Category Archives: Awareness & Activism

Memorial Day reflections

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.

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Supporting caregivers during Mental Health Awareness Month

[Photo by Dan Meyers, Unsplash]

May is Mental Health Awareness Month, so it’s a good time to check in on the caregivers in your life, and if you are a caregiver, take what time you can for self-care.

According to Mental Health America, this month’s campaign is focused on “Back to Basics.” As we emerge from the pandemic, some people are realizing that while they physically survived the pandemic, their mental well-being may need tending. Caregivers who are feeling overwhelmed, stressed, depressed or anxious are encouraged to seek help. Not all areas of the U.S. have adequate mental health resources, so online resources may help fill some gaps.

While professional help is the best, don’t hesitate to reach out to family, friends and community resources. As difficult as it can be to talk about such subjects, it is imperative for one’s well-being to open up to a trusted person. Caregiving can leave one feeling very isolated, with few such resources. That’s where online communities can come in handy.

In addition to professional services, what caregivers need most to support their mental health is a break. Respite care is essential, but remains limited in availability and under-utilized. On my website, Respite Care Share, I have a list of respite care resources. Reach out to the public health agencies in your state to see what programs are available.

Don’t suffer alone in silence.

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Officer who injured woman with dementia during rough arrest sentenced to 5 years in prison

Still taken from video courtesy of The Life & Liberty Law Office

It seems rare that justice is done in cases like these so I wanted to give an update on a case that I’ve written about previously on The Memories Project.

A police officer in Colorado who used excessive physical force against a 73-year-old woman with dementia who had been accused of shoplifting has been sentenced to 5 years in prison.

The case went viral after the video of the rough arrest was released to the public and shared on social media. Karen Garner was accused by Walmart staff of trying to walk out of the store with $14 of merchandise in June 2020. Staff were able to retrieve the merchandise in question, but Garner walked away from the store before police arrived. Officer Austin Hopp attempted to stop Garner, who was confused and not cooperative due to her dementia. Hopp proceeded to slam Garner to the ground during the arrest, dislocating her shoulder. She was also hogtied and suffered a fractured arm and sprained wrist.

Garner’s ordeal didn’t end there. When she complained about pain at the police station, she was mocked and ignored. Hopp and two other police officers laughed about the incident, boasting, “We crushed it.”

You can watch the arrest below. Viewer discretion advised.

A female officer involved in the arrest has also been charged in the case and has a court hearing in June.

May is Mental Health Awareness Month so it’s a good time to advocate for dementia training for law enforcement. West Virginia Gov. Jim Justice signed a bill into law in April to establish dementia training for law enforcement. Every state should have such a training program.

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Tips on hiring in-home care aides

In order to honor our elder’s wishes to age in place, it’s important to make sure they have the proper support. That may include hiring in-home care aides to perform housekeeping and some basic medical tasks. This is especially true for those of us who are long-distance caregivers.

Finding a good fit can be a challenge. Some elders may resent the idea that they need help and sabotage any hopes of securing care services. Those with dementia may become more confused or combative with a stranger in the house. Even those who are willing to accept a care aide in the home may find their routines are disrupted, which may cause short-term distress.

I was fortunate that my mother’s aide, hired through a local home health care agency, was a wonderful woman who clicked with my mother. Not only did she offer my mother a helping hand, she offered her companionship. My mother had a very set way of doing things so I know she probably was a challenge for the aide at times, but I so appreciated the aide’s services. I knew I could trust her and that my mother was receiving the support she needed to stay in her home.

MarketWatch published an article that has helpful tips on what you should look for when choosing an in-home care aide. Beyond the basics like a background check, it’s important to know the aide’s skill set, availability, and career aspirations. Going through a home health agency can offer some peace of mind, but can be more expensive. Word of mouth can be a good way to find a caregiver in your community. When it comes to hiring a care aide, hands-on experience may be more key than formal education.

There are websites and apps that allow one to hire a caregiver remotely, which can be useful for long-distance caregivers but can be a bit more of a gamble without that in-person assessment. Long-distance caregivers should consider a video call before making any hiring decisions. Don’t overlook your gut instinct; if you feel an aide is not the right fit, don’t hesitate to take action. It’s not unusual to cycle through a few care aides before finding a good fit.

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CDC weighing new opioid prescribing guidelines

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.

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HFC’s Humans of Dementia Storytelling Contest for students is seeking submissions

HFC’s Humans of Dementia Storytelling Contest is open and will be accepting submissions through April 30. This is a great way for young people to share their experiences of caring for a loved one who has Alzheimer’s or other dementias.

More about the contest: “HFC invites high school and college students to submit written or photo profiles of someone you know who has or had Alzheimer’s or related dementias.”

HFC, formerly known as Hilarity for Charity, was founded by actor Seth Rogen and his wife, Lauren Miller Rogen. Lauren’s mother developed early-onset Alzheimer’s at age 55 and died in 2020. HFC’s mission statement: “HFC is a national non-profit whose mission is to care for families impacted by Alzheimer’s disease today, activate the next generation of Alzheimer’s advocates, and be a leader in brain health research and education.”

Please share with the students in your life who have been touched by Alzheimer’s and other dementias. Encouraging our youth to share their perspectives on this disease will help spread awareness and embolden younger generations to contributing to finding effective treatments and care options.

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Growing around grief

Photo by Nick Fewings on Unsplash

“Growing around grief” is not a new concept but I saw this image being shared across social media recently and thought it might resonate with others.

Dr. Lois Tonkin described the growing around grief process in a 1996 article. The concept is that our grief may not feel like it lessens over time, but our lives will grow around that grief.

You can see another visual depiction of this grief model in the TikTok video below. I like the idea that our grief, while sad and heartbreaking, can become the core of something beautiful.

@amagiovany

My interpretation of this model. Picturing this in my head has been helpful. #watercolor #artistsoftiktok #therapytiktok #griefandloss

♬ Only in My Dreams – The Marías

You can see more visual depictions of the growing around grief model on the what’s your grief website.

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When dying at home isn’t always the best option

Jp Valery/Unsplash

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.

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2022 Alzheimer’s disease facts and figures

The Alzheimer’s Association has released its 2022 Alzheimer’s Disease Facts and Figures report.

This year, the Alzheimer’s Association is taking a closer look at Mild Cognitive Impairment (MCI) and encouraging greater awareness and understanding of this condition and its relation to Alzheimer’s disease.

Here are some of the top takeaways:

  • More than 6 million Americans are living with Alzheimer’s
  • 1 in 3 seniors dies with Alzheimer’s or another dementia
  • In 2020, COVID-19 contributed to a 17% increase in Alzheimer’s and dementia deaths
  • More than 11 million Americans provide unpaid care for people with Alzheimer’s or other dementias and in 2021, these caregivers provided more than 16 billion hours of care valued at nearly $272 billion.
  • Fewer than 1 in 5 Americans are familiar with mild cognitive impairment (MCI), which can be an early stage of Alzheimer’s
  • About one-third of people with MCI due to Alzheimer’s disease develop dementia within 5 years of diagnosis

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Reflections on death being more about the journey than the destination

Photo by Greg Rakozy on Unsplash

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.

Visit The Conversation Project for tips and guides on how to start these important conversations with your own family.

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