If you are dealing with a nursing home or care facility right now, it is MADDENING. The officiousness and bureaucratese and fear of liability can make you question your own sanity. I wrote an email to my dad’s care facility today. I’m putting it below in case it’s helpful for other people. Remember, you are not losing your mind. This is as big a cluster@#@# as you imagine. The time to stand up for your loved ones and those at risk is now.
SO MANY thanks to Joe Osmundson for reminding me that I’m not losing my mind.
Please feel free to use as a template or share with others if it is helpful for you.
Dear Mr. XXXX,
Thank you for the note. As you can imagine, this is quite a difficult time for us. I know it is also quite a difficult time for all of you, too. XXXX has done a fantastic job working with my father for the last couple years, and for that, I am immensely grateful to everyone on your staff. It was clear that your staff loved my dad, and I could tell that my dad loved them right back. I’ll let other members of my family respond with their questions and concerns, if they have them. This is from me only.
I also want you to know that we won’t be pressing the question of him being tested any further. We had to turn the body over to the funeral home.
I want to make clear with you all where I’m coming from, because everyone I talk to at XXXX and at the state seems to be dismissing my concerns as unreasonable. I know that I am grieving, and that grieving people are notoriously difficult. I am really not trying to be one of those people. I don’t want to make anyone’s life harder than it is right now. This is a terrible time.
But there are two serious concerns I want to address here: One is about the way the facility has communicated with us, and the second is about the testing questions. I think that both of these concerns are vitally important for the safety of your staff and residents, who I care for deeply.
Regarding the first portion, here is what it looks like from my end.
1) We received notice of the first COVID case 5 days after your staff member tested positive (if I am reading that first email correctly, but that first email was hard to understand). My stepmother, sister, and I were also on the facility floor that day, and we had to email to discover that we should be acting like we were exposed.
2) After that, communication was better, but our concerns were always responded to with: “we are working with the city of Boston Health Commission,” which is great, but was never an actual response to our questions.
3) Understanding the unprecedented strain you are under, I used my contacts in government and health to try to find potential avenues for PPE and tests. I never even received a response to that email. I learned elsewhere that you had reached out to them. If you had contacted me, I may have been able to find solutions to any problems you may have had. But you had clearly decided I was not a helpful resource.
4) On the morning my dad died, when my stepmother called, the staff was pressuring us hard not to ask for a test. Given the communication thus far, this made me suspect more than anything that we needed a test.
5) In the condolence letter you just sent to me, you spelled my name — which is also his name — incorrectly. My dad in particular loathed this. It was one of his pet peeves.
6) These are unprecedented times. Everyone in the country can see that there is no leadership from the CDC or the federal level, and the state and city level is doing its best, but they are not set up to do this sort of thing without being able to trust the guidance coming from the federal level. As such, saying you are working with the city, while laudable, doesn’t necessarily make me or many of your client’s families feel better. It is time for XXXX, who does incredible work by coloring outside the lines, to take the lead where they can.
Regarding the testing and COVID, here is what I see:
1) I have been told that XXXX is doing all that you can, that you can’t take any more strenuous precautions, so getting my dad a test wouldn’t make a difference. I have also been on that floor. You all are doing God’s work, but the residents wander, they bite, they spit, they hit, they hug, they will go after your protective equipment. I can’t believe that it wouldn’t be helpful for the staff to know who has what, for when the precautions break down, as they inevitably will.
2) All that aside, it does not seem unreasonable to want to know how my dad died, and as you can see from what I wrote above, I am having trouble trusting XXXX during this outbreak to report the truth about his symptoms. This is not just because of the actions above, but because of a systemic problem worldwide of facilities trying to hide COVID. I know and love many of your staff. But I also know from personal experience what perceived pressure from administrators can do in a situation like this. People can hide the reporting of symptoms even if they aren’t directed to do so, because they fear what it might mean for their jobs. Anyway, you say he was asymptomatic. Let’s pretend that I fully believe that. Dying of respiratory distress does not seem asymptomatic to me. But anyway, I know what you are getting at. This is a common way for Alzheimer’s patients to die. If he died that way, that’s good news. I would want to know. This is why there is a test. I have been told by some medical professionals, including his PCP, that it is unlikely he had COVID if he wasn’t showing symptoms beforehand. Okay, but there is still so much we don’t know. We are just learning that it can cause sudden cardiac death, and he had heart problems. And because there is a lack of tests, if it is causing sudden deaths without prior symptoms, there would be no way for us to know, because we do not allow testing for people without symptoms. It is a self-fulfilling prophecy. It’s clear to me that no one knows what’s happening, and rather than try to pretend that we know what’s going on, we should assume that we do not and act accordingly. The best way to know would have been to get a test.
3) I spoke to XXXX at the city, who I’ve cc’d here, and who was also very helpful. He said, I believe (and I’m sorry if I got this wrong!), that the tests won’t work on people who are asymptomatic. I tried to confirm this with others. Every other expert I spoke to said that the tests definitely worked on people who were asymptomatic. Again, this is not about the city. But it is further evidence that no one knows what is happening, and XXXX needs to go above and beyond to protect its residents.
4) Given how unprecedented these times are, for the safety of your residents and staff, I do not think it is out of the question to train one of your staff to administer the tests. I hope that you do this to rebuild trust with families. It would go a long way towards doing so. Yes, you are not a medical facility, and I understand not wanting to become one. But everyone in the country is standing 6 feet from one another at the grocery store. Most people are working from home. The 110 Freeway, one of the busiest freeways in the world, is right outside my house, and it is empty. I have to go to my father’s funeral over Zoom. You are a facility with an outbreak of COVID-19. You can train someone to give a test. Or you can hire a nurse to come do it.
Again, I would just like to do all I can to encourage you to go above and beyond for the patients and staff. I thank all of you for all of your service to my dad before this, and I’m wishing you all the very best in this nearly impossible time!