Dementia in the days of COVID-19: A long-term care providers’ perspective (full interview)

The following is the full interview with Erin. A feature story based on this interview can be found here.

What was life like in Eden Gardens prior to March 2020?

Vibrant. Different than any other long-term care home that I’d ever been in. It was full of noise, kids,  animals, laughter and tears at times. There were lots of events and lots of members of our community. Not just families, but lots of volunteers. We would do job placements for kids living with disabilities. We’ve had people who own goats and pigs come in (in addition to residents and visiting cats and dogs). It was vibrant!

To put it simply, your doors were wide open.

Yes, we had no visiting hours, so you could come at any time. Around any special events, we would be jam-packed around dining tables, with groups of five to 15 for Christmas or Mother’s Day. The day we locked our doors, we were supposed to have a St. Patrick’s Day Parade.

When you think about an elder having a difficult time leaving our building, it was our duty to bring the world to them, so they could continue to experience it at this stage in their life, so that they weren’t isolated and locked up. They were still absolutely able, willing and wanting to be a part of society.

When you went into lockdown in March 2020, what was it like and how did it affect residents?

It was pretty shocking. One day we were open and the next day a loved one couldn’t even come in. For the first few days, even palliative care was questioned. Can someone come in and see their loved one before they die? It got pretty depressing. It got very quiet.

There wasn’t a lot going on and the staff really were dedicated to doing everything they could and more to try and maintain life as much as possible, but as staff started to burn out, that became more and more difficult. It got quiet, then it started to get lonely and depressing for everybody. Our staff workload is hard and without our volunteers and families, the workload massively increased.

When you see joy on an elder’s face, you remember why you do this. These aren’t super high-paid people who work here. But when you see the joy on an elders’ face and you get to bring that part of life to them, it doesn’t really matter how much money you make, as long as you can pay your bills. When we stopped seeing the joy, it got tough to remember our mission, what we’re here to do and the benefits of this honourable line of work.

What impacts did those changes have on residents and families?

Residents internalized. You’d have people who were deaf and couldn’t see our smiles anymore, so they stopped smiling. It became difficult to communicate and we saw an increase in responsive behaviours. It was incredibly difficult for families who didn’t know us. For anybody who moved in during lockdown, their families had no idea what human was taking care of their potentially non-communicative person. Without the trust between care partners, I’m sure families weren’t sleeping at night.

We weren’t really able to support them either. We were overwhelmed and overworked, so they often became angry and frustrated. Sometimes they needed information I didn’t have, or they were frustrated about the way the public health orders were operationalized. It was tense.

On the flip side of that, for those families who did know us well, lots of whom were volunteers, there were words of encouragement, kindness and thanks. It was rewarding and motivating, but unfortunately it didn’t outweigh the struggle.

What were the most common complaints or concerns?

The inability to access their loved one. There was no good news shared. It’s common practice if someone falls, or a medication changes or they decline, we call and inform them, but we did not have time to call and say, ‘Your mom had a really good ice cream today and she loved it.’ No one heard anything good. I’m sure any time ‘Eden Gardens’ came up on their phones, people were afraid it was going to be because there was an outbreak and Mom has COVID, or she’s dying. It was never very positive.

A lack of being able to come into the building, access to information about their loved ones and getting ahold of the nurse for an update were the most common concerns.

Did you have an outbreak of COVID?

Yes, we had an outbreak in February 2021. Luckily, 98 per cent of our elders had received their first dose of Moderna vaccine. We had one staff member and that transmitted to one elder. That elder had super mild symptoms, received one-on-one care and fully recovered quickly.

The difficulty was that the staff member had been in all locations of our building. We had to put 127 people living with dementia on droplet precautions, isolate them for 14 days, swab them twice and give them their second dose. They were prodded and when they didn’t know what was going on, the swabs were quite violating. Our first experience with the swabs was quite traumatic for a lot of our staff and elders.

The second time they came back, we gave the public health team guidance on how to work with people living with dementia. We made sure there was extra staff on and familiar care partners sat with elders who were nervous. It went much better.

Throughout the pandemic, what was the biggest challenge for you personally?

Striking a balance between communicating everything to everybody – 130 elders, 250 staff, 130 family members and 75 volunteers – and finding a way to support people in their own resiliency and mental health, while trying to balance mine. In all honesty, it didn’t happen. It wasn’t possible to do it all.

