Movement to gain access to loved ones in long-term care

Movement to gain access loved ones in long term care

PITTSBURGH — Frustrated family members are going to great lengths to try and see loved ones in long term care—especially as growing evidence shows the harm of isolation. With the COVID lockdown now in its eighth month, a growing movement is trying to strike a balance between safety and a resident’s right for emotional support.

Daughter’s fight to see her mom

The last time Michalina Pendzich saw her mom, she was suited up in full PPE from head to toe—mask, face shield, gown, and gloves.

Content Continues Below

“I don’t think she recognizes me behind all that,” Michalina said, shaking her head.

It was the culmination of a months-long battle to gain access to her mom in person, at an assisted living facility in Pittsburgh, which Michalina preferred not to name.

“I feel so helpless. I mean it’s out of control. Mom is declining, and I literally cannot go and help.”

Dementia took its toll

94-year old Wanda Pendzich lived a good life. Born in Poland, she came to Pittsburgh after World War II, had a big family with six kids, loved to garden, and was always active—until dementia took its toll, forcing her into assisted living.

“She moved into a new facility on March 4th and on March 11th, she was locked down,”Michalina said. “We basically have not seen her since. It is extremely hard.”

Speaking in Polish through a window, family members would visit-- saying simple phrases and waving from afar. It helped to keep them connected, but with Wanda’s dementia getting worse and communicating getting more difficult-- Michalina made it her mission to see her mom in-person again.

“Time is of the essence. My mom is 94. We don’t know how long she’s going to be here. She could have another decline and be gone,” Michalina said.

Impact of Isolation

As the months of lockdown stretch on, many families and long-term care advocates are raising serious concerns about the isolation caused by keeping loved ones out.

“We’re getting into a situation where this is really a debate as to ‘What is the greater good?’ and ‘What is doing more harm?’,” said Pennsylvania Long-Term Care Ombudsman Kim Shetler.

Shetler has been a care advocate for 30-years and says the impact of isolation is having devastating effects.

“We see people becoming more and more withdrawn, not participating, not interacting,” she said. “And depression is just the psycho-social thing that we typically see; people’s actual physical conditions are also declining.”

Residents Rights

A call for more balance has grown into a movement for resident rights.

“We should be concerned about safety, but where is also the concern for the emotional and mental well-being of these humans, because they are human beings!” Michalina said, choking up.

The Pennsylvania Long-Term Care Ombudsman program launched a weekly Virtual Family Council meeting on Zoom this summer. Families from all over the state come together to share their concerns with the ombudsmen and other public officials.

“Families are not the enemy,” Michalina said during a recent Virtual Family Council Zoom meeting. “The long-term care industry has too much discretion on how they put limitations on visitors”

By September, the state and federal government issued new guidance telling facilities they are expected to work with residents and families to provide visits, and not just for end-of-life.

“Ultimately, residents have the right to visitors,” Shetler said. “It’s not optional. They need to be developing a plan for how people can become reconnected.”

Essential Caregiver Status

One option is for a family member or friend to get “essential care-giver” status-- which allows them to visit and provide care to a loved one, even if the facility is locked down; but only if the staff agrees that the resident’s condition is declining.

Michalina pursued essential care-giver status, but she says the facility didn’t make it easy. She had to push all the way to the corporate level and negotiate terms to see her mom.

“It’s hard. It’s stressful that I have to push this hard to get access to my mom,” she said.

Finally, in October she was allowed to see her mom twice a week, but had to adhere to even stricter rules than the staff. She had to be tested for COVID-19 every week, per state rules, even though employees only had to get tested every four weeks.

“It makes no sense!” she said in frustration.

Now, with COVID cases surging again, a staff member at her mom’s facility has tested positive and Michalina was locked out again.

“These are family members—my mother, for crying out loud. What more important relationship is there than with our mother? And she’s basically locked away. Please do everything you can to give us access,” Michalina said, almost in tears—begging the facility to work with families on visitation.

Where to get help

If you’re having similar problems getting access to your loved one, the long-term care ombudsman program might be able to help. They have successfully aided families in negotiating visitation to their loved ones through-out the COVID crisis.

Click here, for more information about Pennsylvania’s Long-Term Care Ombudsman program and the Virtual Family Council, or you can contact the Ombudsman office at 717-783-8975 or LTC-ombudsman@pa.gov.

Pa. Department of Health files sanctions against 3 nursing homes related to COVID-19