COVID-19 and Residents' Experiences
We believe it is always important to hear what long-term care home residents have to say; as the COVID-19 pandemic continues and important decisions about long-term care are being made, we believe this has become even more important.
Unfortunately, the pandemic has also made it more difficult to hear from residents. In response, we have created a public page on our website (www.poetproject.ca) to post residents’ messages so that others (anyone in the world) can read them. We will not post any resident’s name, the long-term care home’s name, or any other identifying information.
We are interested in hearing anything from any resident from any long-term care home in Ontario.
Some of the things residents might want to talk about include:
- How has your daily routine changed during the pandemic?
- How have the visitation restrictions affected you?
- What do you want the people making decisions about long-term care homes to know?
- What do you think was done right? What do you wish had been done differently?
There is no word limit, but we might have to edit longer statements for space. If statements include identifying information, we will remove it before posting. If at any time you (the resident) would like your statement removed from the website, just contact us.
Statements can be sent in an email, or scanned and attached to an email. Please ask someone at your home to help you with this if you need it. Please send emails to Jill Oliver, Community Ethicist & PoET Project Lead at William Osler Health System: [email protected].
Read experiences below...
Read experiences from residents of Ontario Long-Term Care Homes
My Mom has said that she now stares at walls for many hours of the day and does nothing. She says she is sat in front of the TV. She has said there are less social interactions because the activities are limited, the numbers of participants are limited, and they have to be apart which makes it difficult to hear and see. She says she does not talk to anyone except staff when they talk to her. She says there are not enough staff to keep her doing things, especially on weekends. She also said she does not get to go outside very much at all.
My Mom says that it has been absolutely terrible and this decision is cruel. She said, “you were in every day and helped me out with whatever I needed. You would take me outside when the weather was nice, we would have Tea every night and talk about everything”. She says she does not know how long she can last.
I was also there at supper every night so she did not choke and I told her I loved her and kissed her goodnight when she went to bed.
Now she is alone and nobody knows her story. There is nobody that can bring up where she lived, who she was married to, how many children and grandchildren she has, where she worked, and who her friends were. She says that she does not remember all her children or parts of her life, as I, as her support person used to reminisce with her to keep her life relevant.
My Mom has lost her memory at a quicker pace than she would have if any family member would have been allowed to be designated an essential family caregiver and allowed in, if only for an hour a day. She has also lost the sparkle in her eyes.
My Mom has told me that she wants everyone to know that she NEEDS her support system and to not cut it off. She says she was given no choice in any decisions surrounding the lock out. She has also mentioned that “My family means everything to me and to not see them is killing me.” She thinks that keeping family out for so long is cruel and that there must be a better way to be safe from the virus but allow family in. She said this is supposed to be my home but I would never lock anyone out.
I find she is more depressed, lonely and giving up because it has been so long. I see the physical and cognitive deterioration every day.
My mom was able to carry on a decent conversation at the initial lock out, and now it really depends on the day as to the conversation.
Both my Mom and I think the initial lock up was ok but it has gone on far too long and loneliness has set in. I believe lock outs should be no longer than a month.
I saw my Mom start to give up on being able to see her family. I feel, even if she was able to see her support person that she would be better cognitively and physically.
I wish she was allowed 1 essential family care giver that was allowed in to support her through her end of life journey. Without this support I can see that she is worse off. She says that she does not remember all her children or parts of her life, as I, as her support person used to reminisce with her to keep her life relevant.
My comments are maybe not valid, as I lost my husband last year, before COVID struck. I visited and fed him twice a day. In the last 1 to 2 years, he was not aware of very much, and not able to carry on a conversation. He did still recognize me, I think, almost to the end. There is no way he would have understood why I was not there. It would have been so harmful to him. I could not have left him like that. Truthfully, I believe that it would have been hugely abusive to deny our visits. The LTC Centre had (almost all) very good staff, but these people were tremendously overworked, and could not give residents the full extent of physical or emotional support that family members did. For example, spending a long time feeding our loved ones. I am so grateful that my husband did not have to go through this COVID isolation.
My husband was on Palliative Care the last 2 weeks. He was dying, and not a priority before all the other residents. I understand this happens in LTC, because staff are so busy. I found him early one morning with his mouth all bloody because of sores. I was there and could have him cared for. But if it had been in COVID time, what would have happened to him, with no one to advocate for him?
My Mom can’t swallow very well (rarely) so she has a suction machine at her bedside. She has a peg-tube and she has very limited movement in her right hand/arm. She does not have the strength to press a call bell. She is cognitive, understands what is being said and through groans and facial expressions I can understand what is going on. On rare occasions she can get words out…other times she tries but it’s hard to understand.
My sibling and I were taking shifts spending up to 10hrs per day at her bedside. Doing suctioning as needed, oral, nose, ear care as needed. We were also taught speech therapy techniques using a spoon which we were working with our mom as she wanted to eat food again and get rid of the peg tube. We would also do physio exercises.
