My mom has advanced dementia and is now residing in a memory care facility. I don’t think she knows who I am anymore and visits have become very hard for me and my family. We don’t know what to say to her or how to engage her in a meaningful way. I often walk away from the visits and wonder if it even matters if we visit any longer. But, then I feel awful for feeling that way because she was always there for me. As the holidays approach, it makes it even more difficult as so many memories include my mom who is here physically but isn’t present is other ways. What can I do to make visits better or should I simply step back and let time take its course?
As people with dementia enter into the late moderate to advanced stages of dementia, there are not only significant losses of memory and language skills but also visual perceptual abilities making it more difficult to interpret what is being seen. People will spend more time sleeping throughout the day because it takes so much effort to be present during waking hours. However, the person still “is” and there are opportunities for continued connection right until the end of life.
While your mom may have a disease that has limited her brain and body, her spirit is alive and well. Now is a time to make connections that have deep rooted meaning and understanding and transcend the need for conversation. Most of us have practiced this art of “being” as we nurture young infants and children without words, comfort family and friends with a hug, a smile, or pat on the shoulder; or simply take in beautiful moments.
Your visits do matter but you will have to change the way in which you have long communicated. Learn from the staff the best time to visit your mom – when she is awake and not fatigued following meals, daily care, or activities. Your visits will also be shorter as your mom will fatigue more quickly. Thirty minutes to an hour may be enough. Don’t spend time asking your mom, “Do you know who I am.” Tell her; “Hi Mom, it’s Lisa.” Keep your conversations brief and upbeat and begin to infuse sensory experiences. Since the pleasure of food continues, bring in a favorite treat that is soft and sweet and can be chewed and swallowed easily. Since it’s the holidays, think about a favorite cookie or candy that she has long enjoyed. Provide your mom a gentle hand massage using scented lotion. Reminisce about favorite memories and even show her a couple of pictures as you tell her about the fun being had in those moments - that means you don’t ask her questions about the “who, what or where” of the photographs. Sing to her and she may just join along. The holidays are packed with many familiar songs. Try a couple of rounds of “Jingle Bells,” Silent Night,” or “You are My Sunshine” and you are likely to see a smile on her face or in her eyes!
Nurture your mom’s spirit. This can be done by revisiting familiar spiritual practices of saying well-rehearsed prayers or reading short passages of scriptures or poems. Ask a chaplain to give her communion if that has been a past practice. Provide tactile experiences through placing a well-worn Bible in her hands, rosary beads, or prayer shawl. When the weather permits, get her outside for brief moments of fresh air and sunlight. Finally, fill her with love and praise for all she has done for you. The beauty of your words, voice tone and facial expression will make complete sense to her spirit.
As you learn what works, share it with other family members or friends who wish to stay connected to your mom until the end. Remember, your visits matter because your mom matters. Your gift of presence as you connect with her spirit will be the best gift of all this holiday season