Andreas Laupacis is Editor in Chief of CMAJ.
I have brief phone calls with mom every 3 to 4 days, as visits to her nursing home continue to be forbidden. Thankfully, because of her dementia, she has no idea what COVID is nor that we are not visiting. She is unfailingly cheerful.
If mom died from COVID that would not be the worst thing that could happen. Her dementia is progressing so rapidly that her non-COVID future is bleak, and she was very clear about her wishes when she was lucid.
What would be terrible would be for her to die with inadequately managed shortness of breath. I worry about that a lot. When I was practicing as a palliative care doc, I’d see many people come to the ED from their nursing homes with shortness of breath. They had clearly indicated that they did not want life extending care, but they were in the ED because their nursing home was not adequately resourced to manage even the most straightforward end of life symptoms.
That was pre-COVID. What’s going to happen during a COVID pandemic? How are mom’s symptoms going to be managed if she gets short of breath? The most likely cause of shortness of breath would not be COVID but heart failure (common things are common in a 94 year old lady). Either way, she doesn’t want to go to hospital, nor should she. Does her nursing home have an adequate supply of end-of-life medications and the personnel who know how to use them?
I’ve just emailed the nursing home to find out. I’ll let you know what I hear.
Two images have particularly affected me during the last three days.
The first is this one of Italian health care workers.
Every time I look at these four people, I am humbled. And then angry. Because the photo makes me think of that idiot in Miami who boasted he doesn’t give a shit about social distancing. Macho man intends to party on. Who is going to care for him, and the people he has infected? People like this. And some of them are going to die!
The second image is this one.
Two incredibly gorgeous kids. It was emailed to me by a clinician working in the general medicine ward of a hospital. We hadn’t talked for a while and the email came more or less out of the blue. Its title was “The kids” and the email consisted of one line. “Hope you guys are well and stay safe.” That expresses it all. Anxiety that things may not go well. Worry about our loved ones. And reaching out to those we care about.
Suzanne
Thank you so much for your thoughtful words. I too worry about adequate palliation in this new world we live in. My beautiful, brilliant 25 year old son lives with me (and I am a family physician) and he has Duchenne’s Muscular Dystrophy. He will not survive Covid should he get it. I saw him desaturate and struggle to breathe at home last year and I saw the look in his eyes. Fortunately he recovered with the help of equipment I have at home. But I never want to see that again and if (or maybe when) I do, I need him to have me by his side and be surrounded by love, even if he dies. I am preparing myself practically and mentally to keep him at home should he get Covid (probably from me) for he needs to die as he has lived…..never alone and always surrounded by love. I hope I have the strength.
Jan MacPhail
Beautifully said with perfect images. Good work. Thank you
Mike Bouffard
Helpful and hopeful, thanks.
Mari-Spandelle
In a crisis, we all need a supportive net. All of us are weaving frenetically, to the best of our capacity. However, soul threads are stronger than ego threads (ingredients: 80% love, 15% respect, 5% spandex). In the midst of our constant mental babbling, your comment did just that for many of us, obviously! Empowering, thanks to you
Patricia Laplante
Thank you for your honest empathetic and impactful comments. I a living with the same feelings of helplessness with my mom, 83, while maintaining my sanity with a 4 and 5 year old. They all need me but differently. The WFH things seems to pale given what’s going on. I look forward to your posts! Thank you!
gabi
Thank you for these posts. For people in other fields of work, they are revealing, humbling and a reminder of what the stakes are, in a way that’s different from what the newspapers and general media are saying. Not sure if you got any other reactions – please, please keep talking to the world. I need to hear people like you. ( I guess I should say write and read 🙂 …)