My family’s long-term care story – and what it says about the challenges we all face | Ray E. Landis

May 2, 2021 6:30 am

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My 99-year-old Aunt Mary recently entered a skilled nursing facility in a New England state. She is a remarkable woman – a real-life Rosie the Riveter who retired from Raytheon in 1986. But hers is a story of what it is like to grow old in the United States today as well as a description of how our long-term care system is struggling to accommodate the varied needs of those needing its services.

My aunt is one of six siblings, three boys and three girls. My grandfather died in 1945, and two years later the family purchased a small home. The three boys came home from the war and two married and moved out. My mother, the youngest of the six, left when she married in 1955.

Over the years my grandmother passed away, then my uncles and one of my aunts died, leaving Mary and my mother as the remaining family members. Mary continued to live in the family home, extraordinarily independent as she reached her 90s. She was extremely careful and somewhat secretive with money, accumulating savings through her small pension and Social Security. Eventually she gave my mother (who is 11 years younger) power of attorney should she become incapacitated.

Mary’s niece, who lives about 45 minutes away, and a neighbor helped, but she lived happily on her own until a change happened three years ago when she tripped on a crack in the sidewalk and fell in her backyard, fracturing a hip. Amazingly, she recovered well physically after a hospitalization and a short stay in a rehab facility.

But she began to believe men were coming into her house and taking things. She refused to allow a visiting nurse to monitor her health. She slept in a chair instead of a bed because of the noises she heard. She repeatedly activated her emergency alert system and refused to answer the telephone, triggering a number of visits from an ambulance crew.

Then COVID happened. Her niece and neighbor continued to visit, but my mother, who lives in Pennsylvania, could not. In January of this year, my mother received a call – Mary had fallen in her living room and was found by her neighbor. She was transported to the hospital with bruises, but fortunately no severe injuries.

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After a short hospital stay, she was transferred to a skilled care facility. Her physical injuries soon healed, but physicians diagnosed her with dementia. They did not feel she could safety live alone, despite Mary asking each day when she would go home. Medicare coverage of her rehabilitation ended, and with no family members able to live with her, she became a resident of the skilled care facility.

The power of attorney granted to my mother revealed Mary had more financial resources than could be imagined in addition to the value of a home worth vastly more than the $9,000 the family paid for it in 1947. Now it would be time to use these assets for her care.

The non-profit skilled nursing facility where she now lives is not an elegant facility. There are no chandeliers, and the building has the look of a 1960s college dormitory. The staff is overworked and underpaid and struggles to keep up with the demands of the residents and families. Residents live two to a room with few amenities, but those who are mobile eat their meals in a dining hall and have recreational opportunities, in a socially distanced way.

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Keeping residents safe and comfortable and caring for their needs is a 24-hour-a-day proposition. Providing this care is expensive, but many of the 87 residents have exhausted their assets and rely on Medicaid to pay for care. Medicaid is a bare bones program and facilities believe it does not adequately compensate them for the costs of care. As a result, the cost for residents paying out-of-pocket for care is now $15,000 a month, or $180,000 a year.

My mother is now struggling to reconcile all of Mary’s financial information while trying to figure out when and how to sell a house and the 70 years of things inside in order to pay these costs. It is a monumental task – made even more difficult by the circumstances in which it is happening.

My mother visited her sister for the first time in well over a year recently. Mary looked at her and asked why she had not seen her for so long when she lived so close by (my mother moved to Pennsylvania 60 years ago) and then told her “Forget about me. You go off, get married, be happy and live your own life. My friend Rita (her neighbor) and I will be fine.”

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I tell this story not because it is extraordinary or unusual, but because it is representative of the struggles individuals and families must deal with as loved ones age. Our public discourse is filled with the trials and tribulations of the Royal Family and Tiger Woods, but it is the conversation about older relatives that families focus on every day.

There is no correct answer to how individuals work out the balance between their own needs and their responsibilities to older family members. But we need to do a better job of preparing families for the decisions that are coming. We need more public conversation about what it is like to grow old in our society and more knowledge about help available to families, as well as fewer restrictions and easier access to that help.

We are not going to make the physical and mental challenges of growing older easier. But by being willing to acknowledge them in a more public manner, we can bring greater value to those involved in caring for older people and help families recognize they can seek help and do not need to face these challenges in private and alone.

Opinion contributor Ray E. Landis writes about the issues important to older Pennsylvanians. His work appears biweekly on the Capital-Star’s Commentary Page. Readers may follow him on Twitter @RELandis.

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Ray Landis
Ray Landis

A former spokesman for the Pennsylvania AARP, Ray E. Landis writes about the issues that matter to older Pennsylvanians. His work appears biweekly on the Capital-Star's Commentary Page. Readers may follow him on Twitter @RELandis.