- 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
Expectations . . . reality
Expectations . . . . reality
Adjusting . . . . managing . . . . changing . . . . expectations
Adjusting our expectations to our new realities is a huge challenge.
Our expectations help us to get around day to day. Much of the time things happen as expected – we get up, go to work or study, cook meals, drive, use public transport, have friends over – we know what to expect in these situations.
After an injury what we used to expect often doesn’t happen.
We often don’t know what to expect.
Holding on to the expectations we used to have can often creates problems.
Adjusting our expectations to our new realities is a huge challenge.
When reality and expectations don't meet
There are many times on our journey where reality and expectations don't meet. Some common ones are:
In the hospital
People with brain or spinal cord injuries don't get well as quickly as we expect. Its not like in the movies where someone can wake up out of a coma and be back to their useful self.
Hospital to coming home
When people with injury come home from hospital things don’t go back to the way they were.... Everyone has to adjust to the new realities.
Having people in the house.. .my home a workplace
I expect my home to feel like a home - privacy, personal space, family - but workers are now coming in. I have to get used to workers being around, communications books, worker health and safety checks and much more.
People with brain injury: The person is the same but different
I am the same person that I used to be but I am also different. I am different in ways that I don't fully understand so I need to get to understand myself.
Everyone else also needs to get to know and understand my new self.
Programs, service providers and workers
Programs, service providers and workers have guidelines, rules, regulations, policies.
I need to understand what the attendant care program can and can't provide.
I may need to change my expectations to fit in with what's possible within funding guidelines, or worker health and safety standards.
The slow pace of change. . .
While I want change to happen quickly I may need to readjust my expectations to what's possible. Change is often slower than expected.
Because of changes in work and employment I may have not have the financial resources I used to have - which in turn may mean I need to budget more carefully and connect my expectations with my financial resources.
For the person with the injury
I expect to get my old life back – but its not the same.
I am not the same. I need to discover my new self. What I am capable of. How to relate to others.
For family members
I expect recovery and progress to be quick - and it isn’t.
I expect the person to come home and things will go back to normal – and they don’t.
I expect the person to get back to their usual self – they are the same person, but they are different. I need to understand what's new.
I expect home to be a home - and now its a workplace as well.
Working with people who don't know what to expect.
Being able to work flexibly
Being able to work with changing expectations.
When attendant care is working well
You and your family members are conscious that you are going through a process of change - you expectations are changing as they are connected with your new realities.
Service providers explain what to expect and talk about realistic expectations and time frames.
Attendant Care Workers are flexible and can deal with changing situations.
Tips for adjusting our expectations
Some tips for helping us to adjust our expectations - getting expectations and reality re-commenced.
- Develop and attitude of exploration – discover what’s possible
- Take one day at a time
- Judge yourself and others less.
- Build new relationships and ways of interacting
- Understand the process of grief and loss
- When your expectations and reality conflict, it’s your expectations that need adjusting.
- The adjustment process is likely to be lengthy - months and years not days and weeks.
In the hospital - its not like in the movies
It was about the 4th day and her surgeon came out and said ‘I really need to talk to you’. . . . ‘You do realise, that she’s still not out of the woods. And she’s not just going to wake up’. It’s not like the movies. Brain injury is not like the movies. You don’t just automatically one day everything is OK, you sit up and go, you know ‘Can I have McDonald’s?’ It’s not like that at all. And that’s the bit that was the hardest to get my head around.
Coming home - I would have like someone to tell me what it was going to be like.
I went into it really blind not knowing what my expectations were or what they should be. I would like somebody to have sat down with her and say this is what’s going to happen or maybe meet somebody else whose had a carer in their home or just a little bit more preparation and say, look, its okay you don’t have to have your bathroom spotless and you don’t have to make sure the dishes are done. It's okay, the workers are there to look after Alana they are not there to critique your house - just to prepare me a little a bit.
Expecting too much or too little from workers
Some people will expect you to do the whole of their housework. We are not actually there for that reason - we are there for the client. Some people think the worker is going to come in and they are just going to be my housekeeper. Sometimes they don’t know what to expect – whether it is fully explained to them: This is what service you will get and what you won’t get.
So I think there can be a lot of frustration from some people because they expect more than what they actually receive from the workers.
Sometimes they receive more and they were expecting less.