One of the biggest issues in caring for someone with dementia is knowing when to tell them about a change that is coming. Unfortunately many people with Dementia struggle with anxiety because their world is no longer the safe predictable place it used to be – at least not to them because they cannot remember the things that to us are “normal” and predictable.
I have told families not to let their loved one know about a change too far in advance for this very reason. There was a woman that lived in regular personal care in the CCRC that I worked at who needed to transition to the Secure Dementia Unit for her own safety. Staff had encouraged her son to wait until the day of the move to tell her but not fully understanding that she could not comprehend that in the same way he could he told her weeks in advance. For this dear lady those weeks were filled with sleepless nights, packing things up and worrying about the move. All she could remember was that she was moving, she didn’t know when because time no longer meant anything to her so everything was immediate. This is what triggered the frenzied flurry of activity. It was so bad that one of the staff actually found her up on a chair taking down the drapes! They weren’t even hers, they belonged to the facility but she didn’t know that. Fortunately she made the move without falling off the chair and breaking her hip first!
Transitions are hard for all of us but when you no longer have the capacity to understand time which is a very abstract concept and you no longer have the ability to organize your thoughts, or your day, knowledge of change serves only to create anxiety. Even though it sounds cruel to not tell someone of a change it is one of those “cruel to be kind” moments.
Another concept with change is that regardless of what the change is the person with dementia often looks to the person they trust the most, their caregiver, to know how to respond. This puts the burden of success or failure on the person who is already the most stressed to begin with in this situation, you. Persons with dementia are always reading your body language, facial expressions and the tone of your voice. If you come across positive and hopeful it is better than having them read your anxiety from irritated answers and short-tempered responses.
Transitions are also a time to ask for help. The day we moved my mother in law from her apartment into the Personal Care Facility we chose not to tell her. My sister-in-law was prepared ahead of time to take her shopping, a special treat and take her out for lunch. While we worked on moving her things and making her new room homey for her she was enjoying a lovely day out. When we were finished they arrived and we ushered her into her new place and she was delighted. She was overwhelmed that we went to all the trouble of setting things up for her. She was happy for her day out and was thrilled with her purchases. The entire experience worked to make the transition positive
A word of caution – not everyone is the same and you need to adjust the transition experience to accommodate the needs of the person. But it is important to remember that telling them too far in advance can serve to agitate them and everyone involved.
“You cannot control what happens to you, but you can control your attitude
toward what happens to you, and in that, you will be mastering change rather
than allowing it to master you.”
― Brian Tracy