“For long-term care, I would have to rely on government assistance to fill in the gaps,” he said.
The Scherrers expect at some point to sell their four-bedroom house. A smaller place would be easier to manage and free up cash for long-term care. Though Mrs. Scherrer has checked out assisted living facilities, she said members of her family had promised to care for her at home for as long as possible.
Keeping loneliness at bay. People with dementia stress the importance of developing social connections. Mr. Kelley, who also participates in Dementia Mentors’ online memory cafes, said speaking with others who still engage in hobbies, sports and other activities “supports you to do something with your life rather than going home with the diagnosis and rotting away.”
For those who prefer to meet in person, many chapters of the Alzheimer’s Association offer early-stage support groups where individuals and caregivers can socialize.
Get-togethers also take place at hundreds of memory cafes. In 2011, Lori La Bey, whose mother had Alzheimer’s disease, started one in Roseville, Minn. People with early memory loss and their caregivers meet twice a month at a coffeehouse.
Participants talk about everyday matters like their travels and grandchildren, as well as strategies to manage symptoms, said Ms. La Bey, the founder of Alzheimer’s Speaks, an advocacy group.
“When they meet other people going through this, they don’t feel so isolated and alone,” she said.
Though Mrs. Scherrer sometimes forgets how to perform what used to be routine tasks like cooking, she generally keeps busy with her advocacy and gardening. Her to-do list includes scuba diving in South America and an R.V. trip with relatives to New England.
And she feels confident that her financial and legal plans, along with a supportive family, will keep her safe as symptoms worsen. Until then, Mrs. Scherrer said, “I still have so much to do.”