Cononavirus ethics filter: visit my mom or no?
March 28, 2020 11:43 AM   Subscribe

My mother has severe dementia and is non verbal but still makes eye contact, responds to touch, reaches out to touch me, sometimes smiles or shows sadness. Just at the last possible moment before the epidemic locked us down, I moved her from 1.5 hours away to a dementia care unit 10 minutes from my house. Due to the increased precautions, residents are being left alone in their rooms all day. But am I putting her and other residents in danger if I visit?

My mom is on hospice, so unlike other residents, she is allowed to have one visitor - me. But the reality is she is not imminently dying - she could easily live for 2 more years. Yet it is extremely painful to know she is alone in bed all day with caregivers only coming in to periodically change or feed her. I have been visiting twice a week as some kind of weird compromise. I go straight to her room, wash my hands repeatedly, and massage her and feed her a meal - the only way to connect with her.

But knowing now the reality of asymptomatic spread, I know if I DO pass it to my mom, it could rapidly spread around the whole facility via caregivers.

I am in Oakland, a lockdown area, and mostly working remotely. However I do go in to work about once a week now and work is a hospital. My wife goes to the store for groceries. My kid has one person she visits with in person. So of course exposure can and likely at some point will happen.

What is the right thing to do here? I know there is not a definite right answer but I don't know how to think about this clearly.
posted by latkes to Human Relations (34 answers total)
This is really hard, but I think you need to stop visiting and I’m surprised you’ve been allowed to continue to visit to this point. Even if your mom’s quality of life is not great, this virus seems like a terrible way to die. And as you know, you are risking exposing not just her, but others in the facility.

I would ask her team if there is anything you can do remotely for them or residents (arranging food delivery or the like).
posted by LadyInWaiting at 11:52 AM on March 28, 2020 [23 favorites]

Yes! You are putting her in danger if you do this! You are putting everyone there in danger! You already know this! That is a definite answer!

It might help to think about it in terms not of how bad you would feel if you caused the virus to spread around the facility, but in terms of how righteously outraged and furious and terrified you would feel if you found out that someone else had behaved so irresponsibly and endangered your mother's life while you were being careful at home. Don't be that person.
posted by poffin boffin at 11:53 AM on March 28, 2020 [33 favorites]

I'm so sorry. Could your new compromise be having her caregivers put you on speaker phone during these changings and meal times? Your mom can listen to you talking, singing, or playing familiar music.
posted by Iris Gambol at 12:03 PM on March 28, 2020 [7 favorites]

I'm sorry you're in this position. You can't keep visiting her in person. You might draw some inspiration from this recent Reddit discussion about a son who visits his dad in a nursing home by sitting outside a closed window and talking on the phone.
posted by bright flowers at 12:04 PM on March 28, 2020 [7 favorites]

If I were in your position, I would take every precaution that assumed you have the virus, but still visit your mother. Meaning, wear a face mask when visiting her so you couldn't cough on her, wash, sanitize, etc. Obviously, this goes against the above posters, but I wouldn't feel "outraged, furious, or terrified" if I knew someone needed to spend time with a loved one in this condition (AND HAD PERMISSION FROM THE FACILITY) and tried their absolute best to not spread the virus. There are ways if you are sick to minimize the risk of transmission (and you are not sick!). We shouldn't let our loved ones exist (or die) this way. I doubt the caregivers are going to have the time to put you on speaker phone either which is why you have this permission.
posted by turtlefu at 12:13 PM on March 28, 2020 [15 favorites]

So of course exposure can and likely at some point will happen.

Do you want to be the cause of that exposure? That’s really all this comes down to (since it’s all that you can control), and I think you already know the answer.
posted by a box and a stick and a string and a bear at 12:20 PM on March 28, 2020 [1 favorite]

By visiting her, you are also placing the people in the hospital at which you work at risk.
posted by RobotVoodooPower at 12:24 PM on March 28, 2020 [5 favorites]

For whatever it's worth, latkes, this is probably harder on you than her. For your mom this at worst a binary thing -- there/not there. I don't believe she'll have an awareness of how long it's been in between visits the way you will. I'm so sorry you're experiencing this. <3
posted by kate4914 at 12:26 PM on March 28, 2020 [14 favorites]

At the very least I think you have to choose between work and visiting. You shouldn't be doing both.

Do also whatever you can to help the staff stay safe.
posted by bleep at 12:27 PM on March 28, 2020 [1 favorite]

I'd go, with every possible precautionary measure. Here's why. People in dementia care are unbelievably vulnerable to lax and even abusive caregiving practices. You don't even have a history with this facility to have personal confidence in it. You need to go at least a couple of times a week to make sure your mom hasn't developed some acute problem and to make sure that the staff knows that someone gives a damn about her well-being. (I'm guessing there are many people who even in healthier times have no visitors. Guess who is most vulnerable to neglect and abuse?)

