PROVINCETOWN — Jane Paradise and her husband, Frank DiGirolamo, have dinner out at restaurants three times a week — at a minimum. They go to bed at midnight, and DiGirolamo sleeps until the afternoon. The rest of the day is taken up by walks through Provincetown’s streets and along its shores.
VISITING THE SICK
Among all the challenges of the Covid-19 pandemic, perhaps the greatest is not being able to visit elderly loved ones. In some cases, Covid patients have died in health-care facilities without family members present.
“It has been one of the most difficult and heartbreaking consequences of the pandemic,” said Chris Hottle, director of the Provincetown Council on Aging.
But the issue of leaving loved ones at the front door of a facility goes far beyond end-of-life separation.
For people with cognitive impairment, for example, including a large population of dementia and Alzheimer’s disease patients, the no-visitor policy at hospitals means that patients lose their spokesperson at a time they need it most. There can be dire medical consequences.
In recent weeks, the number of hospitalized Covid-19 patients on Cape Cod has more than doubled. As of Dec. 13, Cape Cod and Falmouth hospitals reported 37 patients with Covid, eight of whom were in the I.C.U. Less than three weeks earlier, on Nov. 24, there were 15 cases in the two hospitals, and zero in the I.C.U.
For people living with dementia or Alzheimer’s, going to the hospital without a caregiver can be like sending someone to a place where they don’t speak the language, said Melanie Braverman, co-founder of the Alzheimer’s Family Support Center of Cape Cod.
Caregivers of dementia patients are not just visitors, said Alan Johnson, a Provincetown resident and an Alzheimer’s and dementia social worker with Cape Cod Healthcare. Without a caregiver, dementia patients are unable to explain their own medical history, how they feel, or their exact symptoms. Elderly patients often have many pre-existing conditions, making it hard for doctors to know their baseline, he said.
That is why, this spring, at the urging of patient advocates, Cape Cod Healthcare — which operates both Cape Cod Hospital in Hyannis and Falmouth Hospital — broadened its initial Covid-19 policy, which prohibited all visitors, to add special circumstances, including caregivers of patients with dementia or Alzheimer’s, Johnson said.
But now, as hospitals and other health care centers are locking down again, there is confusion about the shifting policies. Johnson said it’s critically important to advocate for your loved ones. Staff members of large medical complexes like nursing homes and hospitals are not always able to keep up with the rapidly changing rules.
Magic Word: ‘Lawyer’
Johnson runs a support group for dementia caregivers. One of his clients reported that she had recently been denied entrance into an emergency room in Brockton with her loved one. She demanded to talk to someone in charge, Johnson said. She was turned down by the first receptionist, but kept pushing, eventually dropping the word “lawyer,” and that made the difference, Johnson said. A higher-up was summoned and she made it in.
According to Cape Cod Healthcare’s printed policy, effective Nov. 30, visitors are prohibited at all of CCHC’s 17 facilities, including Cape Cod Hospital. But exceptions include cases when a caregiver is considered “of benefit to either the patient or the provider.” Under this policy, one caregiver is allowed to accompany a patient with cognitive impairment, memory impairment, or dementia.
Although the most recent policy includes some leeway for special cases, visits are not guaranteed. Clinical staff evaluate patient needs for accompaniment on a case-by-case basis, said CCHC spokesperson Christina Peaslee.
The Independent’s senior reporter, K.C. Myers of Wellfleet, experienced first-hand the confusion created by the policy when her mother, Cate, was admitted to the hospital two days before the Nov. 30 policy went into effect. Since Cate has dementia resulting from a stroke, Myers was concerned that, without a familiar voice and face in the room, her mother could get hospital-induced delirium — which had occurred in April when the hospital prohibited all visits.
Hospital-induced delirium is among the most common complications among older patients resulting from hospitalization, occurring at rates ranging from 26 to 94 percent. When it is not addressed, it can result in long-term health problems. People with dementia are more likely to develop delirium while hospitalized. Having a caregiver or family member close can help prevent it.
Before the ambulance arrived on Saturday, Nov. 28, Myers looked at the visitor policy on the CCHC website and called the hospital to make sure she could visit her mother. A nurse told her she would most likely get an exemption under the new policy. The following day, another nurse wouldn’t guarantee she could visit her mother, but told her to explain the situation to the shift supervisor.
On the day the policy went into effect, Myers spoke to the shift supervisor over the phone and was told that neither she nor another caregiver could visit her mother. The policy for accompaniment, she was told, was for patients coming into the hospital for procedures.
Eventually, Cape Cod Hospital staff made a special allowance and a caregiver was allowed to stay with Cate. The nurses were kind and supportive, said Myers, but she had to make multiple phone calls over the course of two hours to make it happen.
A Lack of Training
Johnson said it appears that Myers was a victim of the lack of hospital-wide training about dementia — something that every Massachusetts hospital is required to implement by 2023. According to the 2018 Act Relative to Alzheimer’s and Related Dementias in the Commonwealth, all hospitals are mandated to have an operational plan “for recognizing and managing individuals with dementia.”
“Imagine the number of encounters at Cape Cod Healthcare where people need lab work, or to use the E.R., or hip surgery,” said Johnson, “and every one of those departments is focused on hips or labs and they are not focused on dementia.”
Johnson said the hospital needs to do that training. And, in the meantime, people should know that he and a nurse run a program to help guide and support caregivers. The Cape Cod Healthcare Dementia & Alzheimer’s Caregiver Support Program offers group support session classes, telephone advice, referrals, respite care grants, and counseling sessions.