Tag Archives: caregiver support

Grieving – Mommy of a Miracle

As a parent to a child with a brain injury, I can tell you that this journey is an emotional roller coaster from hell.  The truth is we grieve and most people on the outside just don’t get it because after all our child is still here.  This is my attempt to explain something that is hard to “get” unless you live it.

When someone you are close to passes away, there is a wake followed by a funeral and then the grieving cycle begins.  Generally the grieving cycle consists of shock and denial, followed by anger, then sadness, bargaining and finally acceptance.  When your child suffers a brain injury most  times you have a child who looks like they did before but they are an altogether different child.  Almost like a stranger was placed in their physical body.  We not only go through the grief cycle but are often times left with what has been called chronic sorrow.  Chronic sorrow is defined as the presence of recurring intense feelings of grief in the lives of parents or caregivers with children who have chronic health conditions*.

Shock and denial is the first step of grieving.  According to the Head Injury Center every 5 minutes in the United States a brain injury leaves someone permanently disabled.  When that brain injury happens to your child, shock sets in fast.  I remember looking at Isabella hooked up to all these machines, tubes and IVs everywhere, thinking is this really happening or is this a horrible nightmare that I will wake up from? I mean after all Isabella was fine all Thanksgiving Day, how did things go so terribly wrong so fast?  I was physically going through the motions but I was in complete shock.  There are chunks of time that I just don’t remember.  Denial is something that I never experienced and for that I am eternally grateful.  I think the fact that I was a single parent helped me a lot.  I couldn’t fall apart or deny what was happening because I was the one having to make major decisions that could lead to life or death.

Anger is the second step of grieving. For me anger is such a foreign emotion.  I am not an angry person.  I can only remember two times in my life where I was angry.  Yes I get mad or upset like everyone else but anger well that was not an emotion I was used to.  I was angry that my child was robbed of the life she was supposed to have.  Isabella was a 4.5 year old little girl who had the world waiting for her.  She was this happy-go-lucky, social, smart little girl who met friends everywhere we went.  She was in preschool and she was playing on a soccer team – the one thing she had talked about since for as long as I can remember.  Yet my baby girl was hooked up to machines galore and fighting for her life.  I was angry and I have my moments were I still am.  It is ok to have those moments as long as you are able to move forward.

Sadness is the third step of grieving.  It is when the reality of your child having a brain injury actually starts to set in.  I was sad that the child I had for 4.5 years was gone.  Isabella looked exactly the same yet was replaced by what seemed to be a stranger.  I was sad that Isabella had to go through and endure everything from therapy to tests to doctor’s appointments etc.  I was sad that things Isabella had mastered before her ABI were now so challenging or gone such as walking, writing, coloring, sitting up etc.  Watching Isabella struggle with not only the heartache of not being able to do what she once did but also seeing the  frustration she felt because she knew she could once do it.  I was sad and I still have my moments were I am very sad.  I allow myself those moments because I am human and I know that I will keep moving forward.

Bargaining is the fourth step of grieving.  It is when you try to find the reason or explanation as to why.  It is asking “what if”, “should’ve, could’ve, would’ve” etc.  Often times bargaining is people thinking that they are paying for past mistakes.  I am fortunate that this is not something I went through.  Quite frankly I believe that sometimes bad things just happen.  There is not a rhyme or reason, it just is what it is.  I knew that I did everything that I possibly could to save my child.

Acceptance is the final step of grieving.  It occurs when you have come to the realization that what was is no longer and you start your new normal.  Acceptance doesn’t mean that what happened is ok.  It quite simply means that you are living in reality and have an understanding that life is different.  I will never be ok with what happened to Isabella.  She was robbed of her life.  I have come to the realization that the path Isabella was on prior to her ABI will not be.  However that doesn’t mean that Isabella can’t have a life.  Will it be the same as she was set to prior, no, probably not but at the end of the day, all I want is for Isabella to be happy and live to the best of their ability.  Acceptance doesn’t mean that all is ok it just helps you to keep moving forward.

Chronic sorrow is how best to explain life with a child who has a brain injury.  You are repeatedly faced with a child who in most cases looks exactly like their old self.  However, they are completely different. I miss the Isabella I had for 4.5 years. She was so happy-go-lucky with not a care in the world.  When I have those small glimmers of my old Isabella (however brief and far between they maybe) I take advantage of it.  What I have found is that I love my new Isabella more than I ever loved the prior one.  It is hard to imagine that possible.  The Isabella I have now has become my hero.  I admire her courage to face each day no matter how difficult it maybe.  I admire her determination and I hope she never loses that fight.

