The COVID-19 pandemic has left thousands of Americans motherless this year. One model shared in a study published in JAMA Pediatrics suggested the number of children who lost a parent due to the pandemic could be as high as 40,000, a staggering amount in just a year’s time span. On the other end of the spectrum, adult children grieve their elder mothers who died during the pandemic, some who must grapple with the extra pain of not being able to properly say goodbye.
Having lost both of my parents, I do find that Mother’s Day is harder for me emotionally than Father’s Day. I believe this is because my mother died in the month of May, just a couple of weeks after the holiday. My last memories of her before she became bedridden was reading her Mother’s Day card and admiring the fresh flowers I bought for her. Even though this year will mark six years since her passing, those bittersweet memories are still the first to surface when I’m reminded of Mother’s Day via the endless online ads and TV commercials.
For those whose mothers are still alive and perhaps will be seeing in-person for the first time in months due to the pandemic restrictions, I am so thrilled for you and I hope you have a wonderful reunion. We know now more than ever that each moment with loved ones is precious.
If you have a friend who may be grieving the loss of their mother, reach out and offer support in whatever way is meaningful to them. It can be a lonely holiday for those whose mothers are no longer alive, and acknowledgment from caring souls can mean so much.
Today would have been Dad’s 89th birthday. This year will mark 10 years since his passing. It’s hard to believe that much time has gone by, and how much the world has changed in just a decade.
I’ve always loved this series of photo booth shots. I wasn’t an entirely cooperative model but Dad’s beaming smile makes up for it. Dad rarely smiled in photos as he was self-conscious about his teeth, so the wide smiles in these shots are extra precious. He was definitely a proud papa.
Over a half-million deaths later, Americans may finally be ready to have more frank discussions about death. It is long overdue, and it pains me that it took a deadly pandemic to raise awareness, but perhaps it can be an important legacy of those who we’ve lost over the last year.
I’ve long championed the need to have “the talk” with elder loved ones, and how my parents’ refusal to discuss their end-of-life wishes created unintended but very real consequences. You can read more about my challenges in my collection of personal essays, The Reluctant Caregiver.
The pandemic showed us what many of us don’t want for our deaths: to be alone with no loved ones present, to be hooked up to machines, to die in a hospital instead of at home, to not be given a proper funeral or farewell ceremony. Hopefully we will take time to reflect upon these tragic, lonely deaths and take action now to better articulate what we would like the final phase of our life to look like.
Some may want to consider a death doula. Practically speaking, death doulas are helpers in all aspects of end-of-life care, from the bodily aspects of the dying process to spiritual concerns. They can assist with logistical issues, such as whether a client would prefer to die at home or in a hospice facility, and help coordinate burial and funeral plans. Doulas can serve as a comforting presence for both the dying and their grieving family. While it may seem awkward to bring in a stranger to what is considered a private family affair, having a compassionate, but clear-eyed presence can be a great benefit in an emotionally-charged setting. To learn more about this option, the International End of Life Doula Association offers a Doula Directory.
If you have not done so already, I hope you will take this time to think about how you’d like your end-of-life care to look and document those wishes. Encourage your loved ones to do the same. The coronavirus pandemic denied many the opportunity for a “good” death but by being more open in discussing a previously taboo subject, we can hopefully move towards a better end-of-life experience for all.
It’s the ninth anniversary of my father’s death, and that also means it is time for my annual PSA (public service announcement) about being gentle and non-judgmental with those who choose not to celebrate the holiday season because they’ve lost someone during this time of year.
The coronavirus pandemic that has claimed more than 300,000 lives in America will put a damper on this year’s festivities. But I also noticed the opposite effect, with neighbors putting their Christmas decorations up well before Thanksgiving. Both are natural reactions and we should respect the way individuals choose to cope.
This year as I reflect upon the anniversary of my father’s death, I remembered a detail I came across in a card he had attempted to write one of his sisters, but no longer had the cognitive function to address and mail. He had written in the card that he had been diagnosed with the swine flu. He had not received such a diagnosis, but the H1N1 pandemic was in the news at the time. Dad had latched on to that to explain what was happening to his body. That memory came back strong this year as the coronavirus pandemic unleashed its fury across the world.
