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Carol Bradley Bursack, Published March 13 2011

Bursack: Let silent ones know you care

Dear Carol: My mom is in the last stages of Alzheimer’s disease and is very uncommunicative. I’m not sure how much she understands or how to talk to her, or even if I should talk to her when she can’t answer. I feel she must know something, but she’s become very passive. How do I show her I care? – Rachel

Dear Rachel: I understand your concern. My dad was often uncommunicative since his dementia, though a result of failed brain surgery rather than Alzheimer’s, rendered him sleepy and “out of it,” much of the time – particularly in his later years. My mother spent the last weeks of her life in a similar state.

I wish I knew then as much as I’ve learned since my parents’ deaths. My sister, Beth, and I, however, instinctively gave our parents as much attention as we could, and I think we did quite well. We felt that they needed our attention even when they couldn’t respond, and the research I’ve come across seems to back up that idea.

Whether someone has dementia, an illness that requires sedating, or some other illness that leads to an uncommunicative state, they still need to know they are loved. Try holding your mother’s hand as you talk to her. She may welcome a hand or foot massage with lotion or softly scented oils; however, be aware of her response. Some people find touch soothing, while others will show signs of distress, so adjust your touch accordingly.

Playing CDs of a person’s favorite music, or singing softly if that is something you both have enjoyed, can be nice. I also believe that talking about shared interests, even though this could be a one-way conversation, can have value. When my grandmother was dying, my mother spent time sitting with her while Mom did crossword puzzles. As she did the puzzles, she talked to Grandma. Quite likely, the sound of Mom’s voice was comforting.

As Beth and I sat by Mom during her last days, we reminisced over shared childhood memories. We also chatted about my mother’s now-deceased siblings, as Beth and I remembered them. We looked through old photo albums to jog our memories. Mom seemed to respond at times with eye movement, as though she was aware of our presence.

As you indicated in your note, Rachel, your mom likely knows you are there. Your presence is more important than what you do or don’t do. The fact that you are with her as much as you can be is what matters.

Carol Bradley Bursack is the author of a support book on caregiving and runs a website supporting caregivers at www.mindingourelders.com. She can be reached at carol@mindingourelders.com.