As coronavirus cases continue surging across the country and preventive measures aimed at stemming its spread have dragged on, feelings of isolation, confusion, frustration, guilt, anxiety, grief and depression have taken a serious toll on all Americans—especially seniors and their caregivers. Everyone has faced challenges over the past year, but these difficult circumstances have also granted many caregivers a rare opportunity to reevaluate how they provide care and what they consider truly important in life.
The AgingCare Caregiver Forum is filled with people coming together to share their experiences, advice and support. We’ve compiled family caregivers’ best self-care tips, pieces of wisdom and words of encouragement for peers who are caring for aging loved ones (and themselves) while coping with the COVID-19 pandemic.
Coping With Caregiver Guilt and Grief During COVID-19
“Be kinder to yourself. If you’re feeling guilty, it’s likely you are putting your loved one’s perceived needs/wants ahead of your ACTUAL needs and wants. It’s OK to say, ‘I did the best I could. Let go and let God.’ No one lives forever and guilt is a wasted emotion when it comes to elder care. We will inevitably have good and bad days. Roll them all together and we have life. COVID-19 has made things weird, but it is what it is.” –Midkid58
“You sure aren’t alone in feeling guilty about not being able to see your loved ones. My mother has dementia and I was visiting her in her memory care home at least 2-3 times a week. Months ago, I suddenly stopped coming, so of course my mother must think I’ve abandoned her! It’s been sheer torture for me. I’m literally all she has left. But, this is my thought process: The best I can do is try to communicate with her on the phone, which doesn’t work well, and send her lots of emails with pictures of baby animals, which she likes. The staff at her nursing home assure me she’s fine. They send me pictures when they read her emails to her. I know she’s OK. This whole pandemic has definitely increased the rate of my mother’s decline, and I just have to tell myself that this is the path life was meant to take. It isn’t what we planned, but neither was dementia or a nursing home. I just take a deep breath and work with what life throws at me each day.” –Kitty19
“Many caregivers mistake the GRIEF of there being no good answer to a difficult situation for guilt. Not everything can be fixed. I heard an interesting NPR program about mourning, and some of the worst mourning is done when our elder is still alive but not who they once were. Guilt can often be used to prevent going to GRIEF, because with guilt there is the insinuation that something can be fixed, the snail can be saved. And when you go to grief, you know that nothing but time can take the sharp edges from what is pure grief.” –AlvaDeer
“Consider what is under the layer of caregiver guilt—it is sadness, grief, fear. Allow yourself to go to those feelings and really feel them. Then, visualize COMPASSION and GRATITUDE. Everything you have done as a caregiver is a form of compassion. Consider all that you feel grateful for: the care you found/provided for your loved one, the work it entailed, and loving memories. The way to deal with guilt—or any feeling, I believe—is to delve into it. Pushing it away makes it stronger and it stays until we allow it to ‘be.’ If you are so inclined, start a journal about these concepts/qualities/feelings. Or draw pictures, or make a collage. Whatever works for you to be with the feelings will help you heal and get through them. There is something healing about being in present time. Bring yourself back to the present—this quality of awareness is the key to being with yourself in the best of ways. Love yourself as your loved one does/did. Visualize them giving you a hug and thanking you for all you do and did. See or hear them say, ‘Thank you. You have nothing to feel guilty about, although I encourage you to process through it, my dear.’ ” –TouchMatters”
“When it comes to care decisions, do what is best for you. If you are overwhelmed and struggling to care for your loved one yourself, it’s time for placement. Look for the best facility possible and don’t feel guilty.” –NeedHelpWithMom
“COVID-19 AND grief is a huge struggle. Grief doesn’t go away, but your ability to handle it gets better with time. At some point, the good memories will outweigh the grief, but you’re always going to miss the people you love and who loved you.” –Hedgie
Preventing Caregiver Burnout During COVID-19
“Caregiving is never easy. COVID-19 does complicate it even more. No one is ever prepared for any of this. Feelings of frustration are completely normal and you’re not alone. I had my mom in my home for 15 years. I gave up my job. I missed out on lots of activities as well, due to caring for her. It is devastating watching a parent deteriorate. Frustration doesn’t mean that we don’t care for or love our parents, but it’s tough, really tough. I would suggest taking some time off, away from your loved one to get some rest. Hire someone to stay with them. And don’t hesitate to speak to someone about your feelings. I did that and received guidance that I truly needed. I appreciated having an objective perspective on my situation.” –NeedHelpWithMom
“You can still have a life, even during the pandemic. You can go for walks in your neighborhood, sit outside on the porch or patio, have a few friends over for drinks while still social distancing if that is important to you. I could go on and on. There’s lots to do and still be safe. Caregiving is tough, and we need breaks for our mental health’s sake. If that means getting out and having some fun every now and again, then so be it. I think that not taking time for ourselves is the biggest mistake that we caregivers make. It’s so very important. If we don’t, it takes a great toll on our mental and physical health. You’re just going to have to make yourself a priority. It’ll be worth it. I promise.” –funkygrandma59
“If you have ANY hobby or passion that requires enjoyable but intense concentration on a NON-VERBAL activity, give it a shot. If you can think of something that will give you a rewarding result, all the better. Crocheting? Piano? Making gourmet jelly? Macramé? Painting, crayons, sculpture, woodworking? OR go online and find a site where you can learn something BRAND NEW that you’ve always longed to learn but never had the time for. I think one of the WORST things about this pandemic is that NONE of us really know when we’ll be sprung. All the more reason why a mindless longish-term project is such a good idea.” –AnnReid
Facing Mental Health Challenges During COVID-19
