At age 103, Margaret Downey’s lifeline is the daily visits of relatives, such as granddaughter Mary-Alex Willer. Stringent visitation rules introduced to contain the spread of COVID-19 in seniors residences now means zero visitors to her Winnipeg nursing home and zero contact with family. On cue, Margaret has become more confused due to lack of stimulation and familiar faces.
“It’s heartbreaking to think about her being by herself and not happy,” says Willer.
Hospitals and seniors residences across the country have instituted policies to ban visitors as a measure to control the COVID-19 pandemic. Limiting the potential for coronavirus to be brought into these settings by visitors is a strategy to minimize risk for patients, who are frail and vulnerable; and for staff, who must remain as healthy as possible in order to continue working. However, restricted visitor policies have resulted in patients feeling abandoned and family members feeling helpless, says Miriam Mottiar, a palliative care physician at The Ottawa Hospital.
“The patients don’t have their usual advocates anymore … so they’re worried and they’re scared. They don’t know what’s happening. They don’t know why they can’t have their usual people around them,” Mottiar says.
Mottiar says family reaction differs widely. Some are very understanding, and don’t want to come in because they are worried about being exposed or exposing their loved ones to coronavirus while at the hospital. Others are “very, very distressed about it,” worried that something sudden might happen and that they will not get in to see their loved ones in time. And some families “really advocate to be able to see a family member who is not imminently dying.”
Downey has lived in the nursing home for almost two years. Prior to that, she was a feisty, independent woman living in her own apartment until she broke her hip and needed more care. She was slowly getting used to living in the nursing home. It was the constant contact with her family – four children, 16 grandchildren, 30 great-grandchildren — that made things tolerable for her. She enjoyed going on outings and to the movies. And she loved the fresh-cut flowers that her family always made sure to bring. But all of that has changed now.
“I really notice that she’s slipping a bit,” says Marnie Puchniak, Downey’s daughter. “She needs to see somebody’s face.”
Puchniak worries her mother is not getting as much help as she might need because her personal attendant, hired by the family to visit up to five times per week, is also not able to visit.
“It really disrupts the routine of her life.”
To compensate for the visitor restrictions, the “children have been inundating her with cards and letters. They’re doing art projects and things…. It gives the kids something to do and hopefully it brightens her day,” says Puchniak. The family has been phoning Margaret frequently but finds that it is not the same as seeing her in person.
“It is quite stressful. Worrying about her, worrying about her isolation, also worrying about her getting sick and being all alone. You know, that’s not nice to think about.”
At the Ottawa Hospital, Mottiar says she and her team are able to permit visits between her patients and their families on compassionate grounds because the hospital has made an exception to the visitor restrictions for patients receiving end-of-life care. However, only patients who are imminently dying – who are in their final hours or days of life – are allowed visitors. “I feel this kind of load to accurately predict what’s going to happen and we’re not that good at [always being able to predict how long someone has left to live.]”
Mottiar says that staff is finding it difficult because the team relies on families to provide information and to help them understand patients, especially those who cannot communicate for themselves. As well, the one-on-one attention that families provide in helping patients to eat or sitting with patients who might be confused or agitated is no longer permitted due to visitor restrictions. The staff that do see patients must wear masks, which can be disorienting.
“As a human being, it breaks your heart. Because normally, we encourage families to be at the bedside as much as they want, for 24 hours a day,” says Mottiar.
Some families are even opting to take their loved ones home and have marshalled family resources in order to do so, figuring that it is the best option under the circumstances, albeit stressful.
In the meantime, social workers and recreation therapists are working hard to facilitate virtual visits between patients and families, using available technology such as FaceTime and Skype.
“On the one hand, we understand the need to socially distance and restrict visitors, from an infection control perspective. On the other hand, it’s very distressing to watch our patients, who are sick and dying, be distressed because their families are not there. So we feel for them on a very, very human level,” Mottiar says.
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My mother, 94, who has dementia ,resided on the Assisted Living floor of a retirement home. She needs assistance in most daily activities. The day they locked the place down, I was told that my mother would be confined to her room for a considerably long time.. months … and that the recreation activities would be ceasing. I watched the situation for 2 weeks . My mother and the others in Assisted Care were served their meals on trays in their rooms. No one was allowed to leave their room, no visitors were allowed. My mom sat in her armchair alone for 15 hours a day and was taken to her bed for the remaining 9 hours . I took her out of the home after 2,weeks of this prison type treatment. I knew that even if she didn’t contract Covid and die, she would die from living a totally empty life all alone. It has been very challenging to care for my mother, but I would make the same decision again. If Covid came to the Home, I realized that my mother would die an agonizing death alone in her room. I could not live with myself if that happened. One wonders why PSWs and a host of other workers can come and go but family cannot? A long time Star columnist recently floated the term “ quasi-euthanasia”. Is that what’s going on? We are told that the rationalization for Seniors’ isolation is to protect them from Covid . But this doesn’t make sense as they are only being isolated from their family members. Workers come and go and are out and about in the community and returning daily to their own homes. Who is watching over them and their family members to ascertain their exposure? Taking staff temperatures we have learned is not a viable way to predict the disease. That is the method the Home relies on to determine infection. Are family being prevented from witnessing (and potentially reporting) the tragic conditions our mothers and fathers and other family seniors are experiencing, including their deaths in “solitary confinement “? How on earth can this be happening ?
