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A Caregiver’s Journey with PACE Your Life

by Terry Rogers,

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In the early years of their marriage, Mary Perkins saw her role in her marriage as a wife and partner, supporting her husband throughout their marriage. When he was diagnosed with mild cognitive impairment in 2019, she found herself also serving as his caregiver. Initially, the couple visited Penn Memory Center (PMC) for neurology consults as well as supportive programs and resources. In 2021, his diagnosis changed to mild dementia and in 2022, he was diagnosed with late onset Alzheimer’s as well as vascular dementia.

“Over the course of the past three years, he had to stop driving, is no longer able to safely stay at home by himself, has difficulty finding and forming words and has experienced hallucinations, delusions and paranoia, all of which make our lives anything but normal,” Perkins said. “Previously, he was the main cook for our family, but now he is my sous chef. He was the epitome of an outgoing and social person, everyone knew and recognized him. Now, he is quiet, speaks softly, searches for words and waits for others to speak.”

After a surgery in 2022, Perkins’ husband suffered post-operative delirium and dementia psychosis which was likely influenced by anesthesia.

“This condition wreaked havoc on our lives, creating tension and increased stress, fear and loss of dignity,” Perkins said. “There were calls to 911, multiple trips to the emergency room, the need for psychotropic medication and a three-month stay in an inpatient facility in another state. This totally changed our lives socially and financially.”

According to Perkins, the cost of an inpatient Assisted Living/Personal Care memory care unit costs between $10,000 and $12,000 per month. This required the couple to deplete most of their safety net savings. Even though her husband is now covered by long-term care Medicaid, the costs of his care were a burden.

“I participate in an Alzheimer Caregiver support group and one of the participants suggested PACE Your Life when I was unable to find services for my husband,” Perkins said. “I had spent weeks calling nursing centers and assisted living communities and was unable to find one that would accept my husband. I reached out to them, and they now support both my husband and me.”

PACE Your Life assists the Perkins’ with bathing, dressing, grooming, and other daily activities that are difficult for those with cognitive impairment. They also help with shopping, laundry, cleaning, grocery shopping, meal planning, and cooking. Perkins’ husband is in the Medicare Alternative Program through PACE Your Life and receives all his medical care through the service.

“He attends the PACE center three mornings a week and they provide transportation,” Perkins said. “This allows me time to myself, whether it is to catch up on my reading and writing, attending my support group or maybe just resting. It is all-inclusive, there is no cost to us, and the staff are caring. During all my searching, the PACE representative was the first person I interacted with who made me feel cared for.”

Perkins calls PACE Your Life “our safety net.”

“I always know I have back up. The staff are very supportive,” Perkins said. “The Medicaid Eligibility Specialist at PACE Your Life assisted me in applying for and receiving Long-Term Care Medicaid for my husband. Because the program is all-inclusive, all my husband’s medical and prescription costs are covered at no cost to us. This may sound too good to be true, but this program is the most helpful one for us. It keeps us together in our home.”

For more information on the PACE Your Life program, call 302-865-3565.