I run a Facebook group that helps like minded individuals advocate for their loved ones in long term care. I have over 2000 members. So far in my membership, more loved ones have passed during this lockout from apparent neglect than from Covid. It seems the detrimental effects of this lockout may have in fact caused a lot of deaths that no one is talking about. Everyone is focused on Covid, but an unusually large number have died from non-Covid issues. Why aren’t we hearing these numbers as well?!!
My mom had been living in a long term care facility since October of 2016. Early on our family saw that the home didn’t provide adequate care to meet her needs. We fought for as much care as we could get, but because of limited staff, we had to supplement her care. On average, we provided her 6 hours a day of extra care. It was provided by either myself (mainly), or my sister. On the rare instances where neither of us could make it, we sent in a private personal support worker (PSW).
On March 13, 2020, at approximately 5:15pm we were notified that effective that same day at 6:00pm, we would no longer be allowed to visit because of Covid restrictions. That was a Friday evening. Management was long gone so no one was available to answer our questions.
On Monday when management was back, we immediately attempted to be allowed in on the basis of being essential caregivers. I had been there every single day for the past 3 1/2 years. I provided all my Mom’s personal care. Yet they told me I wasn’t essential. I insisted that they were violating my mom’s rights. She needed the care, as she had advanced dementia, and a lengthy separation from us would likely mean that she would no longer remember who we were after a short time. On top of all that, as part of her disease, she forgot how to speak English a long time ago and reverted back to her mother tongue (Serbian). And while she no longer spoke much anymore, she could understand us as we both speak Serbian as well. None of the staff in her home could speak her language.
When they denied us, we asked if we could hire a private PSW. They told us we could, but only if we found one that didn’t work anywhere else (ie: it would have to be someone who only worked in that home and only cared for our mother). Of course trying to find a PSW like this in the middle of a pandemic was impossible. Also, we felt they set up an impossible standard for us. Meanwhile, they used staff that worked in multiple locations, temps, staff family members, agency staff and brand new untrained staff. Why were we not allowed to hire a PSW who worked in multiple locations if they were allowed to? Why were temps and untrained staff allowed in if we weren’t?
Also, the home my mom was in was Covid free, yet they seemed to have an unusually large number of people die in the first six weeks of the lockout. Having 7 deaths without an outbreak of any kind is suspicious (that’s 7% of the population – 101 beds total). That never happened when family caregivers were allowed in. Why so many? Seems to me the answer is obvious: they couldn’t meet the care needs of many of their residents.
For the first two weeks we couldn’t even do window visits because our mom’s room backed into a locked courtyard. We called often for updates. And we always got the same message: that our mom was doing “great”. We were surprised because even before the lockdown she wasn’t doing great. She was recovering from a UTI they refused to treat on time and as a result was suffering from unresolved delirium. We were in the process of trying out new medications when the lockout happened, and we were monitoring her very closely. Something we knew would no longer happen once we were locked out. Yet any time we called, she was doing “great”. Almost as if the response were scripted.
The first week of April was when we were first able to get the gate to the yard opened and started doing window visits. We went to visit often, and always saw mom alone in her recliner in her room. She was always covered by a blanket and every single time she was either sleeping, or in an extreme state of agitation. We called several times to ask about this agitation, and they told us none of the staff ever saw it and that as far as they were concerned, it was resolved since they changed her meds. I kept telling them the problem wasn’t resolved as I was still witnessing it. Instead of logging the issue, or checking on her, they simply stated she must be agitated because of our window visits. This was not the case because from her recliner, she couldn’t even see us at the window. It was always in the reclined position and she wasn’t positioned to see outside.
The second week of April, I started asking that they leave her in her wheelchair and push her up close to the window so she could actually see us. The first time we went to see her in her wheelchair, I was horrified because she was practically falling out of it. She was hanging off one side, and I was concerned she was going to fall over. I called the home and asked them to send someone to come adjust her because she was hanging off the side. Someone did come and fix her, but she still appeared to have problems sitting upright. This was never a problem for her pre-lockout. I called the nurse once I got back to the car and asked her if mom was having problems sitting. Had her condition deteriorated? She told me no, that she was sitting just fine. I explained to her what I saw and she just chalked it up to her being placed in her chair incorrectly. She said she would monitor and let us know if there were any changes. We never heard anything further about this.
Over then next little while, we kept window visiting and it was clear to us she was deteriorating. She didn’t even acknowledge us when she saw us at the window, she wasn’t sitting properly, and she just stared dazed and vacant all the time. Yet anytime we called to voice our concerns or get an update, they still told us she was doing great. I’m not quite sure how they came to that conclusion because not even once did we ever see anyone with her in her room. They just left her in there alone all the time. They didn’t even have the decency to turn on her tv for her.
During this time, we kept trying to get back in. We called our MPP, the doctor from the home, the MOLTC line and the Administrator. Anyone we could think of. In my mind, the directive left the door a crack open for essential caregivers which I felt we were. But they refused us at every turn, and so we sat behind a pane of window glass everyday and helplessly watched our mom deteriorate. We even attempted to bring her home, but we lacked the lifts needed to move her. On top of that, the doctor would not give her prescriptions beyond one week. During a pandemic, I couldn’t find another doctor that would take her on as a patient. So she remained in the LTC home.
On April 15, I got a call from the home telling me that 3 days earlier (Apr 12), my mom had stopped eating. I asked why they didn’t call us sooner and they had no reply. At that point they asked me to come in and try feed her for an hour each day at lunch. I went, and when I first walked in her room and took the blanket off her, I was shocked. She had lost so much weight. It wasn’t evident in the window visits because they always had her covered. Without the blanket, I also noticed she was now being propped up in her chair with a pillow – she was no longer sitting up on her own. I asked the nurse how much weight she lost. She said it was 22 pounds. There is no way she lost 22 pounds from not eating for 3 days.
