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.
This week, the U.S. Food and Drug Administration approved a new drug to treat those in the early stages of Alzheimer’s disease. The approval of lecanemab was welcomed by the Alzheimer’s Association, who urged the Centers for Medicare & Medicaid Services to cover the cost for its members. Some members of the medical community have a more guarded view of this latest Alzheimer’s treatment, encouraging families to talk to their providers to understand the benefits and risks.
Here are some facts to know about lecanemab:
The drug, made by Eisai in collaboration with Biogen, is for those diagnosed with mild cognitive impairment or mild dementia stage of disease and confirmed presence of amyloid beta pathology, according to the FDA.
In a study cited by the FDA, those who took the drug experienced a statistically significant reduction in brain amyloid plaque versus those in the placebo group. While the connection between the presence of amyloid plaque in the brain and Alzheimer’s is still up for scientific debate, the study also showed that lecanemab resulted in moderately less decline on measures of cognition and function than taking a placebo.
The drug costs $26,500 per patient annually. As stated above, CMS has not approved payment for the new drug yet, meaning that only those who can afford to pay for it out of pocket will have access to the treatment for now. The Alzheimer’s Association has formally requested that CMS “remove the requirement that Medicare beneficiaries be enrolled in a research study in order to receive coverage of FDA-approved Alzheimer’s treatments.”
What you should ask your doctor: Before starting lecanemab, it is advisable to get genetic testing to determine whether the patient has the APOE4 gene, because the study showed that ARIA events were more common in those with that gene. Those on blood thinners should also talk to their doctor about increased risks.
A doctor interviewed by CNN said that lecanemab is another tool that he can add to his toolbox for treating Alzheimer’s disease. Families considering the drug for their loved one should understand that overall the drug’s benefits were modest and weigh that benefit to the potentially serious risks of taking the drug. For some families, the potential to slow down the cognitive decline of their loved ones will be worth that risk.
Just like with cancer, we all wish for a miracle drug or other form of treatment that would offer an instant and complete cure for Alzheimer’s. The reality is more like taking baby steps in the treatment development process, but those small steps can grow into better care and results over time.
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.
I recently bought a pair of shoes that left me frustrated. The soles were coated in a material that made them extremely slippery, especially on hardwood floors. I purchased them online, and I read the first page of reviews, which were mainly good. But starting on around page three, the warnings about slips and falls because of the slippery soles began. I wish I had researched a bit longer!
Both of my parents suffered from falls as they aged. My father’s dementia made him wander at night, a recipe for disaster. My mother broke her shoulder after falling off the toilet in the middle of the night. Her arm strength and range of motion decreased after that injury. But falls aren’t just a risk for older people. I myself fell at the park last year, slipping down a small slope covered in leaves. I had a sore back for days.
This odd pair of shoes made me think about how important mundane details are when it comes to caregiving, like what kind of shoes are your loved ones wearing? For loved ones who shop online, it’s worth assessing to make sure they are safe for walking on a variety of surfaces. From now on, I will pay closer attention to the soles of shoes!
I had the recent pleasure of receiving a review copy of Conversations Across America by Kari Loya. It’s an insightful look not only at a father-son relationship dynamic after the father is diagnosed with Alzheimer’s, but also a visual and cultural snapshot of America.
There is much to find inspiring about the book. How many of us would be in good enough physical shape to bike across America? I know I wouldn’t and the fact that his father is able to do so while in the early stage of Alzheimer’s is admirable. The obstacles that the father and son duo face on their long journey mirrors the challenges one faces on the dementia caregiving journey. The open road facilitates difficult but necessary conversations between father and son.
The other component of the book offers photos and quotes from people Loya and his father meet along their journey. There is a diverse mix of voices and you likely will not agree with all of them, but it does offer some insight into how we ended up where we find ourselves now. Out on the road, random acts of kindness are not only welcome but necessary. Time and time again, strangers rise to the occasion.
Ultimately, Conversations Across Americais a love letter to his father, the natural beauty of the country and the helpfulness and resilience of those living in small towns. It’s a coffee table book with a conscience.
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.
We all know that exercise can offer a variety of health benefits, including supporting cognitive health. Sedentary behavior has been linked to an increased risk of dementia. But as we get older, we may have physical limitations that prevent us from engaging in the strenuous physical activity we may have enjoyed or done with relative ease when we were younger.
A new study suggests that low-impact workouts, including stretching and balance exercises, offer the same cognitive benefits in the area of executive functioning as aerobic activity. The study was performed on young adult subjects, so more testing will be needed, especially on older subjects. These findings could lead to the introduction of passive exercise programs at long term care and rehabilitation facilities.
Another recent study focused on sedentary adults who had been diagnosed with mild cognitive impairment. Again, the results were promising: cognitive function had not declined after one year of regular workouts, whether it was moderate aerobic exercise or range of motion exercise. A control group of adults with MCI did show a decline in cognitive functioning over the same time period, researchers said.
So the next time you or an older loved one worry you are not getting enough exercise, just remember, any kind of regular exercise can support cognitive health, along with offering a host of other benefits.
In what many consider to be a long overdue move, by this fall Americans will be able to buy hearing aids over the counter at pharmacies and drug stores. This will make getting a hearing aid a more affordable and convenient experience.
My father suffered from hearing loss around the same time he began to first show signs of dementia. Not being able to hear properly can have a negative impact on social interactions, which can also increase the risk of dementia.
Hearing is often something we take for granted but just like with vision, it’s important to note any changes and address issues promptly. Just like you can purchase a pair of reading glasses at your local pharmacy or drug store, soon hearing aids will also be available. Some medical experts are concerned that skipping a customized hearing aid fitting could have unintended consequences, such as not properly addressing a hearing loss issue. One should consult with their doctor if an OTC hearing aid fails to address their hearing loss but providing consumers more affordable and readily available options is an important step forward.