Brain injury is independent to the person.

Families may be acutely aware of changes in their loved one after brain injury. Symptoms vary, depending on many factors including the type of injury, severity, neurology, and individual differences. Changes may become more evident over time. Often, however, changes and challenges - that impact every aspect of everyday functioning - may remain invisible to the world. Some changes may also be invisible to a loved one with a brain injury, especially if the injury impacts the frontal and pre-frontal areas of the brain.

Most Common Changes

PERSONALITY. Often people seem vastly different after brain injury. Someone that was once careful and methodical may become impulsive and uninhibited. Another person that was very analytical is now driven by emotion. Families may witness numerous changes after an injury. Some changes may persist while others fade away with time.

BEHAVIOR. Changes in behavior may also be noticed, such as aggression, verbal outbursts (more yelling, cussing, etc.) and social isolation. Some find it difficult to engage in activities they used to enjoy.

EMOTION. Changes in emotion are common as well and may include increased agitation, irritability, mood swings, increased anxiety or feelings of sadness. Other changes include a lower level of tolerance for frustration and feeling easily overwhelmed.

COGNITION. Changes in cognition may include memory, concentration, planning and problem solving. Injuries that impact the frontal lobes may lead to challenges in initiation, planning, organizing and completing tasks.

LANGUAGE. Some experience changes in language and increased difficulty communicating with others. Survivors may have difficulty expressing themselves as well as difficulty understanding what others are saying.

MORE BIG CHANGES. Some may become easily fatigued. Others may have new challenges with eating, breathing, loss of motor function or chronic pain. It is also common for survivors to hear voices.

Reference: The Traumatized Brain: A Family guide to Understanding Mood, Memory and Behavior after Brain Injury, by Vani Rao, MBBS, MD and Sandeep Vaishnavi, MD., PHD

A few researchers sat with families and interviewed them about their experiences following a severe brain injury (Stenberg, Stalnacke, & Saveman, 2022). Their findings were interesting, but I’m sure they are not a surprise to families living with brain injury. Here are their findings. Do any of their findings sound familiar to you?

• Loneliness. All families reported feeling of loneliness. These feelings lasted 7 years or more for spouses/partners.

  • Many families attributed feelings of loneliness to a lack of understanding from other people regarding the brain injury. Some talked about how their support network of friends and family began to drop off once recovery slowed. Many began to decline invitations to events with friends and family members.

  • The injured family member also experiences loneliness. One of the reasons for this is that they have no memory of the event (due to being unconscious or experiencing prolonged amnesia). They must rely on others to fill in the gaps which adds to feelings of isolation. Other factors that contribute to feelings of loneliness include decreased self-confidence, other people’s inability to accept that he/she is changed or different, decreased activities outside the home (i.e., work, school, leisure, etc.), and feelings of guilt and sorrow over what their families have experienced.

• A Few Things that Helped. Family beliefs are important for recovery. Outside networks are also important for sustained stability. Some families use humor. Other families state that they rely on positive thinking. Some family members connect to others through social media. Journaling helps some people. Having a family member that is able to provide a sense of stability helps create a sense of security.

• Adapting as a Family. Researchers separated this by three categories.

  • To be usual. Some families state that recovery and entrance back into their “normal” lives happened quite quickly and unexpectedly. Some felt that they had returned to work a little too soon, but still expressed gratitude about being able to return to work or school.

  • To be somewhat unusual. Families realize that they must adapt and accommodate changes that will be long lasting. An injured family member states that he realizes that he will “just have to learn to live like this.”

  • To be quite unusual. These families described life as “stopping” or changing drastically. For these families, their “new normal” was very different from the life each lived prior to the injury. These families face many, many stressors and challenges.

Any thoughts about their findings?

Do you see yourself or your family in the research?

Reference

Stenberg, M., Stalnacke, B., & Saveman, B. (2022). Family Experiences Up to Seven Years After a Severe Brain Injury – Family Interviews. Disability and Rehabilitation, 44:4, 608-616

Feelings of sadness, frustration, and loss are common. Most likely, you know firsthand just how complex and multi-layered the losses are after a severe brain injury. It’s okay to grieve those losses. You are allowed to grieve even if others keep reminding you that you should feel grateful to be alive. Just as each brain injury is unique and personal, so too is grief. Honor your own way of grieving.

