As we honor our fallen military members this Memorial Day weekend, our somber mood extends to the deadly school shooting in Uvalde, Texas.
Comparisons to Sandy Hook make me think back to December 14, 2012, and of my mother, who awakened from major surgery to news reports of the mass school shooting. We watched the tragic news unfold on the TV in her hospital room. My mother was more concerned for the children, and for their parents, than she was about her own physical health.
Almost a decade later, more children have died. More families are grieving. More somber anniversaries have been added to our national calendar. One of the most profound ways we could honor the sacrifice our fallen military service members made for America is by working to reduce the amount of mass shootings.
I hope you get to spend time with your loved ones this weekend. After a week such as this, time spent with family becomes even more precious.
It has been 7 years since my mother died. The pandemic has made time’s passing more difficult for me to track. Seven years feels both not long ago and yet another lifetime ago. I think my mother would be very upset about the state of the world right now, as she always looked for common ground and the good in people. Those things seem to be in short supply these days.
I did have a moment of synchronicity today. I was listening to Glenn Campbell’s late masterpiece albums, Ghost on the Canvas. It was recorded after Campbell’s Alzheimer’s diagnosis and was one of my mother’s favorite albums. It’s one of my favorites too, and I’ve listened to it dozens of times. Today I played it on the YouTube app on my TV and when I looked up during one of the instrumental interludes, I realized the song was titled, May 21, 1969.
I had never noticed this before! According to information I found online, May 21, 1969 was the date the date Campbell’s network variety show debuted on network TV. It would become a hit and known as “The Glen Campbell Goodtime Hour.”
What are the chances that May 21, the day my mother died, would also be in a song title of one of our favorite albums? The moment felt like Mom’s spirit connecting with me through the wonders of the universe.
Anyone who is dealing with chronic pain or caring for someone with a chronic pain condition being treated with opioids will want to pay close attention to the Centers for Disease Control’s updated opioid prescribing guidelines for doctors.
The public comment period has ended and a draft of the guidelines has been completed. The CDC’s final recommendations will follow.
I all too well remember the 2016 guidelines. Doctors were warned about the upcoming changes in 2015, the year my mother died, and those guidelines (along with the doctors’ gross misinterpretation of the guidelines) caused my mother to die an agonizing death. Others sadly experienced a similar fate. Some people who had been on a successful maintenance regimen of opioids found themselves suddenly cut off by skittish doctors. Some people turned to the illicit drug market. Others committed suicide because they could no longer endure the pain.
NPR reviewed the draft document of the revised CDC guidelines. Officials blamed doctors for misapplying the CDC’s 2016 guidelines, saying it was supposed to be a “roadmap” not a “rigid set of rules.” But it’s difficult to put all the blame on doctors across the county who apparently were in fear of losing their medical license if they didn’t follow the CDC’s guidance. Clearly something or someone made them fearful enough to go against their medical training and harm their patients.
America’s overdose crisis prompted the stricter prescribing guidelines in 2016, and states in which opioid overdoses were epidemic passed laws to further restrict opioid distribution. This knee-jerk reaction, after these same states welcomed a flood of opioids from Big Pharma for years, had an unfortunate outcome for those who did use opioids responsibly to treat chronic pain conditions in which no other medications were effective.
My mother had intractable cancer pain in the last several months of her life. The CDC guidelines were not supposed to be implemented for those with cancer. But my mother’s doctor didn’t believer the cancer had returned and that she was dying. She believed my mother had become dependent upon the drugs and started limiting her prescription until she finally let my mother’s opioid prescription run out while the doctor was on vacation. My mother suffered mightily because of the doctor’s misinterpretation and fear of the CDC guidelines.
The 2022 guidelines make some improvements, according to pain specialists interviewed by NPR. There is no specific limits on the dose and duration of an opioid prescription. Clinicians will be encouraged to use their own judgment in deciding what is a safe and effective dose for each patient. And the CDC will stress more clearly that the guidelines are not “intended to be applied as inflexible standards of care” or as “law, regulation or policy that dictates clinical practice.”
While the new guidelines still discourage opioids as a first-line therapy for common acute pain conditions and for chronic pain conditions, it does acknowledge that opioids can play a role in chronic pain treatment, especially if other approaches have been tried.
If you or a loved one is running into issues of doctors not willing to manage your pain properly, keep pushing. Find another care provider. No one should have to die in agony because of bureaucratic guidelines. As NPR points out, the 2016 prescribing guidelines didn’t have the intended effect of reducing opioid overdoses. All of that suffering, all for nothing.
