Posts Tagged brain injury

[BLOG POST] TBI Grief Is A Thief…and Post-TBI Grief Is Rarely Brief

Having something personal stolen from you isn’t just upsetting…it’s offensive, and well…it’s just not fair. That’s how TBI feels to many. Leaving a TBI survivor to start over, the thief (TBI) often leaves no trace. Still, other times there is more than enough evidence.

Talking about grief, versus experiencing grief…or living with grief daily are totally different things. Grief can be an overwhelming sense of loss, a heavy mental weight pressing down on your very soul. After a traumatic brain injury, grief is an understatement. But it’s a place to start a discussion of what grief is, and how it’s different to people that may have been through similar situations.

Finding your way through the grieving process is like navigating without a map (or a GPS) – because there’s no set arrival time, and no itinerary – you just go along at your own pace, feel what you feel, and hope for the best. Nobody wants to hear that! With that being said, here’s an excerpt from a “tip card” by Lash & Associates Publishing titled “Loss, Grief, and Mourning.”

Tips for persons with brain injury to grieve and mourn…

✓ Be gentle with yourself – grieving can be physically, spiritually, and emotionally draining.

✓ Do not diminish how you feel about what has happened and don’t allow others to underrate your loss either. Your loss is real.

✓ Take time to work through your feelings about what has happened and how it affects you.

✓ Recognize that you may have secondary losses (e.g., loss of income, loss of friends, and loss of lifestyle).

 

✓ Recognize that your family is also experiencing grief. They need time to work through their emotions and may do it differently than you do.

✓ Find appropriate and safe ways to express your grief. It is essential to your well-being.

✓ Take time to reflect on who you were before your injury, who you are now, and who you want to be in the future.

✓ Ask for help – you do not need to do this alone.

✓ Keep life in perspective so that grieving and mourning do not totally overwhelm you.

Bereavement, Grieving, and Mourning

They are not the same. These words are used inter­changeably; however, they have different meanings. Dr. Alan Wolfelt, of the Center for Loss and Life Transition in Fort Collins, CO, defines bereavement, grieving, and mourning as follows.

Bereavement is the “call”.

It is the event that causes a loss (death, injury, ending of a relationship, etc.).

Grieving is the “internal response” to loss.

It is how one feels on the inside (sad, angry, confused, afraid, alone, etc.).

Mourning is the “external response” to the loss.

It is how one expresses feelings about the loss (funerals, ceremonies, rituals, talking, writing, etc.).

Primary and secondary losses are also a part of the process, in a “domino effect” of sorts. The initial injury of the TBI survivor is considered the primary loss…the other losses that follow affect the survivor, their family, friends, co-workers, and more. Everyone’s lives are changed.

Also, a whole range of emotions come with these losses, and mourning due to the situation can range from complicated, to extraordinary.

The journey of grief is complex, and acceptance is a big part of getting to the point with your life that you can go forward and find some happiness and reward. Embracing the new isn’t replacing the old…it’s acknowledging the old but moving ahead without it! It would be too easy to say “don’t let it get you down” …and survivors hear that more than they’d like. Although it’s meant as encouragement, many folks just don’t know how to put it into words in a more empathetic way. The point is that they didn’t experience what the TBI survivor did, but they deal with a lot of the aftermath on a daily basis – and they are just trying to build up and encourage the survivor.

In closing, grief is different in every single instance because every injury is different, every survivor is different…and every family is different. The difference is inevitable, but embracing each other’s differences after TBI is the best way to help each other feel included, and a part of the survivor community. Work to accept your differences as well, and you’ll be better prepared to have empathy for what other survivors have overcome too.

If you’d like to purchase the Lash tip card “Loss, Grief and Mourning After Brain Injury, by Janelle Breese Biagioni, you can click this link (price is $1.00 each, and is great to share with others).  https://www.lapublishing.com/loss-grief-mourning-tbi/

 

via TBI Grief Is A Thief…and Post-TBI Grief Is Rarely Brief

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[VIDEO] Recovery from Brain Injury Occurs for the Rest of a Person’s Life – YouTube

The human brain is a wonderful organ with amazing flexibility. Learn more about recovery.

