Seasons of Caregiving: Challenges, Skills and Strategies

By: Janet M. Cromer, RN, MA, LMHC, CCFE
caregiver hand on handThere is one description families affected by brain injury often use to summarize their experience — “Life changed in an instant.” No matter the cause or type of injury, life changes and we change with it. Brain injury usually occurs suddenly and we are not given an illustrated owner’s manual for life going forward. Eighteen thousand people in Ontario sustain a brain injury every year. They join almost half a million people who live with a brain injury. The person who has the brain injury begins a unique journey to heal, adapt, learn and live a satisfying life. The family caregiver also faces a journey full of challenges, losses, triumphs and new learning.

The process of adjustment and adaptation generally moves through stages, or seasons, that correspond to the treatment process. While each survivor is unique, this overview describes the stages. Stage One is the Crisis Stage during which the person with an acquired brain injury receives acute treatment or intensive care.

Stage Two, the Rehabilitation Stage, begins with inpatient or community rehabilitation. After some time, Stage Three, the Multiple Adjustments stage, begins with the transition home or to community housing. This stage may lead to a “new normal” way of living that still centres on helping the survivor reach his/ her full potential, but weaves treatment into the family’s routine. Some survivors require assistance for the rest of their lives. Therefore, Stage Four, Long-Term Care, can last many years.

Family caregivers go through a similar adjustment process. I call these passages—stages or seasons. However, it’s important to realize that their timing doesn’t always have a neatly defined beginning and end. Each season comes with specific emotional responses and key challenges. Because each caregiver has distinct experiences and resources, some of the emotions and challenges occur in more than one stage. It’s also normal to cycle back to a previous stage when a new problem or complication arises. So, please take this information as a general guideline, not a map for your journey!

While the journey may be unpredictable, we all benefit from building a repertoire of skills to protect and boost our physical, emotional, cognitive and spiritual health. Let’s look at some key challenges and skills for each stage of the caregiver’s journey.

Stage One – The Crisis

In the early days and weeks after the accident or injury, everything feels out of control. As a family member, you can’t control whether the person lives or dies. The medical team can’t guarantee when your wife or son will wake up, or recover vital abilities. The sights and sounds of the intensive care unit are overwhelming and you run on adrenaline for days and weeks. It’s common for caregivers to be downright heroic during this stage, even though they feel exhausted, anxious, fearful, hopeful, angry and guilty. Other common emotions include gratitude and relief that the person survived, anger at the circumstances and protective denial.

With so much attention on the survivor, professionals may not realize that the caregiver is in shock, or going through an intense traumatic stress response. Her body is reacting to the crisis with a prolonged stress response that causes a flood of chemicals and hormones that disrupt the functioning of every bodily system. That response is understandable when you consider the key challenges the caregiver faces.

The challenges and responsibilities include: comprehend complex medical information, make decisions and plans on behalf of the patient, learn to partner with the health care team, manage the care of your children, start to be a case manager and practice basic self-care. At the centre is the need to take control in healthy ways.

Five strategies to manage crisis:

  1. Take care of yourself. Make it a priority from the beginning. Let others help you. Hold on to hope. Eat nourishing food. Rest when you can. Allow distractions such as a funny TV show or Angry Birds game. Distraction lets your mind relax and recharge.
  2. Calm your body, calm your mind. Practice relaxed breathing for ten minutes, several times a day. Scan your body for tense areas, breathe into that area, exhale and release the tension.
  3. Share your feelings. It is normal to have strange new emotions during a crisis. Talk to a friend or staff member. Ask questions. Tell a professional if you are having trouble sleeping, intrusive images, or feeling numb and withdrawn.
  4. Think in ways that support calm and clarity. Focus on this moment, this day. Try to keep your expectations and “What if…?” thoughts in line. Ask for information to be repeated and put in writing. Consult with anyone who can help you make decisions. A navigator, chaplain, ethicist, or social worker can help you process the information. Recovery can’t be rushed and every little step counts.
  5. Get organized. Get a large notebook and write everything down.

Stage Two – Rehabilitation

Some of the caregiver’s key challenges include: understand the meaning of changes, participate in treatment, identify personal strengths and resources needed, manage all other areas of family and work life and learn to carry over all aspects of treatment at home. There is an enormous amount of information to master. If the survivor’s functioning or personality have been affected by the brain injury, the caregiver may need to start building a relationship with this person who is also getting to know himself.

Common emotional responses include depression, grief, anxiety, anger, resentment and ambivalence. Emotions can seem contradictory and unstable.

There is also room for happiness and pride in helping the survivor progress and a sense of budding resilience. This time is also when ambiguous loss often begins as the caregiver realizes that some consequences may be permanent and the person she’s known so well is now a different person to some degree. Ambiguous loss deserves attention from a knowledgeable professional.