“The only people who think there’s a time limit for grief, have never lost a piece of their heart.  Take all the time you need.”  unknown

*taken from www.chronicsorrow.org

SAMSUNG CAMERA PICTURESGuest Blogger, Kristin Olliney-Apruzzese, is the mother of 8-year-old Isabella, who suffered sudden acute encephalitis when she was just 4. Kristin’s bi-monthly blog, Mommy of a Miracle, talks about the trials and joys of raising a brain injury survivor.

Legal Statement: The information contained in this blog does not reflect the specific views of BIA-MA. This blog is published for informational purposes only. BIA-MA is not providing medical, legal or other professional advice with its publication.


Mommy of a Miracle – Faith

kristine & isabellaIn order to survive this journey through brain injury I think you need to have some sort of faith.  Faith is a very personal thing and yet when brain injury occurs it is often questioned more than ever.  Most people question their faith after a brain injury, but for me, it was quite the opposite.  You see before my daughter, Isabella, got sick with sudden acute encephalitis, I already had doubts about my faith.

The two years prior to Isabella’s Acquired Brain Injury (ABI), I had helped care for my Nana who was dying from ALS.  I watched the woman that I called my Nana, who was more like a mother and best friend to me, suffer for about two years.  It was heartbreaking and it made me question my faith.   My Nana was one who always had a strong faith yet she was suffering.  At the same time that my Nana was dying, one of my best friends, Jillana, was losing her battle to an inoperable brain tumor.  Once again my faith was being questioned.  Jillana was a young athletic amazing person and yet she was suffering from this horrible brain tumor.  My Nana died Sept 2009 and Jillana died March 2010.  Within 6 months I had suffered two substantial losses.  I was angry and upset that two great people suffered and died.  I was questioning my faith; I was questioning everything that I had ever believed in.   I found myself searching for a reason to have faith because I no longer believed.  I didn’t believe in prayer because I prayed so much for them both.  I did not believe in people that claimed to have experienced miracles.  In my mind, people that claimed to have miracles were not telling the whole story and clearly something else played a hand in that “miracle”.

When Isabella got sick everything changed.  I found myself in the PICU watching my child dying before my eyes.  I was praying to anyone that was listening to please save my baby.  In that room I didn’t know what else to do so I prayed.  There was family, friends, acquaintances and strangers from all around the country praying for Isabella.  Then in the words of her doctors, a miracle happened.  Prayers were answered.  Not only did Isabella survive but she defied the odds.  Hearing doctors say that there is no medical explanation for her survival and that it is a miracle she is here, well, that gave me something to think about.  I had watched a miracle with my own eyes and there wasn’t more to the story as I had often suspected with others who claimed miracles.

As the hours turned to days then months and eventually years I could feel that my faith was returning.  I had faith to understand that the power of prayer really does work and miracles really do happen.  Not all prayers are answered how I want them to be but I now have faith that somehow some way things will work out.    Ironically that was something that my Nana had told me my whole life that I didn’t understand until Isabella got sick.

On this journey my faith has been tested over and over.  What I have found is that faith comes in all kinds of packages.  There is faith in the power of prayer, and faith in miracles.   I have faith that Nana and Jillana are our guardian angels, both never far from us.  Faith can also be found in doctors, therapists, friends, family, strangers and support groups.  Faith isn’t always this thing that is right in front of you; sometimes you have to really look for it.  Most importantly I have faith in Isabella and myself.  I know that together we can conquer any battle big or small.  After all faith helped us survive the unimaginable.

Guest Blogger, Kristin Olliney, is the mother of 8-year-old Isabella, who suffered sudden acute encephalitis when she was just 4. Kristin’s bi-monthly blog, Mommy of a Miracle, talks about the trials and joys of raising a brain injury survivor.

Legal Statement: The information contained in this blog does not reflect the specific views of BIA-MA. This blog is published for informational purposes only. BIA-MA is not providing medical, legal or other professional advice with its publication.

Get ready for BIA-MA’s 4th Caregiver Conference on November 2nd!

The 2010 Caregiver Conference

The Brain Injury Association of Massachusetts is hosting its 4th Caregiver Conference on Saturday November 2nd at The Canal Club, Trowbridge Tavern, 100 Trowbridge Road in Bourne, Mass. Boston Medical Center HealthNet Plan is the Headliner sponsor for the event and exhibitors from several organizations will be available with a variety of services geared toward the caregiver.