 

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[VIDEO] Understanding Brain Injury. – Videos

via Understanding Brain Injury

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[Abstract] A systematic review of personal smart technologies used to improve outcomes in adults with acquired brain injuries

This review aimed to determine the effectiveness of personal smart technologies on outcomes in adults with acquired brain injury.

A systematic literature search was conducted on 30 May 2019. Twelve electronic databases, grey literature databases, PROSPERO, reference list and author citations were searched.

Randomised controlled trials were included if personal smart technology was used to improve independence, goal attainment/function, fatigue or quality of life in adults with acquired brain injury. Data were extracted using a bespoke form and the TIDieR checklist. Studies were graded using the PEDro scale to assess quality of reporting. Meta-analysis was conducted across four studies.

Six studies met the inclusion criteria, generating a total of 244 participants. All studies were of high quality (PEDro ⩾ 6). Interventions included personal digital assistant, smartphone app, mobile phone messaging, Neuropage and an iPad. Reporting of intervention tailoring for individual needs was inconsistent. All studies measured goal attainment/function but none measured independence or fatigue. One study (n = 42) reported a significant increase in memory-specific goal attainment (p = 0.0001) and retrospective memory function (p = 0.042) in favour of the intervention. Another study (n = 8) reported a significant increase in social participation in favour of the intervention (p = 0.01). However, our meta-analyses found no significant effect of personal smart technology on goal attainment, cognitive or psychological function.

At present, there is insufficient evidence to support the clinical benefit of personal smart technologies to improve outcomes in acquired brain injury. Researchers need to conduct more randomised studies to evaluate these interventions and measure their potential effects/harms.

 

via A systematic review of personal smart technologies used to improve outcomes in adults with acquired brain injuries – Jade Kettlewell, Roshan das Nair, Kate Radford,

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[WEB PAGE] The Struggles of Living With a Brain Injury

What Living With a Brain Injury Means


Living with a brain injury means a lot of things can change.

Conversations change. Relationships change. Your thoughts about yourself may change.

Living with a brain injury often involves having to constantly express how difficult it is to function while being expected to keep up with everyday interactions. It’s saying “this is too much for me” in a noisy room, then being asked “why are you so irritated?” when you’re overstimulated.

Living with a brain injury can mean becoming frustrated with yourself over simple things that become hard to process. It’s not being able to count your cards playing blackjack or strategize during a game while others impatiently wait for you to catch up.

Living with a brain injury can mean feeling embarrassed when you repeat something you said five minutes ago, or forget full conversations that happened last week. It’s not remembering the words you want to say, and then hearing the “I have such a bad memory too” response.

Living with a brain injury can mean always running late, or driving one place and ending up in another, forgetting how you got there. It’s the terrifying thought of “I don’t remember any of that” when it’s been 20 minutes.

Living with a brain injury can mean being expected to be “better” and not meeting expectations. It’s remembering people get sick of hearing that you’re sick, and getting tired of hearing the “still?” response.

Living with a brain injury can mean hearing constant jokes minimizing your experiences. It’s hearing “at least you meet new people every day!” and “you’re like Lucy in ’50 First Dates!’” over and over.

Living with a brain injury can mean explaining your brain injury, but never fully articulating what it’s like to not be the same person anymore. It’s grieving the loss of who you were before while being reminded of it every day.

If you know someone with a brain injury, be patient. Just like you have to adjust to the new normal, we do too. I promise we’re trying.

Living with a brain injury is struggling through every interaction while choosing to have hope that things will get better. It’s being embarrassed, frustrated and overwhelmed, and deciding to show up anyway.

 

via The Struggles of Living With a Brain Injury | The Mighty

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[f/b Post] HOW DO I EXPLAIN WHAT I FEEL?

