dementia

Nursing Homes and the Coronavirus

Does anyone else wake up every morning and think they’ve had a nightmare based on some odd sci fi movie they once saw…and then realize it’s real?

I don’t know where to begin.

First of all, I’m not in nursing homes, memory care centers, or adult day centers lately. I’m a gerontologist who is avoiding older adults like the plague. Except they aren’t the plague. I am potentially the plague.

To be clear, I have no indication that I have COVID-19. I feel fine. I have no symptoms. But I can’t rule out that I’ve contracted it and am not yet showing symptoms. None of us can….

I would be devastated if I transmitted COVID-19 to someone who health was vulnerable due to age and chronic illness.

I am not scared of getting COVID-19. In the framework of our society, no one really cares if I get COVID-19. However, I am terrified to transmitting COVID-19 to someone who might die from it or even need our limited medical resources. And if I don’t get it, I can’t transmit. Therefore, my goal is to avoid the virus. It should be your goal as well, no matter your health status.

Although I’m not at nursing homes or other senior living environments, I’m hearing from employees and families…and even some residents…and what I’m hearing makes me sad. It’s not just the coronavirus. It’s the (necessary and important) precautions we are taking due to the coronavirus. The sacrifices we are asking people to make are excruciating.

I’ve heard from a family who worried that their mom’s nursing home would shut down to visitors (which it eventually did) and decided the best decision was to bring their mom home during this time. Their mom, who has Alzheimer’s, had more extensive care needs than they realized. They realized they couldn’t provide her adequate care at home and drove her back to the nursing home. They weren’t even let in the building to get her settled. They sat in the parking lot and cried. They don’t know when they’ll see her again.

A current Gerontology student at the university where I teach works as a nursing assistant at a local nursing home. When the nursing home decided to ban visitors to protect residents, a family member called the facility and told my student (who is, by the way, 19 years old) that she and the other employees are cruel and heartless for keeping residents from their loved ones. I get it…it’s hard…but we’re all in this together. And strictly limiting visitors is absolutely the right decision. Please don’t be angry at nursing home employees. Many are staying extra hours during this time.

I have alumni working as nursing home administrators. They are telling me how nothing has prepared them to make the decisions they’ve had to make in the last few weeks. They are telling staff to stay home if they have symptoms, but they worry about having enough staff to take care of residents. They understand the social needs of their residents, but they’ve had to stop group activities and cease congregate meals.

They have residents with dementia who don’t understand or forget why their families can’t visit. They have residents who watch the news all day long—and are terrified that the virus will infect their nursing home and they will die.

I know a few technology-savvy nursing homes who have set up Facetime and Zoom visits with families. However, I know some people with dementia will be confused or even agitated by virtual visits. And not all families are able to take advantages of these services due to lack of internet service.

A friend who works in a nursing home has told me how scared some of their residents with dementia are when staff must wear a mask. If you struggle to recognize people under normal circumstances, imagine how hard it might be when they show up in a mask.

I got a message this week from a woman whose mother has younger-onset Alzheimer’s. Her mother is progressing quickly. One day she could brush her teeth; the next day she couldn’t. She struggles to remember her daughter. Her daughter knows that by the time she is able to get back into the nursing home her mother will likely have forgotten her name. She’s unsure of the other changes that will happen during the separation and is bracing herself for the version of her mother she will meet when she returns.

An older man sent me a message about his wife, who lives with dementia in a memory care community. He usually spends most of the day with her, and he is there to assist her in eating her meals. He was told this week that he wouldn’t be able to visit for an indefinite period of time. He told an employee that if his wife won’t eat, it helps to sing to her, particularly “You Are My Sunshine.” Oh, my heart.

I know someone who works as an activity director at a nursing home. She coordinates a Sunday church service in their chapel. Pastors in their community rotate in preaching the service. She left some messages for the pastor who was supposed to preach last Sunday to tell him not to come. He showed up anyway because, “God will keep us safe.” He was not allowed in the building.