It's not like the choice is between your mom being fed and cared for by aseptic robots or not. In this circumstance, you are carrying less than the risk of one additional employee (since you're not even there daily). If your mom was less vulnerable, or in a higher degree of care, I would say that the modest additional risk would not be justified. But as it stands, I think it is.
posted by praemunire at 12:43 PM on March 28, 2020 [13 favorites]

I disagree with the posters here who see things in such black and white terms. I have to accept that nursing homes are doing their best but the fact of the matter is that the aides and other staff are not from some corona free world so restricting or prohibiting visitors is really about reducing odds. Unfortunately unless, (and until, god willing,) there is surveillance testing it is impossible to know definitively if some one is contagious:

It seems to me that there is a large differential in added risk between someone who is hyper aware of the danger of contagion and who would take prophylactic measures to avoid it and just some random visitor or even a new agency aide or new hire especially when you consider that your contact will be limited to one resident.

If the rules in your state are the same as mine than I think it is ethical to visit as your mother is dying and that is what the rules allow. The technicality of when exactly her body expires is less important then the fact that the person she was and is is leaving imminently.

This pandemic has laid bare peoples terror of dying. You can see it expressed obliquely in behaviors that mount to the irrational (toilet paper,) and the Mask of the Red Death selfishness of some balanced by the yobbish denial of others. Humans are terrible at assessing risk and in this case cannot seem to disambiguate between personal risk that comes from becoming ill with the corona virus and personal risk that comes from the collapse of our health care system.

If I were a resident in your mothers facility and if I were to sicken and die from a virus that you inadvertently brought to me I might be sad about dying but I wouldn't mind in any real sense because to me the love that you clearly have for your mother more than outweighs the minuscule increase in risk because of your visit. As the person I am, were I to have a heart attack and perish for want of a health care system whose failure by some insane calculus accords to you some infinitesimal fraction of blame I will be totally OK with that.
posted by Pembquist at 1:33 PM on March 28, 2020 [18 favorites]

What is the right thing to do here? I know there is not a definite right answer but I don't know how to think about this clearly.

One way you could think about it is to estimate the chance that you are infected, which is an upper bound on the chance that you will harm your mother or someone in the facility. (Estimating how likely you are to transmit it given that you are infected seems very difficult, so you might just go with 100% if you are paranoid.)

I'm not going to tell you a number, because I think that if this is important to you, you should spend time to come to conclusions that you trust, using sources and reasoning you thought about and endorsed. Generally speaking, though, you can estimate a rough upper bound of the number of active true cases in Alameda County by using public data:

- The number of confirmed cases.
- Your understanding of the current testing regime in Alameda, combined with public data about the likelihood of the disease to produce symptoms severe enough to be tested.
- The current number of hospitalizations and deaths, combined with the CFR and hospitalization rate observed in testing-rich populations like China, South Korea, and Diamond Princess. (i.e. hospitalizations and deaths should be proportional to the number of true cases, even if proactive testing is nonexistent.)

Given the population of Alameda, if you think you are averagely susceptible to infection (probably false) you can then estimate a rough upper bound on how likely you are to be one of the true cases, and you can continue to update that estimate in the future as new information comes in.

Whether you trust your ability to estimate this more than you trust your intuition without any numbers is up to you. I didn't estimate any of the things I wrote above. My intuition without any numbers is, I would visit your mother if I were you. I think that in allowing you to do so, the facility is making a statement that they are willing to accept the risk.
posted by value of information at 1:41 PM on March 28, 2020

Visit your mother. You twice a week taking very high-level precautions don’t add perceptible risk compared to the employees who are in and out every day.
posted by mccxxiii at 2:06 PM on March 28, 2020 [2 favorites]

A key thing here is that, with all due respect to OP, there's nothing unique about what they're doing during their visits. Any answer we give to them could apply just as easily to the relatives or friends of every other resident at the facility. If OP can go in, so can all those other people too, and they will all swear that they are aware of the danger and being really careful.

It's also impossible to get consent from everyone that could be affected if an outbreak happens, including those who wouldn't get necessary medical resources because they were diverted to this facility.