Five strategies for rehabilitation:

  1. Partner effectively. Be honest about which parts of treatment you want to be involved with and which responsibilities would be better done by another person. Share your observations and questions. You know the survivor better than the staff ever will. Ask for a consistent staff member to be the main communicator.
  2. Tune into your stress signals and intervene early. Devise a consistent stress resilience plan. Take frequent breaks to release tension, problem-solve, or take a walk. Think of one thing you can do for your body, mind and spirit each day. Prioritize time for yourself.
  3. Empower yourself with education. Join a
     group to build skills and share feelings. Seek out a resilient role model through groups or through OBIA. Request resource materials, illustrations and specific instructions for every treatment and medication from the treatment facility. Request a list of books, websites and community providers specific to your family’s situation from OBIA.
  4. Seek help with financial, legal and work issues. Learn about your rights and resources. Get information on the survivor’s options for ongoing treatment, counselling and vocational training.
  5. Make sure you have an emergency plan for psychiatric and medical emergencies before going home. Know who to contact, how to safely intervene and where to get help.

Stage Three – Transition home and multiple adjustments

Coming home, or moving to a residence, is a huge step for the survivor and family. While gains made in rehabilitation may carry over well, it’s not unusual to see some temporary backsliding. At the same time, new strengths and motivation may surface. Key challenges include revising family roles and routines, continuing rehabilitation, mobilizing new supports, managing the “red tape” of administrative responsibilities and financial issues.

Common emotional responses include relief at being home, insecurity from not having professionals close by, anxiety, worry, anger and isolation. Depression tends to show up after the crisis has passed, neurotransmitter stores are depleted and the reality of how the brain injury will influence life going forward becomes clearer. Families who have support and resources also report a new closeness, gratitude and willingness to change.

Five strategies to manage multiple adjustments:

  1. Seek support for yourself and the survivor. Ask a friend (not you!) to use an online tool such as Lotsa Helping Hands (www.lotsahelpinghands.com) to enlist friends, neighbours, coworkers and volunteers to help with a wide range of tasks. OBIA Support Services can offer assistance with finding and advocating for rehabilitation and support services.
  2. Recognize signs of caregiver depression and seek counselling. Common symptoms include feeling sad, empty, hopeless, or irritable. Watch for poor concentration or memory. Physical effects include trouble sleeping, low energy, weight changes and physical aches. Seek counselling early. Many effective treatments are available for depression. Preventive care includes personal or family counselling and respite time.
  3. Modify or revise family rituals. Take the survivor’s needs into account, but hold on to traditions the family values most. Explain the survivor’s new responsibilities and new family roles in a way that respects all contributions and acknowledges changes. Figure out new ways to have fun together. Celebrate each success.
  4. Pursue a personal dream or goal. Take one step at a time. Take an online class, read related books, set aside money for your dream. Hold on to the treasured parts of your identity.
  5. Keep everyone safe. According to the OBIA Impact Study 2012, fifty-two percent of caregivers have concerns that the survivor’s behaviour post-ABI may put him/her at danger. Angry behaviours can also put other people at risk of being hurt. Don’t keep secrets about dangerous behaviours or substance abuse. Seek help right away.

Stage Four – Long-term caregiving

Some individuals who have an acquired brain injury may need assistance with physical, psychological, or cognitive functioning for many years. Often the same family member provides this care with or without supplemental assistance. Caregivers have much higher rates of chronic illness and depression than non-caregivers. These rates increase with length of time caregiving.

Key challenges include continuing to meet the needs of the survivor as the caregiver ages, planning for care to continue if the caregiver is unable to continue, managing the survivor’s multiple health concerns, housing issues and financial concerns.

Emotional responses might include exhaustion, depression, worry, resentment and acceptance. Many caregivers also describe a sense of meaning, acceptance and pride in one’s competence.

Five skills for long-term caregiving.

  1. Prioritize your health. Keep health maintenance appointments. Manage chronic conditions wisely. Exercise to stay strong and release stress.
  2. Learn about caregiver burnout and compassion fatigue. Both conditions reflect a complete exhaustion of one’s body, mind, spirit and resources. Seek professional help early.
  3. Anticipate needs and update your knowledge of resources and assistive technology Information changes rapidly and new resources become available. Be open to new ideas and request evaluation and coaching to manage new behavioural or communication issues. Consult with an attorney and financial planner who specialize in ABI.
  4. It’s never too late for a Circle of Support. Remember that you can request assistance with tasks, direct care, paperwork, meals, or yard work at any time. Many families organize a circle for a period of months, then call upon those volunteers later when new needs arise. Consider a support group for longer-term caregivers to share wisdom and resources.
  5. Respite, respite, respite! Take brief respite breaks daily. Schedule longer breaks for a change of scenery and time to rest. Look into overnight respite options for the survivor.

References:

  • OBIA Impact Report 2012.
  • Boss. P. (2006). Loss, Trauma and Resilience: Therapeutic Work with Ambiguous Loss. NY: W.W. Norton. ???