We had to be delicate and deceitful in making plans because Mom was against all of it. She alternated between being manic and afraid, to condescendingly narcissistic about her current situation. Dementia robs the brain of function slowly through the build up of plaques and tangles, dying neurons, and disrupted connections which cause the typical thought process to short circuit. This is a random, gradual process, not an on/off switch. Mom still had days where her brain
We moved to Tucson and learned that Arizona is one of the fastest growing states for Alzheimer’s and dementia related disease. Age is the biggest risk factor for dementia. Colleagues, neighbors, and family members are usually the first to notice something is off with their loved one. Educating people to pay attention to the small signs and to be proactive about pursuing a diagnosis is key. There is no known cause or cure, but early detection may enable some people to take advantage of current treatments available that can slow the progression of the disease. It is imperative that everyone put an end of life/aging plan in place, with or without dementia. People are living longer with chronic illness. Medicare does not pay for long-term care. Make legal, medical, and financial planning a priority. PCOA offers many resources in these categories, including information about support groups. You are not alone, tap into the network of reliable organizations such as PCOA, AARP, the GUIDE program from CMS (Medicare), and online caregiver networks including Daughterhood.org ◆ Nicole is an author, speaker, and advocate in dementia and eldercare planning. As a mother of five and part of the sandwich generation, Nicole became an expert through lived experience. Her book Diagnosis Dementia combines personal stories with practical advice to support people caring for parents. Learn more at njsmithbooks.com
with documented history to have her placed in a behavioral health facility, followed by a move into memory care. I was convinced that our experience was so outlandish and confounding that others might benefit from lessons learned through our epic escapades. I observed the landscape of eldercare resources to be vast and as equally overwhelming as dealing with a loved one with dementia. I cultivated and vetted information I found to be most helpful and began writing a book. I found the process of writing about our experience very cathartic and hope it will help others realize they are not alone in caregiving. Joining a support group is critical to survival. The shame, blame, and fear of dementia in society is slowly eroding. Dementia is everywhere.
was firing on all cylinders. She made sure to assert her authority and undo our efforts on many occasions. Two steps forward, one step back. The biggest hurdle when someone becomes a caregiver is not knowing what you don’t know. It is hard to know where to begin, who to call, or how to find help. We fumbled through and made limited progress until Mom disappeared one night and changed the already difficult course of proper planning to one of chaos and crisis. This is common. My previous espionage efforts to steal passwords, statements, documents, and mail from Mom’s office paid off at this point. We were able to locate her and get her admitted to the hospital through the ER. We knew enough of the terminology and were prepared
May & June 2026, Never Too Late | Page 5
Pima Council on Aging
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