Identity is the set of characteristics that a person has and that distinguishes them from others. Without identity, we do not exist. This is what happens to the primary caregivers of patients with Alzheimer’s: they do not exist. They do not exist because they are 100% committed to the care of completely dependent individuals who need them 24 hours a day, 7 days a week.
People who care for patients with Alzheimer’s have put their identities on hold to care for someone else’s identity full time. Their identity waits for them to be back after having devoted themselves body and soul to other people, living their lives as best they can. It’s not only, as most people think, that these caregivers can’t have leisure time or don’t have time to do the things they used to do, it’s that they’ve left behind life as they knew it, and in many cases, they’ve given up their jobs to take care of their fathers, mothers or relatives. If they did, it was probably because they had no other choice.
“World Alzheimer’s Day Should also be
Preserving identity when you are the primary caregiver of a patient with Alzheimer’s is not an easy task; we all give advice to them but never take a moment to consider whether these recommendations can actually be implemented. On average, a primary caregiver dedicates approximately 15 hours a day, 7 days a week to the patient, so it is difficult not to get exhausted and lose your identity. For this reason, World Alzheimer’s Day should also be Caregivers Day, because behind every Alzheimer’s patientthere is one or several main caregivers living two lives, their ownand the life of the person they are helping day after day.
Ask for help
Professionals of different fields can set guidelines to ensure caregivers do not get burnout and thus contribute to maintaining their personal identity. However, without adequate collaboration from families and institutions, this is a very complicated task. Attending support groups, learning to recognize the signs of overload to detect them from the very beginning and asking for help are some of the fundamental pillars for helpingcaregivers not to lose their identity. In addition to physical and mental exhaustion, caregivers experience the emotional burden of watchingtheir loved onesdeteriorate due to this disease.
While many negative effects of caregiving are reported, there are also positive aspects of caregiving that shape the caregiver’s personality. Patience, responsibility, unconditional love, and respect are improved by caring for someone day after day. Most certainly, throughout my career as a professional working in the field of Alzheimer’s disease, many caregivers have told me that, despite how hard and devastating it has been to take care of a patient with this disease, once pastand after analyzing the experience lived, they still take great satisfactionin having done all they could to ensure that the patient had the best possible quality of life.
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- Quality of life in Alzheimer’s disease - February 11, 2019
- The Caregiver’s identity in the face of Alzheimer’s disease - September 18, 2018
- The remains from a shipwreck: emotional memory and Alzheimer’s - June 19, 2018