Caring for Aging Parents Under the Reality of COVID-19
I travel on airplanes a lot. Or at least I did before two weeks ago! Usually, my primary focus is on whether I can get a coffee refill and how much longer I can procrastinate doing work. So, basically, exactly the same as when I’m home minus the barking dog.
A big gust of turbulence can quickly change everything.
A bumpy ride doesn’t scare me, but it does refocus me, shifting my attention to the fact that I’m actually sitting in a tin can flying at 200 plus miles per hour 40,000 feet in the air and that there are other human beings with me. On the rare occasion we drop altitude suddenly, the worst-case scenario of plummeting out of the sky seems like a real possibility.
And now we’re all collectively plummeting out of the sky very suddenly. It’s hard to believe that a little over a month ago, I was getting ready to visit my dad on his 82nd birthday, checking on my daughter at college, making summer vacation plans, and pushing the gas pedal hard at work. But then, on February 29th, someone in a nursing home in Washington state died from COVID-19, known infections started to increase exponentially, and now here we are living out a really bad chapter in a history book from the future.
This is as fast and as big as change can get.
For me, this experience has been one of intense grief and worry. I’m worried about our daughterhood community, about our loved ones, about all frail and vulnerable people. I feel grief over a loss of vibrancy in our neighborhoods and economy, of lost jobs, and lost hope. In just this short period of time the trajectory of our lives has changed forever. There will be normal again someday, but it will be new normal. Frankly, I’m already nostalgic for the old normal.
Honestly, I’ve been struggling for the last week to find something useful to say to you all. I want to be able to offer lots of good advice and tips. But clearly this isn’t a “top five tips” kinda situation. Instead, here’s a little bit of what I’m thinking about right now.
I know many of you are terrified, like I am, about your parent becoming infected by COVID-19, and it’s also worrying to think about how you’ll take care of someone else if you yourself are sick. It’s even more terrifying to think about both of you being sick, or worse, passing it along. You’re probably already very well educated at this point on how to help your parents manage the basics, and how to protect yourself and your family – stay home, wash hands, etc.
But what happens when you face a non-COVID-19 emergency call? In the best of days, the loved ones we care for are much more likely to visit an emergency room or hospital. But now we really need to help keep them out of the physician’s office, emergency room and hospital. Not only do we need to preserve healthcare capacity for COVID-19 patients, but hospitals are now especially-contagious areas, to be avoided by frail and vulnerable older adults.
To help families cope with this new reality, the federal government has made some very big changes to healthcare coverage rules in just the last week – with the goal of helping you and your loved one get care at home as much as possible. Here are a few things to ask the physician about:
- Virtual Visits. Talk to the doctor to see if he or she will deliver something called, “telehealth.” The federal government just waived a whole bunch of rules to allow coverage for virtual physician visits.
- After Hours Care. Ask the doctor about whether you can get virtual help if something happens in the middle of the night. Calling 911 in an emergency is not a good option if there’s any way to avoid it!
- Emergent Care in a Skilled Nursing Facility (SNF). You no longer need a three-day prior hospitalization before admission to a Medicare-covered SNF stay. This means that if you feel like you need to go to the hospital, you could possibly go to a SNF instead and the visit will be covered. But, please talk to your doctor about this, in advance, and if you go this route, call ahead. SNFs vary significantly in what they can handle, and you want to make sure the facility is virus free and will take your parent without knowing if he or she is too.
- Nursing Home Quality. Medicare surveyors – the folks who go out and check the safety and compliance of nursing homes – are focusing on three activities to increase safety and infection control for residents. This includes responding to the highest need complaints and incidents only, conducting special surveys targeted on infection control, and providing a checklist facilities can use to self-assess their infection control.
Here are some other things the federal government is doing in Medicare and Medicaid:
- Copayments for COVID-19 tests are waived.
- Medicare Advantage plans have lots of flexibility to waive copays, prior authorizations, physician referrals, and copays on out-of-network providers. Don’t hesitate to call your loved one’s health plan and ask for their help.
- States can also greatly expand who can be a Medicaid provider and where they can provide services. This applies to long-term care providers, such as home care workers, nursing homes and assisted living. Check in with your State’s Medicaid website to see what’s changing.
I don’t need to share with you how important it is for all of us to stay healthy and to take special care to follow all the guidelines. If you have a loved one in assisted living or a nursing home right now, you’re understandably heartsick and worried. But please don’t blame the facility for following government guidelines to prohibit visitors. These buildings are all facing impossible and extremely challenging situations.
If you have mobile, relatively functioning parents, you have other issues and concerns – like convincing some of them to stay at home, and practice social distancing. This is as hard for them as it is for you – harder in some respects, since many of those you care for find great comfort in community, family, and stability.
