Sep 5, 2018

Alzheimer's Care, Me and My Alzheimer's Shadow

Shadowing causes the Alzheimer's caregiver to feel like their personal space is being violated. They feel smothered. Caregivers attempt to separate themselves from the person with dementia and this can lead to the perception on the part of the patient that they are being rejected.

Constant shadowing and following by Alzheimer's patients can annoy the caregiver.

By Carole B. Larkin
Alzheimer's Reading Room

Some people start exhibiting a behavior I call “shadowing” in the mid-stages of Alzheimer’s and other dementia. 

Those who are able to walk or roll in their wheelchairs will literally follow their loved one or caregiver around the house trying to be as close as they physically can to the other person.

After awhile this behavior becomes disconcerting and even annoying to the Alzheimer's caregiver.

Shadowing occurs when the person with dementia attempts to keep his or her caregiver in their sight at all times. Shadowing can cause the caregiver to feel smothered, and feel like their personal space is being violated.

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The caregiver essentially loses their own personal space and begins to feel smothered by the person with dementia. This leads the caregiver to attempt to separate themselves from the person with dementia physically, which then can lead to the perception of rejection by the demented person.

If the person with dementia cannot formulate the words or thoughts to tell the other person that they feel sad or angry or upset or hurt by being rejected, they will show their displeasure in other ways.

I call those actions negative behaviors.

There are more negative behaviors than I can enumerate, but some examples are, shouting, cursing, hitting, or biting. The circle of caregiver attempt to escape and the demented person feeling hurt by the caregiver's actions is a downward spiral leading to pain for both.

At the bottom of the shadowing is one of humanity’s most basic emotions -- FEAR.

Fear is the constant companion of the person with dementia.

As they shadow us, fear shadows them. The world grows more and more incomprehensible, and eventually the environment becomes scary and confusing (i.e. getting lost in the house looking for the bathroom, etc…)

Often, patients cannot comprehend what is being said by their loved ones and others. They often feel lost and alone. It is easy for a person suffering from dementia to become confused. No wonder they look for a protector. Wouldn’t you?

The one who takes care of them day in and day out is their light against the darkness of fear. It is totally understandable that the person with dementia would want to stay as close as possible to the person who provides safety. What is the caregiver to do to keep from going crazy from this behavior? The answer is a two part process.

1. Address the underlying emotion of fear by constantly repeating to your loved one all day, every day, like a mantra.I love you. You are safe. Everything is OK or Everything will be OK. Those words exactly. No more No less. Repeat them so often that even your loved one with dementia can repeat them with you. Eventually those words will become embedded in them, and just hearing those words will flood the person with relief, and comfort.

2. Refocus (distract) your loved one with something that will make them concentrate on the thing you put in front of them instead of their fear and/or locating their protector (you!). Bob uses the parrots. You need to find something for you to use to redirect their attention off of their internal fear and onto something outside themselves.

Something either visual or physical usually works best, but whatever engages the attention of your loved one for at least a short period of time will do.

  • Examples are folding things like towels, napkins, or pants. 
  • Counting things or organizing objects like coins, nuts and bolts, or buttons. 
  • Holding something like a squeeze ball or brightly colored scarf (for those further along).
  • Looking at a group of favorite pictures or a favorite book, or something that holds their interest for a few minutes. 
You know what it is for your loved one. A note of caution here, be careful if your loved one is prone to put small objects in their mouth.

When you need a bathroom break, or something similar, try this.

3. Buy or get out an egg timer. Set your loved one at the kitchen table with something in their hands like a napkin or a book. Put the egg timer directly in front of them where they can see it. Determine how much time you think you’ll need to take care of business and set the clock for that amount of time. A minute or two longer works best. Tell your loved one that you are going to the bathroom, and that you’ll be back when the bell rings. Their job is to watch the clock. Say no more or no less. Set the timer and go!

The Best Way to Find Solutions to the Problems that Caregivers Face Each Day

Make sure that you are back by the time the timer rings. You need to have your loved one trust you, so no dawdling! When you come back you say "See I’m here when I said I would be", or if you are early, say “See, I’m here even before I said that I’d be back”.

Meet Carole Larkin

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Original content the Alzheimer's Reading Room