My sister and I were heavily involved in all aspects of her care and would point things out to the staff that they didn’t notice themselves. We would also keep our mom company and take her to events or wheel her around the building to get her out of her room.
On March 15th when we were told that they were going into lockdown we immediately asked to be made an exception due to the situation but we were told ‘No, No exceptions’. The next day I went in and asked if they would walk a camera down into our mom’s room so that we could stay involved in her day to day care and talk to her at will 24hrs a day. Our mom is in a private room. They said No.
Our mom has been quarantined twice. No COVID in the home but when they suction her (which we were doing daily) they would swab her and quarantine her. The first time she was quarantined, I didn’t know if she had her tv turned on or if she was left in bed or if her feed was on schedule. The second time, they suctioned her and did another COVID swab and called the on-call doctor. My mom was quarantined but this time I had skype calls so I could see her each day and I could see that she wasn’t doing well.
My mom is now deteriorating from depression. She doesn’t connect through the window or the tablet, and she has thrown up 3 times in the last 3 days (she is fed through a peg tube). She is refusing mouth care. The doctor told us tonight at the window visit that he thinks she has given up her will to live and we should consider stopping her feed to see if she makes a fuss to indicate she’s hungry…my mom is non-verbal. I told him that she wants to live and he asked me how I knew, maybe she has changed her mind. He said maybe I should try to ask her and I said how can I do that through a window or on a skype call, could he make arrangements for me to go inside and spend some time with her to see if she’ll communicate with me. He said no, there were strict restrictions on visitors.
What my mom needs is a HUG and her Hand Held and her Dog and her Family involved. I am confident that she would perk back up if she had us back in her life.
For nearly three years, I have been a resident of a private, for-profit long-term care home. The following remarks are based on my own personal experience of the novel coronavirus pandemic.
Much has been made of the pandemic’s negative impact on social connectedness – the isolation of long-term care residents from family members. But the war on COVID-19 has claimed a seldom-considered casualty of a different kind: the exercise of democratic rights by residents and family members alike.
It has often been said that the first casualty of war is truth. In this war, the casualty is the ability to speak truth to power.
Because of the need for physical distancing to curb the spread of the virus, in-person meetings of my home’s residents’ and family councils have become impossible for the past four months. Residents’ council meetings have been replaced by a weekly update from the administrator, in which information is provided in a top-down fashion, and decisions are presented as faits accomplis. The chair and secretary of the family council forward almost daily emails from Family Councils of Ontario on the developing situation.
The residents’ and family councils serve as conduits for distributing COVID-related information. (As in the media, the pandemic has taken up all the oxygen in the room. Everything else is viewed through its highly focused lens.)
There are no opportunities to provide input or feedback, or to discuss or challenge administrative decisions. This further promotes an atmosphere of “we know what’s good for you” paternalism.
Residents are already treated as de facto legal minors, given the high rates of dementia and Alzheimer’s in the long-term care home population. However, the same pretext cannot be invoked for regarding family members in a similar light.
Surely, a way could be found to allow in-person meetings of both councils, so they may exercise the vital functions for which they were established, and hold management accountable during the pandemic, as they would seek to do under normal circumstances.
It is unhealthy for residents’ and family councils to be on the casualty list.
While Dad will not complain to anyone, he does confide in me when I call Him, when I can get ahold of him. This Audio was March 31st, 2020 a couple weeks into lockdown.
I called him today, and he didn’t remember who I was. He asked me how my Dad was.From audio transcript: “I am all alone.”
Prior to the pandemic I left the property frequently. Now, I am not allowed to leave. I used to enjoy going for a walk around the block, going to Tim Horton’s for a coffee, or going home where I used to live with my partner for the day. By going out frequently, I was exercising and socializing which is key to my well-being. Now that I am not allowed to leave the property, my strength has decreased and my mental and emotional wellness has declined.
This is the part that has affected my life the most. Prior to the pandemic my partner would visit me every day. She would come into the building and spend time with me in my room. We love each other very much and thrive off of our close relationship. At the beginning of the pandemic, we had window visits and then as things progressed we had outdoor visits. A recent change in the home’s visitation policy has now restricted our visits to once per week. This has impacted my mental health significantly. My depression has gotten worse, I am lashing out at staff and other residents, and am simply not me anymore.
I would like the decision makers to know that not everyone living in long-term care is elderly with a cognitive impairment. I am young (61) and am fully cognitive. The only reason I am living here is because have Spina Bifida and require help with personal care. I want to be able to make more choices, have privacy and independence. I feel that the policies here are geared towards the cognitively impaired elderly and that is not me. I do not want to have to abide by the same rules. I feel there are too many restrictions placed upon me.
This home has not had one single case of COVID-19. They closed the doors right away and practised impeccable infection control. I am very grateful we have not had an outbreak here.
I feel that all homes need to have affordable private rooms. If my roommate was not feeling well, I was forced into isolation. I found this very frustrating. Being in isolation meant I had even more restrictions than usual most importantly not being able to come out of my room to have a visit with my spouse. She is the single most important thing in my life and not seeing her everyday is killing me.