Behind Closed Doors

“They’re idiots! They’re all stupid!” said Bert, my stepfather, as he spoke on the phone with me from his new private retirement home in Toronto. He sounded frustrated and distraught. 

Bert, whose name has been changed to protect his privacy, is an 82-year-old man living with dementia. He entered his retirement home physically healthy and active. I enjoyed going on walks with him during the two to three years that dementia gradually took over his brain. We often walked around several blocks at a time and at a good pace. I also enjoyed having long conversations with him, despite him not making sense. I think he liked being able to engage and feel connected, and I liked being free from the confines of logic and rationality. He was able to feed himself, though he sometimes picked up a pen or pencil and would need help to switch to an appropriate utensil. 

The retirement home he was in came highly recommended for people with dementia, partly due to its much higher ratio of staff to residents than most similar retirement homes. He’d only moved in four days before our conversation, and a 10-day COVID-19 quarantine period was required. No visitors were allowed, but family members had been doing video and phone calls with him. 

Calming angst

I had spoken on the phone twice before to Bert since he’d moved in. He sounded clearer and more articulate on his fourth day than the previous days, but this time he was talking emphatically about moving and needing a car. I acknowledged and validated what he said, and he replied by saying, “That’s right” and “I think so.” 

Sandler's mom [left] and Bert [right] six months before entering the retirement home.

The staff member had to go and get him since he was in quarantine and needed to stay in his room. I called the director to ask if she could transfer my call to the cell phone of the nurse on duty so I could hopefully help him to settle down. I also asked if I could do a video call with him and she agreed. Within a minute, I was speaking to Bert, who was still in the hallway.

I listened to his high level of agitation and his needing a car and money to leave. I told him yes, of course he needed to leave, but to do so we would need a plan. 

“That’s right,” he said, as I told him to return to his room so we could do a video call. I could hear him calm down. A few minutes later, I was talking to him via video on his tablet.

Planning an escape

“A car is coming,” he said to me.

“Yes, we’ll need a car,” I replied.

“Moving far away,” he said. “They’re all idiots.”

“Right, you need to move,” I told him. “You can’t be surrounded by idiots. Let’s come up with an escape plan.” 

He smiled and laughed. I felt relieved. I saw signs of the Bert I knew. Even though he has dementia, somehow his sense of humour had remained intact since he moved into the retirement home. I thought about how hard it must be for him to adjust to a new place to live, not knowing why he was there, and to be stuck in his room unable to have any family visit. 

“Okay,” I said, “let’s make a list of what needs to happen so you can leave”.

He agreed and I wrote down each item as he created his list.

Bert in October 2021.

Bert’s list:

“Write to four to eight people,” he began.

“Good idea,” I replied, reminding him of how often he wrote letters to the editors of newspapers when he was frustrated with politicians and events in the world. He smiled. 

“Bert will help it come through,” he said.

“Yes,” I said. “This can’t happen without you actively being involved.” 

He was calm, focused and engaged by then. I was surprised at how much sense he was making. I wondered if maybe the stress of having to adjust to a new situation was causing some neurons in his brain to start working again.

“Get a car,” he continued. “Bring 20, 30, 40 people … Get money from the people … Bringing in things that are underneath.” 

“This is a great list,” I said. “Can you think of anything else?” 

“I just want to go home and see my wife,” he replied.

I felt my heart drop and a heavy feeling of sadness came over me. For a moment, I was not hearing a man suffering from dementia. I was hearing a man whose thinking was crystal clear and could articulate exactly what he was needing.

“Yes, Bert, that’s all you want,” I said, “That’s what we’re going to work on.” 

Once again, he smiled and said, “That’s right”. Then, we said goodbye. 

"My mother visited him the day after his quarantine ended. She was horrified and shocked at the sight of him."

– Renee Sandler

Declining health

Other family members and I found it increasingly hard to speak to Bert over the last six days of his quarantine. His voice was softer, he was silent more and seemed tired often. Family members who called in the early evening were surprised to hear that he was often asleep. 

My mother visited him the day after his quarantine ended. She was horrified and shocked at the sight of him. It took two staff members to hold him up and he could only walk by taking little steps. He looked like he was in pain when he sat down, and he didn’t respond when she tried to talk to him. He was disengaged and looked “out of it”. 

