Last week I asked those of you with a loved one in a nursing home during the pandemic to respond to a few questions. And you did (thank you!). I planned to write up a summary or assign meaning to your responses. I thought maybe I’d find some themes as I read through them.

Then I realized that this is about you–not about me. I don’t want to assign meaning to your experiences. I see no reason to paraphrase what you’ve told me.

Here is a sampling of responses:

Describe your experiences of having a loved one in nursing home, memory care community, or assisted living during the COVID 19 pandemic?

“I could not visit them. My Mother died in 24-hour care in December of 2020. Fortunately I ignored the staffs direction not to come; I arrived minutes after MOM died.”

“What’s frustrating is seeing people in healthcare not taking the virus seriously. I see nurse aids, nursing students, and nurses going to the bar, and the next day going into the nursing homes and hospitals. If I can’t see my grandma, why should the nurse aid who went to the bar be able to see her? There are so many frustrations in the system during this pandemic. I’m willing to do everything I can to keep her safe, but when will we be able to say that the benefits outweigh the risks? Once we’re both vaccinated, why cant I give my grandma a hug before dementia completely engulfs her? It’s a race against the clock.”

“Wow…it’s been extremely difficult, to say the least. I went from feeding my mom lunch every day and usually spending 3 hours a day with her to not being able to see her at all. She is at the end of a long battle with Alzheimer’s and is completely nonverbal, so connecting with her through a mask or a window or a computer screen is nearly impossible. She was actually the only person in her small facility (two houses of 14 rooms each) because her hospice aide brought it to her, so she had to be even more isolated and alone for another two weeks, which was even more terrible.“

“Mum was so well looked after that she looked better than before the pandemic. Mum understood when we could not come and we called her and kept telling her we loved her and wanted her safe. My mother survived World War 2 and Hitler and she certainly was not going to let a pandemic depress her and it didn’t. I am so proud that she never complained or cried like so many others did during this time. Stoic through living a hard life and being a survivor.“

“My mother-in-law (she’s 90)has Alzheimer’s and is in memory care about 2 miles from us. My husband (he’s 66) has Lewy Body Dementia and he is home with me, where I have been working from home since last March. (He is retired, I am not and have a long way to go on that front.) He has been able to see his Mom twice in-person, but head to toe in PPE. The first visit did not go well, he was too PPE’d up for her to recognize him (plus he’s no longer dying his hair), the second time went much better because the staff person in with him was able to help guide them both and because they used the clear shield face mask instead of the more typical one. But then cases spiked in the area, and things had to be locked down again.”

What has been the most difficult part of caring for a loved one in a facility during the pandemic?

“My marriage vow to comfort in sickness and in health was taken away by the governor’s order that I could not be with him. He cannot be cared for at home.”

“The extra hassles of needing to get COVID tests on a consistent basis in order to visit her. Wearing all of the PPE, and not being able to touch, kiss or hug her very well. The barriers that are in place, are needed, but the distance it has created for our loved ones in LTCH has been devastating.“

“The most difficult thing was for me keeping away from persons, shops or any situation where I could get Covid and walk it into either facility when they could have visitors. I was very conscious of my role as a carer for both people and all 6 of my grandchildren had to have the Flu shot. They had not had this shot ever before. We had no choice if my husband was to see his grandchildren. Christmas was very hard when he was in total lockdown but we could facetime etc. Visiting behind a screen was difficult with mu who was deaf..so I was literally screaming at her the whole 30 minutes. It was a strain on both of us and I decided that these visits could only be weekly.”

“Lack of visitors…I know some of her needs to interact were limited…staff members were overwhelmed.”

“…the hardest part for me has been all of the new staff members that have come and gone during the pandemic. Since we live in a college town, lots of them are students, who are probably way more high risk and yet are taking care of my mom when I am not allowed to. Before COVID, I knew all the staff members well and they knew me because I was there every day. Now it’s very difficult to get to know them (partially because of masks and partially because of social distancing) and it feels like complete strangers are caring for my mom and they don’t know her at all.”

What could facilities do, or what could they have done, to make this situation less stressful for families?

“Let me follow the same infection control protocol as the staff did and be in his room to continue to assist in his care as I had everyday for 2 years before the lockdown.”

“There wasn’t a lot they could do during this pandemic.”

“The only thing I can think of in hindsight would have been a more proactive routine on the staff’s part to communicate an individual update/check in with a regular email to the family members – weekly, twice a month, something – that would say, Hey, Donna is doing good – here’s a picture of here during our sing-along earlier this week. I’ve tried not to call them unless it was urgent because I know they’ve been overloaded (and I have been too), and they only have called when it was urgent.”

As a family member or loved one of someone in a facility during the pandemic, describe how this situation has impacted your own mental health?

“Honestly, I felt like I was sick the first half of the pandemic, and I think now it was just anxiety, mostly! Once Mom had COVID and I didn’t worry as much, I felt so much better. Early on, I definitely struggled with a lot of depression because I had so abruptly lost my purpose in life. I quit my job to care for mom in 2010, so she has been my world since then.”

“It was a dark time. It was tough to have a loved on in a facility – and seeing on the news the number of people that didn’t care about following public health guidance (especially those that thought they couldn’t be told to wear a mask). There were days that I felt like I’d abandoned my mother – and all of that leads to very negative thinking in other aspects of life.”

“I have had to have counselling due to the guilt of having both my mother and husband in facilities and the impact that Covid had on my caring role for both of them. I retired from my job last October as an executive at a Primary School to tend to both of their needs during Covid and knew that being in a school environment would increase my chance of contacting the virus and passing it on to them. I had counselling to establish who I am now and what I wanted to achieve in the future when both of their journeys had come to their destination. This is a harsh thought but I am in LIMBO most of the time and just visiting both of them, meeting their needs and meeting with their care teams. I become very depressed and some days do not want to communicate with persons who do not understand the role of a carer, who have never had to care for anyone and who did not understand the financial situation you are placed in when you have to pay huge amounts to ensure your partner is cared for adequately. mentally all of this takes it toll and I have limited the number of friends I discuss my situation with and I tend to keep my bad moods to myself.”

“Not being able to see my grandma has brought with it tremendous guilt. I feel guilty because in her mind, she doesn’t understand covid. In her mind, we’re just not visiting. Dementia already causes you to grieve before death, and with covid that feeling is just amplified.“

“Knowing he is well cared for helps but I should be comforting and assisting. I feel my role as wife (which no staff member can fill) has been taken away.“

“It has been stressful. Ironically, when my Mom was in hospital (there was another stint in Aug 2020), I had my best sleep, as I knew she was being closely monitored. When she is not doing well physically or mentally, I found I was dreading either receiving phone calls from the home (or her), as well as making them. I was in a constant state of anxiety.”