Layers of Loss and Change

Physical | Neurological | Psychological | Cognitive | Emotional Changes

Each one of these changes may deeply impact one’s life, relationships and daily functioning.

Loss of Self | Identity

One’s sense of self may be challenged. Some feel as if they do not “know who they are” at their very core. Grief and loss are interwoven in the process of re-defining self. Adapting to a life with a new disability or challenge is not easy, Part of building a new life may include grieving the old one.

Loss of Independence

Survivors often grapple with the awareness of a new limitations and they struggle to rebuild their lives. Some must ask for and depend on others for help, often for the first time in their adult lives. For those that cherish their independence, this can be a very difficult.

Social Changes

Many brain injury survivors find that some old friends fade away for many reasons. One reason may be that the survivor is no longer be involved in the same leisure activities or programs.

Vocational | Employment Changes

For some it may not be possible to return to the same job or field of work.

Family Roles

Brain injury is a family affair and each person within the family will be impacted in different ways. Relationships are asked to change and accommodate this new reality. For some spouses, there may be a role reversal. Some may be called upon to be caregivers.

Spirituality

Many brain injury survivors reevaluate their core beliefs. Some become more connected to their belief system. Others may lose connection with their belief system and experience feelings of loss. Finding meaning is one’s experiences becomes a critical part of healing for many survivors.

Financial Instability

Months of rehab, loss of income and depletion of savings leave many in a state of financial uncertainty or dependence on others.

Aspirations - Hopes & Dreams

A brain injury may prevent survivors from pursing long held goals and dreams. Old aspirations may be shelved (temporarily or permanently) and begin to collect dust. Feelings of loss are a normal part of this process, and may be necessary for the survivor to begin to explore new hopes and dreams for the future. This may be further impacted by the survivor’s stage of life. A young person may grieve when peers reach milestones that they have not achieved (i.e. career, marriage or family).

A brain injury happens to both people in a relationship. Your lives have changed in an instant. You have both experienced a traumatic event and you both may have many different emotions.

Injured partners may notice that emotions are more easily activated. It may feel as if you have little or no “emotional filter”.  When you are part of a couple relationship, however, emotional changes do not happen in isolation. The uninjured partner may also experience many intense emotions. You may feel as if you are riding an emotional roller coaster. Feelings of sadness, anger, and fear are common for both partners. You may also experience anxiety, frustration, irritability, resentment, guilt, hopelessness, or helplessness.

Conversely, some injured partners may have the experience of being less emotional following a brain injury. This can look like emotional numbness, passivity, avoidance, shutting down, or a lack of connection. Sometimes it is difficult for the injured partner to identify emotions. Alexithymia (the inability to recognize emotion in self and others) may be present following a brain injury. These types of emotional changes can pose unique challenges for the relationship.

Both partners may feel overwhelmed by the number of changes occurring in their lives. The injured partner may have trouble adapting to the many challenges that can accompany a brain injury. This may include changes in thinking/cognition, emotion, behavior, sexuality, and physical challenges. Similarly, it may be difficult for the uninjured partner to accept changes in his/her partner, as well as changes in the relationship. This makes sense when you think about all the changes that your relationship is being asked to accommodate. Some common relationship challenges/changes include 1) changes in roles and responsibilities, 2) communication, 3) loss of dreams or a shared vision for your future, 4) sexual intimacy, 5) loss of connection with self and each other.

When you are feeling overwhelmed, there are a few things you can do to stay present and calm. These include:

Breathing

• Mindful Breathing. Notice the inhale, pause, and exhale.

• Deep Breathing. Breath fully into the belly (diaphragm) and then exhale.

• Counting and Breathing. Inhale to the count of 4 and exhale to the count of 8.

Grounding

• Notice your feet on the floor.

• Take an inventory of everything you see around you.

• 5-4-3-2-1 Grounding Technique (name 5 things you can see, 4 things you can hear, 3 things you can feel, 2 things you can smell, 1 thing you can taste).

Take a Walk

• Feel your feet with each step

• Experiment with pacing

Take a Time-Out

• Take a time-out when emotions are high, or when you’re feeling flooded.

• Set a time limit (i.e., 15 minutes.)

• Let you partner know where you’re going and when you’ll be back.

Most importantly, remind yourselves that you are going through something that is very difficult – something that most people will never experience and may never fully understand. You are both doing the best that you can. You both deserve compassion, understanding, and empathy.