This conference is the only conference just for caregivers–designed to give support, advice and practical information to caregivers facing the many challenges of meeting the needs of those with brain injury. BIA-MA’s first Caregiver Conference, held on Cape Cod by BIA-MA’s Southeastern Regional office, was the inspiration of Donna Edson, mother of Robert Jordan, a survivor of brain injury who passed away in January 2008. Without the generous donations in Robert Jordan’s memory, the first conference would not have been possible. Since its inception, the conference has more than tripled the number of participants, attracting families and caregivers from across Massachusetts.

From 9:00 a.m. to 2:30 p.m., conference attendees will learn about survivor care and services, caregiver care and services as well as managing unwanted behavior. Here is our list of esteemed speakers:

Managing Unwanted Behavior

  • Tom Hall, Associate Division Director for Clinical Services at Riverside Community Care, has worked for more than 25 years with individuals recovering from brain injury. He is a Certified Brain Injury Specialist Trainer (CBIST).

Brain Injury Survivor Care and Services

  • Kenneth J. Smith, Director, Office of Long Term Services and Supports, Executive Office of Elder Affairs and MassHealth, Executive Office of Health and Human Services
  • Myles Marisseau, Information and Resources Senior Operations Manager, Brain Injury Association of Massachusetts
  • Marilyn P. Spivack, Founder, Brain Injury Association of America, parent of a brain injury survivor, and the mother of brain injury advocacy
  • Matt Dorian, Research Fellow, Spaulding Rehabilitation Hospital, TBI Model Systems
  • Juliane Soprano, Attorney, The Law Offices of Juliane Soprano. Juliane specializes in Worker’s Compensation and Social Security Disability Representation. She was named one of Best Lawyers® for the past four years.
  • Robert Ferris, Massachusetts Rehabilitation Commission and the Brain Injury & Statewide Specialized Community Services (formerly SHIP)

Caregiver Care and Services

  • Marie Bantram, Owner, All 4 Healing Wellness Center, Sagamore Beach
  • Adam Liss, Owner, Cape Stress Reduction & Optimal Health, Marstons Mills

Breakfast will be provided from the generous sponsorship of Fairlawn Rehabilitation Hospital in Worcester. Lunch will also be provided. If you need special accommodations, please submit them no later than October 15th. You can indicate this on the registration form.

If you are a caregiver and you would like to attend the conference, it is $10 for one person, $20 for two people, and $25 for 3 or more (family). Click here to get all the details. If you’ve learned all you need to know and want to register right away, click here and submit your online registration form.  The registration deadline is October 29th. If you are a caregiver for a brain injury survivor, this conference is just for you, and you will finish the day with relaxation and stress relief. Take advantage of a conference designed just for you.

Caregiving 101: 10 Tips for New Caregivers from Caregivers & Brain Injury Survivors

survivorcaregiverblogCare giving is no small feat. Caregivers are giving, loving, patient people who often put others’ needs before their own. Many of the skills needed for care giving are learned over time through trial and error. We asked our knowledgeable and supportive Facebook fans made up of survivors, caregivers and family members what advice they’d give to new caregivers as they deal with so many of these issues every single day.

Here are the top 10 tips for brain injury caregivers, with a little extra advice added in:

1. Be glad your loved one is still with you. – Donna

2. Be patient. – The Betty Clooney Center – Traumatic Brain Injury

3. Patience, persistence and determination! – LaRissa

4. Be honest about your limitations and cultivate a good sense of humor – it really helps! – Clare

5. Stop hovering. We can pick up on your anxiety which feeds ours. -Pamela

6. One hour, one day, sometimes only a minute at a time if that is all you can do. – Lori

7. Try to keep your patience because the repetitiveness pays off! – Merrie

8. Pray about it – DuWayne

9. Take time out to make sure you take care of yourself so you can be the best caregiver you can be.

10. Build a support system and find people you can rely on when you need to.

Interested in joining the conversation? ‘Like’ us on Facebook and Follow us on Twitter. Check out more care giving posts here, here and here. Still looking for more information? Call the Brain Injury Association of Massachusetts Information & Resources Department at 1-800-242-0030.

For Caregivers: Tips For Finding Support & Self-Acceptance

“Do what you can, with what you have, where you are.” – Theodore Roosevelt

This quote is one that is perfect for caregivers. Caregivers are special people. Not just anyone can be a caregiver. Being a caregiver requires patience, responsibility, organization and a true sense of selflessness. Often people become caregivers after a loved one falls ill or has an accident. Caregivers of brain injury survivors are often parents, spouses, sisters, brothers or friends – loved ones who never imagined they’d need to balance being a loved one with being a caregiver.

