Did you know that National Family Caregiver Month (NFC Month) is observed every November? The National Family Caregiver Association (NFCA) originated the observance in 1997 to focus attention on the more than 65 million family caregivers who provide 80% of the long-term care services in the US. A study done by AARP showed that family caregivers provide over $350 billion in “free caregiving services” just in care for older adults annually.

Caregivers of persons with brain injury are certainly represented in those statistics.

NFC Month has three main goals:

1. Designate a public time to thank, support, educate, and advocate for family caregivers.
2. Speak up about community programs which support family caregivers.
3. Advocate for stronger public policies which address family caregiving issues and the need for ongoing training and support.

For 2011, NFCA has announced a special theme: Identifying Family Caregivers. This need came about because caregivers are generally invisible in the healthcare system, even though they accompany the sick person to appointments and provide much of the care. Wouldn’t it make sense to have a place on the medical record or intake form to note the name and contact information of a survivor’s caregiver?

Studies have also shown that caregivers are at higher risk of depression and chronic illness. Wouldn’t it make sense to add the question “Are you a family caregiver?” to medical intake forms? That would alert the healthcare professional to ask about stressors, supports, respite arrangements, and medical screenings.

NFCA recommends that there be a space on all medical intake forms and electronic medical records to capture information about caregivers and care recipients. How can you take action now?

• When you fill out a form for yourself or a family member, make a note that you provide care for that person.
• Encourage your healthcare provider to add the recommended spaces to intake forms.
• Educate healthcare providers. Tell your provider about the specific challenges and stressors you face. Share your concern about health consequences, and ask for resources.

Raise awareness about NFC Month

Each of us has a valuable story to share. What better time to reach out to your community or the media to raise awareness and gain support for caregiver resources?  Here are a few ideas.

1. Pitch a story to your local newspaper or radio station. Community and national TV stations and cable networks welcome important stories which feature local families and link to a national issue.  Here is an example: First, pick a story about a support group you’re involved with, or an accomplishment you helped the survivor achieve. Write down what you think is important to convey. Then, contact the reporter by telephone or email. Match your topic to a reporter for that section of the newspaper-i.e- the feature section, the metro section, or a columnist who covers “human interest” stories.
2. Write your own article. Don’t be shy! You are an expert on many aspects of brain injury, caregiving, and advocacy. Write an in-depth article or personal essay. Be sure to include your byline! Send the article to local newspapers, magazines, newsletters, or blogs.
3.  Submit a letter to the editor or an op-ed piece. Do you have an opinion about funding cutbacks for homecare programs? A bill being debated in your state legislature that affects caregivers or survivors? Write a letter in response to an article or editorial. You can also submit an op-ed piece which offers your insider’s perspective on an issue along with your recommendations. You can check the newspapers specifications for submitting op-eds in that section of the website. When you raise your voice in a public forum or contact legislators to improve laws and policies, you’ve gone beyond being an advocate to being an activist.

Celebrate and Support Family Caregivers

1. Start at home by organizing a family & friend meeting. NFC Month is a great time to bring everyone in your circle (involved or not) up to date on the challenges you and the survivor face. Provide a detailed list of ways others can help. Be creative and assertive. In addition to direct care, ask for help staging a yard sale to clear the house. Or help mastering the Internet or organizing records. Ask a friend to coordinate help with an online tool such as Lotsahelpinghands.
2. Tell your survivor and family how you would like to be acknowledged. Caregivers often skip over our own need to feel thanked and appreciated. How about requesting a gift certificate for a massage or yoga class? Coverage for a night out with your friends? A thank you card signed by the survivor?
3. Participate in community education and celebration activities. Refer to the NFCA list of ideas for how to celebrate NFC Month in your community, organization, or spiritual tradition.

We all know that there is power and strength in numbers. Join with caregivers across the US to raise awareness, and advocate for policies and programs to empower caregivers. Most of all, take pride in your extremely valuable part in your loved one’s health, recovery, and well-being!

Brain Injury Caregiver: November is National Family Caregivers Month is a post from: Janet Cromer

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After brain injury hits your family, getting reliable information you can relate to is essential. In addition to the information provided by hospital staff, you might find that memoirs written by survivors and family caregivers provide hope, valuable tips, ideas, and inspiring stories when you need them most.

On October 24, 2011, I’ll have the privilege of speaking on the panel “Life after Brain Injury: Havoc, Hope, and Healing” with Dixie Coskie and Larry Kerpelman, Ph.D. at the Concord (MA) Festival of Authors. We will share our experiences as family members of children and adults who had brain injuries, and as authors who hope our stories will be beneficial for other families and the public.

