. I've been busy working since about 4'clock.(I guess I should have been a farmer:) Just trying to get my pictures organized and saved to other locations for safety. You know how unpredictable computers are. I have been working on the blog too. It is about 80% finished. I have to figure out all my links, photos, gadgets and add-ons. Boy-it is a lot to learn. I love a challenge.

Tip for today: If you can't have everything, make the best of everything you have. I love to find treasures. Going "thrifting" is one of my hobbies. Funny, I never heard the term "thrifting" until lately. I always referred to my little jaunts as going to yard sales or going to checkout the thrift shops and second hand stores. New path, same destination.

Those of us with brain injuries often must find new paths or new ways to do things. That is what I will be sharing with you in my blog. I have found many coping strategies that allow me to do the things I have to do. I will share problems as well as solutions. For family members, friends and caregivers of people with TBI (Traumatic Brain Injuries),Alzheimer's, Dementia and other memory care illnesses, there is a great lack of understanding concerning our illnesses. I hope to give a new perspective. We can learn together as I travel on this journey.

My career was in eldercare. In my workplace, I often saw family members become frustrated with their loved ones because they could not function normally. If you think it is annoying to hear Mom repeat the same story a dozen times, I want to ask you to think about it in another way. Mom's reality is different from yours. She doesn't realize that she has told the same story over and over. She doesn't remember repeating herself. If you love her, then you must accept her as she is. As tired as you might be of her repeated stories, they are a part of her life. In all probability, she is losing parts of herself every day. It would be wise to encourage the stories. Out of love, pretend they are new. Laugh with her. Record them for a time to come when she can't remember anymore. You will long to hear her voice when it is silenced forever. It would be wonderful to have the stories saved for family history.

Saving history is another hobby of mine. We should identify old family pictures. When the people in our family pictures are gone and those who knew them are gone, the history is irretrievably lost to future generations. How sad to see boxes of old photographs with no attached history. Perhaps you will share some of your wonderful old photographs later on this blog. That would be great:)

Have a wonderful and blessed day:)