Life sure does change rapidly for not only the person with a brain injury, but also for their partner and family. Injured people who live on their own will obviously have a huge disadvantage without having anyone to share their burden, give them daily encouragement, help improve their outlook and look after them – organising medications, outings, daily household chores, arranging appointments and everything else!
Maybe the hardest part is that a spouse in a great loving partnership may now become ‘just’ a caregiver. If the brain injured persons brain has lost the ability to be a loving person because of their injury – especially in the early days of the injury – it can be simply devastating for the spouse, friend or family member. Everyone has to make huge changes and have an acceptance now that life has changed dramatically for all.
Planning events and outings can be hard as sometimes your person does not want to venture out amongst people they don’t know, or there is too much bright light, too hot, too cold – so you have to change your plans. Even at home watching T.V, it often has to suit their likes and dislikes, you can’t watch shows that cause a disturbance or upset, panic attacks or plain worry. Pleasing our person with brain injury and catering to their needs often means the carer misses out on their favourite hobbies or their own needs get neglected.
Family and friends don’t always understand how the abilities or very nature of the brain injured person may have changed, and they can’t possibly understand, no matter how much we try to explain – even our own G.P cannot really understand, sadly they are too busy. When family visit, they see a lively talkative person because they are seeing a person who is excited by conversation or comments. They don’t see the sad and downcast times when the person feels lost and bewildered.
The joy in life is lost to us all. What about me?? When we lose our mate or family member to brain injury, the mood in the home can become very sad and lonely, and it is hard sometimes to find the motivation to carry on being that support person – we get sad and lonely too!
With constant mood changes, stress, feelings of hopelessness, frustration, bad headaches and fatigue, the quality of our lives get lost and it is hard to overcome and be the person they feel they used to be. Add further health challenges and there is almost too much to cope with.
Thank goodness Headway is here – so the brain injured person and their families can meet others with the same life challenges and find some comfort and support.
By Bev Guddop
If you are a partner or parent, brother or sister or friend of someone who has sustained a brain injury, you will know that this type of injury has a profound effect not only on the person who has the injury, but also on everyone around them. Dynamics and roles change through necessity and sweep you along regardless of whether you are prepared, ready or willing. Your role often becomes one of every day organiser, advocate, minder, connector to services and navigator through the minefield of services and entitlements while maintaining relationships within the family and outside friendships.
This is often an invisible role as people around you may not notice. Brain injury is a hidden injury; it is not as easily identifiable as say, a broken leg. There is no cast, limp or wheelchair so you and your family member will often go unnoticed. It is equally fair to say that your person – partner, child, friend – would not be coping or participating at the level they are if it was not for your care, loyalty, understanding and commitment.
If you feel your situation needs reassessing and more specific care is required, you can ask your doctor for a new needs assessment. If you have an ACC claim, it can be done under this.
The Carers Support N.Z website: https://carers.net.nz/ has a lot of useful information on there that you may find helpful. There are stories of other people’s experiences that may resonate https://wecare.nz/?p=7499%20
Websites such as these can be so helpful, they validate the work you do while acknowledging the toll it can take. One tip they give is to start by giving yourself 5 minutes a day to yourself. I suggest you use that time to browse the website – there are links for reading and discussions through-out.
For any of you interested in sharing your carer stories and in so doing, helping others feel less alone, please get in touch, we are happy to include your stories in the monthly newsletters. Another option is to hold a carers morning or afternoon every month, have a cuppa and relax for an hour, let me know if this interests you so I have an idea of numbers.
Want to drop in any time? Give me a call to make sure I am here and please feel free to drop in. Free tea and biscuits!
Diane Hursdfield
Liaison Officer
07 572 4547