I’ve scanned the internet for good resources and there are a lot. I really like the Caregiver Action Network’s website. But also, Denise Brown, at www.caregiving.com has a warm and welcoming place to go to get emotional and practical support. Also here’s a great article from our friends at dailycaring.com, Coronavirus and Seniors: What you Need to Know that you should definitely read.
I am encouraged by all of the acts of love we see in the news to lift the spirits of people living in assisted living or nursing homes, by the work that many of my colleagues are doing to make sure low-income older adults have enough food, and by the hard work of so many healthcare and long-term care providers.
Here at Daughterhood, we will be in close contact with our Circle Leaders to make sure we can serve our communities, despite social distancing. Maybe that will lead to better options for virtual connection in the future! We’ll be posting resources and information regularly on the Daughterhood Facebook page so please follow and check it. And finally, we welcome hearing from you.
First off, elderly, I’m not elderly! They said the elderly; people over 60 should be especially cautious. I’m 62. I don’t want to be sick. I can’t be sick. Who will care for my mother. We will both have to quarantine. It’s the only way I know to prevent my bringing it home.
I cancelled her annual Dr. apt. The one where they check her blood to be sure her thyroid medicine is correct. The Dr. won’t write a refill without it. Well maybe she will under these circumstances. What if we need medical assistance? I’m convinced if she is exposed to the system she will catch it. In the last 2 weeks she has fallen and she has a uti. I’m almost ashamed to admit my financial worries are just as great. Years of being a caregiver has interfered with my ability to work as much as I’d like to. My savings is now gone and her ss is not enough to live on. My therapist Cabernet used to calm my anxiety with a glass or two. Now I want the whole bottle. The latest talk about our medical system not having the resources to deal with this pandemic is more than disturbing. They are talking about deciding who gets the care and who’s life isn’t worth saving in comparison.
Your article was spot on! I’m feeling completely overwhelmed. Talk about multitasking in the worry department. Isolation! There’s a whole other topic.
My Dad is in assisted living with Parkinson’s and dementia and I have so much fear and sadness. I’m concerned about his well being of course. But I’m also scared of his physical and mental decline. I feel like we could miss the last time he remembers us or can walk with a walker. I’m crying a lot.
Martha, Please know you’re not alone. It seems like this is time when all of use are living always 3 seconds from tears.
We all need to talk with family (or whoever would speak for you or your elderly relative) about whether you’d want to be hospitalized or on a ventilator – and get those preferences written down. My own says something like – sure, try to save me – but not if the hospital is already overwhelmed with younger people (I’m 68) – then just get me into hospice quick! I think there are a substantial number of people, especially those a dozen years older than I am, who would feel the same – or if living with substantial illness and disability might not even want to go to the hospital if it is readily available. We need to talk! Go to ConversationProject.org for guidance on how to carry on the conversation. Go to MyDirectives.com to document your own or your loved one (and tell your family and your doctor that it is there).
I really appreciate your willingness to be honest and I think COVID-19 has made many people more willing to talk about dying and even if they don’t have a terminal diagnosis. Your share has power and another site is prepareforyourcare.org!
Fortunately, we are able to care for my Mom at home, but we have outside caregiver assist 3 days per week in the morning & 4 days per week in the evening, because I am recovering from hip replacement surgery. Normally, I take care of the 4 evenings & my sister-in-law does the other one & I do Sat & they do Sun. They handle the other mornings most times as well. I’m concerned about having outside help come in, who are seeing other clients too, but we don’t have a choice. We provide gloves & plenty of antibacterial soap. I’ve thought of masks, but as a former nurse, I know how hard it is to wear a mask for a long period. Any other ideas or suggestions?
Cheryl, It sounds like you’re doing all you can. My only advice is to keep doing what you’re doing trying to keep as clean/sterile environment as you can – I know none of this is easy.
Dear Lord stop the MEDIA from spewing the propaganda that is causing the pandemic to be worst than it is . That information on doctors deciding who lives or dies was debunked. The equipment is being put in place if you live in NY, WA or CA you may see greater numbers of the virus as they are testing more and more people. Your Mother and your life are very dear to many please don’t think any different. My advice as another caregiver is to shut off that TV or only watch old movies and turn on the news only once a day. Make sure you can decipher between facts and opinion otherwise don’t watch the news at all. When 17,000 people died from the swine flu we hardly even knew about it because the media did not mention it 24 hours a day 7 days a week. Great advice to set up a virtual doctor appointment too. You have to get your medications and a UTI will not go away on its own. God Bless you and your Mom this too shall pass.
consider the math. 17,000 deaths in a year verses 45,000 deaths from February 29 to now-45 days.
