Imagine you awake one morning in an unfamiliar room; missing the details of your arrival. Besides amnesia, you suffer from disorientation. Your body is not functioning and aches everywhere. You try to speak but words are missing from your vocabulary. The first person you meet, you have never encountered. Throughout the day more strangers enter the room and you realize you are in a nursing facility being treated for a disease. The doctors and nurses say you have Alzheimer’s disease or another form of dementia.
A disease you don’t recall having. You stare at them in disbelief as you contemplate their words. You last remember being in your safe, secure environment. Now you're surrounded by strangers and forced to spend the rest of your life in a constant state of confusion and uncertainty. How pleasant and welcoming would you be with this new reality? Especially if you don't understand what's happening to you.
Your mind, which operates your body, is foreign to you. And each day, your mind slips further and further away. Who can you trust in this critical time of need?
Out of the millions diagnosed, a limited few can afford to live in sufficient nursing facilities. Some patients may not want to which is one reason more people are thrust into the caregiver role. Hopefully patients have a compassionate, considerate, caregiver as a viable option for long-term care. If not, dementia patients may isolate themselves from the world. Suffering through their condition with inadequate care.
It’s estimated, 16.1 million Americans provide unpaid care for someone with Alzheimer’s disease or another form of dementia. According to Alzheimer’s Association, in 2017 caregivers provided about 18.4 billion hours of care to people living with dementia. People who never realized they stepped into the caregiver role the moment they provided care for their child or an adult unable to care for themselves. Regardless of the relationship, unpaid relatives are caregivers. Caregivers can be the spouse, partner, friend, or a stranger to the person diagnosed with dementia. Not all caregivers are professionals. Many are everyday people caring for their loved ones.
Before my mother was diagnosed with dementia, she made her children promise to never admit her to any long-term care facility. If we did, she would come back and haunt us. Not wanting to find out if she could uphold her promise, we honored her request but more because we loved her. We believed no one could care for her better than her family.
However, us every day people need guidance and instructional material. Providing care for dementia patients is a little more challenging than caring for someone diagnosed with other ailments. It requires someone with knowledge of the disease. Able to identify the three stages if the person has Alzheimer’s disease. The ability to explain things in a way the patient can understand. And by diverting disagreements and confrontations with the patient.
The caregiver cannot help their patient if they don't know how to communicate or treat them. You cannot expect someone to comprehend what you are saying if they do not recognize or know the definitions of the words being spoken. When caring for any patient, a caregiver should be able to understand body language and facial expressions. Is the person experiencing discomfort or pain and unable to communicate? Can the caregiver tell if the patient understands the explanation of treatment and medication administered to them?
It's plausible the caregiver will care for their patient through the stages of the disease. The caregiver and person being cared for will build a relationship. As the patient, you want to feel comfortable with your caregiver. From that relationship, trust and respect will develop between the two of you.
As a caregiver, it’s important to remember your patient is suffering from a brain disease which decreases their mental and physical capacity over time, so patience and humility are good traits to have. It doesn't hurt to have a thick skin to endure abusive outburst that can become violent on days your patient is frightened and lashing out. And always treat anyone under your care with dignity.