I’m sad for those who will be fighting for their lives because of coronavirus, but I know that our important precautionary measures will cause individuals and families significant pain and trauma that isn’t physical. There’s no way around this.

If you have any experiences related to nursing homes and coronavirus, I want to hear about them. Please comment below. I don’t have any answers, but I want to know what this is like for those of you directly impacted.

I’ll have time to read all of them. After all, I’ll just be sitting here at home. Trying not to get COVID-19.

 

 

12 thoughts on “Nursing Homes and the Coronavirus”

  1. Thank you so much for this post and for giving everyone an opportunity to share their experiences and opinions. I totally understand the feelings of those who would rather risk exposure than lose that human connection with their loved ones. It’s such a tough call. The hard part is that if we were to expose our loved ones we’d then be exposing everyone in their facility as well, and not everyone has the same opinions on whether they want to run that risk!

    I was used to visiting my mom twice a day, so this has been incredibly hard. I was actually feeding Mom lunch on Saturday when the staff got the news that they were shutting down completely. No one really knew what to do or how to handle it since I was already there, so they just gave me the news as kindly as they could and told me I should head out ASAP. It was the day before Mom’s 74th birthday. I’m generally not super emotional about mom’s disease in front of the staff, but I couldn’t help just hugging my mom and crying. It’s not knowing when I’ll get to see her again that’s the hardest. My mom is now nonverbal and generally pretty unresponsive, but her face still looked concerned when she saw me cry–she was a counselor in her career and is still very much an empath. The other residents at our table (who I am very close to and eat with every day) were also so concerned by my show of emotion and were ready to go to blows with whoever caused me pain. It was so sweet. I love all of my friends with dementia and miss them all so dang much.

    My mom’s facility has been great about trying to keep me connected, but because my mom is so far along in her disease (she was diagnosed in 2010), Facetime hasn’t been very effective. The only way to connect with her is holding her hand and smiling at her and feeding her–which is why I’ve always done it every day. I’ve tried having the staff bring her to the window in her room and then standing outside and waving. That would definitely be upsetting for some residents, but it seems to elicit a little more response from my mom than Facetime, and at least she’s seeing my face. That’s one of the main reasons I have always gone to see her so frequently–I want my face to continue to be familiar. Even though she doesn’t really know who I am, she seems to recognize me as someone who loves her. I don’t know if there will still be a spark of recognition when I’m able to go back. In the last 6 months she hasn’t declined much at all (she’s been on hospice for about 17 months now, which is both good and bad, obviously), so hopefully she will continue to be stable for a while longer and we will resume our daily visits in a few weeks. At least that’s my hope. 🙂

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  2. My 33 year old daughter has a trach, is nonverbal, is developmentally a 8 month old. She has been in the nursing home for 9 years. I visit every day, sing to her, clean her face, hold her hand. Because she has developed congestive heart failure she has hospice care workers come to the nursing home in addition to her regular caregivers. They all love her. They are trying to do their best. But they don’t have time to sit and sing or notice her frequent seizures. Last Tuesday we were told no more visits. Even the hospice nurse is banned. I worry that I may never kiss my baby’s face again. The nurses send pictures but it isn’t the same. I know it is for everybody’s health but it is so hard just the same.

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    1. I have almost as deep a concern about the impact of the new policies limited congregational meals and activities in the homes. Sounds like residents sources of human contact have now shrunk only to interactions with staff or one on one interactions with other residents.

