- What's it like? What is attendant care really like? People in your home . . .
- I wasn't expecting this It's a shock, the accident, all these people coming into our house
- Expectations- - - reality Constantly adjusting, changing and managing my expectations
- My house needs modification We needed a ramp, bathroom modifications . . .
- My home - - - a workplace The challenges of my home being a workplace
- My worker - - - a professional Relating with professional workers
- We are all working to achieve goals Working as a team to achieve goals
- We are still grieving I am still grieving and so are my family
- My worker needs training Typical training includes . . .
- Everyone is affected Everyone, family and friends are all affected.
- My cultural background is . . . There are cultural differences & workers need to be culturally competent
- I live in a rural area There are some unique benefits and challenges in rural areas
- My family is. . . My family is messy and complicated and that impacts on attendant care
- My service provider is. . . My service provider isn't working out
- My case manager. . . My case manager gets all the pieces to work together
Everyone is affected
Everyone, family and friends are all affected.
Everyone is affected
You have to deal with the changes in your life.
Changes in life
Your family members have to deal with the
- the changes in their roles because of the injury
- their responses in coming to terms with your injury
- the impact of the change on the whole family.
Challenges
Some of the key challenges for your family members are:
- understanding the injury and its effects
- understanding the hospital and services network
- coping with the person with the ABI and the ways they have changed
- adjusting to family role and relationship changes
- managing and dealing with the practical problems that need to be solved day to day
- supporting family members and friends in dealing with what's happened and what's happening
- supporting and planning for the future.
Emotional process
The emotional process for family members is not linear with a series of pre-known phases. It is more like:
- a roller coaster
- a struggle
- working on the unexpected
- moving forwards and having setbacks.
Some of the elements in the mix of what's happening are:
- shock
- numbness
- guilt
- denial
- anxiety
- anger
- frustration
- emotional relief
- depression
- grief and
- acceptance.
A sister's experience (4 mins)
I found care workers very annoying. Being I think I was 13 at the time, I felt that my privacy, my life, they were always there and I didn’t know them. Like they were in my house and I didn’t know them. Because I got picked up from school and then I had to come home to a person that I didn’t know. I had no idea who it was. But some of them were really nice, they were really considerate and they knew, sort of. They would say ‘Hi” and “How are you going”.
The whole family 4 mins)
Probably my husband and my youngest daughter have biggest reactions. Mike still doesn’t know how to cope with it, still doesn’t. It broke him and he’s not fixed yet.
And Mikaela… She was the baby of the family when it happened. She had to grow up like that. She had to grow up overnight. Mum took off three months and didn’t come home so she was pretty cranky at me for that and probably still is.
Alana gets a lot of attention and not just from us. You know, she’s the girl that got hit by a car and survived. She thinks she is a bit of a star.
And then the grand parents, my mum and dad. They still come out to my house, well they come out lots, but they especially come out once a week just to help around the house and I don’t have to ask them to do something. They are also standby transport, standby everything.