1. Minding Yourself Caring For the Carer After ABIDr
Dr. Caroline Mc Grath
Senior Neuropsychologist
ABII Ireland

2. Brain Injury the Journey
If you are watching this talk then someone close to you has an Acquired Brain Injury.
Most family members will say that life is now very different than it was before the injury.
Role changes, financial problems, personality changes in your loved one and feelings of isolation are just some of the stressors identified by family members.
If you are experiencing any of these, then you are not alone.
The whole family is affected when loved one suffers a Brain Injury

3. Emotional Responses
Panic/Chaos
Denial
Anxiety
Fear
Anger
Frustration
Irritability
Disgust
Despair
Love / Hatred
Shame
Embarrassment
Guilt
Grief / Loss
Isolation/Loneliness
Depression
Helplessness
Hopelessness
Happiness
Resentment

4. Interacting Systems for Stress
Environment
Thoughts
Physiology
Emotions
Behaviour

5. Negative Automatic Thoughts
NEGATIVE They never have anything positive to say about us.
AUTOMATIC They just seem to come into your mind without any effort.
DISTORTED They are not always supported by the things you know to be true.
PLAUSIBLE You accept them as facts and do not question them.
UNHELPFUL They keep you feeling stressed or low, and make it difficult to change.
INVOLUNTARY You do not choose to have them and they are quite difficult to stop.

6. How our thinking trips us up – in 10 different ways!
BLACK AND WHITE THINKING
We see things as black and white; there is no grey or middle ground. Things are great or awful. If what we do isn’t perfect, it is a total failure.
2. OVERGENERALISATION
We see a single negative event as a never ending pattern of defeat.

7. How our thinking trips us up – in 10 different ways!
MENTAL FILTER
We pick out a single negative detail and dwell on that until everything is affected by that negative.
DISQUALIFYING THE POSITIVE
We “don’t count” positive experiences and maintain a negative belief that is not based on our everyday experience.

8. How our thinking trips us up – in 10 different ways!
5. JUMPING TO CONCLUSIONS
a) Mind Reading
For example, we may decide someone is responding negatively to us without checking it out. We don’t ask to see if something else is going on.
b) Fortune Teller Error
We expect things to turn out badly and don’t allow for the possibility they may be OK, good…. or even great..

9. How our thinking trips us up – in 10 different ways!
7. SHOULD STATEMENTS
We defeat ourselves with ‘shoulds’, ‘musts’ and ‘oughts’. The phrase “I should” is often used when “I wish” or “I would like” is more accurate.

10. What is Stress? Engineering Standpoint
The more force (stress) you put on something, that thing is eventually going to break!
Biological Standpoint
Biological thresholds that once reached, will lead to adverse bodily changes
Psychological Model
“A state where an individual perceives the demands of a situation as exceeding their resources”

11. Acute versus Chronic Stress
Short-term (Acute) stress may not be a problem and may actually be good for us.
However if it goes on too long it can have negative impact on our health.
In the context of caring for a family member with an ABI, this notion of stress is important….
Stress can affect both the physical and mental health of carers.

12. Impact of Brain Injury
High levels of Anxiety & Depression may be experienced by the family in months / years following injury (Livingstone 1990)
Caring for a family relative with a chronic neurological condition can have direct effects on health
Over one third of carers will have clinically significant levels of stress or distress

13. Physical and MH of Carers
Increased rates of depression, anxiety, social isolation and changes in relationships with other family members, have been reported at 6 months following an injury (Marsh et al., 1998).
In Ireland, carers who report being under emotional strain are almost 3 times more likely to show adverse health outcomes.
When carers do not take leisure time (time out), adverse health effects are almost 8 times more likely than when carers allow themselves to attend to something else.