First, let me tell you about the two books that Dixie Coskie wrote following her thirteen year old son Paul’s severe traumatic brain injury. On September 6, 2001, Paul was hit by an SUV while riding his bike. Dixie started writing a journal to chronicle Paul’s injuries and recovery even while he was in a coma and on life support machinery. She wrote letters to Paul to describe all that happened, along with her responses, prayers, and worries. Her journal became Unthinkable: A Mother’s Tragedy, Terror, and Triumph through a Child’s Traumatic Brain Injury. Dixie and her husband, Steven, have eight children, and Dixie does a fantastic job of explaining the impact of Paul’s TBI on each child. She imparts detailed information about how to explain TBI and changes in a sibling to children of all ages.

The journal is heart wrenching in its honesty and detail. I read at top speed to follow Paul’s progress from the ICU to Franciscan Hospital for Children where progress was measured by the ability to lift his leg ¼ inch, or track a toy from left to right with his bright eyes. We readers never doubt that Paul is inside his damaged body, and that his will to live and fight is fueled by the love and fierce determination his family brings.

Dixie compares Paul’s struggles to relearn the most basic forms of movement and communication to the developmental phases of childhood. Paul returns home, and the drive to reduce or compensate for disabilities never falters. Her summary of their fight to have Paul educated at his former high school will inform other parents of children with disabilities.

Dixie opens up very personal areas, a form of courage for which caregivers will be most grateful. I found the most striking section to be her description of how sick she became from post-traumatic stress syndrome and a musculoskeletal condition. I’ve often said that post-traumatic stress responses are common, but rarely recognized or treated in caregivers. Dixie also portrays herself as a mother and her family with compassion, humor, and understanding. She doesn’t pretend to be perfect, and the access she allows us to her inner thoughts is refreshing and reassuring.

At the end of each chapter, Dixie includes the most comprehensive and specific tip sheets for that phase that I’ve ever read. Written for parents, many tips would be equally applicable for caregivers of adults. Every acute care and rehabilitation hospital would do well to hand out Unthinkable to the families of brain injury patients.

Dixie’s second book, Unthinkable: Tips for Surviving a Child’s Traumatic Brain Injury, was released in June. The book features a collection of tips from the first Unthinkable, and would make the most thoughtful gift for parents who crave hope, direction, inspiration, coaching, and a warm arm around their shoulder.

Pieces Missing…and Regained

When most people think of brain injury, they think about Joanie Kerpelman’s experience. Joanie led an optimally healthy lifestyle and exercised regularly. The cruel irony was that Joanie tripped and fell while jogging. She fell on her face, and suffered a subdural hematoma- an area of bleeding between two of the membrane layers covering the brain. The bleeding resulted in a traumatic brain injury which caused problems with pain, memory, speech, and changes in her sense of self. In his memoir, Pieces Missing: A Family’s Journey of Recovery from Traumatic Brain Injury, Larry Kerpelman chronicles Joanie’s injury, surgery, and rehabilitation with clarity, intelligence, and a husband’s loving presence.

Joanie required three emergency department visits, risky neurosurgery, and a year of rehabilitation to reach her goal of recovery. Larry’s reminiscences about their courtship, forty year marriage, and vibrant family life with two children result in the reader truly caring what happens to the Kerpelman family. The rehabilitation strategies and techniques devised by professionals and the family will give readers ideas to try. He portrays the inevitable setbacks and disappointments as realistically as the cumulative steps to recovery. Larry’s attention to the nuances of Joanie rebuilding of her confidence and sense of herself as a competent woman will resonate with many survivors and families.

Larry includes succinct explanations of terminology, and more involved discussion of brain injury issues throughout the narrative. His background as a psychologist and public policy consultant comes through in discussions about the strengths and deficiencies of the US healthcare system.

Join us at the Concord Festival of Authors

The fantastic Concord Festival of Authors features over 40 authors and 26 events from October 20-November 6, 2011. We are excited that our panel, “Life after Brain Injury: Havoc, Hope, and Healing” will take place at Emerson Hospital, Cheney Conference Room on October 24 at 7:30 pm. For complete information about the Festival, please visit the website at www.concordfestivalofauthors.com. We look forward to meeting you!

Brain Injury Caregiver: After Brain Injury come Havoc, Hope, and Healing is a post from: Janet Cromer

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Those of you who’ve read Professor Cromer Learns to Read: A Couple’s New Life after Brain Injury know that Alan suffered a massive heart attack and cardiac arrest in 1998. The resulting lack of oxygen led to a severe anoxic brain injury.

I’ve written a lot about our journey of rehabilitation, reinvention, and reclamation.  Over seven years, we built a new identity for Alan, a new kind of marriage, and a new life together. Tremendously challenging and tremendously gratifying work. Alan sometimes thought about all the changes caused by the brain injury. He was well aware of the monumental losses to his intellect and career. Even so, he was justifiably proud of his unflinching motivation and boundless resilience. I was well aware of the monumental depth of our love, and the flourishing growth of Alan’s heart and soul. Most of the time, Alan said he had a good life, even with its restrictions.

