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Susan’s Story: Why We Need Aging Life Care Specialists

Susan stretched on the recliner in the hospital room the best she could next to her mother’s bed. It had only been 36 hours since she brought her mother in to the emergency room, but it felt more like a week. Her mother had lived alone for the past year since her father passed. She had been having short-term memory problems but had done pretty well as long as Susan came by the house a couple times per week, except for this week. This week when she had visited, she’d found her mother sitting in her favorite chair in the same clothes she had on the day before, and she looked dazed and drowsy.

“Mom, are you ok?”

Her mom slowly looked up. “Who are you?”

“It’s me, your daughter; it’s Susan” was her choked response.

Her mother just said “oh” and went back to staring off into the distance. With some coaxing and the help of a neighbor, Susan was able to get her mom into the car and to the emergency room.

After hours in the ER, the doctors concluded that she was dehydrated and had a urinary tract infection. They want to keep her overnight for IV fluids. Her mother had been very still for the first 24 hours, but now after getting a few doses of medicine and some IV fluids, she was full of energy and very anxious about where she was, what was going on, and when could she go home.

Just as Susan almost had dozed off to sleep, the nurse entered the room and announced that her mother was being discharged tomorrow and that the doctor didn’t feel it was safe for her to return home alone. Susan already knew she wouldn’t be able to leave her at home alone, but the reality of it hadn’t hit her until that moment.

A year and a half ago, her father had been discharged from the hospital, too, after having a stroke. After he was discharged from rehab, he was still unable to take care of himself, and her mother was too frail to be of much help, so Susan had become his caregiver.

Susan had taken a medical leave from her job and spent every day at their home. Her husband had been supportive at first, but after a while the stress put a huge strain on their relationship. Two weeks before her father passed away, her husband had filed for divorce and moved out of their home. Susan knew there was no way she would be able to get a medical leave from her new job since she had only been there a short time and couldn’t financially afford the time off.

“Susan,” said the nurse, “Are you going to be able to take your mother home with you at discharge?”

The tears started flowing as she whispered, “No...I can’t.”

“I will ask the social worker to come talk to you about some options,” said the nurse.

This scenario is all too common, and with the aging society, it’s only projected to get worse. Whether caregivers are looking for quality services or searching for help caring for a loved one within the home, many are left at a loss about what steps to take.

Recently published in Market Watch’s website in an article called “Is it Worth Paying an Expert to Help You Navigate the Health-Care System?” Joseph F. Coughlin notes, “Old age and chronic illness turn that period of vulnerability into a near-constant state of affairs. Often, older adults and their families can do but nothing but hope that they will be treated by the health-care system with their best interests in mind. Sometimes they won’t be — not because doctors and nurses and therapists and administrative staff aren’t doing the best work they possibly can to help patients, but because a hospital is a massive institution with an endless stream of work flowing through it, not just a place of healing, but an ever-whirring bureaucratic machine.” (www.marketwatch.com, August 12, 2016)

The expanding and ever more complex venture into the healthcare, legal, financial, and home health care overwhelms most of us, who may find ourselves searching last minute for care following a discharge from the hospital or rehab setting. Help navigating the maze of healthcare is more needed than ever.

The social worker at the hospital didn’t have a miracle solution for Susan, but she did refer her to an Aging Life Care Specialist. An Aging Life Care Specialist, also known as a geriatric care manager, is a health and human services professional who acts as a guide and advocate for families who are caring for older relatives or disabled adults. Examples of fields in which the Aging Life Care Specialist has education and experience related to aging life care management include but are not limited to: nursing, gerontology, social work and psychology, with a specialized focus on issues related to aging and elder care.

Shortly after contacting the provider, Susan and her mother were paired with Ginger, an Aging Life Care Specialist and President of Staying Healthy at Home by Diversified Nurse Consultants.

Susan’s predicament was very similar to many that Ginger sees. “Often a family member will turn to us in a time of crisis,” she said. “When they are in crisis, the first intervention is to come up with an initial plan to mediate that crisis so that a long term plan can be put in place.”

Ginger helped Susan get her mother home from the hospital and arranged around-the-clock care from a certified home care agency. “We knew that her mother would not be able to afford the cost of around the clock care indefinitely, so our next step was to add an Elder Law Attorney to our team to assist us in transferring the home out of her mother’s name into a trust that would be able to fund her first two years in a memory care facility,” Ginger explained.

Knowing that after the funds ran out for Susan’s mother, she would need to be able to access Medicaid in order to receive care, Ginger placed her in a facility that accepted Medicaid payments as well so that when she became eligible, her mother would not need to move to a new living situation, which can be very traumatic for adults with dementia.

Ginger loves her work as an Aging Life Care Specialist because it allows her to work toward the holistic well-being of her clients. At the same time, she is able to help families make informed decisions about their loved one’s care. With the staggeringly high costs involved in making such choices involving healthcare, the difference between an informed and a clueless decision can be thousands of dollars, not to speak of the well-being of the care recipient.

Ginger encourages those considering working with an Aging Life Care Specialist to get more information. The Aging Life Care Association is a national association that provides useful, relevant information and links to professional members who have been screened to meet criteria set forth by the association.

This article has been modified. The original was published in the Oldham County Record in 2016.
Author: Ginger Jones, RN, CCM, CNLCP. Ginger is a Professional Nurse Consultant specializing in care navigation and life care planning. In 2011, she Co-founded Diversified Nurse Consultants, LLC. Her passion for healthcare advocacy has been fueled not only by her experiences during her professional career but also by her role as a caregiver for her own family members during times of catastrophic injury.