Words to inspire,
Resources to inform
By 2030, one in four Rhode Islanders will be the age of 65 or older.
- RI Office of Healthy Aging
In 2020, 24,000 Rhode Islanders over age 65 were living with some form of dementia.
- RI Dept of Health
In 2026, Rhode Island had 5,200 assisted living beds and 8.400 skilled nursing beds.
- RI Dept of Health
Inspiration for families of loved ones living with dementia
…also referred to as “brain change”
You are likely experiencing grief for the loss of your loved one as you once knew them. You are likely fearful of further changes to come, and deeply worried about what your loved one is experiencing. You may be saying to yourself, “They wouldn’t want to live like this.”
These thoughts and feelings are understandable and valid. Still, please take the following to heart…
“Dementia does not rob someone of their dignity. It’s our reaction to them that robs them of their dignity.” Teepa Snow, occupational therapist and creator of the Positive Approach to Care for dementia
“Alzheimer's is not about the past…. Alzheimer's is about the present and the struggle, the scrappy brawl, the fight to live with a disease.” Greg O’Brien, journalist and person living with dementia
“Remember, the dementia patient is not giving you a hard time. The dementia patient is having a hard time.” Anonymous
“I have Alzheimer's, but it doesn't have my spirit.” Anonymous
Judith’s Story: Healing Presence
Judith was lying flat in her bed when I arrived to her room. She held her eyes wide open, staring at the ceiling. She remained quite still. The staff said that she had not done well since that morning.
I turned off the light overhead to dim the space. Sitting at her side I greeted her and gently rested my hand on her arm under the thick blanket. I told Judith that I'd sing to her today. She didn’t stir at all, maintaining that stare with those bright eyes pointing straight up. So I began…
You Are My Sunshine…
It's a Wonderful World…
While I sang the second song her foot started to move a bit. And she shifted an arm slowly under the blankets.
Over the Rainbow…
During the third song Judith alternated moving her arms underneath the blanket, slowly running one at a time from her stomach to her chest. Left, right, left, right.
Before the fourth song I told her this was the last one and that I'd say goodbye after I was done.
Amazing Grace…
As I finished the song (“I once was lost, but now I’m found…”) she lifted an arm up and out from under the sheets. She briefly laid it on her brow, then extended it up into the air as if searching.
I took Judith’s hand. She turned her head a bit toward me and moved her mouth in an effort to speak. Although she couldn't form a word it appeared to me she knew clearly what she wished to express. I imagined what she was saying to me. Bending down toward her ear I said, “You’re OK, Judith.” I gently touched her forehead and stepped away.
The next morning while I walked toward a lunch appointment, I received a text informing me that Judith had died that morning. I was not surprised. I confess I felt relief for her and her family, but my tears still flowed.
I will remember Judith fondly. When we first started our visits she was already beyond the ability to hold a typical conversation, but I must say, we communicated just fine.