A Caregiver’s Journey

By Mary Perkins

This is a powerful story from the perspective of a caregiver supporting her husband with Dementia.

What and who is a caregiver?

Caregiving involves helping another person with daily activities and tasks. Most caregivers are family members. Caregivers may often assist with:

Personal care: Bathing, dressing, grooming, toileting, etc.

Household tasks: Shopping, laundry, and cleaning. 

Food preparation: Grocery shopping, meal planning and cooking.

Health care: Coordinating and transportation to medical appointments and medication management. 

(National Institute on Aging)

I am the caregiver. My husband is 82 and has been experiencing cognitive and memory issues for approximately eight years. He was first diagnosed with mild cognitive impairment in 2019 at the Penn Memory Center. We continued to use the PMC for neurology consults and for their supportive resources and programs. His neurologist changed his diagnosis to mild dementia in 2021 and defined it as late onset Alzheimer’s and vascular dementia in 2022.

In the early years I saw myself as a wife and partner, a support, the person who assisted him with the things that were challenging. Now I am his caregiver.

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

After surgery in late 2022, he experienced post-operative delirium and dementia psychosis which was probably influenced by the anesthesia he received during surgery. This condition wreaked havoc in our lives. It created tension and increased stress, fear, loss of dignity. 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. An inpatient assisted living/personal care memory care unit costs approximately $10,000 – $12,000 per month. To pay for the inpatient stay we had to deplete much of our safety net savings. He is now covered by Long-Term Care Medicaid and is a participant of PACE Your LIFE at the Milford Wellness Village in Delaware. This Medicare Alternative program is preserving our lives.

PACE Your LIFE supports my husband and me. He receives all his medical care through PACE and PACE providers. He attends the day program at the PACE center three mornings a week and they provide transportation. This allows me time to myself – whether it be catching up on my reading and writing, attending my support group or maybe just resting, PACE Your LIFE is our safety net. I always know that I have back up. The staff are supportive. The Medicaid Eligibility Specialist at PACE Your LIFE assisted me in applying for and receiving Long-Term Care Medicaid for my husband. Because the PACE 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.

Service area: 19933, 19934, 19941, 19943, 19946, 19950, 19952, 19954, 19958, 19960, 19962, 19963, 19968, 19979.

To learn more

visit our website www.PACEYOURLIFEMWV.COM

follow us on facebook @paceyourlifemwv

or call 302-865-3565