When she asked the staff what had happened to him, they told her that he was just having a reaction to his second COVID-19 vaccination, which was over a week before. His reaction was not unusual, they told her, and it had happened to other residents as well. This sounded strange to her, but she believed them. In hindsight, she wishes she had acted sooner and realizes it was because she was in shock and disbelief that she didn’t. 

The government regulations changed two days later and residents could have more than one visitor if they sat outside. I went with my mother and I witnessed what she had witnessed. Two staff members were needed to bring him outside and put him in a chair. He looked uncomfortable, but could not move himself even slightly to adjust, so a staff person did so for him. 

“Bert, it looks like you’re thirsty,” I immediately said. “I’ll go and get you some water.” 

My mother noticed he had a layer of white fuzz on the top of his tongue and he kept touching his lips, which seemed very dry. When I returned with a cup of water, he could not hold the cup, nor drink from it. I got a straw and my mother held the cup while he drank four cups of water, one after the other. His voice got a little stronger after each cup.

Other family members informed me that they also had told staff Bert seemed thirsty and were told he was fine. All of us family were very alarmed, frustrated and anxious. We insisted on having the doctor at the retirement home assess him, which we were told had not yet happened.

"If the system had let us down, with unthinkable results, how many more families had suffered the same heartbreak caused by staff indifference at this retirement home, and possibly at other care homes?"

– Renee Sandler

Searching for answers

My mother received a call from the doctor that evening. She told her she had tried to assess Bert but he was sleeping. However, she said he seemed okay and was likely just recovering from the second COVID-19 vaccination, and she suggested that he get bloodwork done in a few days.

My mother met with the doctor in person the next day and told her that Bert needed to go to the hospital. The doctor, who still hadn’t assessed him, agreed. 

Bert was taken to North York General Hospital by ambulance, where tests revealed he was suffering from hyperglycemia, with his blood glucose level at 29.3, a result of dehydration. He also had a compression fracture in his lower back (L1 vertebrae). 

Suddenly, what my mother and I observed a few days earlier made sense. We were horrified and scared, as we didn’t know how much of the damage caused during his stay at the retirement home would be permanent. But we were relieved that he was finally safe and being taken care of. 

None of the staff, not even the RN who was there daily, sought medical attention for Bert or alerted family of his deterioration while he was in the retirement home. We filed a complaint with the Retirement Home Regulatory Authority (RHRA). After an investigation, it determined that the retirement home had acted in accordance with the regulations, with one exception: staff didn’t prepare a care plan within the required 48-hour time frame. 

My family was stunned and outraged. If the system had let us down, with unthinkable results, how many more families had suffered the same heartbreak caused by staff indifference at this retirement home, and possibly at other care homes? 

"If it is true that the real measure of any society can be found in how it treats its most vulnerable members, then I think we have more work to do."

– Renee Sandler

Reflecting

After spending a few weeks in the hospital, Bert was moved to a long-term care facility, where he is now. Sadly, he never regained the ability to walk, speak coherently or feed himself. 

As for me, I am guilt-ridden and haunted by my conversation with Bert when he was in quarantine. I had interpreted his words as simply those coming from someone with dementia. Not once did I consider that he could’ve been trying hard to tell me that his move wasn’t working out for him or that I needed to do anything besides be supportive and understanding as he transitioned to the retirement home. 

Bert [left] and Sandler [right] in November 2021.

But I am left with the sad and painful feeling that people with dementia are an incredibly vulnerable population because they often cannot communicate their needs and feelings and will likely not be believed if they try. If it is true that the real measure of any society can be found in how it treats its most vulnerable members, then I think we have more work to do. 

I am writing this article to hopefully inspire both reflection and advocacy. When the next pandemic comes, will the rules be any different? What will be done to promote the mental health and well-being of residents in retirement homes and decrease chances of neglect and abuse? Will at least one family member be allowed to visit in person? Will there be stricter oversight and accountability of private retirement homes and long-term care facilities? Will a livable wage and benefits be prioritized for workers in care homes? People who are living in care facilities are the people who cared for us – are we doing all we can to care for them now?