With the passing of Queen Elizabeth and marking the 21st anniversary of 9/11 this weekend, I thought it would be a good time to discuss the complexities of the grieving and mourning process. As humans we often crave a blueprint for navigating difficult times. But as a recent article from Next Avenue points out, “Grief isn’t organized; it’s a mess and a natural human experience. There is no ‘normal’ way to grieve.”
I delved into the complicated relationships I had with my parents and how that impacted my grieving process in The Reluctant Caregiver. Diseases like dementia can also leave loved ones feeling conflicted; one may feel feel relief that their loved one is free of such a terrible disease yet still deeply mourn the person’s death.
Others may mean well but how one processes grief is an individualized process. What may seem “normal” for one person may be inappropriate for another. It’s also important to remember that there are many nontraditional family structures now and that we live in a time when people are more encouraged to share and process their family trauma.
For those who are grieving the loss of someone who they had a complicated relationship with, allow the feelings to flow naturally and try to ignore any societal expectations. If you would like help navigating the challenging journey, consult a therapist, grief counselor or grief support group.
While younger generations seem to be more open about discussing mental health issues and suicide, there doesn’t seem to be the same level of openness among older generations. According to the CDC, people aged 85 years and older have the highest rates of suicide. Middle-aged and older white men also are at increased risk of suicide.
For caregivers, suicide risk awareness not only applies to those one cares for but for the caregiver themselves. Older adults and their caregivers may be dealing with debilitating physical and mental health issues, which may cause them to also be socially isolated and lonely. As this report from Next Avenue points out, depression is not a normal part of aging. But older adults may be experiencing grief over the loss of loved ones, or worrying about financial issues or their own health problems. Loss of independence and cognitive decline can also factor into an increased risk for suicide among older adults.
Caregivers may suffer burnout while trying to care for older loved ones and raising their own families. Recent studies suggest that burnout can cause changes in the brain. Stress is linked to an increased risk of a variety of health issues. The report from Next Avenue includes a list of common depression symptoms.
This week is National Suicide Prevention Week. Below are some resources that you can use if you are in need of help or are trying to help someone else who is experiencing a crisis. I took some suicide prevention courses earlier this year and one of the main takeaways I learned was how important it was to be direct if you feel a loved one is experiencing suicidal thoughts. One should ask, “Are you thinking about suicide?” or a similar direct phrase. Being this direct can be challenging in certain cultures but with someone’s life potentially on the line, one needs to push through any social awkwardness.
The new national suicide prevention hotline number is 988.
What we’ve learned about grief is that it is a very personal, individualized process. No one grieves for the loss of their loved ones in exactly the same way. While plenty of guidance exists for those who are struggling through the grieving process, it truly is a journey we take alone.
When psychologist Carol Ellstein lost her first husband suddenly and unexpectedly, she developed a mantra to help with the grieving process. What she chose really resonated with me: “Grief sucks. Life goes on.”
I liked the realist approach, as it is what I embraced and wrote about in my book, The Reluctant Caregiver. This approach isn’t for everyone, but it can be liberating to stop trying to force yourself to see the bright side and sit with the meaning of loss until you’ve processed it enough to move on. That process may take months, years, or it may be ongoing for the rest of your life.
Mantras aren’t set in stone; they can be adapted along your grief journey. A friend of Ellstein’s offered a playful twist to her mantra by suggesting, “Life sucks. Grief goes on.” Ellstein found there were days as she was in the early, active grieving process in which her friend’s suggestion was fitting. She would offer herself more self-care on the days in which “life sucked.”
As time moved on, Ellstein’s mantra continued to evolve. By the second year after her husband’s death, her mantra became, “Grief still sucks, and life still goes on.” By year three, she found that she didn’t need to use her mantra as much, as she emerged into a new normal.
I hope Ellstein’s approach can be helpful to others who are embarking on that dreaded journey of grief. It does indeed suck, but there are moments of profound insight that emerge as well.
Those of us who have cared for a loved one with dementia know the roller coaster of emotions one can feel. Click on the post below from When Dementia Knocks to learn more about one common yet guilt-ridden experience: wishing for our loved ones to depart this world to finally be free of this terrible disease. I know I felt this more than once towards the end of my father’s life.
Last week, a caregiver told me something that she considered so horrible that she could only say it in a whisper. She told me about her husband and his Alzheimer’s journey. He had just moved from a memory care community to a nursing home. She wasn’t pleased with the care he was receiving. Their kids […]
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.