The CDC gives clear guidance that OP should not go, in "Preparing for COVID-19: Long-term Care Facilities, Nursing Homes," under "Policies and Procedures for Visitors," which says "Because of the ease of spread in a long-term care setting and the severity of illness that occurs in residents with COVID-19, facilities should immediately restrict all visitation to their facilities except certain compassionate care situations, such as end of life situations."
posted by bright flowers at 2:10 PM on March 28, 2020 [9 favorites]

The CDC article goes on to say that, in the limited circumstances where visits are warranted, visitors to these facilities should be screened for "fever or respiratory symptoms" and should wear a facemask at all times during their visit. OP didn't mention either of these things. This leads me to think that, again with all due respect, neither the facility nor OP are qualified to evaluate the risk OP's visits are posing.
posted by bright flowers at 2:26 PM on March 28, 2020 [1 favorite]

What is the right thing to do here?

Acknowledging that there are a variety of perspectives here, I would say: "Practice social isolation, until you can get tested for antibodies, by which time policy may have developed to handle this."

We do not know how this develops or spreads, or who can spread to who else while being asymptomatic. The possibility that you might introduce introduce the virus to the facility, has potentially deadly and very serious consequences for dozens of people.

We do not know how this develops or spreads, so our only strategy here as a society is to practice social isolation. Not practicing social isolation has issues for both you, and those who you come into contact with, in terms of contagion. And just personally again, I feel that not taking social isolation seriously generates a large moral hazard at this time, in that other people might then see your actions, and also be persuaded to not take social isolation seriously as well. (For me, ignoring basic social isolation principles is in the same category as anti-vax beliefs.)

I had a parent with advanced dementia, they were in a care facility. I was too far away to visit, so I called regularly (once/twice a week). They did not recognize my name when I called. But sometimes I felt (and this was mentioned to me by a staff as well) that if I called when my parent was agitated, just the sound of my voice, and a scripted conversation I kept at my end, would calm them down a lot. A relative who did visit, told me at the funeral, that the parent really appreciate the calls as calls. The staff made a fuss of them, and so on. If you have a decent phone, in some ways, the interaction can be very intimate; I had all sorts of emotional connections with my parent, through the timbre and cadence of their voice through the handset, that I might not have had in a face-to-face situation.

Eventually a small injury that they had at the facility, led to an out-patient visit at a hospital, and led to pneumonia, and then led to their passing away.

Please do not go to the facility, as it will cause all sorts of stress for many others there, who are already beyond stressed out. Try the phone calls; you may even discover something new. As a tip, I found that having a fixed call schedule really helped, as I often found the same front desk person on the same shift, and this really smoothed the call. All the best.
posted by carter at 2:59 PM on March 28, 2020 [5 favorites]

You work in a hospital—perhaps someone there could give you better guidance?
posted by kapers at 3:10 PM on March 28, 2020 [1 favorite]

I'm generally in agreement with visiting your mom being OK (assuming extreme caution, etc.), for reasons that have mostly been discussed.

I would add though there's a bit of a middle ground. The Bay Area started shelter in place a couple weeks ago, and while I don't think we'll be "normal" anytime soon, the hope is we should see cases cresting about now. Which will be apparent in a few weeks. (Note I don't mean by this the lockdown will be over by then.)

So if you think of waiting a few weeks and seeing further lowered risks, is that an easier tradeoff to ponder?
posted by mark k at 4:11 PM on March 28, 2020

While it's very true that the risk might turn out to be lower in a few weeks for that reason, it might also turn out to be higher, if the current set of countermeasures isn't sufficient. So if you wait, you should make sure you have realistic expectations.
posted by value of information at 5:18 PM on March 28, 2020

Is it possible to somehow play music for her or ask the staff to? It would be ideal if she were near a ground floor window that you could talk to her through, but I imagine that’s unlikely.
This sounds so hard. I’m sorry. I think you’ll need to take it one day at a time and one week at a time.
posted by areaperson at 5:27 PM on March 28, 2020

There's also the risk that you could pick up the virus from someone in the home and become ill yourself or pass it on to your wife and child.

I know it's hard, but the only right answer is to stay away.
posted by essexjan at 5:39 PM on March 28, 2020 [1 favorite]

Mod note: several deleted. praemunire, you made your point; drop it, please
posted by Eyebrows McGee (staff) at 5:54 PM on March 28, 2020

[edited after mods removed tangent on hospice care]

I'm sorry to be blunt, but you absolutely know what's the safest course of action, and you're morally obligated to make that decision on your mother's behalf. RIght now you're looking for someone else to give you permission to give in to your anxiety. She's safer from infection inside that place than you are outside. It may be true that she'll get exposed eventually, but you are hastening that moment every time you visit -- that's why "social distancing" exists in the first place! We're all going to get exposed to COVID-19, the entire goal is to stretch out that time window as widely as possible.

Any answer we give to them could apply just as easily to the relatives or friends of every other resident at the facility. If OP can go in, so can all those other people too, and they will all swear that they are aware of the danger and being really careful.

In other words, Act only according to that maxim whereby you can, at the same time, argue that it should become a universal law.

