With each passing year, it becomes more difficult to believe so much times has passed since my mother’s death in 2015. Death has a way of warping time, so one can feel the distance of those elapsed years but also be surprised at the sharp pangs of grief that can arise at random moments.
I made an active choice to stay in the caregiver community after the death of my parents and have no regrets about that, but it does keep the illness and end-of-life memories fresher than perhaps they would be otherwise. What is most disappointing is seeing so many family caregivers dealing with the same bureaucratic roadblocks and healthcare challenges that I experienced.
I’m grateful to be able to share my caregiving story and read the moving accounts of other caregivers.
An unusual thing happened this morning after I published this blog post. As I came down the stairs, arms full of laundry, I turned to a portrait of my mother that hangs on the wall at the top of the staircase. I said, “Hi Mom,” and continued on my way. About an hour later I was in the kitchen when I heard a crash and then something tumbling down the stairs. When I went to see what had fallen, it was the portrait of Mom I had just acknowledged an hour before. Mom was never a subtle communicator. It would be just like her to make a dramatic statement. For now, Mom’s portrait has a new spot in the living room.
I was going through family photos ahead of Mother’s Day and opened an envelope that I haven’t look in very often because it’s photos of my grandmother in her casket at her funeral. My grandmother on my mother’s side died exactly 2 months before I was born. I had never noticed that my grandmother’s funeral date and my mother’s day of death were just a single day apart in the month dedicated to mothers.
Behind the funeral photos were a set of tiny photos, just a bit larger than postage stamps. I don’t remember seeing these photos before. They were of my grandparents at the grave of my beloved uncle, Jim Carroll, who died just before his third birthday. He died from complications after an accidental drowning. I can only imagine the pain and sorrow his untimely death caused. My mother was born the following year, and she always said that she believed God gave her a sense of humor to lift the spirits of the grieving family, especially her mother.
In the photos, my grandparents are older, so I can assume this was taken in the late 1960s or early 1970s. Little Jim Carroll died in 1936 but the decades that had since passed had not lessened the love for their beloved child.
I think of Jim Carroll often, as I have what is a most precious heirloom: his shoes. Still caked with clay, the tiny shoes were handed down to my mother, who was disturbed by the sight of them. I told her to keep them for me. Now they sit on top of my family memorial display, next to his moving obituary.
If you are grappling with family loss this Mother’s Day, I hope you can find some peace and comfort.
Whenever I come across realistic, compassionate depictions of the dementia experience I like to share them here. Paul Romero Mendez, the filmmaker behind a short film named “Ruth” reached out to me recently. His moving film was released in 2021. The film depicts a woman with dementia who is lost in her own home. Highlighting this experience is very important, because while remaining in the family home can offer those with dementia the comfort of familiarity, the disease may strip away the very memories that makes the home feel meaningful and safe.
Many of us who have had cared for loved ones with dementia have had to confront the dreaded request to “go home.” But home may not be what you think. If your loved one is in a memory care center, maybe it is their last home, but it could be their childhood home. Time doesn’t necessarily move in a linear fashion for those with dementia. One minute they may be back in their childhood, the next a young adult, and the next to the current time. My father often asked to go home when he was in the memory care center, but he also talked about going home to Northern Ireland to be with his sisters. So I don’t believe home was the condo in Ruidoso where my parents retired. Home may not be a fixed place in the way we think of it, but a feeling of love and contentment.
The film was shot in a single take, so the audience can understand better the swirling cloud of confusion that those with dementia may contend with on a daily basis. It’s a powerful depiction, filmed with compassion. You can watch the film below. (This is a different short film from the one I posted about in January, which is also called Ruth.)
It’s Read an Ebook Week. While I’ll always love the feel of pages in a physical book, I do almost all of my reading using my Kindle. It’s just more convenient for my lifestyle.
If you are an electronic book fan, this is a great week to take advantage of special deals. I’m participating in the Smashwords promotions. You can get The Reluctant Caregiverand CBD for Caregivers for just 99 cents today through March 11. Note: It looks like the promotion is so popular that the Smashwords website is experiencing some technical difficulties. If you get a broken link, check back later.
If you are looking for a digital children’s book, you can get Slow Dog for just $2.99 on Amazon.
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.
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.
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.
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 […]