Tag Archives: death

‘All the Little Things’ caregiving photo essay delivers big emotional impact

Highlighting the challenges that come with caring for a family member in which you have a difficult relationship dynamic is an issue that is important to me. I discuss my own challenges when caring for my mother in my book, The Reluctant Caregiver.

Lori Grinker has created a moving, powerful photo essay, “All the Little Things,” which is about caring for her mother Audrey. The mother and daughter faced a trifecta of challenges: Audrey was already dealing with dementia when she was diagnosed with cancer at the beginning of the COVID-19 pandemic. Grinker and her mother had always had a strained relationship, but the pandemic delayed a move into an assisted living facility, so mother and daughter lived together for three months. Grinker not only captures images of her mother, but of objects in her mother’s apartment. Those objects sparked memories and discussions that allowed the pair to open up the lines of communication more.

One of the objects that jumped out at me was the worn baking sheet. I remember my mother having a similar favorite baking sheet that she never wanted to discard no matter how discolored it became.

Grinker’s work was awarded the 2022 Bob and Diane Fund Grant. Grinker was also recently interviewed by NPR.

Life isn’t a Hallmark movie, so one shouldn’t expect an “all is forgiven” ending. Grinker told NPR that she and her mother were able to find some love for each other and most importantly, Grinker says she no longer harbors anger for her mother’s actions. She told NPR even if she cannot forgive her mother for some things, she now understands some of her mother’s life choices better.

Audrey died in March 2021.

Photo by Dollar Gill on Unsplash.

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Marking 11 years since my father’s death

It has been 11 years since my father died. The weather is similar as it was on that day, a chilly rain, which in turn is typical Irish weather and reminds me of my father’s homeland.

The moment I received the call from my mother that my father was gone is forever embedded in my memory. The death of a parent is one of those world-stopping moments. It’s not something you get over, but the tide of life will continue to push you forward.

Witnessing the devastation of Alzheimer’s disease first-hand in my family prompted me to become an advocate for finding effective treatments and for better support of family caregivers. I join many others in those causes and I’m grateful for the connections I’ve made through the years.

Sharing your dementia caregiving stories is important and I hope you will continue to do so, whether it’s through a blog or other outlet. I know it’s not always easy to share such personal details, but putting a real face on a disease that has long been kept behind closed doors is essential in raising awareness and building public support for better treatments and services.

My father mattered and so do your loved ones. When those difficult anniversaries come, embrace the good memories and use the tough ones to inspire you to push for change.

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Complex relationships can complicate grief

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.

Photo by Mike Labrum on Unsplash.

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Suicide risk among older adults deserves more attention

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.

The American Foundation for Suicide Prevention offers resources and information on local community chapters.

The National Council for Mental Wellbeing offers a variety of resources including Mental Health First Aid training.

The National Alliance on Mental Illness offers this video with tips for caregivers.

Photo by Dan Meyers on Unsplash.

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A mantra for those who are grieving

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.

Photo by Nick Fewings on Unsplash.

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Stuff You Only Whisper — When Dementia Knocks

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 […]

Stuff You Only Whisper — When Dementia Knocks

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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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Marking 7 years since Mom’s death

The top of Mom’s urn.

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.

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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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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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