Alan died of heart disease on September 3, 2005. I still miss him every day, although the sharp pain I felt for years has softened. Now I can focus on the better memories, the parts of our life together that make me smile. While I was a caregiver, I spent so much time thinking about what I wasn’t doing enough of, or how many other ways I could make Alan happy. How to keep his mind calm and engaged as dementia marched along.

I didn’t have the full appreciation for all that we did RIGHT, for how much we truly accomplished that I do now as I look back. I can linger over how creative and resourceful we were-and all survivors and caregivers are. I remember how we relished living fully in the moment. I can forgive myself for not knowing everything, for the mistakes I made, for the times I was so exhausted and stressed that I wasn’t as patient as I wanted to be.

Back then I did savor the times when Alan and I shared a heart connection, had a good laugh together, and sang our favorite songs before bed. The good times with Alan, family,and friends gave me the energy and hope to deal with the dark times.

So, if I have one suggestion for those of you who are caregivers now it would be this: Have mercy on yourself and your loved one. Extend compassion and warmth to your imperfect self. Immerse yourself in the joyful moments of deep connection and shared pleasure. You are both doing a wonderful job with the fullness of your humanity.

I’ll end with a poem I wrote for Alan and I early in his illness. I read this poem at Alan’s memorial service. Many of you already have a wellspring of the ferocious love that powers us all during catastrophic illness. I wish you a never-ending source.

Ferocious Love

Janet Cromer

Ferocious love builds fortress walls
and dragon-filled moats around a kingdom
only the courageous may enter.
This love blazes in the dark, powers the body,
ignites the spirit, and fights for justice.

Ferocious love flinches and recoils when struck,
tires and wails, whines and screams,
sinks to the depths of despair,
and shakes its fists at the heavens above.
Yet in the end, proves indefatigable every time.

Ferocious love spreads a balm of honey
over the ravages of being, and
licks the soul until it is pink and pliable anew.
This love draws from the wellspring of passion, hope,
and love, and blesses the world with morning rain.

Ferocious love embraces the whole catastrophe
with compassion,
bows to the heavens above,
breathes in deeply,
grabs a partner, and dances all night.

My Alan, I love you forever. May you rest in the sweetest peace.

Brain Injury Caregiver: The Memories I Treasure Now is a post from: Janet Cromer

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This week the National Institutes of Health(NIH) released a statement announcing that NIH will partner with the Department of Defense to build a central database on traumatic brain injuries (TBI). The new database will be called the Federal Interagency Traumatic Brain Injury Research (FITBIR) database. The purpose of the database is to speed up research on the best ways to diagnose and treat TBI.

Did you know that, even with existing research and treatment programs, it is very difficult to diagnose many injuries and predict which treatments will give the best outcome over time? There are several reasons for this problem.

First, brain injuries are highly variable. We say that each brain injury is as unique as the person it happens to. There are many different causes of TBI. The injury can affect different locations and functions within the brain. Different causes lead to different kinds of damage to brain tissue. And these confusing variables apply only to traumatic brain injuries, which are the most commonly reported and studied type of injury.

Second, researchers conduct their studies, and then report the data and results in ways that are not standardized across the research field. This makes it hard for doctors and therapists in one hospital to assess whether they could use the treatment the researchers describe, and whether it might help their patients.

The new database will address these challenges by collecting data in a uniform way. It’s important to know that patients will give informed consent for their data to be included without identifying information.

As I read about the database, I could appreciate the many contributions that could come from such a comprehensive compilation of information. Expected benefits include:

1. A system to classify different types of brain injury.
2. More studies to identify which treatments may better help each patient.
3. Improved criteria for diagnosing concussion and milder TBI.
4. Finding predictive markers to identify survivors at risk of developing TBI-related conditions.
5. Better understanding of how age, sex, and other medical conditions affect injury and recovery.
6. Improved evidence-based guidelines for care from injury through rehabilitation.

I believe the database will lead to tremendous advances in research and treatment of TBI.

However, there are two huge issues that will not be addressed by the FITBIR database, and I wonder how they could fit in or be included in subsequent generations of the database.

The first issue is compiling research on family caregiving education and support. Family caregivers provide direct care and extensive rehabilitation at home for years after the TBI occurs. Many rehabilitation hospitals have developed short classes or programs to introduce families to the essential information about life after brain injury. To my knowledge, there is no database to access these models of education. There is sparse research on which information is vital and how best to teach highly stressed families early in rehab.

Might it be possible to include a section in the FITBIR database to compile data on family educational programs?