There is no justification we could give you or you could give us for your continuing to visit, that couldn't also justify so many other people visiting sick relatives, driving up infection rates precisely amongst two very vulnerable groups: sick people and health care workers. Your dilemma is real, but it isn't special. We're all feeling it. Stay home.
posted by The Pluto Gangsta at 6:01 PM on March 28, 2020 [14 favorites]

I disagree with the predominant sentiment here. This is one of very few cases where I would consider visiting, if you can be pretty certain you can keep other residents protected (wear gloves when touching any doorknobs, a mask, don't use the restroom there, etc.)

Your mother is probably suffering, confused, and terrified. Protecting her life isn't necessarily more important than lifting her from what may be extremely low quality of life. Even if it's temporary - she JUST moved, and change is scary in the clearest of mindsets. We don't know how she's doing, but it's likely that this is extremely hard, and that the loss of small familiar comforts may be devastating.

However, I agree with the above poster who said if you go, you stop going to the hospital, get groceries delivery, and restrict your child's activity as well. Everyone needs to band together in this time of crisis, especially when such clearly vulnerable people are involved. If you can't stop going to the hospital once a week, you probably shouldn't see your mother.
posted by namesarehard at 6:36 PM on March 28, 2020 [3 favorites]

Here is the thing. If she is over ~80, she is very, very likely to die of pneumonia. Coronavirus aside. That's what kills a lot of people who make it to their 80s. And she will get pneumonia after a cold or flu that she catches from someone. Someone who visits her.

It's ok. Go visit your mom, especially if you are generally quarantining otherwise. If she gets coronavirus, or you do, you will have no idea where she or you got it from.

Can you afford to bring her home to your house and have a in-home caregiver?
posted by amaire at 9:41 PM on March 28, 2020 [1 favorite]

I mean, at minimum could you cut down on your other sources of exposure? Do you really have to go to work once a week? Etc. We haven't left the house in over two weeks, are caring for two kids while working, etc.
posted by slidell at 10:07 PM on March 28, 2020

When the outbreak in the Washington State nursing home that probably started the Coronavirus in the PNW was big news, I definitely saw news footage of family members sitting outside of their family member's rooms while they talked on the phone together.
posted by bendy at 10:27 PM on March 28, 2020

You absolutely shouldn’t be going anywhere near any elderly care unit for any reason at all right now.
posted by tillsbury at 12:02 AM on March 29, 2020 [6 favorites]

Please don't go into a long-term care facility. Residents are extremely vulnerable to COVID-19. The death rate for residents at a LTCF in WA who got infected was 34%

posted by emd3737 at 5:45 AM on March 29, 2020 [5 favorites]

Call the front desk and ask them if you can FaceTime with her.
posted by oceanjesse at 7:07 AM on March 29, 2020

Response by poster: Thank you for sharing your perspectives. This is a life and death topic so I understand the strong feelings here.

For information: I am allowed to visit under CDC and facility guidelines because of her hospice status. And I have been taking more precautions than they have asked for. Phone calls, facetime, and sitting outside the window are of minimal if any value. While she can make eye contact, she doesn't always. Touch and my feeding her have been the ways we've connected.

That doesn't answer the question but some information to know.
posted by latkes at 8:11 AM on March 29, 2020 [3 favorites]

It sounds like you've already made your decision. Wash your hands before and after feeding her, wear gloves if you can easily get them, and go forward with what you feel is right.
posted by RainyJay at 1:37 PM on March 29, 2020 [1 favorite]

How about this: ask the facility's management, and your mom's primary doctor, separately, if they think you should continue your visits. If they enthusiastically support it, then you might be in the clear. If they say no, then you're not. If they're wishy-washy, then it's probably a no but they don't want to tell you that. They know your mom's condition and what you do for her and can better speak about it.

Also, on reread of your question, you wrote "it is extremely painful to know she is alone." I guess you mean, painful for you, personally. I'm not sure your emotional pain is enough to justify putting other people at serious risk. To put it another way, if an outbreak happened at the facility and you have to spend the rest of your life wondering if you were responsible for it, you might sleep easier knowing you did what you did because of medical necessity for your mom at the recommendation of her doctor, not because it made you personally feel better.

Again, I'm very sorry you are in this difficult situation.
posted by bright flowers at 1:48 PM on March 29, 2020 [5 favorites]

Where my mom lives they allow social distancing visits outside on the patios of the facility. I suspect that would be difficult with a patient with dementia since they would probably want to hug, but that is a possibility. My mom is almost 90 and eats in her room and hardly leaves except to take a daily walk around the outside of the building.
posted by OkTwigs at 7:56 PM on March 29, 2020

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