By Monti Skiby. 9/9/2019

Η εικόνα ίσως περιέχει: ένα ή περισσότερα άτομα και κείμενο

Disappointment is difficult to to face. We have pre-conceived ideas of how someone or something is going to happen. There can be expectations in order to receive acceptance. We see it in children who receive a low test score. Others who can not hit a home run or make every basket they try. Valentine’s Day may come and go and no one remembers. It happens all the time in various situations. Throughout our entire life we are disappointed and we disappoint others. Not with the intent of disappointing but trying to meet someone elses expectation (s). Searching for acceptance and meeting expectations from others often develops into “part” of our identy.

When a person survives a brain injury it is common to have a loss of identy.

Many of us are no longer able to work or be the wife, husband, mom, dad, aunt, uncle, sister, brother… we once were. Some can not provide for their family any longer or fill the position as they once did as a mother, father, grandparent, aunt/uncle or have a position of making decisions for the family. Each one of the things I mentioned is a loss of a purpose we once had. Our purpose needs to be re-identified.

We are taught from a very young,”what do you want to be when you grow up”? A police officer, a fire fighter, a teacher, a lawyer, a mommy, a daddy…. determining our worth and identity by the job or position in the family we have. Is is “WHAT” we are. Never do we ask children “WHO” do you want to be? Compassionate, peaceful, spiritual, loving, gentle, hateful, angry…. Being identified by a job or position in the family is external to who you are. Not the characteristics which have developed inside within you.

“WHO” you are involves your character as a person. It comes from traits you develop as your inner self. A reflection of your emotions, mental state, spirituality, feelings towards others, feelings toward yourself, ability to think of someone other than yourself. When we loose the identity society has identified by “WHAT” we are we feel like a failure.

Same happens when a person survives a brain injury, “you just got fired from your life”. No longer able to work, be a husband or wife, etc … I’m sure you get the point. How do we feel? Like a failure. Unable to do what was once the roles we played. The hats we wore as teacher and mother/father and aunt/uncle, brother/sister. Now we need to depend on others, not being totally independent any more, and not be able to think as we once did. It takes longer to process thoughts, answers or even to understand what was said.

The rug has been pulled right out from under us. Having to look at “WHO” we are for the first time in our life. Learning to identify characteristics within you is Hell. Territory not travelled before. We believe; we have lost the position of being equal, we no longer are able to provide for others as we once did, we think we have or are losing everything we had.

All of these things can not be seen but only felt. Feeling worthless comes easy. Explaining it to someone does not.

Do not abandon us. Do not treat us as if we are at fault. We are not stupid. We have a brain injury which will heal for the rest of our life. We have not changed as a person. We now have limitations.

Having someone who cares about you is very difficult to find. Many people leave because they do not understand, don’t want to understand, want “WHAT” you were before, they can not find the love and acceptance to see the light at the end of the tunnel.

Expectations have to be eliminated. There is no room for pre-conceived notions of what must be done for acceptance. There never should have been expections in the first place.

I was a swim coach for a young group of kids years ago. 1st rule for parents was there would be no negative comments made to child (ren).

2. Parents were not allowed on deck. Even at swim meets. They sit in the bleachers (as long as no negative remarks).

3. If they persisted in negative remarks they were not allowed at the practices or meets.

There were 6 yr olds who had to be taught to swim. There was a 9 yr old who was deaf. There were young teens who believed they could do nothing right. I loved this group of kids.

The kids were taught not to compare times with other kids at meets but to focus on how their times improved from the last meet. Smiles came from shaving off 2 seconds, 5 seconds and even 12 seconds. The teen who said she could not do or accomplish anything shaved off seconds every meet and she smiles as the seconds came off. If the kids swam in 3 meets they received a metal from me for good attendance & doing the best they could do. If they swam in 6 meets another metal for attendance & doing the best they could. Same for 9 meets. The 12 kids succeeded no matter what. They learned self respect, responsibility of following through and setting goals. 9 of the 12 went to go to the State Meet because of their times and achievements.

