A wife who is a full-time caregiver and advocate for her 70-year-old husband, says rules must change to give essential family caregivers special guidelines so no-one with dementia, cognitive impairment, any brain disorders or mental illness is ever denied help under any circumstances, including COVID-19 restrictions.
Diane Demers' husband Louis has suffered from complex medical issues including vascular dementia for more than five years.
She wants to "sound an alarm bell" and share her story to ensure that people with dementia are not denied access to their caregiver when seeking medical help in hospitals.
Demers lives in North Bay and recently Louis' health has declined significantly.
At the recommendation of a community nurse from the LHIN, Diane took Louis to the emergency department at the North Bay Regional Health Centre (NBRHC) for assessment on June 1.
"Prior to this trip, we had been self-isolating in our home since March," she says. "Due to his medical situation, my husband was admitted overnight to the D3 medical unit for additional testing and observation.
"Despite being his primary caregiver, advocate, and substitute decision-maker, I was denied permission to be with Louis when he went to D3 due to COVID-19 visitor restrictions. Normally, I would go with him, set him up for the night, including providing personal care, explain what was happening and provide reassurance to reduce his stress and also remind him of the reason for the hospitalization.
"I would leave when he was asleep and return first thing in the morning. For all of his past hospitalizations, which have been many given his medical situation, myself or one of our immediate family members would provide that support."
"For this hospitalization, my husband, who is unable to use a cell phone, or the phone in his room because of the severity of his cognitive impairment, could not communicate with me and was therefore alone and isolated."
Diane says her husband was traumatized by the ordeal because of his dementia and she took him out of the hospital the next day.
"When I realized I couldn't get in there, I signed him out," she told BayToday. "I couldn't get hold of a doctor or anybody so I told the nurses 'get him ready I'll sign the paperwork cause I'm taking him home.'"
She realizes that COVID had put added pressure on the system, and the seriousness of the disease but feels strongly that family are not visitors - they are care partners and essential caregivers. Louis is now home, despite his condition.
"I know COVID is an extreme case. I know it's bad. I know there are procedures to take.
"I've taken care of him forever, for 50 years, so I know him. He's been in the hospital many, many times and he has a lot of issues. I can read his body language, I'll know what's wrong with him.
"Before I left the hospital, I was assured that the staff would keep in touch and update me on his condition if necessary. Later that evening his nurse called and I was made aware of a procedure done without any prior notification to myself or consent on Louis' behalf.
"Because we felt that Louis' psychological, physical and emotional needs could not be met under these (COVID-19) restrictions, we as a family made the decision to discharge him from the hospital, the next day, and to set up care at home. After he was home, it was clear that his experience at NBRHC had traumatized him. He asked me: 'Why did you leave me there?”' He said he was scared because he did not know how he would “get out of there”; and he reported that he was molested. We can only assume that this was his interpretation of a medical procedure.
"He felt abandoned."
Diane says policies during pandemics need to change.
"They allow a parent with a child, but people with dementia, their caregivers are just overlooked. 'Too bad. It doesn't matter. It's COVID-19, you can't come in."'
She argues that when someone with cognitive impairment who requires a substitute decision-maker and a voice to speak for them, the policy should recognize that these representatives are not 'visitors' but are an essential part of their care.
"I'm not stopping until that policy changes so that in future pandemics, like in the fall with another big outbreak, we have to be allowed as caregivers to help. It can't just be 'no you can't come in.' It's heartbreaking."
Diane also feels a lot of frustration at the way they've been treated.
"How can they do this? Don't they understand? He cannot speak for himself. Don't they have a heart?"
She feels the COVID-19 visitor restriction is an example of a violation of human rights for people with dementia.
"Currently, there are patients with dementia and other brain disorders in our Ontario hospitals who have been denied their essential caregivers and care partners since March. This cannot continue and should never happen under any circumstances."
Demers and her husband have self-isolated since March.
"I take it seriously that my husband is a human being and he needs me there to advocate for him. There's no if, and, or buts. I don't know how I'm going to do it but if he gets sick again I'm not calling an ambulance, I'm going to try every which way I can to avoid that part. I'll try to find a doctor that will come in, I don't know. Unless he has some medical issue I can't monitor at home, I'm not bringing him back there."
BayToday contacted the NBRHC for a response.
Manager of Communications Kim McElroy, in an email, stated that as hospitals across Ontario adapted to provide care during the pandemic, hospital management has had to make many changes to protect patients, staff, and physicians.
"Our move to restrict access to our facility was based on direction from Ontario’s Chief Medical Officer of Health on March 19 and protects our sickest and most vulnerable patients," she said.
"For privacy reasons, we are not able to comment on specifics for patients, however, we know this decision can be difficult for families and loved ones with a patient receiving care at our hospital. Family and loved ones of patients are an important part of our hospital community.
"This week the Chief Medical Officer of Health issued a memo recommending acute care settings begin planning for the resumption of visitors. On June 15 the Ontario Hospital Association, together with the Change Foundation and the Ontario Caregiver Organization, and in consultation with a number of member hospitals released guidance considerations to support hospitals as they prepare to make changes to their care partner presence policies.
"NBRHC is reviewing these considerations within the context of its regional and local circumstances to best determine the extent to which the presence of care partners can be expanded within the Health Centre and hope to be able to welcome some essential care partners late next week."