The second issue is the overwhelming need for a national database on acquired brain injury (ABI). Acquired brain injury is typically considered an injury that happens after birth and is not caused by trauma. In other words, something that goes wrong inside the body. Causes include lack of oxygen, infections, strokes, aneurysms. I understand the complexity of gathering information when so many different causes are involved. However, the Brain Injury Association of America estimates that 795,000 people sustain an acquired brain injury annually. Huge numbers, and many cases go  unreported.

Many people who have acquired brain injuries receive treatment in the same programs as those who have TBIs. We need much more research on which treatments are most effective for each category of patients, and what happens to people with ABI as the years go on. My husband Alan suffered a severe anoxic brain injury following a cardiac arrest. He made tremendous progress during intensive rehabilitation, and later at home. Unfortunately, Alan developed several medical problems his doctors considered to be linked to his brain injury. Even though many more people survive cardiac arrest now, I never found research on the long-term effects of anoxic brain injury.

How we can get involved

The FITBIR database has the potential to lead to research that will benefit many brain injury survivors. We, as survivors and family members, can make our suggestions and concerns known to doctors who are conducting research. Hospitals set up advisory boards to oversee research studies the staff is conducting. You can volunteer to serve as a consumer on the board, and contribute your ideas for research topics.

The National Institutes of Health distributes taxpayer funds to researchers. As a taxpayer, you can contact the NIH to express your opinion on research projects. Let’s advocate for the most comprehensive and relevant research to benefit brain injury survivors and caregivers.

Brain Injury Caregiver: Effective Research and Treatment Partnerships is a post from: Janet Cromer

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Brain injury can cause many changes.  There may be temporary or permanent losses directly related to injury impairments. These might include changes in mobility, thinking, memory, or communication skills. We grieve those changes early in treatment, then pursue rehabilitation to regain as much as possible.

We all know about the primary losses that happen with brain injury. However there are many secondary losses for both the survivor and caregiver. For the survivor, there might be changes in identity, relationships, roles, vocation, and finances. All huge and traumatic.

For the caregiver, the secondary losses may seem more subtle. When my husband Alan had a severe anoxic brain injury, some of my losses included leaving a job I liked very much, giving up relationships with colleagues and clients, and limiting personal freedom since Alan could not be left alone. Most of all, we lost the mutuality that couples take for granted. Alan was rebuilding his sense of who he was, and he didn’t know anything about me beyond what I did to care for him. His ability to empathize and participate in our familiar roles was gone. He just was not the same Alan or same husband.

There is a name for this kind of loss. It’s called ambiguous loss. Ambiguous loss is also known as “mobile mourning” and “chronic sorrow.” It can affect both the survivor and family member in deep and ongoing ways. Family caregivers may recognize it as that strange feeling that the person who survived the brain injury is just not the same person he/she was before. It’s confusing because you may be grateful that the person lived, but grieve for the person he was before. Ambiguous loss matters because it can make it hard for you to find hope or move on in this “new normal” life.

What does ambiguous mean? It means unresolved or without closure. Consider that when someone dies, our community usually gathers for a funeral or other rituals. Everyone participates to acknowledge the death and support the family. However, when a person lives through a moderate-severe brain injury, his personality, emotions, or behavior may change in ways that are very different. But there is no ritual for a community to rally around the grieving family.

When the survivor “looks like nothing happened” on the outside, the situation gets even more confusing. The survivor may be present in the family physically, but absent psychologically because of emotional or cognitive changes. Perhaps he can’t perform his roles in the family as before. His memory may be impaired, so he doesn’t even remember the personal stories families cherish.

Ambiguous loss (AL) has some features worth understanding:

1.  The loss is always about relationships. It is an extremely stressful type of loss.

2.  It is a normal response to a very traumatic situation. Feeling the loss doesn’t mean you’re not coping well or that you have mental health problems. It does mean you deserve to find help.

3.  There is often uncertainty about whether the survivor will return to being his former self, or how long that might take. There are no guarantees or time frames.

4.  The caregiver may have a range of conflicted feelings about this “newer” person, and her ability to love and care for him. She may feel angry and betrayed one day, grateful and engaged on another day. It’s all normal.

5.  AL is not the same as depression. However, it can contribute to depression, anxiety, conflicts, illness, or explosive emotions if not addressed.