14. Factors associated with increased stress in caregivers
Ambiguous loss:Recurring experience of loss, complicated by the ongoing existence of the person your trying to grieve (Boss 2007)
Changes in a loved ones personality (emotional and behavioural changes) can lead to higher levels of stress in a caregiver than physical or cognitive changes (Marsh et al, 1998)

15. Factors more likely to be associated with stress in carers
Withdrawal in your loved one with an ABI
Having conflicting roles and responsibilities
Having very poor support from a partner
Having a narrow range of coping strategies
Being overly focused on the caring role
Rating the current relationship as poor
Reporting no satisfaction from caring

16. For the family member / Carer
Increased responsibility
More decisions
More challenges
More demands
Decreased time available
Competing demands
For time
For attention
For affection/care

17. Impact of Stress
The effects of stress can vary from person to person
Not all Carers will experience negative outcomes (Rivera et al., 2007)
Good problem solving skills have been associated with decreased levels of depression and anxiety in carers
There are things that you can do to make caring less stressful

18. Learn to recognise stress
Try to pay attention to the early signs
Tiredness
Irritability & Anger towards your loved one
Sadness & social withdrawal
Avoidance & denial of the injury
Health problems (Bachhaus & Ibarra 2012)
Most of us have particular tell tale signs that we’re feeling under pressure or we’re getting stressed
Check in with yourself
Learn your personal tell tale signs

19. Managing stress: Acknowledge your feelings :
Talk to someone that you trust abut your feelings
Be gentle with yourself
Identify & Reduce stressors
Prioritise what needs to be done & make list. Set realistic goals
Ask for help from friends and / or family
Be clear about what help you want

20. Managing stress: Introduce enjoyable activities Relaxing activities
Plan time for yourself every week
Meet with friends and / or family regularly & talk about other things rather than brain injury
Recognise strengths that loved one has
Are there activities / tasks that your loved one could take responsibility for?

21. Look after your physical health
Self Care
Look after your physical health
Get enough sleep – Lack of rest just aggravates stress
Take time to plan, cook and eat healthily
Avoid using Alcohol and Drugs to cope
Use relaxation techniques daily (even when feeling well)

22. Self Care continued
Don’t expect perfection – remember you can only do the best you can with the resources you have on that day
Exercise regularly – proven stress reliever, aim for 30 mins daily walking, swimming)

23. remember Self Care continued
Give yourself a break if only for a few minutes.
Attend a support group
Seek alternative viewpoints –
from others
Ask yourself if you can look at things in a different way?
remember
“People are moved not by events but by the views they take of them.”
(Epictetus 55 – 135 A.D.)

24. Identifying and challenging your negative automatic thoughts.
What was I thinking just before I started to feel this way?
What is the evidence?
What alternative views are there?
What is the effect of thinking this way?
What thinking errors am I making?

25. Positive Reframing
Challenge negative thinking and self-talk by stepping back and considering the situation and your associated thoughts from a different perspective,
Making a list of positive thoughts when you are in a less stressful place which can be used to help reframe the negative thinking.

26. Coping Statements – Samples
Design your own , e.g..
This is anxiety, it’s not comfortable but I can cope with this. I’ll just continue with what I’m doing or find something more active to do.
Right now I have feelings I don’t like.  They will be over with soon and I will feel better.  I know that I am stressed and need to do something relaxing.
I’ve stopped my negative thoughts before and I’m going to do it again now.  I am becoming better and better at deflecting these automatic negative thoughts (ANTs) and that makes me happy.

27. Things that help
Not everything has changed. Recognize the good qualities that are still there.
Post-injury change is a continuing process. Recognize the injured person’s ability to change for the better. Point out what you see and like. Encourage the person to speak in ways that are appreciated.
Communicate and get to know this “different” person better. Ask about their feelings, what they like and dislike, and how you can help. Try to share your feelings, good and bad, with them.

28. The 10 strategies reported by carers to be most helpful:
Realising that the person you care for / support is not to blame for his or her position
Taking life ‘one day at a time’
Finding out as much as you can about the problem
Keeping a little free time for yourself
Realising that there is always someone worse off than yourself

29. The 10 strategies reported by carers to be most helpful:
Realising that no one is to blame for things
Keeping one step ahead of things by planning in advance
Getting as much help as you can from professionals and service providers
Talking over your problems with someone you can trust
Looking at ways that parts of life may have changed for the better, no matter how small

30. A straightforward recipe for coping with caring
Recognise the strengths that you demonstrate in a hundred different ways, every single day in living and caring /supporting for your loved one with an Acquired Brain injury.

31. Thank you
Thank You