Depending on the severity of the brain injury, some individuals recover after a relatively rather brief period, while others may require lifelong support. Family members often shoulder the responsibility of caring for their injured loved one long after formal rehabilitation has ended. Unfortunately, most families are not prepared to meet the long-term demands of caring for a family member with a brain injury.

Following a brain injury, family members may experience family strain, depression, anxiety, social isolation, loss of income, as well as a myriad of other challenges. Some family members may notice increased alcohol or substance use. Current research suggests that the impact of a brain injury on the family may last well beyond the acute phase and endure as long as 10-15 years… and sometimes an entire lifetime. Additionally, the impact of a brain injury can even escalate over time. It can feel as you have “no relief”.

Family members adjustment is more negatively impacted by changes in personality, behavior, and emotion. The injured family member’s lack of awareness of changes and limitations may also impact the family’s ability to adjust and cope. Conversely, family members are less negatively impacted by physical and language changes.

Adjustment is a long and difficult process. There are no simple solutions. Much is being asked of you and the demands may feel overwhelming. Developing new coping strategies, communication skills, and problem-solving techniques may help with the adjustment. Counseling and education about the long-term impact on family functioning may alleviate some of the strain. Most importantly, however, it is important to be patient with yourselves. Be compassionate with yourselves – you are learning and growing. You are in a tremendously difficult situation. There will be many challenges, adjustments, and lots and lots of change.

Maria Trozzi, Talking with Children About Loss, uses the metaphor of lifeboat to help families better understand the need to include everyone in process of grief. I’ve also found this metaphor to also be helpful for families living through a traumatic event, including brain injury. Sometimes, in an effort to protect our children and shield them from pain, we overlook their need to be both included.

Every family member must put on his/her life jacket and get into the lifeboat together to survive the storm.

You will experience waves of emotion, challenging behaviors, uncertainty, and losses. If you leave some members out in the deep dark water alone without survival gear, they will feel isolated and alone. Everyone needs connection and information. Without information, people (especially children) fill in the blanks with fear and fantasy. You are all in this together. The following suggestions are offered to help you navigate rough waters with your family.

• provide honest explanations,

• be willing to talk about all the changes in your lives,

• allow for grieving and expression of emotion, and

• notice any changes in roles or behavior among family members (i.e. children behaving like little adults, becoming invisible, acting as if they have no needs or emotions, etc.)

“Grief only exists where love lives first.”— Franchesca Cox

A severe brain injury is one of the most devastating events that a family can experience. Losses are multi-layered and complex. Changes in your family member can be profound enough to be grieved like a death. Additional losses may include loss of relationship(s), financial stability, changes family roles, and many more.

Grief is a normal and natural response to loss. But society does not recognize or validate a family’s grief following a brain injury. It is common for the family’s grief experience to be overlooked or minimized. Some family members may feel alone during a very painful emotional experience. Others may feel as if they do not have the right to grieve. Pauline Boss, PhD, Ambiguous Loss: Learning to Live with Unresolved Grief, captures the feelings of loss that families often experience when their loved one is physically present but changed in profound ways. A lack of finality or resolution compounds feelings of loss. Ambiguity and uncertainty stress family dynamics. Sometimes, grief may be delayed to maintain a sense of normalcy.

Every family is unique. Many factors will influence your experience - including culture, beliefs, and relationship dynamics. In addition, each member of the family may have a different experience. Although the family is living through the same event, your individual responses to trauma and grief may vary widely. A few things that may help include:

• Honor each family member’s way of coping/grieving. Grief and trauma reactions are unpredictable, fluid and vary widely.

• Be aware that this type of loss can be particularly difficult and complex. There may be no sense of finality or closure.

• Maintain connections with supportive family members and friends. Unfortunately, this may mean that you occasionally need to find a way to forgive platitudes and unhelpful advice from those that lack understanding.

• Establish a predictable environment (family routines, consistent schedules, etc.) as much as possible.

• Engage in enjoyable activities together and individually. This can be anything that you enjoy or that feels healing for you (i.e., journaling, dancing, watching a movie, playing a game, etc.).

• Join and share with others that have experienced something similar through support groups.

• Seek counseling when appropriate.