Would you do anything differently if we had to go back to the beginning?

I would definitely do things differently. I would panic less in the beginning. I would have fought very hard never to have banned families to begin with. I would have fought earlier with advocacy groups to allow one visitor per person. I would have taken more time off myself, as opposed of working a lot of seven-day weeks and 16-hour days. I wouldn’t do that again because when we hit the one-year mark, my cup was very empty, and it felt like I wasn’t much use. Resiliency comes with habit. I’ve learned to take better care of myself, so my cup is big enough to take care of others.

Do you have advice for other health-care providers and the people who are leading those teams?

I took a lot of webinars and tried to do a lot of education on my own resiliency and vulnerable leadership during difficult times. The resiliency workshops made it worse. They preached balance and balance wasn’t an option. I came to a point of just accepting that I couldn’t be balanced and forgave myself. I have a young family and a daughter that I couldn’t see for 14 days during an outbreak. It felt like no matter where you succeed somewhere, you had to fail somewhere else. I would have given myself more grace in doing the best that I could, instead of feeling that I had to be everything for everybody. I would have accepted the fact that aspiring to balance and feeling like I’m failing when I couldn’t get it was not helpful. It was best to just sit in the moment and do what I could at the time, as best as I was capable.

From reading public health orders and collective agreement changes to everything else, there is always so much to do. Make time to do rounds and be present with the staff and families and elders as much as possible. I should have spent more time with the people who do the work that keeps our elders alive and safe. I think that contributed to a decline in our culture. Now it’s hard.

How are things now? Have you started getting closer to a kind of normal?

Absolutely. When April 1 came around and we were open to visitors, we were a little anxiety ridden, because we were in the third wave, but we saw faces we hadn’t seen in over a year. It was great. It’s definitely slowly returning to normal, but these wounds will take long to heal. Some of the biggest damage is what has happened to our culture as an organization. The staff are not happy. And they used to be very happy. Part of that is from mistakes we may have made as a leadership team in how we operationalized things. Part of it is COVID in general. It’s just a really tough time right now and when everybody’s having a tough time, it’s hard to lift anybody up. I think it’s going to take a while to get back to being the joyous community we were before COVID happened.

What about the losses that people living with dementia may have suffered, including any quicker decline?

Our philosophy of care is to combat three main plagues: loneliness, helplessness and boredom. I don’t know if we could find a person in the country who over the last year wasn’t lonely, helpless and bored. Without meaningful life, loving companionship and any kind of spontaneity, I absolutely think there was a quicker decline. People died of broken hearts. We almost incarcerated a very vulnerable population of our society with the very best of intentions and it did some serious damage.

I think of people who didn’t see their mom for four months, then got to have half a day with her, hours before she died. I think about kids I told were not allowed to come in and say goodbye to their grandfather who died. For that person living with dementia to not see those faces before they go, not to feel that love in a room, there’s nothing we can do about it now. It’s a big loss. There are conversations that I’ll never forget for the rest of my life. Telling a seven-year-old girl that she couldn’t say goodbye to a grandfather who was a very significant part of her life and her mother crying and asking, ‘How could you do this?’ You’re just trying to follow the public health order. You don’t sign up for this.

Is there anything else you would like to add?

Funding has been and still is a significant challenge for a small non-profit like ours and something I lose sleep over regularly. We received no extra funding for overtime, staff shortages, paying staff for COVID testing and isolation, mandatory physical changes to help support physical distancing or PPE. We didn’t receive extra PPE until May, when the health authority learned that we were wearing cloth masks, made from donated sheets.

Local hotels donated the sheets. A local company made patterns. My executive assistant and board members then drove around the city dropping off sewing kits. Volunteers sewed 600 gowns and masks for us. That was our emergency backup. At one point, I drove 200 up to a home in Port Alberni that was in crisis. They didn’t have any and it was before the health authority was able to help.

We’ve had some really beautiful moments. We had ballerinas dance outside the windows. We had musicians play saxophones, trumpets and guitars. We had a car show and a motorcycle brigade. We had as many outdoor, distanced things as we could. Youth 2020, a volunteer group, painted four-foot-tall wooden kids and put them around the property, so when the elders were out, they were reminded of the kids wo weren’t able to see them. The community has been exceptional.