Related to the pandemic and the need to wear masks, I also am reflecting on the fact that Dad would likely have been anti-mask. In 1986, when I was 12, wearing seat belts became mandatory when driving a vehicle in California. I remember many heated arguments in the car because of my father’s stubborn refusal to put on his seat belt. He claimed wearing the belt was constricting and made him feel like he was choking. Sound familiar this year? As an ill-advised compromise, Dad would drape the belt over his torso, but not latch it. Fortunately we never had any serious accidents. According to the Los Angeles Times, my father was part of the majority who at the time did not wear seat belts on a regular basis.
It has been the strangest and most challenging of years and the holiday season is no different. Connect with those you love however you can safely. Offer words of comfort and healing to the many who are grieving.
Many may have mixed feelings about celebrating Halloween in such a difficult year that has been filled with so much real-life horror and death. For those who have lost a loved one, the sight of neighbors decorating their lawns with grave and skeleton decorations may seem insensitive. For those who have children or others in their lives who love celebrating the holiday, it may be important to maintain some semblance of normality.
I definitely feel both of these perspectives when I take the dog on neighborhood walks. Some decorations are quite elaborate and creative, and make me smile. Then I feel an inward cringe when I see the grave markers with RIP stamped on them. I can’t help but think of all of the lives lost this year due to the coronavirus pandemic.
Personally, I love Halloween and enjoy the spooky decorations more than Christmas ones. But I remember feeling a similar ambivalence about Halloween the year my mother died, though she died months before the holiday. I instead focused on the happy Halloween memories we had as a family.
I also had a critical reaction to seeing Christmas decorations being put up at the hospital where my dad lay dying in the ICU. When you are in a family health crisis mode, your perspective narrows. How dare all of these strangers celebrate the holiday when my dad is dying? Realizing the world doesn’t stop for you is a tough, but necessary lesson to learn.
Happy Halloween to those who do celebrate, and hope you receive all treats and no tricks. And if you are grieving and struggling with seeing Halloween decorations, I understand. I hope you can have a quiet night honoring your loved one’s memory.
A free treat for all: You can get both of my books, The Reluctant Caregiver and CBD for Caregivers, for free through this Halloween giveaway.
Recently, I had a disturbing dream that on the surface sounds like a nightmare. In the dream, I saw my mother’s corpse. It wasn’t in a coffin, but placed on some kind of shelf. Then she woke up and began moaning and talking.
I remember in my dream trying to tell myself it was just a dream, as it is recommended to do to wake yourself from a nightmare. But instead of Mom going into full zombie mode on me, the dream took more of a domestic drama turn. Instead of being chased by a flesh-eating monster, I faced a chilling dilemma: how would I manage caring for my mother again? As with most dreams, there was no satisfying conclusion but lingering questions about housing and financial issues.
At least I know why I had such a bizarre dream. There was a story in the news about a woman in Detroit who had been declared dead but was found alive in a body bag hours later at a funeral home, where she was about to be embalmed. The images of the bodies of COVID-19 victims being stacked haphazardly in storage rooms and sheds has also haunted me.
It was a disturbing dream, but it intrigued me more than frightened me. This scenario has been played out in books and films but considering it from a caregiver’s perspective presents more practical questions than supernatural ones.
Five years ago today my mother died. It’s hard to believe that much time has passed. Following on the heels of saying goodbye to my dear cat last week, it’s a double dose of grief.
When I think about my mother, the visceral pain has dampened with the passage of time, but such a profound loss changes the landscape of one’s heart forever. As those who have followed this blog or have read The Reluctant Caregiver know, my mother and I had our relationship challenges, because we were opposites personality-wise. But a mother is an irreplaceable figure in one’s life.