6.  AL can go on for months or years, and lead to physical and emotional exhaustion.

What can we do to live with ambiguous loss without becoming hopeless or sick? We can try to recognize, learn to cope, and move forward. There are many ways to approach this, so I’ll start with a few key points:

1. Recognize what’s going on. Underneath that confusion is a long list of the losses, changes, and conflicted thoughts and feelings. Spend some time writing without censoring yourself. Talk to other family members about their observations. Talk to the survivor about what bothers him/her most. Naming a problem or loss does not make it worse. It can bring it into the light so healing can begin.
2. Find a safe and supportive connection. Consider talking to an experienced therapist, counselor, or spiritual leader. Ask if they know about ambiguous loss in advance. You deserve help from someone who understands the issue. A good support group can lift the burden by talking to others with the same problem and learning how to make meaning and find hope.
3. Make meaning of the situation. Over time, come to a shared understanding of what’s been lost for each family member. Also focus on what remains and can be built on. Take the time to mourn whenever you feel the need. It is not disloyal to mourn for someone while getting to know the person now present. Perhaps a spiritual practice or faith can offer solace or guidance.
4. Get to know the survivor as the person he is now. You can gradually rebuild family roles, rituals, and rules to live by. I wrote about how we began in this post.
5. Incorporate humor and fun whenever possible.
6. Adopt “both/and” thinking. That means you become comfortable with the paradox instead of needing to think in “all or nothing” ways. I thought, “I’m worried and angry about Alan’s difficulty memory problems, and I know the new strategies we’re practicing will help a lot.”
7. Find hope and new options. The situation may not change completely, but you can choose new sources of hope and new things to hope for. Explore and appreciate all the options open to you to move in a new direction, one small step at a time.

Thank you for reading all the way through this very long article! I consider ambiguous loss to be one of the most important challenges survivors and families can face and master. There are several good resources for more information on the Lash and Associates website. I’ve also followed the work of Dr. Pauline Boss for many years. In future posts, I’ll go into the approaches in more detail.

Brain Injury Caregiver- Ambiguous Loss Complicates Hope and Healing is a post from: Janet Cromer

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Post-traumatic stress disorder (PTSD) has been in the news recently because so many service members come home traumatized by their battle experiences. Brain injury survivors often have a post-traumatic stress reaction. Family caregivers can also experience trauma and its effects, but we don’t hear much about that. I believe this is an extremely import mental health issue. Caregivers and other family members can be traumatized by being in the accident that led to a loved one’s brain injury, the shock of watching emergency treatments performed, waiting days and weeks for the survivor to awaken from coma, or several other events.

Post-traumatic stress (PTS) differs from full-blown PTSD in certain symptoms, how long the symptoms last, and their severity. But if you don’t get help managing the symptoms early on, the condition can become more serious.

A recent research study found that the main family members of patients who had severe brain injury had high rates of post-traumatic stress in the first month after the injury. I give the researchers credit for legitimizing what I’ve been hearing for years as a support group facilitator:  Witnessing your loved one’s fight for survival is shocking. Helping him/her to regain basic functions is wrenching. Uncertainty about how much recovery is possible adds anxiety and worry. Feelings of responsibility alternate with helplessness. Sometimes the traumatic response lasts a long time.

Post-traumatic stress responses affect the body, mind, thinking, and functioning. Psychologists divide the symptoms into several categories including: hyperarousal, intrusive thoughts and images, and avoidance behavior. The symptoms serve a purpose that feels protective or safe at first, but can lead to ways of dealing that make it harder to cope, adjust, and make the important decisions necessary after brain injury.

Reading the article brought back memories of my PTS reaction. My husband Alan suffered a massive heart attack and cardiac arrest that led to a severe anoxic brain injury. We were on an airplane awaiting take-off from Chicago to our home in Boston when the cardiac arrest happened. We dragged Alan into the aisle of the plane, and a doctor began CPR. However, the flight lacked a defibrillator or medical equipment. Minutes seemed like hours until EMT’s arrived to bring Alan to a hospital emergency department (ED). I watched in horror as the color of his face changed from white to blue to black.

It took almost an hour of CPR to bring Alan back to life. His prognosis was grim, and I was told he might not have brain function. He fought valiantly through many, many complications. We stayed in Chicago for a month before Alan was remotely stable enough to return to Boston via air ambulance.

After a few days of living in the ICU waiting room, I started to have problems beyond the stress, anxiety, and shock you’d expect. When I tried to sleep, I saw the scene of Alan’s face turning black as if watching a movie on a giant screen (intrusive image). During the day, I’d be pulled back to the chaos on the airplane and ED as if the arrest was happening now (flashbacks). My heart beat sped up, and I had trouble breathing. I didn’t want to sit still, but was afraid to move (hyperarousal). I could tell myself that Alan had survived the arrest, but the trauma was a shock to my system that exceeded rational thought.

Then, being anywhere near the emergency department felt unbearable. I hated taking the elevator down to the cafeteria because the door opened next to the ED. A wave of nausea swelled up, as tears filled my eyes. I made excuses to eat from the waiting room vending machines rather than risk seeing another unconscious patient being rushed in to the ED (avoidance). The frequent calls of “Code 99…” on the overhead speaker brought back the soul-chilling experience of waiting alone while Alan was resuscitated. Whew!