However I do agree that daily news is bad for mental health. take an on line class, watch virtual tours of parks, make phone calls. set a good example to the person you care for. try to be cheerful because sarcasm never helps.
I can’t help but feel that this time is also helping us all to reevaluate our priorities. Since this is global- and we don’t yet know the outcome- I’m feeling a lot more connected to my faith in God. It’s just too big to wrap my head around- so I have no option but to pray and give it over. I find peace in doing what brings me comfort – when I have some time- so I garden or plan my veggie patch. I keep busy especially in nature, because it reminds me that the birds still sing, trees still grow new leaves in spring, daffodils still pop up happy for sun and warmth. Birds are mating and building nests as they always have done – so we must also just keep going. Counting our blessings, living in the moment- and definately ignoring the chicken littles of the world who act as if they want the sky to fall. The media scares the hell out of my mother who is 90 and has already lived through WWII. I also work for people with disabilities, so I have not lost work, but I worry about my exposure to the virus, since some people aren’t being as careful about social distancing and think they can keep visiting and dropping off treats. I simply can’t get sick, I keep reminding God. As a wife of a man with Parkinson’s- who is now disabled as well- I have several people who rely on me. I understand fully how uncertain all of us are feeling, and how tired we are, and how great a glass of wine and a hot bath is after a full day. We NEED to take good care of ourselves- because as much as our people love us, they will need more and more. I know I will eventually have a limit. I will know I have done everything I could have- and I will go on. God bless all of you who are taking care of others. I pray that each of you has shining angels to lift you when you feel you can’t possibly do one more thing.
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My mom is 99.75. I don’t have any covid complaints, I just take strict precautions & tupdate myself once a week. She’’s on hospice and is completely covered by Medicare, at home where my brother & I are caring for her. Ok, I do wish extended family could visit. In the meantime we are her most important people, anyway. She can only manage her most ingrained phrases, like “I love you very much.” Or “Thank you.” And a few others, with the most loving look of gratitude on her sweet face. She’s fading. She’s consuming only 3 Ensures per day, not wanting any solid food. Sleeping 22 hrs a day. I see her body shrinking when I’m gently cleaning her. She’s in no pain or distress, and we aren’t either, in the large scope of things, which I am utterly grateful about, EXCEPT for the very core issue here. This remarkable woman who has so fiercely & tenderly loved us more than anyone on the planet is departing. I am watching this with my eyes, with my heart. realizing there isn’t help for that. We’re dealing with it together but separately, & will come to peace with it on our own. I suppose. Is there a blog for that? 🥰
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Hello There! Thanks for your wonderful information! My sister and I were needing some information regarding Covid and our mother who is 92yrs. old. She is currently living in an Asst Living Ctr., but my sister is thinking and praying about our mother coming to live with her. I would like to email your great article to my sister, and I’m listing her email information below.
Thank you & God Bless!
Pam Etheridge Luddeke
Thanks so much for this site. Figuring out how to handle a sibling who chooses to minimize the virus and who has now possibly exposed two frail elderly high risk parents to Covid as of this evening is my current life. I cannot sleep, it’s 3am and don’t know what to do. I begged her not to go to parents’ home after her husband came home with a fever. He delayed getting tested because he “wasn’t that sick”…but his work required a Covid test that took 6 days to get results. In meantime sister kept going to parents and having elderly mother drive HER all around. I begged sister to not go over until she knew what test result was. So here we are waiting to see what happens next. Sister hasn’t had a test! Ugh.
Anyone else have a sibling who makes it all SO MUCH HARDER?
So many great comments and stories! I care for my 89 year old mom at my home. She was diagnosed with covid after being seen in the ER for a hidden kidney infection. That was 10 days ago so I am crossing my fingers that we are on the way out of it. It has definitely been a struggle as I ended up getting the virus too. Much harder on poor mom though. Doing my best to be an effective caregiver, leaning on God more than ever. Eternally grateful for my mom and the sacrifices she made for our family..Good luck to us all.!!
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It has been a horrific year+ for all of us, but especially for seniors. Both of my parents were in a nursing home when COVID struck, and both died within 12 days of each other. The feelings of helplessness, of not being able to be there with them in their final days, is something that will stay with me. Thankfully we seem to be coming to the light at the end of the tunnel, but something for seniors and their families to seriously consider (as I wish we had) is care at home instead of in a facility. This article talks about some of the additional benefits, over and above of course keeping seniors safer from COVID-19. https://montebellocares.com/home-care-tips/
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Subscribed! and thank you so much for sharing this piece of article. We all learn how to deal with different challenges we might face and cope with them during a catastrophe. It’s good to know I’m not the only one going through the same things.