There are many brain injury survivors in the UK with a large number of these people having wives, husbands, or other family members who act as unpaid carers, often on a full-time basis.
Whether it's providing physical support, or simply being there. We want to hear your thoughts.
What challenges have you faced while caring for someone with a brain injury? And what rewards have you experienced along the way?
Please share your views in the comments below. 💬
I am next of kin for a friend who had a TBI 41/2 years ago following a stroke. They are now physically fisabled eith complex health needs and live in a specialist care home. I visit most weeks and we video call most weeks too. Until recently there was another good friend who also visited regularly and together we discussed progress and did problem solving together. That friend has now died so I am feeling slightly at sea. There is a wider circle of friends who gwt news via whatsapp but who tend not to visit so often, which is exactly what my friend needs - friendship and stimulation, interesting conversations.
By way of substitute she has a rehab assistant who visits twice a week, which she pays for .
Things are not all bad. My friend has really improved since her stroke, is now verbal and is developing a friendship network in the care home.
They're too busy to be on here I expect.
The burden on any nurse, amateur or professional, is extreme.
It was helpful for my partner that he saw me immediately after my v bad fall (I am a v minor case here, only PCS) and saw how broken I was and heard my repeated questioning as my brain failed to be able to record what was happening.
He then had to take on my care, once out of hospital, and the full care of our adult autistic child who has disabling levels of anxiety and who was catastrophising my injuries (our child found me crumpled in the hall having fallen headlong a full flight of stairs.)
Exhaustion for a carer is extreme.
I say it was helpful for him because he knew that my symptoms came from a real cause. Still it was a big learning curve for him. When he picked me up from hospital he refused to let me have a wheelchair, because if I could walk down the ward I could walk to the car.
He has learned better since.
Brain injuries even at my minor level are so invisible to the observer and hard to decode.
He is also supporting his 102 year old mother and the burden is overwhelming.
my wife certainly voiced that she felt very alone, as no one explained or came to check up on either me or more importantly her, in the aftermath of my brain injury and my relatively short hospital stay.
We all the same!! Money goes to house immigrants rather than disabled!! Nowhere to socialise, talk to. Why this site is in so much use?!!
Without getting into the politics of help from the government, despite what happens in other situations, carers have been left far behind for far too long. We (the carers) must be saving the state enormous sums of money.
What words do you use when talking about brain injury with children?
Punctuation & good spelling ..........
rant!
