One of the most frustrating issues a dementia caregiver faces is the word “no”. It seems to be the go-to answer for those with Alzheimer’s; “Do you need to go to the bathroom?” No. “Are you hungry?” No. “Let’s get you a shower?” No. Even the most persistent caregiver can be worn down by the constant negative responses. So, how do you as a caregiver, get past this? The answer is relatively simple…don’t take no for an answer.
It is important when caring for someone with Alzheimer’s, or any other dementia, to keep in mind the nature of the disease. In most cases, it robs the individual of the ability to make competent decisions, or, at the very least, makes it very difficult for them to process information needed to make a decision. Out of frustration or ease, many will say “no” when asked a question, regardless of the content. They may have the urge to go to the bathroom, but they don’t know how to express themselves or may even forget where the bathroom is. Even if a caregiver notices signs or body language that indicates the person needs to use the bathroom they may get a “no” when they ask them. It is at times like these when the caregiver needs to become a guide. You know they need to use the bathroom, so don’t complicate the situation by asking them. Simply take their hand and say “Let’s go to the bathroom.” as you gently guide them. They may still say “No” or “I don’t want to.” You want to be mindful that you are not forcing them to do something they do not want to do. As their caregiver, you will know, or come to know, the difference.
This approach can be used for most daily activities and situations. Instead of asking the person with Alzheimer’s if they are hungry, present the prepared food to them and announce, “Our lunch is ready”. Again, you do not want to force them to eat if they are not hungry, but if you eat lunch at the same time every day, chances are they are hungry and will eat when presented. If you ask them if they are hungry, they may not understand what you are asking them and you will get the dreaded “no” response. “Guiding an Alzheimer’s patient can be wonderfully fulfilling. It will certainly lead to better communication, less stress, and can lead to cooperation between you and your loved. This can be a wonderful change.” says Bob DeMarco, Alzheimer’s caregiver and founder of the Alzheimer’s Reading Room.
When it comes to more serious situations, like scheduling a doctor’s appointment or starting new treatments, guiding them may not be enough. They may go beyond no and physically resist or become angry. David Troxel, author and co-creator of “The Best Friends Approach to Alzheimer’s Care” recommends “… that when you have your family member’s best interests at heart, it is sometimes easier to get forgiveness than permission. You may have to line up services that you need and start them, even without your family member’s initial consent.Once you get the ball rolling, the person with dementia often goes along.”
Hopefully, these suggestions will make life a little easier for both caregivers and those with dementia. Anything that can relieve anxieties and minimize stress is a positive step in any care giving journey. Most caregivers have a deeply personal relationship with the person they care for, even if they are not family. A bond forms and instincts develop. Using these instincts as your guide will allow you to guide them.