There are so many people experiencing loss right now. Having experienced a variety of losses over the last decade, I can say that grief does transform over time. Grief is an individual process, and while the established stages of grief may offer some insight, be prepared to slide in and out of stages over time. One thing I have found helpful is to give meaning to the loss, to honor the significance that person or animal had in your life. This could mean designing an urn, writing a poem, planting a tree, etc. One meaningful way I’ve honored both of my parents is to engage in caregiver advocacy work, to support those who cared for my parents during their times of need.
For those who are grieving right now, I hope you are able to find a path that will lead you to some form of inner peace.
This is such an important conversation for the nation to have and it is a cause near and dear to my heart. As I state in the story, I am not anti-hospice by any means. My father died in a facility and that was a horrible death. But caring for my mother who died at home had its own unique challenges. Both experiences scarred me for life, leaving me with regrets and with a mission to help other families avoid the mistakes my family made.
I encourage everyone to read and/or listen to this series and think about your own situation. Family caregivers need to be clear-eyed about the demands they may face in caring for a loved on at home at the end of life. It can be the most tender of bonding moments, a final act of love and sacrifice for a beloved family member. Knowing the pitfalls and identifying potential gaps in care ahead of time can help you from becoming overwhelmed and burned out.
Finally, for those who did not have a good experience with home hospice care, know that you are not alone and it’s not your fault. Forgive yourself for anything you may be blaming yourself for (I’m still working on this part.) Your loved one would want you to let go and move on, free of guilt.
Whenever I learn of someone’s passing during the holiday season, I feel an extra pang of sympathy. Losing a loved one at any time of the year is devastating, of course. But there is something about loss during a period of such joy for others that is particularly painful.
Today it has been eight years since my father’s death. So much has happened since then, yet it’s still hard to believe that it has been so long since his passing. I remember how odd the Christmas decorations and Christmas music blaring everywhere seemed to be after I learned the news of my father’s passing. It’s a tough lesson to learn in such a fragile state: the world goes on without your loved one.
If you find yourself grieving this holiday season, cut yourself some slack. Don’t feel obligated to put on a happy front. There are many others just like you who feel conflicted emotions during this time of year. Hopefully over time, some happier memories will filter in through the grief. If you know someone who has lost someone during the holidays, reach out to them and offer your support.
I hope you and your loved ones have a holiday filled with peace and love.
The New York Times published an article this week that touched on a subject close to my heart. The article explores the impact of new data published this week in the New England Journal of Medicine that found more Americans are dying at home than in hospitals.
On the face of it, this sounds like good news. In poll after poll, the majority of people say they would prefer to die at home rather than in a hospital or nursing home. The tide now appears to be turning, and perhaps returning to a culture which embraces providing end-of-life care at home.
But the major challenge, which I’m grateful to reporter Gina Kolata for highlighting in her report, is the following: “Many terminally ill patients wind up in the care of family members who may be wholly unprepared for the task.”
This is something I’ve written about extensively, based upon my own family caregiving experience. My personal essay, Why Dying at Home is Not All It’s Cracked Up to Be, ruffled some feathers at the time. But my point wasn’t to be anti-home hospice. I think home hospice can be a wonderful service. The problem is that there are not enough home hospice service providers, especially in rural areas of this country. As the New York Times article discusses, this leaves family caregivers carrying the heavy burden of providing medical care for a dying loved one, while dealing with the financial cost and emotional toll of that experience. Most family caregivers are woefully unprepared.
“We have put a tremendous burden on families in the type of care they have to provide and the type they have to pay for,” said Dr. Sean Morrison, chair of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York.
With my parents, I experienced the worst of both kinds of deaths. My father died in a skilled nursing facility without any family members with him, and my mother died at home, with myself, the only child, providing her end-of-life care but lacking support from limited home health care services.
The New York Times article also discusses another downside of dying at home: pain management. My mother’s pain was not managed as well as it could’ve been in an institutional setting, and that will haunt me for the rest of my life. No one should have to suffer needlessly at the end of life.
If you want to learn more, I was interviewed recently on the challenges of dying at home by journalist Blake Farmer at WPLN, Nashville Public Radio.