Caregivers, you know how it is right? As your loved one’s dementia progresses, it becomes increasingly more difficult to communicate with them. It’s downright painful. You are probably dealing with the conversations going in circles like a merry go round, and it makes you crazy. It's not just me. My mom would also get frustrated with herself. My mom was a well-educated woman. She had two Master's degrees and was always willing to teach someone when asked. She was always about female empowerment. Now because of the Dementia, she would struggle with finding the words that she would want to say. I could tell that it bothered her by her mannerisms, so I would say to her "Mom it's okay let's get something to snack on, and watch a movie." Later on, as the disease progressed, she would refrain from speaking as often. This hurt me so much because my mom was my best friend, and I could always run to her for guidance and a great story, and we would spend hours on the phone chatting it up, and in person laughing and talking. Dementia took that part of our bond away.
As caregivers at least, in my opinion, you have to educate yourself on the disease so you would learn ways to understand cues in which your loved one would display when they try to communicate. It tested my patience, and I had to be more understanding of her weakening cognitive skills. I never thought of myself as a patient person, but this was my mom, so there would be no question. I was her health care advocate in addition to being her daughter, and I was going to do what was necessary to make her feel supported. She was a nurse, and she knew what was happening to her, and I can't imagine how terrifying this was for her. I made a plan for myself before starting a conversation with her. I would make sure that I’m calm while having a topic to talk about maybe clothes as my mom loved to shop. She was the best dress person in town. I got all compliments on my outfits growing up because she got me all put together lol. I would just sit with her in a quiet place like the den in her house turn off the TV and radio so there would be no distractions.
I would speak more slowly than usual making sure that she could hear my voice clearly while ensuring that I didn’t over complicate the conversation. Short sentences like "Do you like that dress?" "Are you warm enough?". When someone else was around, I would include her in the discussion. I hated it when I went to her primary care physician, and she would ask "Does she eat?" " Does she get exercise?" I hated feeling like she was talking like she wasn't even there. It was so annoying. I mean she right here you can ask her. I just didn't want her to feel isolated and not important. Sometimes we would start off talking about clothes, and she would start talking about something entirely unrelated like "Did you see Mom?" she was just here. She often talked about her mom being in the room. I would say she had to go home. I never say that she was in heaven. Sometimes a little white lie doesn’t hurt. You need to be flexible remember it’s your loved one’s world don’t correct them go with the flow.
We didn’t talk all the time. I found that nonverbal communication by just holding her hand, and rubbing her back to make her feel safe. I would often play her favorite songs, and I would sing along with the music when not having a conversation, and she would smile and shake her head and sway to the tunes. Playing the music would put her in a good mood. I have read and learned how music is very beneficial for someone with dementia and all its forms.
When someone you love has dementia, communication moving forward can be challenging and frustrating. At times my mom would be agitated and not want to talk to me at all. Although this would be hurtful for me, I had to be prepared for that because dementia causes mood swings in your loved one's personality and behavior at times. You have to suck it up this is your new reality as hard as it is, just be present in your loved one's truth.
Some tips I would like to share with you. Continue to be present in their reality, be comforting to make them feel safe, and also be patient and kind. Always encourage them to communicate in their own way. Put yourself in their position; you would want someone to support you and be your advocate right? There will be highs and lows, and all caregivers journeys are different. Enjoy all the highs because you never know what the next day will bring.
Do you have any tips that you used to communicate with your loved one? Share them in the comment section below.
Artwork is by Carole Brecht www.tangledartboutique.com