Brain injury is a life-changing event. There will be growing pains, upheaval, and lots of change. You will learn much as you rise to meet the challenges of brain injury. Recovery is a long, long process. Each of you may be changed in some profound way.

Back in the 1990s, there was a belief among many in the field of psychology that the mind is “set” after we reach a certain age. After all, our frontal lobes appear to be fully developed by age 27.

However, current neuroscience research suggests that this is not the case. Our minds are capable of change, healing and growth throughout our lifespan. The term, neuroplasticity, is used to describe the process in which the brain adapts in response to new experiences. Our brains are capable of changing in structure and function.

And, counseling can play a role in the process of change. Psychotherapy has the potential to effect change by strengthening synaptic connections and changing the anatomical pattern of interconnections between nerve cells (Doidge, 2007).

I would encourage anyone interested in the topic of neuroplasticity to read “The Brain that Changes Itself” by Norman Doidge. On a personal note, this is one of the first books that I read after my daughter’s brain injury. It provided me with a solid foundation of hope during many years of rehabilitation as I watched my daughter relearn how to speak, read, write, process information and regulate emotions, as well as navigate a very new, unfamiliar (and often cruel) world.

Reference: Doidge, N. (2007). The Brain that Changes Itself. Penguin Books.

How has your loved one’s brain injury changed you?

Families face many, many changes following a brain injury. The changes can be significant and dramatic. Your loved one’s brain injury can greatly impact and even shatter your assumptive world. Sometimes, the changes ignite a need for family members to re-calibrate their worldview and sense of self.

Your answers to the following open-ended questions is one way to get a sense of how much your loved one’s brain injury has impacted your life (Klonoff, 2014):

·         Since my loved one’s brain injury, my sense of who I am…

·         Since my loved one’s injury, I feel….

·         Since my loved one’s brain injury, the way I see myself…

·         Since my loved one’s brain injury, my role in life…

·         Since my loved one’s brain injury, my sense of purpose…

·         Since my loved one’s brain injury, when I think about work…

·         Since my loved one’s brain injury, the things that are important to me…

·         Since my loved one’s brain injury, my emotions…

·         Compared to before my loved one’s brain injury, I get upset…

·         Compared to before my loved one’s brain injury, I worry…

·         Compared to before my loved one’s brain injury, I get angry…

·         Since my loved one’s brain injury, my ability to deal with problems…

·         Since my loved one’s brain injury, my ability to cope with stress…

Reference

Klonoff, P. (2014). Psychotherapy for Families after Brain Injury. Springer.

Why do I feel like I don’t have the right to grieve?

There are many reasons for this. But let’s consider two reasons.

• First, we live in a culture that doesn’t understand loss and grief. Our grief-averse culture leaves grievers feeling isolated.

• Secondly, let’s look at the type of loss. Society doesn’t recognize or validate all forms of grief equally. Some types of grief are not acknowledged or accepted. A few examples of disenfranchised loss include

  • loss of physical health,

  • loss of home,

  • loss of community/culture,

  • miscarriage,

  • infertility,

  • abortion,

  • estrangement from family,

  • brain injury,

  • dementia,

  • severe mental illness,

  • addiction,

  • incarceration, and

  • loss of faith.

Disenfranchised grief is highly personal. What is painful for one person, family, or community may not be so for another. This may increase feelings of isolation, anger, or shame. It can feel as if your pain is invisible to the world.

What can I do?

Please do not allow others to talk you out of your personal experience. Honor your own way of experiencing and grieving a loss, even when… or rather, especially when society fails to validate your experience.

You may have to actively search for connection and support. Look for support groups with people that have experienced something similar. Many believe that disenfranchised grief is one of the most difficult kind of grief because of the lack of social support and validation - two things that are very helpful in the grieving process.

Ambiguous loss is unique and different from other types of losses because it is steeped in uncertainty. This uncertainty can impact one’s identity and relationships. People crave clarity but often find little. For this reason, it can be one of the most difficult losses that people experience. Pauline Boss (1999) describes ambiguous loss as frozen grief. She writes, “ambiguous loss can freeze people in place so that they can’t move on with their lives.”

One of the hardest things about living with ambiguous loss is that your experience is rarely, if ever, validated. Other people may not even see it as a loss. Some examples of ambiguous loss are:

Examples of Ambiguous Loss

• Your loved one is physically absent but present in your heart and mind. Two examples are:

  • Military Families. Your loved one is away on military assignment. This can be an especially difficult time for many military families although few people outside of the military community are aware of the sacrifices made by military members and their families.

