Living with a person who has a brain injury
means that families now have multiple roles as caregivers as well as being a parent, spouse, sibling or child. These dual roles can be demanding, frustrating, confusing and exhausting. The routines at home must change as families learn how to live with the physical, cognitive, communicative, behavioral and social changes caused by the brain trauma. Caregiving means finding the balance between protecting a person from further injury and encouraging independence. This can feel like a juggling act for caregivers.The immediate concern is the severity of the injury when a family member is hospitalized. The hardest question for families to ask is whether the person will survive. But once the medical crisis has passed and the person’s condition is stable, then the concerns of families shift to anticipating what this means for their lives and future.
Families soon ask the question, “When can he come home?” This is often followed by concerns about, “How will we manage? Can she be alone? How much supervision and help will he need?”
We all depend on others in some way, whether it is for physical help, emotional support, finances or learning. But once a person has a brain injury, additional help may be needed in other areas. The following checklists help families and caregivers identify the changes caused by the brain injury. This information is useful for discussions with therapists and doctors to determine how much help is needed at home.
Checklist for Caregivers on Living with a Brain Injury
Self Care – These are the basic activities of caring for oneself. How much help does the person need to:
- take a bath or shower
- brush teeth
- use the toilet
- organize belongings and room
- find clothing and dress self
- climb stairs
- move over varied surfaces such as carpeting or linoleum
- monitor personal hygiene
- take medication
Orientation – Getting through the day is not always easy. It takes organizational skills.
- How much help does the person need to:
- provide vital data such as age, birthdate, etc.
- give personal address and telephone number where living
- give names and telephone numbers for emergencies
- easily see and read clocks
- name the day of week and the date
Communication – This is much more than speaking.
- It is important to observe whether the person can:
- speak clearly and be understood
- use the telephone
- write or print clearly
- use a computer
- understand written information
Home Safety – Lots of families and caregivers worry about whether the person can safely stay alone.
- It is helpful to ask if the person:
- remembers to lock doors
- remembers to lock windows
- knows what to do in case of fire
- knows what to do in a power failure
- limits personal information on the telephone or Internet
- feels comfortable staying home alone
Household – It is helpful for caregivers to ask how much help the person needs to:
- separate, wash, dry and put away clothing
- vacuum or sweep carpets or floors
- determine if food is spoiled
- plan and prepare a good meal
- follow steps of a recipe
- use a stove safely
- clean up after cooking
- prepare menus
- shop for food
Organization – Getting through the day is not always easy. It takes organizational skills.
It is useful to ask if the person:
- can plan daily tasks and chores
- make and keep appointments during the day
- set an alarm clock to get up in morning
Transportation – Just getting places can be challenging for a persons with a disability or any type of impairment. It is important to assess whether the person can:
- drive a car safely
- use a public bus or subway
- travel by plane
- get and pay for a taxi
- go for local walks
You can use these checklists at any stage of the person’s recovery to chart progress, identify improvements, and spot problems. If the person you expect to provide care for has not been discharged yet from the hospital or rehabilitation program, you can share this list with therapists. You can then use it to work together to plan the person’s care, including how much assistance and independence you can expect. It also gives you a starting point to track further progress after the person comes home with you as caregiver.
If you are already caring for or supervising a family member at home, then it is important to include everyone in the discussion. There needs to be agreement among everyone providing care on the individual’s current level of skill and decision making abilities in order to safely promote greater independence.