Despite all that caregivers do – taking their loved ones to doctors appointments, rehabilitation, doling out medicine, serving as moral support and the number one cheerleader – they can often feel inadequate or as though they can never do enough. When you’re experiencing one of those moments in the day when you feel stressed, overwhelmed or helpless, use these tips to get yourself back on track and find inner peace.

1. Accept that what you are doing is enough. Caregivers of brain injury survivors often feel helpless. They strive to help their loved ones make progress, do endless research on the latest treatments and rehabilitation and advocate tirelessly for the best medical care and services out there. However, it never seems like enough. Instead of beating yourself up for not having enough time for a, b or c, feel proud that you provide continual support for the survivor in your life. The work you do is admirable and although there are never enough hours in the day, always remember there is always tomorrow and that is OK.

2. Find a support system. Many caregivers feel as though they’re completely alone. Whether you are a mother or father of a survivor, spouse or friend, it is important to find someone you can rely on if you need to. What happens if you get the flu or simply need a day off? Find someone you can trust and have he or she fill in. Rely on family members and friends. Chances are good that they’d be happy to help, you just need to ask! Caregivers need support just as much as survivors do.

3. Leave time for yourself. Take a vacation. No, really! Take a day off! Get a massage, practice yoga or join a book club. It is important for you to take care of you and by having a support system in place, you’ll be able to do those necessary things like taking a day off, running an errand on your own or taking a vacation. Some caregivers take a vacation or weekend off a couple times each year so they can relax and recharge their batteries. It is incredibly important for you to take care of yourself so you can be the best caregiver you can be and that starts with your physical and mental health.

4. Talk to someone. Find a support group – online or in-person – and talk to others who understand what you’re going through. Caregivers need to find support just as much as survivors do. Brain injury is life-changing not only for the survivor, but for loved ones and caregivers as well. Some caregivers experience PTSD, anxiety or depression, so it’s important to talk to someone you trust and recognize the signs if something isn’t right, so you can get the help you need.

Looking for information and resources for brain injury survivors and caregivers? Call the Brain Injury Association of Massachusetts at 1-800-242-0030.

Mommy of a Miracle: How Family Life Changes After Brain Injury

kristinToday’s blog post is part of a monthly feature called Mommy of A Miracle written by our mommy and caregiver blogger Kristin Olliney, the mother of seven-year-old Isabella, who suffered brain damage from sudden acute encephalitis at just four-and-a-half. In today’s post, Kristin shares the how their family life has changed since Isabella’s brain injury. Read Isabella’s entire story on our website.

When Isabella suffered a brain injury, every aspect of our family life suddenly changed. While life is not perfect or the way I had planned, it still is great. Often, people do not understand why things are different because on the outside Isabella looks “fine.” Isabella’s ABI (acquired brain injury) is an invisible disability. Below are some of the ways that our family life has changed.

1.       Our day-to-day life is different:  As summer approaches, I think of how we spent our days prior to Isabella’s ABI.  We were either at the beach, swimming in the pool, going to cookouts and parties, taking day trips, going to the zoo or hiking. Prior to Isabella’s ABI, she was a lot more independent.  Since her ABI, our summer days are spent at speech therapy, occupational therapy, physical therapy, aquatics therapy, in-home behavioral therapy, hyperbaric oxygen treatment, infusions, meetings and doctors appointments. Isabella also requires help with daily tasks, such as getting dressed, brushing teeth, using the bathroom, etc. Our downtime has to be carefully planned out and revolves around Isabella and where she is mentally at any given moment. I have to consider her level of anxiety, aggression, mood, fatigue, etc when trying to plan an outing or activity.

2.       Others perceive us differently: Isabella looks like a typical seven-year-old child. She has an ABI, which is an invisible disability. Isabella is a completely different child than she was before her brain injury. She struggles on every level behaviorally, emotionally, psychiatrically, cognitively, verbally, etc. While others may be in denial that anything is wrong, I have come to terms with the fact that Isabella will never be who she once was. Accepting this early on has helped me tremendously. While Isabella was robbed of the life she was supposed to have, she is working really hard. Her future will be different, but she has a future I believe will still be bright – it just won’t be how I may have imagined it.

