The Imperfect Caregiver

Often the behavior of someone with dementia is so changeable and unpredictable it’s almost impossible to figure out what is going on, leaving the caregiver confused and frustrated. Why is your spouse confused with you and so alert when someone comes to visit? Why does your mother, who is usually calm and agreeable, suddenly become angry and aggressive? “Why do you do that?” you may ask.

Alzheimer’s and the other forms of dementia are devastating brain diseases. Connections affecting behavior and memory work intermittently in the mild to moderate stage resulting in good days where one might question they even have the disease to bad days when their world and yours seem to spin out of control with no warning.

Their brain is sending them messages as real to them as your thoughts are to you. The person with dementia is terrified. The caregiver is at her wits end. The situation can escalate and sometimes may even become dangerous. What just happened, you may wonder. Things were fine a moment ago.

Take a few deep breaths to calm yourself. People with dementia may not understand your words but they do sense your emotions. If you are tense their tension will rise creating a worsening situation for both of you.

Try to determine what their behavior is telling you. Behavior is communication. Body language can speak volumes when words fail. Here are four examples of common dementia behaviors and how your response can get you from frustration to connection:

1. One moment Mom is happily sharing breakfast with you and the next she is terrified of the stranger sitting across from her. No matter how hard you try, you cannot convince her who you are and that she lives with you now.
2. Mom not recognizing you tells you that her brain has taken her back in time. Ask her how old she is. If she is in her thirties and you are still a child, go there with her. Smile, tell her your name and ask her to tell you about her child. Share some of your memories from that time. You may end up having some precious moments with her.
3. Your father, who celebrated his retirement five years ago by playing golf as often as possible, is now demanding you give him the keys to his car so he can get to work on time. His job was important to him and was a way to show his love for his family. Tell him it’s the weekend or his day off. Ask him what he has planned for the following week and listen to his ideas. Let him know how much you appreciate all he does for his family.
4. Your loved one keeps trying to get out of the house insisting she wants to go home even though she is home and you moved in to take care of her. When someone with dementia wants to go home you may think she is referring to the last place she lived. However, it could be her childhood home or the first apartment she had as a newlywed. It could be that she doesn’t feel safe in the moment and needs the feeling of comfort that being home brings to everyone. Tell her that she will be home soon and ask her to tell you about her favorite room. You may be surprised at where she is. Wherever she thinks of as home, go there with her. If you have any pictures from that time or place show them to her and spend some time listening to her stories. You may learn some surprising things about her and her life before you came along.
5. Every evening like clockwork, your husband begins to pace the floor and mumble incoherently, becoming more and more upset as he tries to make you understand what he’s trying to say.Trying to understand someone whose words are incomprehensible is extremely hard. You would respond if only you knew what he was trying to tell you. The harder you both try to communicate the more frustrated you both become. You won’t suddenly become fluent in his language. In this case your words are not as important as your tone and body language. If he is agitated you need to create distance between you and speak quietly, assuring him you understand. You may not, but that’s okay. The feeling of being understood is what’s important here. Smile and nod in agreement as he begins to relax. If he sits, you sit. Mirroring his movements is communicating in a way he can see. In time you may even begin to understand one another better.

There is never an easy answer, or one that works every time for everyone. However, going into their world works better than trying to get them to understand ours.

Bobbi Carducci was a caregiver for her father-in-law with dementia for seven years. She is a caregiver support group leader, blogger, author of the book, Confessions of an Imperfect Caregiver, Caregiver You Are Not Alone, and national speaker on caregiver issues. www.bobbicarducci.com www.theimperfectcaregiver.com Twitter:@BobbiCarducci2  Facebook: https://bit.ly/2FXw3JP