Caregiving Grief and Overwhelm More Pronounced During Covid

BeRightThere
This has been one heck of a week. First my friend Raye texted to tell me that her mother, who has dementia, was suddenly moved to end-of-life care. After caring for her mother in her mother's home, she moved her mother to a memory care community. Raye had been unable to visit because of Covid-19 precautions–though hired aides had been visiting with her mother every day. Hospice finally said Raye could come for just one visit.

Then another friend, Julie, texted that her mother was moved to the hospital from her senior community because a UTI went too long undiagnosed and it was causing havoc with her mind and body. This on top of developing a care plan for her mother’s growing brain tumors with her doctors. 

And Patrice called me in tears because she and her veteran husband were going to be homeless. She was feeling tremendous guilt that she sold her current home to move to a new one. When the new all-wood home was being inspected before closing, termites and toxic mold was found. Now she and her husband, who is in his mid 70’s and has early onset Alzheimer’s, are going to be without a place to live and all their belongings were scheduled to be moved into storage at the end of the week. 



They say things happen in threes. This is a nightmare of three. From Raye who finally got to hold her mother's hand after months of waving from the other side of a window. Raye visited dressed in goggles, a surgery gown, gloves, and double face mask and was so unrecognizable to her mother that her mother thought her daughter didn’t care and wanted to know why she wasn’t visiting. Her mother passed away a day after their in-person visit…

...to Julie whose mother, refusing to eat, was diagnosed with pneumonia on top of the UTI and brain tumors and cried “why won’t you come see me?” on a FaceTime call held up by a compassionate nurse. Julie sobbed for an hour in my ear because she didn’t think she was ever going to see her mother alive again. The hospital won’t let anyone in. This is Florida, after all. Covid-19 is everywhere! 

The most disturbing part of all of these stories is the common thread that binds my caregiving friends together: Their family and friends have all become backseat drivers and hindsight quarterbacks on the caregiving decisions that these wonderful angels-on-earth have made over the last three to ten years of caring for their loved ones. 

People who haven't lifted a finger or made any contribution at all in any of these caregiving cases are now offering their thoughts on what would have been a better move. They criticize the choices made.

"Why did you sell your house?"

"Why didn’t you leave your mother at home?"

"You didn’t have to move did you?'

"Why didn’t you have someone checking for UTI’s all the time?"

All some versions of "why didn't you just do this or that" or some other idea that's much better than what the primary caregiver actually did? 

How, I ask, is any of this helpful? These women are devastated. Each of them have been the primary caregiver doing the day-to-day caring alone. Financially, emotionally, logistically alone for years and years. Each of them is responsible for making all the in-the-moment decisions for another human’s life. Someone we love has been unable to make their own decisions, and we step up. Are we experts? No. We do the best we can with the resources we have and what we can learn. We talk to each other. We ask the experts (doctors, lawyers, financial planners, therapists, counselors, etc.) We read and attend workshops and listen to podcasts when we are not too exhausted. 

I wonder, do these armchair quarterbacks believe that criticizing the past is helpful in any way other than to appease their own guilt about having done little to help all along? 

Raye is now re-planning a funeral. Everything was pre-paid and pre-planned, but in a Covid-19 world none of it is happening like it was supposed to. Her sister lives in Europe, and her brother has health issues and can’t travel. People will be attending by video. No wake. No normal religious rituals for burial. No friends and relatives from Italy where Raye’s maternal relatives live. Ten or fifteen friends socially distanced in a chapel built to hold 300 people for a 15 minute memorial and then a graveside ceremony (max 10 mourners) for burial. No people gathering at the home afterward to support the bereaved. Just two cats. And some caregiver friends that likely will not be able to hug Raye. Covid-19 is not just killing people but also killing all the ways we find support in grief. 

I have a request to all of you on the sidelines, from all of us on the frontlines: If you’re not helping day-to-day and in the thick of it; if you’re not part of the support team to provide relief for the bereaved or the primary caregiver, please do not make the situation worse by trying to heap guilt on top of despair. Please don’t second guess our decisions after-the-fact. 

Talking on the phone, visiting for an afternoon, and sending a check a few times a year does not supply you with enough information to make decisions on the necessary care for someone in crisis. Thank you for whatever you can do! Really, truly we are grateful. We appreciate your feedback all along as we make decisions and when we have time to reach out to explain what’s happening. In the interest of our wellbeing, whatever you can do to give us some time to just be a person instead of a caregiver for a bit would be a priceless gift. Whether it's funds to hire help, time to watch over our person so we can get something done, purchasing or lending tools to make our lives easier, or simply listening without judgment and accept that we’re doing the best we can. All support is most welcome. 

We know that you, too, are grieving. We get it. 

So often we hear people who visit for a week to give respite to a caregiver, “Oh, now I get it!” usually followed by either, “I don’t know how you do it all day, everyday” or, the most appreciated, “Thank you for taking this on! It’s obviously much more difficult than I thought!” And, really, the best response is, “You’re doing an amazing job! You must be exhausted! How about I send you to the Bahamas for a break and take over here for a while?!” (Hint, hint, hint.)

Fern Pessin is the author of “I’ll Be Right There: A Guidebook for Adults Caring for their Aging Parents.” She also blogs about her caregiving experience and shares caregiving resources on I’ll Be Right There.

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