The moment a loved one is diagnosed with Alzheimer’s disease, or any form of dementia, families are met with overwhelming responsibilities. Navigating the cruel and lengthy process requires a tremendous amount of support. Often outside help is required, which means caregivers and family members must work together as a team.
This is perhaps one of the greatest challenges. The care families desire for a loved one goes beyond merely completing tasks. These unspoken expectations often result in confused caregivers who perceive requests as unreasonable. What do families really want? The essence is found in these seven simple requests.
- Relate to the person, not the disease. Our loved ones are much more than the disease you see. Everything they do is a form of communication; they did not choose this condition and are not trying to be difficult. Please make an effort to get to know your patient. Call them by name and speak as if you were conversing with the person they were twenty years ago. They are human beings deserving respect.
- Slow down! We are not discounting your workload. However, our loved ones do not respond well when rushed. Their life, as well as yours, will actually be easier when taken at a slower pace. Needs are overlooked when the task at hand is the exclusive focus. Please be attentive so you can hear our loved one’s requests.
- Provide the tools needed to thrive and survive. This once independent individual must now rely on others. In the end stages, their very existence is totally dependent on your diligence in meeting basic needs. Do they have the tools required to get food to their mouth? Was time taken to insure they have hearing aides, glasses, dentures, and other necessary medical aides? Are they cold, thirsty, dirty? A compassionate heart is required to see these needs.
- Make grooming a priority. Not only is good hygiene a matter of health, good smelling, well groomed individuals receive more positive attention – it is human nature. This consists of more than a quick shower. Attention to details, such as dirty nails, sticky hands, unbrushed teeth, and dry skin is so important to our loved one’s well-being. Dignity and self worth are achieved at any age, in any condition, through thoughtful grooming.
- Look with compassion. These are not children, but they deserve the care and concern a child would receive. Please insure they are appropriately dressed and not exposed in public. Ask yourself if a child should be locked in a room without supervision or left in a chair indefinitely without interaction. Your compassion will insure our loved ones are never treated in this manner.
- Be respectful of their home. Your workplace is our loved one’s home. The contents within that space is all they have left. Please be respectful: make the bed, put items away, and hang their clothes with care. Above all, make sure plastic gloves and other debris is placed in the wastebasket. Our loved ones worked hard for everything they have; please help them take care of their furnishings and belongings.
- Always be honest. We know you are not perfect – we are not either. There is no denying your job is tough and we know mistakes will be made. We are asking that when they are, you respond honestly. There is no need to make excuses or blame others. Most of all, we want to know we can trust what you say. Let your actions prove you will do your best and make changes when needed.
An individual providing care accomplishes tasks with their hands, while an exceptional caregiver creates moments with their heart. Despite this tragedy, there is value to be found in our loved ones who continue the process of living. Thank you for caring from the heart to insure they have the best life possible.
Judith Ingalsbe is passionate about bringing understanding to those experiencing the effects of dementia. She recently joined other advocates in Washington D.C. to secure funding for re-search and HOPE for those affected #TheyHaveAName. Judith has gleaned over a decade of caregiving experience with her parents, who were both diagnosed with Alzheimer’s disease and shares these insights in Stone Benches: Understanding the Invisible Footprints of Dementia. For more information visit StoneBenchesJourney.com.