Family Adjustment

Conversations

Many families have questions about how to talk to children about brain injury and disorders of consciousness. Here we share tips about having these hard conversations.

• Expect that children will ask questions. Younger children will likely have more basic questions, while oder children will have more questions about their loved one getting better and the future.
• Give true information using age-appropriate words. Answer questions as best as you can. If you do not know the answer, it’s okay to say so. The medical team can help. There may be options for children to meet with the team for support and education.
• If there are several children, talk to them together using words for the youngest child. Then spend one-on-one time with each child to support them individually. Have these discussions often.
• Children’s books are also helpful resources about brain injury and recovery.

Child-friendly explanations

• Unconscious: When someone is unconscious, they are not aware of what is happening around them. They may look asleep or awake depending on how much healing has happened.
  • Coma: A coma is one stage of being unconscious. When someone is in a coma, it’s like they are asleep and cannot wake up. They do not react to sounds or what’s going on around
    them. Their eyes are closed, and they cannot move.
  • Unresponsive wakefulness: This is another stage of being unconscious. Doctors used to call this the vegetative stage. People in this stage can be awake and have their eyes open, but they are not aware of what’s happening around them. They may move or make sounds, but they are not doing these things on purpose. These movements and responses are called reflexes.  The person’s arms and legs may move randomly, but they are not moving their body on purpose. Their head may turn in the direction of a sound, and they may make moaning sounds.
  • Minimally conscious: This is the last stage of being unconscious. When someone is minimally conscious, they will start to respond to people and interact with their surroundings more on purpose, but they cannot do it all the time. When they do not respond, they are not avoiding the activity or refusing. Their brain gets tired and cannot be consistent during this time. The patient may be able to follow simple commands, reach for objects, follow a person with their eyes, and start to talk or communicate.
  • Conscious: When someone goes from being unconscious to conscious, they are more aware of what’s happening around them. Doctors and therapists measure this by seeing if they can communicate and/or use objects correctly.
  • Emergence: This is the word used when someone goes from unconscious to conscious. When someone regularly shows they are aware of their surroundings and can respond on purpose,  either by communicating or using different objects correctly, they say that person has emerged from their disorder of consciousness. Even after emergence, people still need a lot more time to heal and do therapy. Confusion and difficulty speaking or moving is common after emergence.

Visits

• Work your way up to a visit by helping children know what to expect.
• Start by talking about how the patient and what they can and can’t do. Let children know that their loved one can’t always stay awake, speak, see, move, or hear because of the injury. Talk about changes in the person’s appearance.
• Next, show a current picture of their loved one. Answer questions and concerns as best as you can and discuss how the child feels.
• If possible, show a video of the patient, and/or have a video call between the child and their loved one.
• Ask children if they are ready to see their loved one in person. Let them know they won’t be alone. Remind them that they can change their mind about the visit at any time.
• Children may need to warm up to being in a hospital. Show pictures or give a short tour of the hospital so they feel more at ease.
• If possible, have the first visit in a more neutral place like the family lounge, therapy room, or outdoor area.
• Keep the visit short and your plans flexible. Plan for no longer than 15-20 minutes, and sometimes as short as 5 minutes.
• If possible, bring multiple adults so one adult can be with the patient and one can be with the children.
• Avoid overstimulating your loved one. Remind children to talk using an indoor voice and to avoid jumping around and on top of your loved one.
• No matter how the first visit went, remind yourself that you did a hard thing.
• Ask your children what they would like to do after the visit. Try your best to meet their needs.
• Remember that with more visits, kids will likely feel more comfortable over time.

Providing support

• Encourage children to talk to you without pressuring them. Give them your full attention during this time.
• Sometimes children feel more comfortable talking to a counselor, other adult family members, or a family friend. Give them these options.
• Keep routines as much as possible. Help them stay busy with schoolwork, sports, activities, and time with family and friends.
• Tell important adults like teachers and coaches that the child’s loved one had a serious injury. Ask these adults to let you know if they notice anything different about the child’s mood or behavior.
• Help children know that having a range of feelings is okay.
  • Let them know that it’s normal to feel sad, confused, worried, or even angry during hard times.
  • Help them know it’s also okay if they feel better or happy at times.
  • Reassure them that guilty feelings are common after a loved one’s injury. Let them know the injury was not their fault.

Be alert for major changes

Major changes in mood or behavior may be a sign to seek professional support. If you notice worrisome changes, consider talking to a pediatrician, school counselor,  or child and family therapist. Some changes to be alert for include:

• Major changes in sleep patterns or frequent nightmares
• Loss of interest in activities once enjoyed
• Withdrawing from family or friends
• Loss of age-appropriate skills like speech, toilet training, or feeding themselves
• Anger or behavior outbursts
• Getting shaky, sweaty, hyperventilating, or getting sick to their stomach when talking about the injury or their loved one
• Avoiding conversations about their loved one, such as running from the room or zoning out in such a way that you cannot re-engage them
• Making comments about suicide or self-harm. If self-harm is actively occurring or you fear the child is in immediate danger, call 911. In a crisis, call 988 for the Suicide and Crisis Lifeline.