“Being a caregiver during this pandemic adds a whole new layer of concern to what we do. My aging, ailing husband is at such high risk, I would feel horrible if I did something to bring it home to him. On the days when I know I’m short on patience and long on fatigue, I caution my husband that I’m cranky and crabby, so be advised. It helps him to know that if I snap at him, it’s not about him. That doesn’t make it okay, but at least he’s forewarned. LOL. Most of all, please don’t beat yourself up. You are doing the best that you can during an extremely stressful time. See if you can give yourself credit for what you are doing for your loved one. And try showing yourself some compassion and kindness. You’re worth it.” –Tenacity
“Next time you see your doctor, ask about an assessment for anxiety if you’re struggling. It is quite common in caregivers. The treatment can be phone counseling. You will be given certain exercises to quiet your senses. Most insurance covers treatment. Medication is a last resort. I got counseling 2 years ago. I keep an app on my phone with those calming exercises to get me through. I feel I am handling the quarantine of my mom in a facility pretty well.” –MACinCT
“When it comes to anxiety, music works wonders for me, as does reading gardening magazines or fast-paced novels. Small projects around the house help as well; just cleaning out an area can refocus the mind, which I think is the basis of avoiding and controlling anxiety. Tai Chi is relaxing, good for the body, but not demanding or potentially dangerous like going to a gym. I won’t deny that I often have sleepless nights, so I try to dream of my garden and the elaborate plans I have for it but probably won’t ever be able to accomplish. Planning is a good diversion. Or I think about how much worse things could be. Gov. Cuomo made some good points, citing the duration of WWI, WWII, the Spanish Flu and the Great Depression in comparison to COVID-19. I often remember my father’s tales of standing for hours in bread lines in cold weather, or my mother’s tales of being cold because they had no coal to heat the house. Perhaps because we haven’t experienced anything like this in our generation, we’re also not experienced in coping, and I won’t deny that it is frightening. I sometimes wonder how long I’ll be here if I become infected. That motivates me to inventory my possessions and decide who I want to have them as well as to start big cleanup projects. (I wouldn’t want my heirs to see all the accumulated fabric, yarn and quilting, knitting and crochet magazines and books I have!)” –GardenArtist
“I’ve had both depression and anxiety since before COVID-19, but isolating has definitely made it worse. Yet I have underlying health conditions so I’m afraid to go out too often if I don’t have to. I definitely rely on my faith to get through. I’ve also started taking at least one photo each day of a beautiful sunset, a pretty flower, my cat or dog, or delicious food—something that makes me smile.” –Martz06
“The isolation and inability to reach one’s goals and dreams is depressing me when I was already depressed from the last 13 years of caregiving. I feel so used to being locked down that this ‘sentence’ is just continuing in a different way with the coronavirus. But, we are being careful and hoping things get better someday. How long can someone hang onto hope when plans and dreams keep getting delayed and we are not getting any younger ourselves? I get through this the way I have been getting through the last 13 years... one day at a time.” –Katie22
Fighting Loneliness During COVID-19
“We use Facetime to stay in touch with Mom. Facetime is new for me, but my brother convinced me to get an Alexa device in her room at the assisted living facility (providing your loved one has Wi-Fi). You can test it at home and make sure it works with your iPad or iPhone. My mom gets confused with new technology (and also has dementia), but with the Alexa, you can just drop in anytime via Facetime/Alexa. Your loved one just has to talk—no need to push any buttons to answer or to disconnect. And you won’t need aides to help out. I also have a camera in Mom’s room (Arlo). This is a great peace of mind in checking to see if Mom is doing OK and to make sure the aide/facility is doing their job. The Arlo camera also has a microphone on it and I can speak to her that way as well.” –DeniMom
“I’m going through old emails or things that remind me of people I haven’t seen for a while, and then sending emails to them. This crisis makes it much easier than usual to make a ‘how are you doing?’ contact that you might otherwise feel a bit embarrassed about doing out of the blue.” –MargaretMcKen
“I divide my day into parts to combat loneliness. Morning is cooking, checking social media, coaxing mom to take a bath, and handling miscellaneous errands by calling people. Post lunch, I read online newspapers (only fun stuff, not bad news), do puzzles and read books from the library. In the afternoon, I have a snack, exercise/walk, clear the yard, or read some more. After, I have dinner and then watch Netflix/Prime. I do live with my family, but everyone’s in their own online world and not a lot of deep conversation is happening. All of us are just trying to get through the day.” –wearynow
“Try to set up a schedule for yourself so you have things to do every day instead of flailing about with nothing but your thoughts. Also, I know it’s harder to do in these COVID-infused times, but volunteering is so beneficial to everyone. Doing for others gets us out of our own heads and gives us a sense of purpose.” –MJ1929
Prioritizing Self-Care During COVID-19
“Although it’s not easy, you need to make yourself ‘un-lonely.’ I lose myself in a book at least once a day. I knit. It’s not much, but it’s enough. No one will take care of you but you.” –Ahmijoy
“Whatever your loved one’s needs are, you must still take care of your own needs first. Your immediate family is second, and then they are next. There is no one who has had to get through this long isolation before—at least not all of us at once. Our constant thoughts are almost all about COVID-19 concerns. We need to make extra efforts to make some fun or a distraction. You can even have some fun with your loved one if you both watch a funny movie or go outside for just 10 minutes. But it is very normal for you to need time apart from them. This need is ongoing, but the pandemic will subside, and we need to be persistent for the relatively short time and not lose our sanity. You can do that. For sure, none of us has been down this road before. We are traveling it with you.” –Sendhelp
“For what it’s worth, I wrote myself a personal manifesto to reinforce the right balance between supporting mum and surviving intact myself. Some of it follows. Hope it helps.