It became clear to me she hadn’t been eating for the entire duration of the lockdown. They just didn’t bother to notify us until it was critical. The first day I fed her she drank so much. She seemed endlessly thirsty. She also ate but very slowly. At exactly an hour they came to kick me out. I asked if I could at least finish feeding her. They refused, and made me leave despite the fact that she was still eating. That day I asked to have the doctor call me because I was so concerned. When the Dr. eventually called me back, she said she felt my mom was at end of life. She said a lot of people stop eating and drinking at end of life and She felt that was the case with our mom. So I asked since she was considering her end of life if we would be allowed to spend more time with her and if my sister could come visit. She said, no, she wasn’t close enough yet. But they still would allow me an hour a day to feed her. And when it got closer to end of life we would be allowed in.
Over the next week, mom ate on and off. I was growing more concerned because each day she was getting worse. I asked them to at least let my sister rotate feedings with me so she would have a chance to see her too. They refused saying when it was close to the end, they would let us be with her. They kept saying she still had “weeks”.
On April 23, the Dr called to tell us mom was no longer swallowing her meds at all. At that point the Dr. suggested taking her off all her existing meds, and put a butterfly infusion set in her in order to be able to deliver just her pain meds intravenously. I once again (for the hundredth time) voiced my concerns about the agitation my mom was till experiencing. She said they would also give her something to calm her down in the event that she was agitated. She assured me that she would be kept “comfortable”, and that removing all her other drugs at once would have no adverse effect on mom.
We asked to see our mom in order to assess her condition, to see if she would take meds from us, and because as POAs we felt we had a right and a duty to be able to assess her ourselves. She refused to allow us to see her before making this decision. The Dr. was also rushing us telling us the order had to go in that evening so it would arrive later that night so the butterfly could be put in and she could be given her nighttime doses. She said if we didn’t make a decision quickly, it would be a whole 24 hours that our mom was without her pain meds and that she would be in pain. In the end we agreed, but in hindsight, we felt we had to make the decision under duress because she rushed us, wouldn’t give us access to her, made us feel guilty saying if we didn’t do it, mom would be in pain, etc.
On April 24th, I went in to feed my mom lunch for the last time. Right away I could see something was different. Her skin looked different, she had food trapped in her mouth from earlier that morning, she was having difficulty breathing, and she was so violently agitated that it was scary. I didn’t even try feed her lunch that day and instead rang for the nurse. She took a quick glance at my mom and determined she was “fine”. That her breathing was normal, and her skin looked fine.
I have been a caregiver for my mom for the past 8 years. I know how every breath she takes sounds. I know when something wasn’t right. There was no reason for her to have a rattling sound when she was breathing – it had never happened before, and it was anything from normal. After the nurse left, my mom became more and more agitated. It was clear she was suffering, and as much as I tried to calm her, nothing was working. I called the nurse back again and insisted she give her something to calm her down. She said she couldn’t because they HADN’T PUT THE BUTTERFLY IN HER YET. They very one they were supposed to put in the night before. They left her without her meds. She came back about 20 mins later to put in the butterfly and told me I had to leave – my hour was up. I told her I wasn’t comfortable leaving since my mom was doing so poorly. She said I had no choice but to leave or I’d be banned from coming back. So I left. I was scared. I didn’t want to get locked out (this was a repeated threat by them in the past). In the past I wasn’t worried because I knew my rights, but during this pandemic, I knew homes were getting away with anything.
We had no more rights. At all.
I got in my car and drove home. I had been gone for about 40 minutes when I got a call to come back. They said they had noticed her skin was mottled (which is exactly what I reported to the nurse and she told me it looked fine – I just didn’t know the technical name for it). They said that was an indication that death was imminent within 24 hours. They called my sister too.
We were both there within 20 minutes of their call. Neither of us made it back in time and she died all alone.
Without a single one of us by her side to comfort her, or to love her during her last moments in life. It was beyond heartbreaking. And while I was allowed in for the week preceding her death to feed her, my sister hadn’t been allowed to see mom even once in six weeks even though she was deemed both palliative and end of life. They just kept saying it wasn’t close enough to the end – she still had “weeks”. They denied my mom the care she needed, and they took away her rights to have someone with her during her final moments.
We strongly believe that during this lockout, our mom passed away because her care was not supplemented by the home when we were locked out. They didn’t give her the time she needed to properly eat or drink, they didn’t properly monitor her condition, they didn’t report her condition to us accurately, they dismissed all the reports we made about her condition, and they didn’t ensure she had the meds she needed as evidenced by her missing butterfly that last day. They stripped her of her rights to get the care she needed either from us or from a hired PSW. They also denied her right to have her family with her once she was declared palliative. And while they denied my mom any caregivers at all, the home itself was allowed to use temps, agency staff, staff family members, etc, all who posed a higher risk that we did as we had both been isolated at home for the 6 weeks prior.
Had our mom received the care she needed, it’s likely she would still be here today. And while we know our mom was sick, we are convinced she passed away because of the neglect in the last weeks of her life. On top of that my sister and I will live with this horror for the rest of our lives. We will never get another chance to see our mom again. We will never forget watching her deteriorate through the window day by day as staff continually ignored our concerns. We will never get to say good bye.
The worst part is that every single day we now worry that our mom thought we abandoned her. When the lockout happened, we weren’t even allowed in to explain to her what was happening. No one else could explain to her as they didn’t speak her language. So she had no idea why one day we suddenly just stopped coming. To not let a family have the chance to at least explain is beyond cruel. It was cruel and unnecessary.
Our mom was essentially locked in prison for the final six weeks of her life.