Many people (like me) take independence and the ability to communicate for granted. When I am thirsty, I help myself to a nice cold glass of Coke. When I feel like I need to see a doctor, I pick up the phone and make an appointment. When someone is intruding into my personal space, and I’m frightened because I don’t recognize them behind their mask, I either back away or ask them to please stop. I make these decisions with the knowledge that I am in control of my options and my choices. Not everyone has that luxury.
In my mind, I know that. I am aware that there are many people living in temporary or permanent living situations who depend on family and care-givers to understand their needs, and also depend on them to advocate for them. But I don’t think I fully understood the impact of that reliance until our mom moved to a long-term care (LTC) home.
Watching our mom struggle with the challenges of living in LTC for the last four years has opened my eyes to a world where you are reliant on others for almost everything. If you are affected by dementia, stroke or any impediment that affects your communication or mobility, day-to-day needs become day-to-day obstacles. Because of that, I recognized that I had to ensure that caregivers in the home were aware of her needs. We obviously couldn’t be present in the home 24/7 to speak for her, so a pretty poster was created for our mom’s room to provide meaningful information: from medications, phobias and allergies to preferred treats, the names of her grandchildren, and some career highlights. The hope was that her poster would speak for her, and not just be informational but also provide a reflection of who our mom really is. She’s not a dementia patient; she’s a strong and amazing role model who happens to live with dementia.
The process of creating the poster led to more questions and ideas…
What happens to residents of LTC who don’t have persistent loved ones advocating for them? Could a poster of their own help them too? What about individuals with chronic illnesses, who spend ridiculous amounts of time in hospitals or other health-care facilities? What about people battling mental-health illnesses? What about people who live in transitional housing, be it a foster home, supportive housing or a place of respite? What about disabled children, spending time at school away from the voices of their family who are so accustomed to speaking up for them?
Everyone has a story to tell. Everyone deserves a voice.
Painted Fox Co 