A New York Times article published today discusses a topic near and dear to my heart: the challenges of dying at home.
I have written about this topic extensively, including in my book, The Reluctant Caregiver. I also published an article, “Why dying at home is not all that it’s cracked up to be,” on The Caregiver Space that generated a passionate discussion. Some people thought I was anti-hospice, and that definitely isn’t the case. I think home hospice care, when it’s available in a well-funded and well-staffed form, is a wonderful concept that can support a good death.
But as Paula Span points out in her NYT article, there are challenges and limitations in real-world home hospice care. One issue that I can personally relate to is pain management. My mother suffered because I could not adequately manage her cancer pain at home with the drugs available to me. There was also the battle with her doctor just to get her enrolled in home hospice, which came much too late to be effective.
Caring for the dying at home can be physically strenuous. I struggled to move my mother in bed to change sheets and prevent bedsores. Before she was bedridden, helping her to and from the bathroom was also a challenge. I was a 40-year-old woman in decent shape. But for elder spouses of the dying who may have health issues of their own, it can be overwhelming and untenable.
Palliative care specialists at Harvard Medical School recently published an article in the New England Journal of Medicine suggesting improvements to hospice care, and I agree with their recommendations. For those determined to die at home, it’s essential to have have sufficient home health care services so that families are not overwhelmed. This includes nursing care and personal aide services but also equipment like medical beds. The authors also suggest alternatives that are underutilized, such as inpatient hospice care. This was a suggestion that was made in my father’s case, but there was no bed available at the time of his hospital discharge, so he was sent to a skilled nursing facility instead. We met with the inpatient hospice representative and I appreciated the personal aspect of the care, wanting to get to know him, asking what kind of music he liked, etc. I so wish he could have died in that setting. It’s what I would want for myself.
Hospice units within hospitals is another alternative. This offers access to end-of-life care such as pain management but rooms can be configured to be more home-like by removing unnecessary monitoring machines and having hospice-trained staff provide palliative care. It can be a good alternative in areas without freestanding inpatient hospice facilities.
It’s important to think about these options for yourself and your loved ones now so that you are better prepared to make the best choice for your situation when the time comes.
I recently had the privilege of writing a blog post for The Conversation Project. My father died 10 years ago and in May, I will be marking seven years since my mother’s death. I’ve had a lot of time to think about end of life issues in the years since their passing and I’ve shared my perspectives here on The Memories Project blog and in my book, The Reluctant Caregiver.
In my post for The Conversation Project, A Good Death Is More about the Journey than the Destination, I discuss my family’s reluctance to talk about death and end of life issues, and how that impacted their end of life journeys, albeit in very different ways. My father’s death impacted how I cared for my mother, when just several months later, she was diagnosed with cancer.
Neither of my parents experienced the kind of death that I would want for myself, and that is why it has become such an important advocacy issue to me. Please talk to your loved ones, discuss your end-of-life wishes and document it all so that you can have some peace of mind when that phase of life is reached. What I wish for everyone is that you can find the time to simply be with your loved ones who are nearing the end of life, and not overly preoccupied with medical care duties. Just like at the beginning of life, it’s important we have those bonding moments at the end of life as well.
I’m a big fan of the Netflix show “After Life” created by and starring Ricky Gervais. While the subject matter and profuse profanity make it a show that not everyone will enjoy, I find its take on death and the grieving process refreshing and poignant.
The third and final season debuted this month and I was blown away by one scene in particular, which felt like my mother was speaking to me from beyond the grave.
As I’ve written about extensively on this blog and in my book, The Reluctant Caregiver, my mother was reluctant to discuss any end-of-life issues, but she did give me a poem she had copied by hand and said she would like that read after she died. She didn’t want any service and she chose cremation over burial so it was left to me, her only child, how to honor her wishes.
The poem she chose is the poem that is read during a very moving scene in the final season of “After Life.” When the actress began reciting the poem, I almost jumped out of my seat and my breath caught in my throat. The poem is fairly well-known but still, what are the chances that the poem my mother chose was the one that was recited on a TV show?
I chose to honor my mother’s wishes by not only reciting the poem after her death, but having it imprinted on her urn. You can read the poem below.
I had to say goodbye to my beloved Rosalie two days before Christmas. She went into respiratory distress and a large mass was found on her trachea, which was almost entirely blocking her airway and ability to breathe. Because of its location, her age, and her condition, there were no realistic treatment options. I decided to let her go while she was still under anesthesia from the diagnostic procedure so she could slip out of this world as peacefully as possible.
