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Canada Daphne Bramham: Care and respect for those with dementia is needed more now than ever

05:51  30 june  2020
05:51  30 june  2020 Source:   vancouversun.com

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a close up of a man in glasses looking at the camera: This photo of Francisco Covelli was taken two years ago. Covelli, now 71, suffers from Alzheimer's. Since the COVID-related lockdown of long-term care homes and the suspension of his wife Cleo's twice-daily visits, he has lost 4.2 kilos and become increasingly agitated to the point that Fraser Health wants to transfer him to a different facility in White Rock, an hour away from Mission where Cleo lives. This photo of Francisco Covelli was taken two years ago. Covelli, now 71, suffers from Alzheimer's. Since the COVID-related lockdown of long-term care homes and the suspension of his wife Cleo's twice-daily visits, he has lost 4.2 kilos and become increasingly agitated to the point that Fraser Health wants to transfer him to a different facility in White Rock, an hour away from Mission where Cleo lives.

Francisco Covelli is 71 years old with Alzheimer’s and his health has rapidly declined since his long-term care home was locked down in mid-March due to the COVID-19 pandemic.

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He’s lost 4.2 kilos and become combative. Last week, his care team told his wife, Cleo, that they plan to have him committed to a mental health facility for seniors with complex mental health needs and addictions.

She is adamantly opposed. She believes that if she were allowed to resume her twice-daily visits, the transfer would not be necessary. The Covellis’ situation raises questions about how people with dementia were being cared for even before COVID and how they might be treated after.

Diagnosed nearly a decade ago, Francisco owned a hairstyling shop on Commercial Drive and led an active life. But the disease slowly took hold and in December 2018 Francisco moved into The Residence in Mission, a care home operated by Fraser Health.

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Initially, Cleo visited three times a day. After a year, she scaled it back to twice a day because of the toll it was taking on her. Cleo helped her husband with the most basic of things — communication. As his disease has progressed, Francisco has reverted to speaking his first language, Italian. But even in Italian, she said it’s often difficult to understand what he is saying.

Since he’s been at The Residence, she’d always been there at mealtimes. She showered him, cut his toenails and his hair, cajoled him into taking his medication when he refused it from care aides. She also took him for drives and, with frequent visits from their daughter and grandchildren, Francisco was doing OK.

“He had contact, love and attention,” Cleo told me. “Then the lockdown came.”

In mid-March the provincial medical health officer advised long-term care facilities to restrict entry to essential visits only.

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Cleo’s pleas to be deemed an essential visitor have been rejected by the care team.

For privacy reasons, Fraser Health refused to comment on the Covellis’ plight other than to say that the decision is up to the care team.

But spokesperson Dixon Tam said that because there are still active COVID outbreaks at long-term care homes, visits remain restricted to “one visitor at a time for residents/tenants who are actively dying,” although exceptions can be made by care teams.

The measures, Tam said, were not taken lightly and are necessary to protect residents, staff and families and “to maintain our care system capacity.”

He said Fraser Health recognizes the impact it’s having on individuals and their families, but staff are doing what they can to facilitate phone calls, Zoom and FaceTime connections.

But during the first week of the lockdown, Cleo said she was unable to get through on the telephone to find out how Francisco was doing, let alone talk to him. A few weeks later when staff helped them to FaceTime, Cleo said, “He was just crying, crying, crying and couldn’t understand why I wasn’t coming in.”

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The most I can say now is that it is very cold in San Francisco, and I am freezing. (Saroyan) 16. Give me your promise that this shall be done. In that small room he seemed even bigger than I remembered him. (Maugham) 18. Whatever I intend to do I'll do without advice from the outside.

Then, in mid-June, Cleo was allowed to visit on four consecutive days. She showered Francisco, gave him a haircut, trimmed his nails. Throughout, her husband was calm and happy.

But after four days, Cleo was told she couldn’t come back and that Francisco is now on a waiting list for a bed at Oceanside in White Rock, an hour’s drive from Mission.

It’s a 24-unit mental health facility for seniors with “a documented history of failure to be managed in secondary and primary mental health community services” including people with addictions.

Under B.C.’s Mental Health Act, neither Francisco or Cleo need to agree to the transfer. It can be done with a physician’s recommendation and, once Francisco is at Oceanside, its medical staff will make all decisions regarding his care.

“British Columbia has unusual mental health legislation. The law allows for involuntary committals to get around the lack of services,” said Krista James, national director of the Canadian Centre for Elder Law. “His wife is right to question whether he should be moved.”

James said Cleo could get a lawyer and demand access to her husband, arguing that as Francisco’s substitute decision-maker she needs to be able to see him and discuss the options with him before the transfer.

Alternatively, James said, “If she (Cleo) really feels her husband is   getting good enough care, she may want to have that conversation (with staff) about ‘How can I support you to keep him here. It worked before, so why not now?’ She’d probably be willing to go in daily and help with that care.”

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But that would mean declared an essential visitor. Reading from Dr. Bonnie Henry’s guidance letter that defines that as “visits considered paramount to resident care and well being, such as assistance with feeding or mobility,” James said it’s clear that Cleo should qualify especially since Francisco is no longer speaking English.

Familiarity and connectivity are key to people with dementia being able to make sense of the world around them, according to Barbara Lindsay of the B.C. Alzheimers Society. Research also indicates that aggression is a common outcome if they don’t feel safe, are in pain or have unmet needs.

That suggests that moving someone with dementia — especially one where they’re more likely to be medicated and restrained — should be a last resort after every other option has been exhausted.

Last July, Elspeth McAuley faced a similar situation at The Residence when her 77-year-old husband, Bill, who has Parkinson’s was going to be transferred to Oceanside. Elspeth refused and the care team relented and he’s still there. But like Francisco, Bill has lost weight and is much more confused since the lockdown.

At a Nanaimo dementia facility — Eden Gardens — three families have contacted me in the last month to suggest that the isolation caused by the visitor’s  ban has resulted in their loved ones losing weight, losing heart and falling. One broke her pelvis. Despite that, their pleas to be essential visitors have been rejected.

Why are chronically short-staffed, long-term care homes — both publicly and privately operated — so narrowly defining “essential visits” when residents are clearly suffering?

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James said they shouldn’t be.

“Long-term care homes aren’t emergency rooms, they’re people’s homes. We just can’t treat those places the same way or we are keeping people in jail.”

Beyond that, she and Lindsay both said people with dementia or their substitute decision-makers do have legal rights. Those are outlined in the Alzheimer Society’s Charter of Rights for people with dementia, which Lindsay describes as “an aspirational document” that promotes the idea that even with dementia, the people need to be at the centre of and the focus of every decision made about their care.

“I see my husband’s place of residence as a dementia jail,” Elspeth McAuley said. “So, does he, having said that he will probably spend the rest of his life looking out through the glass.”

In a caring society, it shouldn’t be too much to ask that the essential humanity of our most vulnerable is respected. But we’re light years away from that.

dbramham@postmedia.com

Twitter: @bramham_daphne

The Alzheimer Society of B.C.’s First Link Dementia Helpline for caregivers, people living with dementia, health care providers and anyone seeking advice or information about dementia. The English line (1-800-936-6033) is open Monday to Friday, 9 a.m. to 8 p.m. Information is also available in Punjabi (1-833-674-5003) and in Cantonese or Mandarin (1-833-674-5007), Monday to Friday from 9 a.m. to 4 p.m.

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