Guardianship

A guardianship is a legal process that allows one person or entity to make decisions for another, referred to as the ward. The court system is tasked with establishing guardianships, and they typically appoint guardians in instances of incapacity or disability.

Incapacity is defined as the physical or mental inability to do something or to manage one’s affairs. Incapacity can involve severe and long-term conditions that impose great limitations upon an individual’s ability to take care of themselves, express themselves verbally, earn a living, and live independently.

Here at Shepherd Center, a neuropsychologist and/or medical doctor will determine a patient’s capacity.

Going through the legal guardianship process is only required if the patient in question does not already have other legal documents completed. It may not be required if the patient already has both an advance heath care directive, also known as a living will, and a durable power of attorney for finances. If you have these legal documents, please share them with your case manager.

Guardianship should be considered as a last resort that is only required if all other legal options have been exhausted.

Types of guardianship include:

• Emergency or temporary guardianship may be needed for consent for medical treatment. A court hearing is usually not required. Temporary guardianship can be considered when a patient’s cognition may improve over time.
• Permanent guardianship, decided by a court, is a legal document that all parties must acknowledge. A court hearing is usually required, and it can be a lengthy and expensive process. A lawyer is recommended to help with this process. A permanent guardianship can be reversed if a person regains capacity and it can be proven in court.
• Joint guardianship, a form of permanent guardianship, enables more than one person or entity to share the responsibilities.

A guardian’s powers include assuring the availability and maintenance of care for the ward and possibly making all financial and medical decisions for the ward.

The state and county in which the patient for whom guardianship is being sought lives is the usual authority over granting guardianship requests. Each state has slightly different procedures for granting guardianship that you must understand. It is recommended that you use a lawyer to help guide you through the process.

The court will usually decide based upon pre-incapacity circumstances of the ward or documents such as an existing durable power of attorney or will. If there are no documents, the courts typically (though not always) prefer to appoint a spouse, parents, adult children, brothers, sisters, or other family members.

Shepherd Center recommends you consult an attorney who knows your state and county laws.

Power of attorney

A power of attorney (POA), in general, is a legal document signed by the ward that appoints one or more people (or institution) with the power to make decisions regarding the ward’s affairs. This power can include financial and medical decisions. A POA can be tailored to grant only certain limited powers.

After a severe injury, many patients will not have the capacity to sign or consent to legal documents. If you already have a power of attorney or other legal documents, please share them with your case manager.

Granting a POA involves a person who:

• Is fully oriented.
• Demonstrates understanding of what a POA is.
• Reliably identifies the qualities of someone who could serve as a POA.
• Understands the nature of their injury and what decisions may need to be made on their behalf.

Here at Shepherd Center, a neuropsychologist and/or medical doctor will determine a patient’s ability to execute and/or revoke a POA.

A POA is inexpensive and revocable, and the patient may retain ability to manage some of their affairs when able to do so. However, some financial institutions may not honor a POA, and some agents may abuse their power.

Pursue legal guardianship if you cannot obtain power of attorney.

If the patient is already mentally incapacitated and did not execute a power of attorney or a living will or other POA paperwork, it may be necessary to apply for guardianship. Any interested party, including the proposed ward, may challenge the
guardianship petition.

Additional information about guardianships and POAs can be found online and through your state and county’s probate court. Shepherd Center recommends you consult an attorney who knows your state and county laws.

CPR

Cardiopulmonary resuscitation, or CPR, is the treatment you receive when your blood flow or breathing stops. It may involve: simple efforts such as mouth-to-mouth breathing and pressing on the chest, electric shock to restart the heart, breathing tubes to open the airway, and medicines.

If the patient is unable to make medical decisions for themselves due to illness or injury, a representative for the patient (healthcare agent, next of kin, spouse, or family member) may be asked to choose whether CPR should be done for them. If the patient has named a healthcare agent, that person can make the determination about a DNR. If the patient hasn’t designated anyone to speak for them, try to gather those who had discussions with them and know what the patient would want in an emergency, and to honor those wishes and conversations.

If you are representing the patient’s wishes, keep in mind that this is what they would want and not your decision. Rather, you are standing in for the patient, being their voice when they can’t use their own.

If the representative wants the patient to receive CPR, they do not have to do anything. If the representative does not want CPR, talk with the doctor about a DNR order. Ask about the pros and cons of CPR. Learn more about the patient’s medical condition and what to expect in the future. A DNR order may be an appropriate part of a rehabilitation plan as well as a palliative care plan.

DNR orders

A do-not-resuscitate (DNR) order is a medical order written by a doctor that instructs healthcare providers not to do cardiopulmonary resuscitation (CPR) if a patient’s breathing stops or if the patient’s heart stops beating. A DNR order is specific about CPR and does not have instructions for other treatments, such as pain medicine, other medicines, or nutrition.

DNR orders guide your healthcare providers during an emergency when there is typically no time to discuss what to do. Without one, the default of healthcare providers responding to an emergency is to do everything possible to keep the person alive.

