Introduction
Reloj de Arena regularly takes part in academic and reflective forums on Alzheimer’s and other dementias. At the 2nd International Virtual Congress “Brain and Alzheimer’s in the 21st Century”, held during the pandemic, speakers addressed the main challenges faced by caregivers of people with dementia and terminal illnesses.
In this post, we share some of the most important messages and reflections from that forum, focusing on the physical and emotional impact of caregiving and on the importance of also supporting and caring for primary caregivers.
"The primary caregiver can end up deeply hurt; stress builds up with no attention and no solution"
God! I'm tired, help me!
Every story is different, every life was lived differently, and so is its end. Illness is perhaps the hardest moment of that life, and it affects not only the patient but also the caregiver who looks after them with patience, love and dedication, and who in the end becomes physically and mentally ill.
I feel locked inside my own confinement!
In our Antioquian culture, there is a deep-rooted belief that taking a sick family member to a specialized care facility means “abandoning” them. It may be the hardest decision one can make, yet, seen another way, it is the greatest act of love, because the caregiver is ill and no longer has the strength to keep caring.
Caring for an adult with dementia or a terminal illness doesn’t just mean bathing them, changing their clothes and feeding them; it means much more. It means making every one of the 24 hours a day full of quality: complete physical, mental and ongoing care.
But who thinks about the caregiver?
Caregivers need to keep routines, be creative, be resilient and look after their mental health as best they can. Caregivers need a plan B and a support network that gives them space to release so much pressure.
The goal must be quality of life for both the patient and the caregiver. There are suitable places to care for patients who need 24-hour assistance. What matters? Knowing how to choose the place: checking that it is legally registered, assessing the professionals who provide care, the services offered, the protocols used to manage patients, oversight by the local health authority (Secretaría de Salud), the facility’s track record, recommendations and, of course, a physical space suited to providing care.