We are the same person. Our personality and abilities have changed. The person is the same. Loving someone enough to help them heal is a genuine love. This is for ourself, friends and family.

Hope this helps. God has kept you alive for a reason. Love you. By Monti Skiby.

 

Η εικόνα ίσως περιέχει: ένα ή περισσότερα άτομα και κείμενο

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[VIDEO] Living With A Stranger: My Husband’s Brain Injury

Why We Created This Video

 

Traumatic or acquired brain injury as discussed by the media and the medical profession often fails to accurately portray the devastating and lifelong consequences brain damage can also have on a spouse and the entire family.

We created this video to offer a different perspective on the lifelong aftermath of brain injury, focusing on a person who has not actually sustained the injury but suffers from its consequences. Spouses and people close to brain injury victims may feel overwhelmed and find it difficult to explain their emotional roller coaster. We hope this video will assist in communicating the difficulties they themselves face. The impact on the spouse, family, and loved ones of someone who has sustained a brain injury are often neglected and overlooked. Their needs must be examined and addressed.

Although families are aware of the importance of the brain, very few families know of the consequences of a brain injury. Often, family members observation of physical improvement leads them to unrealistic expectations regarding cognitive, emotional, and behavioral recovery. Recovery and rehabilitation of these functions may take a long and uneven path, particularly when there is damage to frontal and temporal lobes of the brain, most vulnerable in auto crashes and falls. Those suffering the tragic consequences of a concussion, may have no visible physical symptoms, creating a false assumption that the injury was insignificant.

A once generous, articulate, cheerful, and socially appropriate person, however, may be transformed into a self-centered, verbose, depressed, and unpleasant person shunned by members of his or her own family. These more subtle changes in a person with a brain injury unfortunately envelope and affects a spouse, left alone to cope with the tragic aftermath.

A spouse or significant other may be constantly fearful of upsetting his or her loved one and may become isolated from others. One person’s brain injury has devastating effects on the entire family constellation, with a spouse or significant other functioning as both caretaker and liaison to the world. Spouses require support as well to learn to cope with the long-term consequences of brain injury.

Possible Consequences of Brain Injury to a Spouse, Significant Other:

  • Isolation
  • Clinical Depression
  • Divorce
  • Substance abuse
  • Domestic violence
  • Neglected healthcare

New responsibilities assumed by a spouse following a traumatic brain injury:

  • Household Responsibility
  • Parenting Responsibility
  • Income Responsibility
  • Decision Making
  • Caring for The Injured Spouse

Support Services for Spouses to Consider:

  • Brain Injury Spouse Support Groups
  • In Home Assistance: Home Health Aides and Personal Care Assistance
  • Respite Care

Problems Your Spouse May Have:

  • Change in Sleep Patters
  • Decreased Ambition and Initiation
  • Dependency
  • Depression
  • Impatience
  • Impaired Self-Control
  • Inflexibility
  • Inappropriate Public Behavior
  • Irritability
  • Memory Impairment
  • Self-Centered Behavior
  • Sexual Disinterest or Sexual Preoccupation
  • Sleep Disturbance
  • Temper Outbursts

Important Resources for Spouses, Significant Others and Family Members:

Organizations

Important Information

Publications

About Shana & Michael

Shana De Caro and Michael V. Kaplen.

Shana De Caro and Michael V. Kaplen are personal injury attorneys dedicated to assisting brain injury survivors navigate the road after traumatic brain injury. With extensive experience in representing victims of brain trauma, they are prepared to guide brain injury victims through the legal obstacles they will confront and recover full and fair compensation for the harms and losses their clients have suffered as a result of someone’s careless or negligent conduct.

De Caro & Kaplen, LLP is a New York personal injury law firm focused on representing victims of brain injury. Our attorneys have the knowledge and skill to make a crucial difference in the lives of brain injury victims. Specialized brain injury cases require a law firm with the experience and proficiency to assist brain injury victims through the most difficult legal challenges in their lives following a traumatic brain injury.