If a patient has a DNR order, they always have the right to change their mind and request CPR, if they have the capacity to make medical decisions for themselves.
The patient may have named someone to speak for them, such as a healthcare agent. If so, this person or a legal guardian can agree to a DNR order for the patient.

The doctor writes the order only after talking about it with the patient (if possible), the healthcare agent, or the patient’s family.

End-of-life discussions

Issues and questions about end of life may arise while the patient is here at Shepherd Center. Decisions for withdrawing or withholding treatments have many considerations, including to the prognosis and treatment of the patient’s medical condition and the previously expressed wishes of the patient. Their wishes may be in the form of an advance directive for healthcare, also called a living will, or even simply discussed in a previous conversation.

Each situation is unique. Please talk to your doctor, case manager, or the family counselor. Shepherd Center is committed to being open and non-judgmental about having these tough discussions. There may be a time when the patient’s medical condition necessitates bringing up the topic of end-of-life decisions with you. We want you to be educated about the treatments that the patient is receiving, and we are dedicated to approaching treatment options from a holistic place, considering family and discharge plan.

Life-sustaining treatment

Life-sustaining treatment is any medical intervention, technology, procedure, or medication that forestalls the moment of death, whether or not the treatment affects the underlying life-threatening diseases or biological processes. Examples include mechanical ventilation, dialysis, cardiopulmonary resuscitation (CPR), antibiotics and other medications, transfusions, nutrition, and hydration.

Decisions about using or withholding forms of life-sustaining treatment require patients or surrogates to balance carefully the potential burdens against the benefits.

Life-sustaining treatment is considered withheld when the patient or the patient’s health care agent instructs healthcare providers not to begin a medical treatment, and the expected result is that the patient will not live without it. Life-sustaining treatment is considered withdrawn when a treatment that has been initiated is stopped. Often, the patient or patient’s agent, other loved ones, and the attending physician agree on a time-limited trial of life-sustaining treatment, hoping for improvement. If the patient does not improve, the treatment is stopped.

Resilience is the process of adapting well in the face of adversity, trauma, tragedy, threats, or significant sources of stress, such as family and relationship problems, serious health problems, or workplace and financial stressors.

Developing resilience is a personal journey. People do not all react the same to traumatic and stressful life events. An approach to building resilience that works for one person might not work for another. People use varying strategies. Here we share a few to consider.

• Make connections. Good relationships with close family members, friends, or others are important. Accepting help and support from those who care about you and will listen to you strengthens resilience.
  • Some people find that being active in civic groups, faith-based organizations, or other local groups provides social support and can help with reclaiming hope. Assisting others in their time of need also can benefit the helper.
• Avoid seeing crises as insurmountable problems. You can’t change the fact that highly stressful events happen, but you can change how you interpret and respond to these events.
• Try looking beyond the present to how future circumstances may be a little better. Note any subtle ways in which you might already feel somewhat better as you deal with difficult situations.
• Accept that change is a part of living. Certain goals may no longer be attainable as a result of adverse situations. Accepting circumstances that cannot be changed can help you focus on circumstances that you can alter.
• Move toward your goals. Develop some realistic goals. Do something regularly, even if it seems like a small accomplishment, that enables you to move toward your goals.
  • Take decisive actions, rather than detaching completely from problems and stresses and wishing they would just go away.
• Look for opportunities for self-discovery. People often learn something about themselves and may find that they have grown in some respect as a result of their struggle with loss. People who have experienced tragedies and hardship can report better relationships, greater sense of strength even while feeling vulnerable, increased sense of self-worth, a more developed spirituality, and heightened appreciation for life.
• Nurture a positive view of yourself. Developing confidence in your ability to solve problems and trusting your instincts helps build resilience.
• Keep things in perspective. Even when facing very painful events, try to consider the stressful situation in a broader context and keep a long-term perspective. Avoid blowing the event out of proportion.
• Maintain a hopeful outlook. An optimistic outlook enables you to expect that good things will happen in your life. Try visualizing what you want, rather than worrying about what you fear.
• Take care of yourself. Pay attention to your own needs and feelings. Engage in activities that you enjoy and find relaxing. Exercise regularly. Taking care of yourself helps to keep your mind and body primed to deal with situations that require resilience.

Additional ways of strengthening resilience may be helpful. For example, some people write about their deepest thoughts and feelings related to trauma or other stressful events in their life. Meditation and spiritual practices help some people build connections and restore hope.

The key is to identify ways that are likely to work well for you as part of your own personal strategy for fostering resilience.

Coping with changes

Sexuality and intimacy are an important part of who we are as human beings, and a brain injury can impact this aspect of life.  It is important to individualize your needs in this area.

• Brain Injury Association of America
• Sexual Functioning and Satisfaction After TBI – Brain Injury Association of America
• Brainline: All About Injury and PTSD
• Curing Coma
• Self-Care – Family Caregiver Alliance
• Brain Injury and Me – Headway: The Brain Injury Association
• Intimacy and Sexuality following TBI – Military Health System
• Sexuality After TBI – Model Systems Knowledge Translation Center
• Public Guardianship Office – State of Georgia