I don’t want to traumatize you with my story. Rather, I want to show how a post traumatic stress reaction comes about. Now here is the good news: effective treatment is available. When you realize that you’re suffering from PTS, get professional help. The reaction might simmer down over time, but the danger is that it can contribute to health problems, anxiety, depression, insomnia, and inability to participate in your loved one’s care and rehab.

Some of the treatments that help people with PTSD are relevant to caregiver’s post-traumatic stress also. These include anxiety management techniques, working with intrusive images to diminish their power, and learning more constructive ways to challenge catastrophic and fearful thoughts. One advantage of these techniques is that they’re also a great foundation for managing the stress that comes with major life changes and caregiving.

Here’s how I used these techniques. I practiced relaxed breathing and meditated for 15 minutes several times a day to block the stress response. I talked to a few confidants about my trauma, and shared my feelings in a safe way. When I felt calmer, I used imaginal exposure to break the grip of the “movie” on me. That meant deliberately calling up the image, but then visualizing healthy color coming back into Alan’s cheeks as he woke up and smiled at me. When I needed an anchoring thought, I said, “Alan did survive. He is alive and receiving good care. We are moving forward.” In time, I overcame PTS and I urge you to get the treatment you deserve too.

And a note to researchers and clinicians: please screen caregivers for PTS, and continue to find effective treatments for our specific problems.

Brain Injury Caregivers- Post Traumatic Stress Needs Early Treatment is a post from: Janet Cromer

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Brain injury caregivers give their injured family member their all. Every day we give full attention to the cognitive, physical, emotional, and social needs of our loved one. The stress of caregiving is undisputed, and the health hazards abound.

Yet, so many caregivers feel guilty if they spend a little time feeling sorry for themselves or having a short “pity party.” I have a good friend I’ll call Sue. Sue has been a caregiver for her husband Simon for four years since his stroke. She does everything in her power to keep Simon happy, healthy, and active in spite of his weakened left side, incontinence, and problems communicating. When Simon gets frustrated and angry, he yells at Sue.

I recognize this scene because my husband Alan sometimes took out his frustration and anger on me. There is no effective way to argue with a partner who has cognitive dysfunction. We caregivers learn how to minimize the outbursts, respond constructively or leave the room until the storm passes. But we can be left feeling hurt and unappreciated.

Last week Sue called me to say, “I’ve been lying around feeling sorry for myself. I know I shouldn’t give in to it, but sometimes I can’t help having a pity party because my life is so limited now and my husband has changed so much.”

Sue’s call got me thinking about the times I felt overwhelmed by responsibilities and wished I could honestly ask for comfort and empathy from others. What held me back from asking for that kind of support was what I call the “Caregiver’s Code.” The Code is unwritten but enforced by some caregivers and many outsiders who expect the caregiver to appear stoic, in control, and above “weak” emotions at all times. Sometimes people I tried to be honest with said, “But you’re doing such a great job, you’re so strong…,” etc. I think our situation terrified them, and my vulnerability implied I needed there help more-which was true.

Think about it. How often do we praise a caregiver by saying, “She never complains or feels sorry for herself. As if that was a state of mind that we should aspire to. Book reviewers who write about memoirs by caregivers or sick people usually give extra points to authors “who write without self-pity.”

Well, I say caregivers have a right to feel sorry for themselves sometimes. We have a right to the full range of emotions. Sick people have that same  right. What are some benefits of feeling sorry for yourself anyway?

When I was felt sorry for myself (FSFM) I slowed down to attend to my losses and needs. I listened to that inner voice and learned a lot. I gave myself the same respect I gave Alan, and extended an empathic ear to my concerns. Once I contemplated what hurt today, I could make a plan to get more help, grieve and let go, beg the family for respite, or put a particular episode in perspective. FSFM gave me a time-out to lick my wounds and acknowledge the reality of how hard parts of our life had become.

I like the cognitive-behavioral therapy technique of spending a pre-set length of time in a “wallowing chair.” When I felt a FSFM bout coming on, I sat in my favorite arm chair in my meditation nook. I set an alarm for 30 mins. Then I let my mind wander and name the reasons I wanted pity. I explored these thoughts in my journal. If I realized I needed something I could actually seek, I made a note to follow-up. When the alarm sounded, I usually got up. Of course, there were days when I just wallowed on the couch in my bath robe too.

What’s the risk in FSFM? The danger comes when it crosses the line into depression, or feeling helpless and hopeless. If you find yourself feeling very sad, numb, angry, ruminative, or unable to concentrate, get professional help. If your energy level stays low for a few weeks, you can’t sleep, can’t complete responsibilities, self-medicate with alcohol or drugs, or feel like a robot pushing through the day, please get help. Depression is very common in caregivers (for good reasons), but under-recognized and under-treated.