Kristin and her daughter Isabella participate in BIA-MA's #BrainInjuryAffects Campaign.

Kristin and her daughter Isabella participate in BIA-MA’s #BrainInjuryAffects Campaign.

3.       Isabella’s behavior can be unpredictable: Isabella gets out of control.  She can drop to the ground, kick, scream, hit and have a full out tantrum. Other times Isabella says and does the most inappropriate things. Isabella’s brain injury causes her do things that she can’t control. Having someone laugh, point, yell at either of us or add rude commentary does not help the situation. Isabella doesn’t need to be physically disciplined or ridiculed.  She needs support, understanding and positive reinforcement.  As a Mommy, I am doing everything that I can to help her and when we are judged, it makes us feel worse.

4.       Isolation occurs: As we continue on this journey, I have realized that everyone else’s lives are moving on and in many ways ours are not. Most of our family and friends have stopped inviting us to parties or events.  At first I was relieved because I didn’t have to explain why we couldn’t be there. It hurts when the invitations stop because it feels like family and friends have forgotten about us. It’s hard to hear about graduations, birthday parties, holidays and other get-togethers. While Isabella may not ready for those types of situations, there will be a day when she will. I am so thankful for those few people in our life that continue to invite us in hopes that one day soon things will change.

At the end of the day, do I wish things could be different for Isabella and our family? Yes, of course I do. I wish nobody had to suffer from a brain injury. That being said, the reality is a brain injury is not going to magically disappear. I am helping us embrace the life we now have and to make the best of what we have – it’s all in how you look at it. I am thankful for every moment and day I have with Isabella. The outcome could have been so much worse.  Brain injury changes every aspect of your family. It doesn’t mean your life is over, it means that you need to accept that a new life is about to begin.

The New Normal

Heidi Qua & her sons

Heidi Qua & her sons

Today’s blog is written by Heidi Qua, mother of Jacob and Eric. Her son Jacob suffered a traumatic brain injury, in 2004 when he fell from a third-story window. To read her entire story, click here.

A few days after Suspect Number Two from the Boston marathon bombings had been apprehended, I was speaking to a friend who lives in Virginia. “So, are things returning to normal now that the suspect has been caught?”  I laughed.  Normal? Things will never be normal again. We are entering a chapter of a “new normal.”

New normal is a phrase I used frequently when my then almost three-year-old son was discharged from the rehabilitation hospital, Franciscan Hospital for Children. In September of 2004 Jacob fell from a third floor screened window to the concrete courtyard below. He spent 19 days in NICU, 17 of which he was on a ventilator. Then we were moved to rehab where he, we, stayed for three more months.

When we were discharged, four days before Christmas, people assumed that we would be going back to our “old life.” They didn’t seem to understand that we couldn’t go back to our old life. My husband and I were trying to figure out our new life, our new normal. Rather than working full time, I was now shuttling my youngest child back and forth to therapies, and welcoming other therapists into our home.  I had to explain to my oldest son, Eric, who all these people were, and why his brother needed all this additional attention. We were trying to keep things normal for Eric, but even his life was forever impacted too.

As Jacob grew older, my new normal included monthly visits with different doctors – neurologist, physiatrist, or primary care doctor. The therapies continued, several times a week.  This is not what I call “normal.” As a young woman, when I thought about becoming a mother, I never thought “what pattern should we choose for my son’s AFOs (ankle-foot orthosis)?  Where can I buy shoes big enough to fit his AFOs?”  In fact, before Jacob’s accident, the world of rehab, therapies and AFOs was a world I had never given a second thought.

As much as I lamented my new normal, I realized I only had one option, and that was to accept it.  I actually started to appreciate our new life. Nothing was going to make Jacob “normal” again, and I was beginning to be OK with that. I fell in love with his funny little walk, or the way he throws a ball. Even now, at age 11, all I have to do is hear his walk and I know it is him. I realized quite quickly, back when he was in rehab, that Jacob is a hard worker. He never once complained about all the therapy he went through. To this day he is the hardest working guy I know. This past weekend he hiked over seven miles with a backpack on, carrying his camping gear. He fell down, 10 times to be exact, but got back up each time and kept going.

As we approach the nine-year anniversary of Jacob’s accident, I can honestly say I am content with my family’s new normal. I would be lying if I said I wish the accident never happened – no parent wants their child to suffer any injury, let alone a traumatic brain injury. That said, we have found victories in the small things, in the quietest of places, and we have learned to celebrate each moment with all three of our children, as we take this journey together.