I worry that my husband who has dementia will decline even more with no personal contact. I was visiting daily & walking with him outside pre-covid…playing cards with him & mentally stimulating him however i could. With these long restrictions i worry that there will be no cognitive recognition or ability by the time we are allowed to physically connect. I worry that his mobility will have declined to wheelchair status without daily exercise. i have 1 window visit per week. i understand all the reasoning – I understand the stress of staff. I am unable to take him home for a variety of reasons – but this is very upsetting for me & confusing for him. Is it so difficult for family to be allowed in with all the proper precautions? A few weeks maybe – but months? by the time this covid restriction is over I fear that neither my husband or i will know each other.
Us men have been isolated for years no clubs or bars to visit Somethings don’t change you have to get on with it the virus as no means to us we didn’t bring It here Remember the government new that it was coming but didn’t have a clue how the effects on normal people lives they thought it would Hit the old surplus to requirement to late the Young are so frightening now who’s to blame they not got a choice lost in there on world.
I understand the need to lock down the long term care homes to limit access to too many people that might expose residents and LTCH staff to covid. However the LTC hoes are being inconsistent in that they are now asking for volunteers nursing and PSW students , retired nurses and PSWs, and anyone else who is not trained in older people or people with dementia to come into the home to help with residents care because of the loss of the family help and the reduction of staff who may be infected with Covid. Bruce County is reported to be asking laid off librarians if they would volunteer for this work,. I know that this is being permitted by temporary emergency changes to the LTC legislation and I understand that but I would hope that such permissions are being thought through home by home by its administration to determine how to do that reasonably in effort to protect as well as care for everyone. Why wouldn’t the Home administration treat the paid assistant for the one woman like a “volunteer” to let her into the home to assist that woman? Whats the difference? Why did the Bobcaygeon home permit in a volunteer that herself was elderly and had compromised health after the Covid virus was already identified as being in the home — or at least that is the way it was reported in the newspaper . That woman did get infected and died. By saying this I’m not blaming anyone because this is a dire time and I only know what was reported in the paper but Im saying it in hopes that the homes administration are applying this ability to bring in volunteers with cautions as well as training and protective gear to keep all involved as safe as possible.
Id like to know if the residents with COVID are being isolated and moved away from other residents in separate rooms or in spaces like recreation areas or chapels or other spaces that could be repurposed to try to limit exposure of the residents from those that have the infection? Newspaper articles about the Bobcaygeon home that has been so badly hit by this virus referred to people still sharing 4 bed rooms when some were infected and others were not. Has that practice stopped and are residents being segregated in an effort to stop the spread,
Staff can still call and should be calling families, but in particular the SDMs ( substitute decision makers) of any residents that are incapable of making their own health treatment decisions when they are challenged to know what to do for a particular resident and also because that’s the law that was set up to protect both residents health and the staff from breaching their duties. I do assume that they are calling the SDMs when the incapable residents health changes to discuss necessary changes in treatment and care .
Do they need to be isolating anyone? Cannot we all protect ourselves a bit more effectively?
Here is an interesting distillation of the data (a bit old, 5 days) but succinctly it shows the number of ‘protective’ measures vs deaths per 10 million – best solution out of Japan >>>> everyone wear a mask – varying degrees of lock-ups do not work and have other unintended consequences (let alone the voluminous amounts of money spent)
https://wattsupwiththat.com/2020/04/01/do-lockdowns-work/
Thank-you for writing about a very difficult unintended consequence of trying to protect vulnerable seniors from Covid-19 exposure on the one hand, while creating a situation that is having serious mental health effects on the other. I am very involved in my Mother’s care and we have private caregivers helping her during the day. I tried to convince my Mother’s long term care home management team to allow her to keep her private companions, who are trained health care aides, during this lock-down, but to no avail. We asked her physician if he would write a “social prescription” to allow her to have her additional caregivers, but have not been successful. My Mom is in the advanced stages of Parkinson’s and can do very little for herself, yet cognitively she is strong. It’s heart-breaking to hear my Mom’s stories of how she is trying to cope; clearly there is not enough staff and she is left alone for long periods. Typically her voice is weak, so connecting on the phone is difficult. At times, we will be having a good conversation and then she will say, “Are you coming to visit me tonight?”
I believe there is a connection between placing an increased burden on health care staff (who are underpaid and overworked to begin with), whose immunity is then lowered by being further stressed, increasing their vulnerability to the Covid-19 virus, and resulting in them bringing the virus into the locked-down seniors community. Finally, we hear horror stories in the news media regarding how long term care residences are left severely short-staffed when there is an outbreak (https://www.theglobeandmail.com/canada/article-how-the-coronavirus-took-north-vancouvers-lynn-valley-care-centre/) With increased stress on health care workers, unprecedented demands for government funding, and the fragile systems in place to prevent the spread of this new coronavirus, why wouldn’t health care facilities welcome more staff? Maybe it’s not fair if one resident gets help and others do not. Perhaps there are legal and human resources issues with having private staff on the premises during a lockdown. One solution might be for families to pool private resources (for a short time hopefully) to allow for more staff to be hired during this pandemic crisis, and especially if there is an outbreak and a residence is severely short-staffed. This is a more nimble short term solution, than waiting for governments to allocate more funding.