So, please set aside the guilt about FSFY, keep an eye on your mental health, and give yourself more of what you need to be a resilient caregiver.

Brain injury Caregivers: The Value of Feeling Sorry for Yourself is a post from: Janet Cromer

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I recently participated in the Harvard Medical School course “Building Resilience: The Mind Body Revolution in Health and Healing.” Brain injury caregivers can benefit from reducing stress and cultivating resilience in many ways.

The focus of the course was on applying new research about resilience and positive psychology to heal the mind/body mechanisms of chronic stress that contribute to illness and psychological distress.

Ann Webster, PhD introduced us to drawing a life road map to reflect on our lives and appreciate some of the ways we’ve become resilient from coping with life events. We quickly became immersed in drawing, writing, and feeling as memories led to putting experiences into words and feeling the emotions that came with those thoughts.

In Part One of this post (dated June 8), I wrote about drawing a life road map from the past to the present. Please read those directions before trying this map. In this post, we’ll move into a life road map from the present to the future. We’ll also talk about ways to reflect on your life as a family caregiver now and down the road.

Now you have the opportunity to create a map of the life you want to lead from now into the future. Many goals, dreams, and passions start with setting an intention. Once you have the intention, you can focus on cultivating the thoughts, beliefs and actions to nurture that goal to fruition.  So, let’s get started. Take a large sheet of paper, colored markers, and any other art materials you want to play with.

What matters most to you in your life now? What do you want to do more of in the near and distant future? What gives your life meaning and purpose? What are you done with and ready to let go of? Any limiting beliefs or actions that don’t serve you anymore? Which of your qualities do you cherish and want to build on?

There are several areas you can consider when envisioning your future. You might start with relationships, especially if you are a caregiver. Are there changes you could make that would bring in more resources or lessen your burden? Are there relationships you want to foster to sustain and invigorate you? How about your relationship with the person you care for? What works well, gives you joy and pleasure? What needs to change to heal a conflict or protect your health? Who would you like to spend more time with, and how could you make that happen?

Another key area is your health. Are their steps you can take to reduce the harmful effects of stress? Or practices, such as meditation or yoga, that would benefit your mind-body connection?

How about your life work? Is your current career meaningful and satisfying? If you see a job change or retirement on the horizon, what would you rather be doing? Would you need to update your education or skills? Is a volunteer role calling to you?

Contemplating spirituality and self-transformation can free the imagination as well as the soul. What gives meaning to your life? How would you like to grow as a human being? What would you like to explore? Is there something missing in your heart? What can you do to give yourself more of what you need?

And let’s not forget creativity. Creativity can add so much zest to life? What interests have you not had time to develop? Are there dimensions of yourself that have stayed in the background while you took care of everyone else? Do you want to travel? How about expressing yourself through art, music, community theater, woodworking, dance, etc?

Okay, you may be asking “How much control and choice does a caregiver have to plan her/his life going forward.” I would answer, “More than we sometimes think.” That’s because we can get so involved in the responsibilities and routines of caregiving that we stop thinking about setting intentions and goals for ourselves. I truly believe that giving ourselves the time to draw and reflect on these life road maps can open new ways of seeing, and let us appreciate our own strength and resilience. The experience may encourage you to invest energy and mindfulness in all that strengthens and heals your mind, body, and spirit.

I’ll look forward to your comments after you’ve tried drawing your life road map.

Brain Injury Caregivers- Cultivate Resilience with Life Road Maps- Part Two is a post from: Janet Cromer

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• Brain Injury Caregivers: Cultivate Resilience with Life Road Maps
• Brain Injury Caregivers- Revitalize Resilience through Mind Body Health
• Brain Injury Changes Life in an Instant

I recently participated in the wonderful Harvard Medical School course “Building Resilience: The Mind Body Revolution in Health and Healing.” Brain injury caregivers can benefit from reducing stress and cultivating resilience in many ways.

The focus of the course was on applying new research about resilience and positive psychology to heal the mind/body mechanisms of chronic stress that contribute to illness and psychological distress.

Ann Webster, PhD introduced us to drawing a life’s road map to reflect on our lives and appreciate some of the ways we’ve become resilient from coping with life events. We quickly became immersed in drawing, writing, and feeling as memories led to putting experiences into words and feeling the emotions that came with those thoughts.

In this post, I’ll give you the basic instructions. In my next post, I’ll include some specific ideas I’ve thought up to reflect your caregiving experience. There is no right or wrong way to draw a life road map. Your map will be as unique as you are. You can make a map in one sitting, or pin it on the wall and add to it over a week.

The only supplies you’ll need are two large sheets of paper and a package of colored markers. If you have any other art materials, stickers, or collage makings around, feel free to include them. The first map covers your life from past to present. Start in the lower left corner of your paper. What was the first event, person, or situation that was really significant to you? Find a starting point for your life story.