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  4. Thank you Elaine for all of your wonderful blogs, full of great information for all of us sorting out this dementia thing! We have two divorced parents living in two separate retirement homes. Mom, who is going on 95, is still pretty good though ‘losing it’ in a few areas. But she knows who all of us, and there are a lot of us, and for the most part can keep the grand kids and great-grands sorted. Her retirement home was locked down on Saturday at noon. Luckily several of us had been to see her just before and she’s good with email. Also, she has a balcony that looks out on to a walkway that’s about 8 metres away so we can check up on her from there once in a while. For my Dad, who’s going on 93, it’s a bit different. He has dementia, accelerated by delirium a few years ago. He knows who we are but does best with visits in person. He watches only one channel on TV – the news channel so is constantly bombarded with COVID19 info, much of which he mis-interprets. Phone calls are frequent and getting longer but we’ve seen where more than 4 days between visits can seriously affect his mood and he downward spirals toward depression. We’re hoping he understands the current situation well enough to stay upbeat. They were locked down Saturday, it’s now Monday and he’s getting impatient! We could be at this for a couple more months so it could be a long haul for all of us. Let’s hope everyone does their bit and we get through this as quickly as possible.

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  5. I just talked to my parents in a care facility on lockdown. They don’t remember when we talked by phone last, only that they haven’t heard my voice in such a long time. Dad said “don’t forget to call again. I need to hear your voice.” He sounded desperate.
    It was just Yesterday….
    I don’t have to talk long to soothe them but I will call more frequently. Several times a day if it helps.

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  6. It was very difficult to hear late Saturday that even essential visitors can no longer visit the memory care facility my mom lives in. I usually visit my mom every day. The staff where my mom lives has been very helpful so far, and set up a FaceTime call with us yesterday, and will daily at a set time. But often I would just sit with my mom and hold her hand as she dozed and woke, comfort her if she became frustrated, and exercise with the group (no more group activities, either). There are staff members who love my mom, and I am so grateful for knowing that. It just doesn’t replace my connection with her. And long term, it is not good for her well-being. It is a very difficult balance, safety and well-being. I don’t envy the decision-makers, but I think that balance will need to change at some point.

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    1. Jane, this is so similar to my situation. I know the staff is taking care of her as best they can, but they don’t just sit and hold her hand while she sleeps like I do. They have been great about facetiming, but my mom doesn’t respond to my face on a screen at all. I can only get her to smile when I’m there in person. It’s so hard and I miss her so much!

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  7. Surely Elaine, it’s all smarter of balance. It’s necessary to limit visitors, but inhumane to block indefinitely the ability of those living with dementia precious time with their loved ones. By the time the height of the the COVID-19 pandemic passes, irreversible damage will have occurred, or vital last few days/weeks lost forever. To restrict visitors, minimal contact only and strict hygiene standards, we can surely hang onto our humanity xx

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  8. We will send cards/notes and make phone calls to those who have access to a phone and can communicate.

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  9. This breaks my heart. And all I can think about it ‘will these sad and lonely people live longer, or will it just seem like it?’ If it were me, I would 100% take my chances, kill me with the virus if necessary, but don’t leave me alone confused and lonely.
    I have long thought about the circumstances of life – and what makes it worthwhile – and for me, which is my personal view and not one I would impose on others, is that I would prefer to live a shorter life that means something, than have more days filled with pain and sadness.
    My own mum was terrified of her Alzheimer’s diagnosis, both before it ever happened, and whenever she remembered it. She was lonely much of the time, and family circumstances prevented me from caring for her as I would have liked to. It seems that my sisters would rather she was alone than with me as they felt that would reflect badly on them.
    Mum often forgot me, as the youngest, when listing her children – and then the two older than me – as she relived the glory days of early marriage when she was happiest – and that’s okay. But she always knew my face and voice. And when she died with an obstructed bowel before she truly lost us or herself, I was happy for her sake, and mine, that her fear, sadness and extreme loneliness were over. By the time I got down the road, she had sadly forgotten I had even visited and felt like she had not received a visit that day, even though she enjoyed our ride out to the seaside or country, or wherever I took her.
    I don’t know what the answer is, but perhaps the question might me, ‘are we really doing the elderly any favours by condemning them to unprecedented levels of fear and loneliness for what must surely seem like a lifetime?’

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