I began my internship in a large healthcare organization specializing in rehabilitation, chronic illness, dementia and brain damage. I started working with people with dementia, families and staff, specializing in moods and behaviours.
Over time, it became personal.
Deep down inside of me, a dark fear emerged. It never left me.
It is not what most people think it is.
It was not a lingering angst that one day it would be me, or that it would be a family member, although that would be difficult too.
My fear was that other people would not truly see me anymore once I had dementia, that I would not be accepted for who I would be in that moment.
You see, one day, as I was sitting in the living room, observing residents with dementia, staff and interactions, my eyes fell on an elderly woman named Angie. She was sitting quietly, seemingly in a sort of absent state.
She didn’t respond to anything that happened in the living room. She looked depressed and nervous.
Suddenly, she stood up, holding tightly to the table. She looked frightened, as if something horrific was happening in front of her. She began to cry passionately.
The intensity of her tears, the pained look on her face, the anxiety and the despair chilled me to the bone.
The nurse in the room, meaning well, told her to calm down and requested she sit, but Angie didn’t want to hear any of it. The nurse tried to convince her and insisted that everything was okay, that there was no need to cry, but Angie refused and pushed the nurse’s hand away.
A cup of coffee fell to the ground. The nurse appeared somewhat frustrated.
It didn’t go well.
As I witnessed Angie’s heartbreaking plight of fear and sadness, a long-lost memory resurfaced that would have a profound impact on the rest of my career and, in fact, my life.
I must have been about five years old when, nearly every night, I would wake up crying after the same recurring dream.
I can still remember the feelings of loneliness and confusion as I heard my own weeping in the empty silence of the thick darkness. It was as if I was abandoned and lost.
In those dreams there were no scary zombies or monsters or anything we generally consider frightening. Nonetheless, there was something inexplicable that upset me. For years I didn’t really understand what it was, and later I purged it from my memory.
Now, looking back as an adult, I’m better able to describe what I felt as a child.
During those nightmares, what I experienced was similar to being locked inside myself without any ability to escape or ask for help.
Feelings of pure loneliness, desertion and abandonment in a never-ending silent darkness prevailed.
It was my mother who would come to me and calm me down, reassuring me and staying with me until I felt safe again.
It turned out Angie was re-living horrendous experiences from her youth, when her father would threaten her and her mother with a gun. Her old trauma re-emerged, and in that moment in the living room, it was real to her. This happened about three times a day.
I found that the way to calm her and bring her back to the feeling of safety was to carefully and slowly approach her, seeking eye contact, while gently touching her hand. Once her teary eyes met mine, I would hold her hand and “tell” her with my gaze:“I am here for you. It’s okay now; you are safe.”
I would maintain eye contact, and then I would say aloud in a calm tone:
“I am here…
I see you, and you are safe….
It’s okay now…
I am here for you.”
She would calm down and eventually we would sit together while still holding hands. Then we would listen to music, and she would remain placid for awhile.
My deepest fear, you see, is to feel lonely and lost again, to end up in a situation where nobody takes my feelings, my experiences and my perception seriously, to find myself stranded where I’m not heard and nobody looks me in my eyes, letting me know that they see me, that they are there for me, and that everything is okay. Sadly, this is the reality many people with dementia experience daily.
The intimacy of belonging, the feeling that you are not alone, is one of the most important and profound experiences for our wellbeing. This is not only true for the social butterflies among us; it’s fundamental for each and every human being.
It’s not about how many people we feel connected to, as long as we experience an authentic connection with someone.
In essence, we don’t survive if we don’t have others to care for and support us. People with dementia need to feel those moments of true connection too, regardless of their ability to communicate or level of functioning.
People with dementia have been voicing that one of the hardest factors of the illness is when their loved ones suddenly don’t include them anymore.
Even in later stages when they may not be able to express it, they can still feel that they’re not being acknowledged.
Our environment plays an important role in feeling safe and whether the people around us make us feel safe, as assessed by the deeper parts of our brains. Our brains also assess whether a person is sincere or not. This happens on a subconscious level, and it’s where our “gut feeling” comes from. The same holds true for people with dementia.
Feeling safe with another person depends on a variety of factors, including compassion, empathy and authenticity (whether the person truly cares about you). Most people, including those with dementia, can sense when you are present and sincere and when you’re not.
When you feel lost, alone and confused, the most precious gift is for someone to just be there for you, to offer their presence, look you in the eyes and say in a loving way:“I hear you. I am here for you.”
The genuine presence of another person can feel like a precious eternal moment. In that moment, things are okay.
I have been able to turn my deepest fear into a strong drive, and, based on my experiences, I have adopted a penetrating belief that every person living with dementia can experience true connections, joy and profound, meaningful moments.
With the help of the latest neuroscience findings and best practices, we now have a much better understanding of what we can and should do to reduce stress and anxiety for the person with dementia and increase his or her quality of life.
The same goes for caregivers and family members, who too often feel abandoned while battling loneliness on their journey, and for professionals, who need the right strategies and tools to be able to serve their clients on a deeper level.
This is my mission: to end the unnecessary loneliness and overwhelm and make life with dementia worthwhile,help increase moments of joy and develop meaningful connections for everyone on the dementia journey.