Shana and Michael are nationally recognized for their advocacy on behalf of brain injury victims. Shana is in her second term as an officer, and a member of the board of directors of the Brain Injury Association of America . Michael is a three-term past president of the Brain Injury Association of New York State and current Chair of the New York State Traumatic Brain Injury Services Coordinating Council. They have been designated Preferred Attorneys for the Brain Injury Association of America.

Their opinions on traumatic brain injury are frequently sought by The New York Times, USA Today, The Daily News, Fox News Network, and others. They are widely respected throughout the legal, medical, and judicial communities. The two regularly lecture lawyers, medical professionals, and judges, across the nation on how traumatic brain injury clients and cases should be evaluated and handled in and out of the courthouse.

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[QUOTATION] Brain Injury is …

Η εικόνα ίσως περιέχει: φαγητό

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[BLOG POST] Breakdown of relationships after a brain injury

Picture of Michelle Munt

By Michelle Munt, 21 August 2019

Breakdown of relationships after a brain injury

If we have been fortunate enough to grow up in a supportive community, we often think that those who care about us will be there in a crisis. Sounds reasonable, right? Your next of kin get that dreadful phone call alerting them to your accident and which hospital they will find you in. They rush to your bedside with a concerned expression etched on their face as they are told you have a brain injury…

Fast forward to when you are home: your relationship with them isn’t so rosy any more. It feels like they are being short with you and always stressing out until they start ghosting you, leaving you feeling abandoned in your time of need.

Most brain injury survivors that I have spoken to have had relationships with friends and family breakdown after their injury. And I’m sure most people who say that it’s times like this that people should be pulling together, not drifting apart. So, these people are immoral, bad people, right? Wrong.

If you are a survivor who has suffered an experience like this, stay with me. Believe me; I do understand what this feels like and how hurtful it is. I have been through a similar situation myself with someone who was/is very important to me. But as I have mended that relationship, which took several painful years, I have the benefit of hindsight that I can share with you. I wrote about this situation before on my blog in Added injustice following a brain injury, half of which was written whilst we were still in the middle of this uncomfortable mess, before moving on to an update about how we reconciled. Reading it back now does bring back a lot of emotions for me. It’s interesting because it sounds just like so many other brain injury survivors’ stories. Yes, we do try to be fair and accept the stress is difficult for the people around us, but we’re still bitter about feeling abandoned.

There are so many stress factors that are straining these relationships. Whilst it might give us some relief to apportion blame, it’s not actually constructive. What we need to keep in mind is the statement “those who care about us will be there in a crisis” is just a belief, not a fact. Life is full of choices and consequences. Some of these decisions are difficult to make, but everyone has to make choices, even those that leave us with a heavy heart. It might well be that some of the stresses they are being weighed down by are having negative effects in other areas of their lives that others haven’t seen. It could be having a knock-on effect on children, careers, finances, just to name a few.

On a recent trip to Jersey, I was reminded what these painful decisions can look like. During WW2, Winston Churchill had many discussions with the Royal Navy about the defence of the channel isles. Ultimately, they convinced him that their resources were needed elsewhere, even though he passionately wanted to defend them. I can’t begin to imagine how abandoned and let down the islanders must have felt. Did Churchill make the right decision? That’s not for me to judge, but what this event demonstrates is sometimes the “greater good” can mean we have to do things that we don’t actually want to do. Even after the war ended, it took many months for Great Britain to retake the islands and things to resettle. Today, whilst Jersey has its own government, it’s still proud to be a part of the British Isles. Now that is the ultimate forgiveness, don’t you think?

In short, what I’m trying to say is let your anger at them go. Put the voodoo doll away, stop searching for all the embarrassing photos you have of them that you planned on posting on social media and definitely don’t sign them up for loads of annoying spam emails. No judgement, these are half baked plans I had once too. But because I managed to forgive, instead it left the door open for reconciliation. And if it never comes, you’ll feel better anyway because holding onto those emotions only hurts you, not them.

via Breakdown of relationships after a brain injury

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[Infographic] What NOT to say to someone with a brain injury

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