You will likely hear how life changes after brain injury in many, many, ways. Both big and small changes.
Changes such as no longer being able to work, not being able to get to the corner shop to buy a snack, relationship changes, or finding that watching a movie is no longer enjoyable, as it’s too hard to follow.
Today the discussion focuses on the changes and losses that can come with life changes after brain injury, along with some ideas for strategies to support a person live life after brain injury. This article, and the introduction last week focus on the life changes after brain injury.
You can read the full article Brain Injury Life Changes or below are some key points to remember:
- The losses associated with life after brain injury are often underestimated by everyone involved.
- While the physical and cognitive affects of brain injury are different for each person, the impact on their lives can have similar results.
- Whether brain injury is mild, moderate, or severe, people often describe similar effects on life.
- Brain injury affects the whole family.
Life Changes After Brain Injury
What do most of us do with our lives anyway? Think about how you spend your daily, monthly, annual life. This Infographic below by Shirley Williams on SlideShare might provide a few ideas. It takes a look at how the average American spends their time.
Now imagine significant changes to that average, through no choice of your own? After brain injury for instance.
Examples of Life Changes After Brain Injury:
Below is a list. Not a complete list, but a list to get you thinking about life changes after brain injury. To get you imagining what this would be like.
How would you cope if a number (or all) of this happened to you? What would you need from others?
In the future we will talk more about positive changes people discover, the current focus is on the significant losses and changes a person may be managing.
Here is a reminder of the headings for life elements that might be affected:
- Changes to home life
- Changes to Relationships
- Self-Esteem and Development
- Education and Employment
- Control of Life and Finances
Under each heading below, are a range of specific changes that a person might be facing:
Changes to home life
- You are no longer able to live in the home you choose
- You might have to live in a hospital, nursing home or other facility with a large group of people you have never met.
- An adult ‘child’ who has left home and is enjoying her/his new freedom may find herself living back with parents, who were themselves maybe spreading their wings after their children had moved out. Read a powerful example of the impact on family in the book A Flower between the Cracks.
- Strangers may be coming into your home and providing help with all kinds of personal tasks.
- There may be a lack of privacy.
- A person might find themselves without a home, or living in temporary accommodation.
- For many prison becomes home.
Changes in relationships
- There may be an increased dependence on family members and your support network.
- A partner / spouse may become caregiver. An earlier article HERE refers to the relationship and life changes Alix Kates Shulman and her husband Scott York encountered. Written about in the book “To Love What Is”. Alix describes the impact on them both, their relationship, their family and friends, and also the practical day to day life changes.
- Roles within families may change such as no longer being able to manage the household finances or giving up work to care for a family member.
- Relationships may break down.
- Friends no longer visit.
- There may be a loss of parenting possibilities or access to children.
- Loss of contact with family.
- People and relationships are more protective than previously.
- People including family members may be unable or unsure how to support.
- Feelings of resentment of others’ relationships.
- Changed and difficult relationships even close relationships such as partner.
- No sex-life.
Reduced Self Esteem and Development Opportunities
- Development can be interrupted, or held up.
- Loss of respect and dignity.
- A change of circumstances such as different lifestyle.
- Loss of spontaneity.
- Feeling like you are being treated differently.
- Awareness and grief for what has been lost.
- Being given less responsibility than previously.
Changes of Loss of Education and Employment
- Not able to return to previous career, work, interests.
- A person may no longer be able to work or attend study
- Disruption or reduction of learning opportunities.
- Miss schooling and rejoin with a younger age group.
- Not able to do what you did before.
- Maybe awareness of knowledge and previous skills lost.
- Significant changes to lifestyle might be needed – for instance a businessman who travelled the world and had many business friends and a high-living lifestyle finds he is sitting at home not able to work with no contact with his business colleagues.
Loss of Control Over Life and Finances
- Along with these changes, there are often changes to the control people have over their lives. This may come with loss of income and increased dependence on others for making decisions such as what to do when.
- Life goals and future plans may no longer be possible.
- Feeling or actual loss of respect from others
- Loss of income.
- Financial and life decisions may be made by others.
- Lack of power within family and community.
- May be in trouble, even spending time in prison.
- Dependence on others for support, personal care, decision-making.
- Life changes forever.
That’s a lot of change, grief and loss to manage.
People living with brain injury often have a large number of these losses,
and then some.
If you have read the article Brain Injury Changes Lives, and have given some thought to specific changes under each life element, or maybe filled in the worksheet – compare your list with the one above. Do you have any changes not on this list? WONDERFUL!
Please use the COMMENTS section below to share any not included on the list. I really do welcome additional thoughts to build up this list for others. Have you thought of another life element – GREAT – it would be great if you could share this as well OR you can send me a note HERE.
So what can a supporter do?
Developing Strategies for Life Changes after Brain Injury
Understand as much as you can (without prying or being intrusive) about the person’s life:
- Develop a whole-of-life picture of a person not just the ‘brain injury’ picture.
- Gently talk about, and learn what the impact on life has been and what is important.
- While to outsiders it may sometimes seem the impact on life is less important than the injury, or disease outcomes. It may be more important for the person whose life is affected. It may be where they want assistance.
- LISTEN. Listening and learning about a person’s life helps build the trust that can enhance your supporting relationship. It can also assist you in finding great motivators for each person.
- Work with and combine the knowledge and experience of everyone involved: family, friends, support network, yourself to build knowledge and strategies.
Be sensitive to and develop strategies for, the feelings of grief and loss that surface:
- Think carefully about the changes the person you are with has experienced. Put yourself in their shoes:
- How might these losses feel?
- How might they be impacting on behaviour
- How might they impact on the ability to live life?
- Prioritise what is the most important to work on:
- Find out what life effects the person most wants you to assist them with. For instance, not being able to remember things may be difficult, but friends no longer visiting may have a greater impact, and be more of a priority.
- Priorities will be individual for each person. Begin with the priorities the person identifies, NOT what you think they should be.
Build on strengths and build hope:
- Be an encourager and more.
- Find ways to build hope – not false unrealistic hope – build realistic, positive, hope.
- Be inventive.Find ways to motivate.
- A person has a life-time of experiences before brain injury, gently discover this. Gather clues about what strengths can be built on. Call upon that life time of skill and experience to guide development of strategies.
- Build on strengths. Focus on Can Do strategies.
These ideas above are a starting place for strategies. Each person will need strategies tailor-made just for them.
Further strategies that might be helpful are outlined in this article Fundamentals for Living Better After Brain Injury. and please share any other resources or strategies you might know of in the COMMENTS below.
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