Work from that time and draw or represent the important events, the people who influenced you, your road blocks and “speed bumps” along the way. Include mentors, teachers, and role models. What or whom are you grateful for? What or who were your challenges? What are you most proud of?  What shaped you to be the person you are today? Be sure to include some triumphs and accomplishments.

When I drew my road map, I floated between sorrow at my father’s death when I was 12, and recognition of the strength and compassion overcoming early family tragedies instilled in me over time. Reading and art offered solace and expression during those years, and I learned to quietly reach outside my family for support. All skills that served me well through life.

I felt excited as I mapped out my education and jobs I really liked. I remembered the people who helped me thrive in pioneering roles. My first head nurse, Agnes MacDonald. Did I ever thank her enough? At Lesley University Graduate School I immersed myself in the creative arts therapies- art, psychodrama, writing, movement and dance. An exhilarating experience that directed my passions into new specialties.

Next came the wonderful years of my marriage to Alan. Renovating a huge old house in Boston to be our home. Two trips around the world when he taught on sabbatical.  The extended family that gathered at our home on holidays. Our dogs Molly and Nicky.

And, of course, Alan’s cardiac arrest and severe anoxic brain injury. It was too hard to condense those seven years into a small space, so I got the idea of a magnified road map of that time period. We’ll talk about that in my next post.

But you get the idea. Illustrate and jot little notes about your life up to the present time. Maybe you’ll share the story with someone close, maybe you’ll reflect on it at greater length in your journal. The important part is to recognize all the challenges you’ve already faced and overcome in life. Are there lessons, attitudes, beliefs, connections you can take from the past and apply to your life now?

The second part of the life’s road map exercise is to draw a map of your life from the present to the future. Imagine- you have the power to choose what matters most to you in your life going forward. I’ll explain more in my next post. I’d like to here what you realized about your own resilience after drawing your map. Please share a comment.

Brain Injury Caregivers: Cultivate Resilience with Life Road Maps is a post from: Janet Cromer

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• Brain Injury Caregivers- Revitalize Resilience through Mind Body Health
• Brain Injury Changes Life in an Instant
• Brain Injury Caregivers: Express, Explore, Energize, and Create!

Family caregivers are experts on stress, responsibility, complicated emotions, and the toll that combination can take on body and mind.  Did you know that there’s a specialty called Mind Body Medicine (MBM) that teaches us ways to reduce the harmful effects of stress on health and well-being?

I’ve been involved in the specialty of Mind Body Medicine since I was a young nurse during the 1970’s.

Back then, MBM was a new frontier in Western medicine that was rapidly embraced by some healthcare professionals and patients, while being considered “unscientific” or “touchy feely” by others. The central belief- that the mind and body are inseparably connected- made perfect sense to me, so I jumped aboard the bandwagon. Practitioners emphasized that complicated interactions take place between our bodies, thoughts, emotions, beliefs, and the external world. Those interactions could contribute to positive or negative health.

In fact, other cultures and healing traditions honored this complex interaction for centuries. Dr. Herbert Benson was a pioneer in developing and researching mind body approaches to helping people reduce stress and be active partners in healing and managing common medical conditions. Do you remember his first book The Relaxation Response?

One of the big attractions for me was that I was encouraged to learn and integrate the relaxation response, cognitive restructuring, yoga, and other wonderful practices into my personal life at the same time I was teaching them to patients.

Over the years, I’ve practiced and taught many forms of meditation, visualization, and focusing. Time and again I’ve circled back to the relaxation response as the form of centering and calming that works best for me.

A lot has changed since the 1970’s. During those four decades, Dr. Benson and other wise leaders have published tons of research that proves both the negative health consequences of too much stress, and the powerful techniques we can use to focus, release, correct, and heal. Hmm, that must mean that I’m no longer a young nurse.

Now MBM is considered to be scientifically advanced and evidenced-based. MBM is used as a primary or adjunctive treatment for many diseases.

Next week I’ll be at Harvard Medical School to take a course on “Building Resilience: The Mind Body Revolution in Health and Healing.” I want to get up to date on all the latest research on positive emotions, nutrition, cultivating humor in difficult situations, and transcending limiting beliefs.

Best of all, I’ll get to revitalize the practices I know keep my mind and body in top shape,  yet I’ve slacked off on practicing regularly. All week we’ll be diving in to experience everything we’re reviewing. What could be better?

I’ll pass along great insights and tips in my blog all week. So, please stay tuned, and try a new way to invigorate your mind body self along with me! And please send a comment about the stress busters you couldn’t live without, and any questions about trying new ones.

Brain Injury Caregivers- Revitalize Resilience through Mind Body Health is a post from: Janet Cromer

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• Brain Injury Caregivers: Express, Explore, Energize, and Create!