Communication Challenges During Late-Stage Alzheimer's
I am sharing this story with the hope that it will help and bring some comfort to all the families who have loved ones that are suffering with Alzheimer’s. This is our family’s experience of the ways we tried to communicate with my Mom during the later stages of her Alzheimer’s journey.
My mom's symptoms were getting worse
Mom had been suffering with Alzheimer’s for a number of years. She had been declining and her symptoms were getting worse every day right before our eyes. It was heartbreaking for our entire family to watch the heart of our family wither away as she reached the last stages of this horrible disease.
Mom had been confined to a wheelchair for a couple of years as she lost the ability to walk. It became impossible to move her to her wheelchair or for her to even sit up in one. Mom was now confined to the hospital bed we had set up in her bedroom. Mom now required around-the-clock assistance with daily personal care such as keeping clean, toileting and feeding. She was having difficulty swallowing, which added a potential choking hazard for mom. Mom was rapidly losing the ability to speak and we could see her becoming more and more confused every day.
My dad was always by her side
Most of the day mom would sit quietly, looking off into the distance and not focusing on anything. But once in a while her big, blue eyes would linger on one of our faces and seem to know that we were there with her. My dad would sit quietly by her side for hours at a time, holding her hand, talking very slowly and quietly to her. By softly touching her on her hand, arm or cheek, while talking very slowly and quietly and looking directly into her eyes, mom would seem to understand some of what we were saying to her.
To communicate with her, we would sit or bend close to her on the same level as her hospital bed. We would not hover and stand tall above her head, which would force her to have to look up to us. We would try to avoid any loud noises in her bedroom to avoid startling her. Mom did seem to enjoy listening to music, especially familiar Christmas music and oldies songs from back in her day. Music that was soothing, not with a very fast beat to possibly agitate her. Sometimes we would change the station to a talk radio show, so she would hear people softly talking in the background as she fell asleep.
Treating her with dignity
I always wanted to show mom respect, so as I was changing her diaper or washing her up I would slowly speak to her in a reassuring manner to let her know what I was doing. I would say something like this to her…”Ok mom, now I am going to wash your face with a warm wash cloth very gently. You don’t need to be afraid, it will feel good on your skin.” I think she needed to hear a calm and soothing voice.
Our loved ones may not know or understand what we are saying, but they will feel better and more comfortable hearing a familiar voice. We did not have any harsh lights on in her bedroom, especially at night to jar her awake and frighten her. I would turn on a small lamp near the foot of her bed to change her diaper at night. To feed mom, we talked very slowly and did not rush her. Sadly at the very end, mom forgot how to swallow and Hospice care would begin.
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