Invited to share an article on this subject, I was stumped. So much to say, how to be relevant, what topics to explore?
We have been known as the “head injured.” Now it is thought that people will better understand if we are known as the “brain injured.” The difference? None, really. Why change then? To help people know what an impact such an injury has and how significant it is when the brain is injured.
Caregiving for the brain injured ranges from total care (e.g. coma), to people now unable to manage their lives in an acceptable way, to many kinds of physical disabilities, to inability to work, to personalities totally changed. Many injured people show no outward signs. They may be referred to as the “walking wounded” as they are often misunderstood and not taken seriously. It is difficult, if not impossible, for them to receive any help or services.
Caregiving for the brain injured requires great patience and understanding. It requires a stick-to-it attitude. It requires keeping on keeping on-doing the same things over and over to help regain function. It generally requires constant supervision. It is not easy to find people to help or funding in this situation. Many are families giving 24 hours a day, 7 days a week.
Caregiving is also carried out by the injured for themselves and for each other. It is wonderful to see how they care for each other in our support group. They are absolutely doing the best they can with whatever they have.
So what am I saying? I am saying that there is a vast range of injuries out there requiring caregiving services as well as the funding to support those services. Adult day care programs for example; group homes; physical therapy opportunities; public transportation; supervised work programs; cognitive rehabilitation. Advocates such as attorneys and doctors are vital. Any or all of the above would lighten the caregiver’s burden drastically. Work continues on these issues both in the interest of the injured, as well as the caregiver.
Important Links
The National Stroke Association www.stroke.org
The Stroke Recovery Association www.strokerecovery.org
The Acute Stroke Toolbox www.stroke-site.org
Traumatic Brain Injury Help http://www.tbihelp.org – The Brain Injury Information network offers chats, resources and the following:
CaregiverInformation.com
StrokeFamily.org
American Heart Associaton – Heart And Stroke A-Z Guide
American Stroke Association –
Internet Stroke Center – http://www.strokecenter.org/
Stroke Information Directory – http://www.stroke-info.com/
http://tbinet.org/archives and http://www.tbinet.org/support1.htm (comprehensive lists of many listservs for people with TBI and their caregivers)
Bungalow Software- Recover Speech & Language Impaired By Stroke Or Brain Injury http://www.bungalowsoftware.com/
By Barbara Potter
