Many caregivers can relate to this unsettling experience: waking up in the middle of the night, still in the hazy with sleep, to find the person you care for standing over your bed watching you. This is one of the behaviors associated with “shadowing,” when the care recipient wants to remain near the caregiver at all times. Living with the constant sense that you are being watched, even when you’re sleeping or using the restroom, can feel suffocating. Here are a few insights into the causes of this behavior, and some suggestions for methods of coping with it.
As unsettling as the scenario above may be, imagine the following: you’re losing your ability to communicate, you become lost in your own home, you don’t know what time of day or even what month it is, and you’re not allowed to leave your house without supervision. You’re losing the ability to control or understand your environment, and you don’t have the adaptability to cope with change. Many dementia-related behaviors are stem from the fact that the person with Alzheimer’s is not able to control their emotions. This particular behavior is triggered by fear.
As a person’s dementia advances and their world becomes more overwhelming, they become more and more dependent on their caregiver for assistance in all aspects of daily life. For some people with Alzheimer’s, their caregiver signifies order, safety, and comfort. Keeping the caregiver in sight is reassuring to the person with Alzheimer’s; they know that they will be able to cope with any situation with the caregiver close at hand.
As with any behavior, the first step to managing it is to understand its roots. Ask yourself:
- When does this behavior typically occur?
- Do certain people or events trigger this behavior?
- What makes the behavior better? What makes it worse?
If the behavior follows a typical pattern, adjust your routine to minimize the occurrence of certain triggers. For example, if your loved one becomes very agitated and feels abandoned when you devote your attention to making dinner, consider switching to quick, easy meals, perhaps those that can be prepared ahead of time and frozen.
If there is no apparent trigger for the behavior, keep in mind that shadowing is often caused by fear and insecurity. Address these feelings throughout the day by repeating simple reassurances such as “I love you,” “everything is OK,” or “you are safe.” If there is a song, scent, or object that comforts them when they are feeling agitated, use it to help calm them.
Structuring the day and providing a predictable routine can help prevent the fear and confusion that can result when a person is left unoccupied for long periods of time. When the person is engaged in an activity, even one as simple as folding towels, organizing cutlery, or arranging flowers, their mind isn’t free to wander and they are less likely to become agitated.
Another possible solution, especially when you just need a few minutes to yourself to take a shower or use the restroom, is to use an egg timer as a substitute for your presence. Set the timer, and reassure your loved one that you will be back by the time the bell rings. This gives the person something to focus on other than their fear, and a feeling of certainty that is tied to a physical object.
Take care of yourself
As with a small child who wants to keep his mother in sight at all times, you may feel guilty about leaving your loved one alone so you can have some personal space. While you would never want to cause your loved one distress, be mindful of your own emotional health. Is this behavior draining you, sapping the patience and compassion required to provide the level of care your loved one needs? If so, it is in neither of your best interest to for you to simply tough it out. Seek help from friends, professionals, and community organizations to supplement the care you’re providing, claim some free time for yourself each week. Our organization maintains lists of home health, personal care providers, and respite programs in Central Texas. Incorporating respite into your weekly routine could be great for you and for the person you care for.
For lists of home health, personal care providers, and respite programs, contact Alzheimer’s Texas at (512) 241-0420. For more caregiving tips and information about our services, visit us online at www.txalz.org.