  • Incarceration. Another example is a loved one that is incarcerated. The removal of a loved one from day-to-day family life can be very challenging. Sometimes, family members are afraid to even acknowledge that they miss their loved one because of the immense stigma around incarceration.

• Your loved one is physically present but changed in profound ways, such as severe brain injury, addiction, or severe mental illness. “When the loss is the result of a disability or illness, even strong families need help managing the stress,” (Boss, 1999). Few things can impact us like a loved one’s addiction or severe mental illness. It’s common to see high levels of anxiety within the family. They will often say that they do not feel like a “normal” family indicating that there is little understanding within society regarding the impact of these situations on their lives.

• Your loved one is physically present and there is a shift or transition (i.e. religious conversion and gender identity). Research suggests that some family members experience ambiguous loss and grief in reaction to these types of changes. In the case of religious conversion or deconstruction, there may be a fear about their loved one’s eternal fate. Along those same lines, some may worry about the future of their transgender family member. And it is also important to recognize that this can be a profoundly difficult time in your loved one’s life, as well:

• • Religious Conversion or Deconstruction. When one begins to deconstruct a set of religious beliefs, they may lose an entire network of support, connection, and community. It is common to feel isolated and alone.

  • Gender Transition. Transgender persons can experience the same loss of community and support, but with the additional burden of having to navigate a rejecting, stigmatizing – and sometimes cruel - society.

With an ambiguous loss, there is usually a very real sense of fear, anxiety, and uncertainty about the person’s fate. It is common to feel alone, frozen, or confused - locked inside a painful loss that remains open and unending. Ambiguity and uncertainty seem to deepen the wound.

You may find that you experience many different emotions. It’s important not to compare your experience with that of others. We are all unique. Additionally, it isn’t helpful to minimize your feelings, just because your situation does not include death. Your emotions are valid. Feelings of loss and sadness are an expected response to these types of challenges and changes. If you are struggling, counseling may be helpful.

Reference

Boss, P. (1999). Ambiguous Loss: Learning to Live with Unresolved Grief

As the holiday season approaches, you may have mixed feelings about gathering with friends and family. You might be excited about reconnecting with loved ones. Or you might even feel anxious about interacting with friends and family. Or you may even plan to spend the holidays alone.

Whatever your plans, the holiday season might be accompanied by many different feelings and challenges. There may be feelings of loss or sadness about all that has changed in your life. It is also common to feel stressed or anxious. You’ve been through a life-transforming event. This holiday season might feel and look different than holidays in the past.

Here are a few strategies to help you navigate the holiday season.

1. Be kind to yourself. It’s okay to have hard days – even on Christmas. You may be living with new limits and challenges.

2. Take time to rest. Give yourself the gift of a time-out this holiday season. Allow for some personal time to recharge. Rest is a crucial part of your brain’s natural healing process. You may even want to plan for a little extra rest – sneak in an extra nap or go to bed a little earlier.

3. Notice when you are feeling overstimulated. It is quite common to feel overwhelmed by noise, crowds, lights, too much interaction with others, etc. following a brain injury. Earplugs and sunglasses can be helpful in some situations. If you are traveling in a car, an eye mask might be helpful for visual stimuli. If you are attending an event with several people, consider standing near the edge of the room or close to a door. You might consider finding a comfortable chair to sit in during the gathering.

4. It’s okay to say no and set limits. You can choose which events you would like to attend. If you choose to attend a function, you might consider reaching out in advance to speak to the host about the possibility of needing a quiet space to recharge during the event or gathering. You may decide to shorten your visit or go to an event for a brief period before retreating to your home or quiet space.

5. Make lists. Lists help you stay organized. Consider breaking larger tasks down into smaller lists. Having a plan can help reduce some of the stress that comes with the holidays.

6. Limit or avoid alcohol altogether. Alcohol can slow down brain processes. If you decide to drink, stay hydrated and eat nutritious foods.

7. Reach out. Find someone that will be available to you during the holidays should you need to talk (e.g., a fellow brain injury survivor, clergy, friend, counselor, etc.). Sometimes, family and friends lack understanding about the impact of brain injury. You may even be estranged from your family. Whatever your circumstance, it is important to prioritize your well-being.