Rosalie came into my life at the worst of times (my mother dying) and departed during another tough period of my life. I was fortunate to get six years with her delightful spirit. She was by far the easiest cat I’ve ever cared for and very affectionate. While I’ve loved the timid cats that I’ve adopted over the years, Rosalie was not shy at all. Nothing much seemed to spook her. She lived every day soaking up the simple pleasures of life (sitting on the heat vent or napping on the heated blanket during the winter, enjoying food, being petted, knocking her favorite crinkle ball toys under the couch) and I would marvel at how content and relaxed she was no matter what strife I and/or the world was facing.
I may have jinxed her by thinking she could be my “20 year old cat,” because she had the calm and happy-go-lucky demeanor that centenarians often have. Alas, cancer claimed her just a month after her 15th birthday.
The day I adopted Rosalie I put aside my normal common sense and went with my gut instinct. It was just days after another one of my beloved cats had died and many people would have felt it was too soon to adopt another. The weather that day was dreadful and for any other event or task, I would have opted out. Navigating through violent thunderstorms, I arrived at the shelter and met with Rosalie just minutes before another adopter arrived asking about her. From that fateful beginning, Rosalie and I forged a special bond.
She taught me that sometimes rules and traditions are meant to be broken and she could have taught a master class in self-care. I will be forever grateful that the universe brought her into my life.
It has been 10 years since my father’s death. So much has happened in the past decade, but I’ll never forget where I was when my mother called with the worst news of my life, in the middle of the newsroom at the Atlanta Journal-Constitution. I had been waiting for that awful call for quite some time, and some part of me wished for it, because it pained me so much to see my father suffering in the late stages of dementia. But of course there was no immediate sense of relief upon my father’s passing, just sadness and regret.
I do still carry feelings of regret and guilt to this very day, and probably always will. I discuss this at length in The Reluctant Caregiver, and urge others not to judge themselves too harshly. In that spirit, I am taking a look back on what my father inspired me to do over the last decade.
I began this blog, The Memories Project. What began as a way to document memories of my father and process my grief has become the foundation of my dementia and caregiver advocacy platform. I have also met so many fellow caregivers through the blog and am grateful for their wisdom and their support.
I wrote a book, which was a life goal of mine. My collection of personal essays on family caregiving, The Reluctant Caregiver, won a gold medal at the IPPY Awards. An essay from that collection won the Rick Bragg Prize for Nonfiction from the Atlanta Writers Club. A story I wrote about my father, “French Toast,” was included in the Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias collection. I know my dad, a lifelong lover of books, would be proud.
I finally made it to Ireland and visited my father’s hometown of Belfast, Northern Ireland. This was at the top of my bucket list and has been one of the best experiences of my life.
The privilege of sharing my father’s story through a variety of outlets, including NPR, AlzAuthors, Caring Across Generations and the Aging in America conference.
The decade since my father’s death has been the most difficult of my life, but also the most rewarding. I hope that you can take time this holiday season to recognize and reflect upon the highs amidst the lows of your own caregiving journey. Give yourself the grace that you deserve.
The 20th anniversary of 9/11 is coming up and there will be many powerful reports, essays, and accounts written to mark the somber occasion. Remarkable pieces have been published over the years about 9/11, such as The Falling Man. An essay published in The Atlantic recently is one of the most well-written and moving accounts I’ve ever read. On the surface it’s about a family’s struggle with losing a loved one on 9/11, but peeling back the layers with both compassion and clarity, Jennifer Senior reveals much more than meets the eye.
One of the more interesting aspects of the essay to me is the impact that trauma and grief have on our memories. It’s a lesson that may serve dementia caregivers well. Getting the details just right may not be as important as how we are able to process past traumatic events in the here and now. Sometimes remembering a specific word is less important than conveying the meaning and emotion of the message.
Another important lesson learned from this family’s heartbreaking experience is that grieving can cause us to act in ways we don’t intend. Communication can become difficult. It’s important to give those who are grieving space to process what they are feeling. Be a compassionate listener. This essay captures in vivid detail just how different the grief process can be for members of the same family.
The 9/11 anniversary is coming at a time when our nation is reeling from the deadly coronavirus pandemic. There are many of us grieving right now. I would encourage all of us to remember that as we go through our daily interactions. A moment of kindness can make a big difference.