Because of my mother’s deepening Alzheimer’s, my father is now living with a stranger, a woman he does not know or understand. He is afraid to go to sleep, because she wanders around at night. She, who cannot remember what a can opener is, an avocado, or a shoe lace, has figured out how to unlock the apartment door, find the elevator, press the down button, get in, and wander out through the lobby. The guard on duty quickly retrieves her, but her unchecked mobility unnerves my father.
And last night, she urinated on the floor. My father called me at 10:30 p.m. in a panic.
“Why would she do that?” My father can barely speak; he is so distraught. “It’s so immodest, so unlike her. Is it because we moved? Do you think she’s trying to get back at me for moving us to Kansas City?”
“It’s the disease,” I say. “Do you want me to come and help you clean up?”
I realize my father has never changed a diaper, never dealt with this type of intimacy. Though he has valiantly accepted so many changes in my mother, this latest change screams at him, “She is ill. You cannot take care of her.”
This excerpt from my book Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey describes the situation we were in when my father and I started searching for a long-term care solution. In the past, my mother had often said, “I want you to kill me if I ever have to go into a nursing home. I want to die if I lose my mind.”
Those words echoed through my mind as my parents and I visited assisted living facilities. We made a checklist to help us select a place that was right for us.
Here were some of our priorities:
Care Team and Staff: Can they help us feel at home?
When possible, we took my mom with us to visit the facilities; we wanted to see how the staff interacted with her. We wanted to know:
- Did they walk slowly to accommodate her pace?
- Was there enough staff and were they engaged with the residents?
We talked to as many floor staff as possible to get a sense of how they interacted with the residents. We kept in mind that the staff was very busy and that many of the aides worked two jobs.
Activities: Are there opportunities for entertainment, mental stimulation, and social interactions?
We tried to visit in the afternoon when there might normally be activities. We asked to see the activities calendar. We also asked:
- Did staff get residents involved in activities and help those who needed assistance to stay engaged?
- A place where a family could have a private meeting or meal.
- Easy access to outdoors. One of our candidates had a wonderful courtyard where residents could gather or garden; they also had a bunny that lived there part-time.
Finding a Long-Term Care Home: The Caregiver’s Team
Eventually, my mother’s statement about how she’d rather die than live in a nursing home faded (almost) from my mind. We found her a good assisted living situation and later a good memory care unit. In each one, she had the support that she needed. And we had the support we needed: with the facility for providing Mom’s physical needs, we could focus on connecting with her in the ways most important to us.
About the Author:
Deborah Shouse is a writer, speaker, editor and creativity catalyst. This November, Central Recovery Press is publishing an updated edition of her book Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey. Originally, Deborah self-published and used the book as a catalyst to raise more than $80,000 for Alzheimer’s programs and research. She will continue donate a portion of her proceeds to Alzheimer’s.
Deborah and her partner Ron Zoglin have performed her writings for audiences in the United States, New Zealand, Nova Scotia, Puerto Rico, England, Ireland, Chile, Costa Rica, Italy, Turkey and the U.S. Virgin Islands.
To learn more about Deborah’s work, visit her blog Deborah Shouse Writes.
Or follow her on Twitter: @DeborahShouse