Remember, I CAN’T solve her problem. It’s insoluble. Her brain is broken. MY life must be my priority every day. She’s had hers. Mental and emotional serenity and physical health are the important priorities for me. Self-care (healthy diet, exercise & pleasures) are the ways to get there. My family should see me enjoying life.” –GardeningGal
“I am not going anywhere, not working outside home, and taking care of my 90-year-old mom. Doing a hobby helps; I do some crafting and writing. Get outside and work in the yard if you can. I’m also involved in an online Bible study. It isn’t the same as seeing people in person, but it helps.” –kbuser
“I totally identify with feeling like a prisoner in your own home. The COVID-19 situation has made things worse for people like us, as we want to protect our family and minimize going out, but in normal times the going out might be the only respite we get from caregiving. If you are spending all of your time caring for another person and very little or no time on caring for yourself, this is not good for you and that is why you are feeling so low. The most important thing in the current situation as well as in the future is to balance your caring responsibilities with some time for yourself to do something you enjoy or that makes you feel good. Ideally, have a place in your home that is your own personal space where you can go to when everything gets to be too much or when you just need a break from caregiving. You also need to find something that gives you pleasure to offset the daily grind of caring. My personal space is my garden, with gardening as one of my main pleasure-giving activities. I also have a room in the house that is mine and that I can go to for a rest, to read, watch TV and catch up on emails without being bothered by anyone else. Sometimes I find going for a walk helps too—alone, not with anyone else tagging along.” –Chriscat83
“My 84-year-old mother with mild dementia moved in with me in April. I actually reached out to a therapist to help me deal with my caregiver burnout and angry, depressed feelings. She encouraged me to put self-care into my daily routine. It has helped me take advantage of the morning time while my mom sleeps in. A friend in another state invited me to a ‘daily workout.’ We swap ‘sweaty selfies’ with no makeup for support and accountability. She’s been exercising for a while, but I am starting slow with a 30-day yoga routine in the morning. Then I treat myself to a healthy smoothie. I also started journaling my thoughts and made a list of ‘gratitudes,’ which help me remember some silver linings. When I journaled my gripes, it helped me see some small creative solutions to ease my stress. I have joined an online book club that meets in the evenings when my mom is watching TV, and I am intentionally reaching out via Zoom and text to friends near and far. These few activities have helped my mood tremendously. I needed to have some control over my day and some sense of autonomy to be able to sustain this new normal during COVID-19. Joining the Caregiver Forum has made me realize I am not alone—the feeling of being trapped and isolated is the worst!!” –marjolin
Finding Silver Linings During COVID-19
“At first I was a little guilty, but then realized that I deserve my time as well. Mom’s ALF allows one family member (or other contact) only during the COVID-19 quarantine. I could go every day but have let Mom think that it is limited visits as well. So actually it has been eye opening for me. Since she is in an ALF, she DOES NOT need me there every day. Now I have cut it down to once a week, and I think after the lockdown I may keep it at that.” –dazednconfused
“We are all in this together. Try to write down some nice things you are grateful for each day and make a tentative plan to get out, if only for a walk. Thinking about positive things helps chase away the blues.” –Mojdeh57
“I think the changes in the way we live and interact during this lockdown period have offered all of us a chance to take a good look at what we have been doing (and why) and make some decisions about what we want or need to do going forward. But beyond that, it has been more quiet, the pace has been slower, and (at least in my neighborhood) people are able to be out walking and talking with each other (although with masks or from across the street). Awful that it took a pandemic for us to be able to have the time to read, reflect, exercise, meditate, bond with the dog, rest, pray, or do some home projects, but it’s been an eye opener. Of course, it is horrific for those who are ill and those brave warriors who care for them. But for some of us, this has been a time of new clarity.” –daybyday27
What kinds of caregiving challenges have you faced throughout the coronavirus pandemic? Have you made any meaningful realizations about the ways in which you handle day-to-day routines and self-care? Read more about others’ struggles and successes and share your own experiences in the Caregiver Forum.