Most people are thrust into the role of caregivers based on their personal relationships and the needs of people around them. Being a caregiver changes your life. You see things differently and you experience things differently.
I have been a caregiver for many years – for both family and friends. Taking care of someone you love as they loose their ability to carry on daily functions / routines is painful to watch. It is even more difficult to watch patients reshape their identities as they cope with their new realities.
The role of caregivers evolves from being a bystander to a decision maker. Every decision from scheduling, medication changes, and treatment protocols is thrust upon them. Changes are routine and rapid as the health of the patient evolves.
While our healthcare system allows us to get the best treatments, it is has yet to build adequate resources for caregivers. Though a lot of the focus has been on developing treatments, new drugs, and building world-class facilities, caregivers still have to rely on verbal instructions, handouts and outdated manuals.
Caregivers are key participants and decision makers during the treatment and recovery process, but do not have access to any training or tools that would help them cope with the responsibility and burden that they have undertaken.
There is an urgent need to build and develop programs to guide patients and caregivers with their care during treatment and recovery. NeuVisium Foundation was founded with the goal to address this knowledge void. Our mission is to help “bridge the gap from hospital care to outpatient care”.
Finding and deciding on the correct treatment is one thing in any patient’s journey. Follow-up care, and treatment management is the next step.
This is where our journey begins.