Dementia caregivers who are juggling careers and care duties will appreciate how director Alex Berg depicted the caregiving experience with empathy and accuracy in his short film, “Ruth.” The film was released in 2022 but is receiving renewed interest due to an Alzheimer’s Association interview with the director that was published this month.
In just 9 minutes, “Ruth” beautifully depicts the frustrations and joy of a mother with dementia and her middle-aged daughter who is trying to balance career demands with caregiving. Berg told the Alzheimer’s Association that his grandfather was an inspiration for the project. The confusion and repetition of questions is something many dementia family caregivers will relate to. The frustration that bubbles over for the daughter is also familiar. “I wanted the daughter-caregiver in the film to be just as central as the mother character, going through personal challenges of her own, ones that don’t go away just because she is a caregiver,” Berg said.
The acting and direction is heartbreakingly beautiful. Family caregivers will finally feel seen after viewing “Ruth.”
In a move that family caregivers feel is long overdue, the federal government is launching an investigation into the inappropriate use of antipsychotic drugs in nursing homes. Specifically, the government will be looking at the suspicious rise in schizophrenia cases and determine if the spike is being used as a workaround to use antipsychotic drugs to sedate difficult patients and make them more manageable for staff.
This is not a new issue, especially for family caregivers of those with dementia. I’ve written about it multiple times on this blog in relation to my father’s experience. My father was given risperidone, a drug used to treat schizophrenia and bipolar disease, at the memory care facility he resided in during the last year of his life. The doctor didn’t deny when I confronted him about the drug and how it was used to make dementia patients zombies and more compliant for staff.
After my father’s death, I reported the issue to the appropriate state agency, but never received a response. The federal government claimed in 2013 that antipsychotic use in nursing homes was on the decline. That remains true but only for the population not diagnosed with schizophrenia. There is also a troubling racial disparity, with Black nursing home residents being diagnosed with schizophrenia at higher rates than their white counterparts.
CMS will conduct audits and nursing homes showing a pattern of diagnosing schizophrenia incorrectly may see their public ratings impacted. CMS will monitor the nursing homes not in compliance to make sure corrections are implemented. It’s not known at this time if fines will be implemented for those nursing homes who continue to be out of compliance. Also, patients’ families will not be informed if their loved one was incorrectly diagnosed. Make sure to request a list of the drugs your loved one has been prescribed and question any medications that don’t seem appropriate.
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.
Another year is in the books. As we look back on 2022, it’s easy to focus on the negative, but I hope you will cut yourself some slack and take time to celebrate what went well this year. Finding those good moments can be difficult when one is in a challenging caregiving situation. One suggestion that I’ve seen online is to get a jar and write on a slip of paper one good thing that happened each week. At the end of the year, the jar will be filled with highlights. If you are more digitally inclined you could keep a spreadsheet or use an app. It’s a simple way to make sure you don’t overlook your achievements.
My biggest achievement in 2022 was publishing my children’s book, Slow Dog. I began the year taking a course on writing for children, where I came up with the idea but waited until the summer to get serious about the project. If I had waited any longer, the book may never have existed as I got laid off from my job just two months after it was published. Timing is everything and sometimes the universe gives you a nudge just when you need it.
I hope 2023 will bring you good health and success in what matters to you.
Christmas was a simple affair for my small family, but a holiday I remember fondly. I can still smell the cinnamon sticks featured in the holiday decoration in the far left of this family photo. I kept some of the brightly colored balls we used to decorate our small tree and they now decorate my tabletop tree, some 40 years later.
Wishing you and your loved ones a happy holiday. I hope you get to spend it with loved ones and that the deep freeze doesn’t disrupt your plans. Stay warm and safe!
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.
There have been a series of layoffs in the media world recently and I find myself once again without a job. The last time I joined the ranks of the unemployed was when I quit a new job to take care of my mother when she was diagnosed with colon cancer just six months after my father died. I am fortunate this time around to have received a severance package that will keep me afloat temporarily while I look for new opportunities.
So many people, especially family caregivers, don’t have such a safety net when they face a job loss. I wanted to share some lessons that I learned while I was an unemployed family caregiver and a few resources for family caregivers who find themselves in challenging financial circumstances.
Unemployment is one of life’s most stressful events, and it’s even more so for those who are the primary caregivers for a loved one. Before tackling the financial challenges, make sure you have the emotional support you need. High levels of sustained stress can trigger physical symptoms, so don’t ignore your own health needs during this difficult time.
Reassess your family budget and be prepared to make some difficult cuts. Are there any expenses that could be reduced or eliminated? With many family caregivers already living paycheck to paycheck, this might feel like an exercise in futility. But reviewing your budget is essential as it will help determine what financial assistance programs you may qualify for.
Take a thoughtful approach to your job search. Being unemployed can leave one feeling desperate and willing to take the first job offer that comes along, but that can end up backfiring. Unemployment provides an opportunity to reconsider your work priorities. List your job requirements, which might include a minimum salary level, remote work, flexible schedule, etc. Highlight which are must-haves and refine your job search to meet those requirements. For example, as my mother dealt with health complications that delayed her recovery, I turned to freelance work instead of looking for another full-time job. In that moment, family caregiving took precedent and I didn’t want to begin another full-time job only to have to quit again if my mother had further medical issues. The downside was that I had to utilize my parent’s limited financial resources to help pay my own bills during that period. When my mother became more medically stable, I began my full-time job search in earnest.
It won’t last forever: I spent over a year in what I called “severe underemployment” in which I picked up several low-paying freelance gigs to help pay the bills because I couldn’t find anything better at the time. Finally I found a job through a former colleague that turned out to be an ideal fit and allowed me to work with a fantastic team.
But be prepared for further hiccups: I learned this lesson the hard way: the universe isn’t going to give you a break because you are a caregiver. Home repairs, the car breaking down, or more substantial events like divorce and illness may occur. For example, as I’m still reeling from being laid off last month, I’m having to deal with a pricey veterinary bill because my dog is sick.
Happy Thanksgiving to those who celebrate. In addition to food, family and football, today is a day to show gratitude.
I’d like to give thanks to all of the caregivers, from family members to those in the care workforce. I’d like to express gratitude especially to those caregivers who feel invisible, unappreciated and overworked. You matter and you deserve more support. There are many people working hard to implement changes to better support caregivers. It’s been an uphill battle and will continue to be so, but caregiver advocates, many of us former or current caregivers, are a tough and dedicated bunch.
Let the caregivers in your life know how much their efforts mean. Thank you to all of those who have supported me on my caregiving journey, from following this blog to buying my books and sending encouraging notes and comments.