We all have moments in our lives where we feel like we are falling down Alice’s rabbit hole. However, people with dementia experience Alice’s journey as a daily occurrence. Strange people, unfamiliar shifting environments, danger, fear, feeling lost, no control over your world, and maybe smiling cats, talking caterpillars, and surreal tea parties.
The caregiver also experiences this descent down the rabbit hole by caring for the person with dementia. It’s challenging to deal with the daily roller coaster ride of their ever-changing world. It’s exhausting trying to keep day-to-day life together while having to enter into your loved one’s altered reality where anything can happen.
The one saving grace is the caregiver can get respite from Alice’s world by occasionally making time for themselves. However, the person with dementia cannot find rest from their descent into dementia. They live it every moment of the day and even night, and commonly they don’t sleep when dementia becomes worse at night.
Imagine that every shadow might morph into sinister forms, or you wake up in the dark, lost, and not recognizing where you are. Worse is you can’t differentiate between being awake or asleep. Everything around you is continually transforming into unfamiliar people and places, sometimes minute by minute—those who hallucinate experience strange characters. Sometimes, the rabbit hole leads to the past or a dreamlike world that is strange or frightening. They have no control, and like in a dream, the scenario and experiences are continually changing.
They have no firm ground to stand on, literally. Dementia progression commonly leads to a disconnection from the body. They can’t feel their feet on the ground, locate physical pain, and eventually lose control of their body.
Caregivers need to think of Alice and the rabbit hole story when caring for someone with dementia. It’s no Wonderland for them. It’s a nightmare land, and they count on you to help them to feel safe. Their descent is progressive, but it allows them to travel the dream with less fear when they feel safe.
Each day verbally reassure them they are safe and loved, and nothing will harm them because you are here. They need to hear these words even in the later non-verbal or non-responsive stages. Never assume they don’t listen to what is going on around them no matter how far down the rabbit hole they have fallen.
Remember, “The person with dementia is not giving you a hard time; they are having one.”