Me and my shadow

As a family caregiver and caregiver coach I often hear comments like these from other caregivers:

• “He is always following me”
• “I can’t even go to the bathroom alone”
• “I need my space, she’s constantly with me”
• “I step away for a minute and he panics”

This shared experience is called shadowing. Shadowing is a term describing a behaviour where the person with dementia follows you closely… like a shadow. They may need to know where you are, what you are doing, what are they supposed to be doing and what’s next. The person does this usually from a place of fear, insecurity, anxiety or uncertainty. They follow you because you are their lifeline, the one who is familiar and whose very presence helps them feel safe and secure.

Understanding the behaviour did not make it easy for me to live with. I often felt stressed, frustrated, and at times even resentful during weekend visits with Mom. When she couldn’t see me, she walked through the apartment calling out: “Where are you?” “What are you doing now,”? Mom needed my attention at all times.

At bedtime, after an exhausting day, when I could finally close the door to the guest room and relax, Mom would barge in wanting to talk. In my head I whined: “Ugh!, I just want to sleep, I was with you all day, pleeease go away!” but I patiently listened for what seemed like an eternity until she went to bed.

One time during an October visit I left the window open in the room. As she entered the room she told me it was too cold to stay and then left without coming back. Hmmm! A light bulb went on. Each time I needed a break I would go to the room, open the windows, turn on all the fans and keep the room very cold even in the winter. My Mom would come in and say “Are you crazy? It’s freezing in here” and leave. It worked all the time! I found peace and relief from her shadowing me.

Here’s what else worked well with Mom and other caregivers:

1. Leave written notes in a prominent location for her to read–on the door, table, fridge or TV screen saying where you are. For example,  ” I am in the basement” or “ i am in the garden”.
2. Set a timer. When the timer rang it let Mom know I was done from a specific task or activity such as taking a shower or returning from a quick errand.
3. If you are needing to do household chore, make a tasty snack or play favourite tunes as a diversion.
4. Regularly reassure the person: “I’m here” “You are safe”, “I love you”, “You’re gonna be ok”.
5. Use community supports-enroll the person in an adult day program, attend a caregiver support group.
6. My favourite tip: Start your self care practice as soon as there is a diagnosis. Carve time out for yourself early on and create your own retreat, hideout, oasis. This may be in the form of a daily walk, coffee with a friend, even a cold bedroom. It will be hard at first but stick to it until it becomes part of a regular and familiar routine for both you and the person with dementia, You’ll be glad you did.

What’s your favourite tip to manage shadowing behavior?