The recent passing of Betsy Arakawa and Gene Hackman underscores the often-overlooked challenges that solo caregivers and dementia patients face, especially in times of emergency.
Betsy, who was battling hantavirus pulmonary syndrome—a deadly virus transmitted by rodents, with no known vaccine or cure—was not only managing her own health struggles but also the immense responsibility of caring for Gene, who was living with advanced dementia. She was Gene's primary and solo caregiver.
Gene, who had advanced Alzheimer's, might have been emotionally overwhelmed by the situation, unable to process what was happening, and unable to act in a way that could have potentially prevented the tragedy.
This tragic event serves as a stark reminder of the hardships caregivers face and the crucial need to prepare for emergencies.
Preparing for Emergencies as a Caregiver
Checking-In Regular check-ins from someone—whether through texts, phone calls, or in-person visits—are essential in ensuring that caregivers are supported and any emerging health issues or crises are noticed early. These check ins could come from a family member, a friend, a neighbor, or even members of social organizations such as religious or nonprofit groups.
It's also helpful for caregivers to reach out themselves, with a quick daily text or call to a trusted person, letting them know that they're okay.
But what if caregivers are socially isolated? Isolation is a harsh reality for many caregivers. The demands of caregiving can prevent them from maintaining social connections, leaving them disconnected from family, friends, and the broader community.
They may also feel guilt or shame in sharing their situation, fearing they will become a burden to others.
If you are someone who knows a caregiver, one of the most effective ways to help caregivers is by telling them specifically what you can help with. This was emphasized by Emma Heming Willis, wife of Bruce Willis, during National Caregivers Day.
It’s also important to remind caregivers that they are not a burden and that it's okay to ask for help.
For caregivers seeking support, many organizations offer valuable resources and support groups:
Local Area Agencies on Aging can also assist caregivers find support groups. These are agencies designated by the state to address the concerns of older adults in regional and local levels. You can look for an AAA using Elder Locator's online search tool: https://eldercare.acl.gov/Public/About/Aging_Network/AAA.aspx
If you are a caregiver please know that you are not alone, it's ok to ask for help, and you are not a burden.
The Possibility of Caregiver Loss and What to Do
While we all hope it never happens, there is a very real possibility that a solo caregiver could pass away, leaving a dementia patient without support.
To prepare for such a situation, caregivers should compile a list of critical information about the person they care for, such as:
Medical records (including prescriptions and diagnoses)
Important contacts (doctors, family members, legal representatives)
Food preferences and dietary restrictions
Advanced health directives, financial documents, and legal documents
Caregivers should also make sure someone they trust is aware of where these documents are kept, ensuring they can be accessed quickly in an emergency.
And don’t forget about pets—if your pet has specific needs, you should list them down as well.
Early Notification
Early notification of emergencies is crucial. In the Hackmans’ case, it took several days for their bodies to be discovered. Solo caregivers should consider using personal emergency response systems (PERS) such as wearable alarms or motion sensors.
These devices can immediately notify emergency services or a designated contact if the caregiver is in trouble or unable to respond.
Conclusion: A Call for Awareness and Support
The heartbreaking story of Betsy Arakawa and Gene Hackman serves as a powerful reminder of the immense responsibility caregivers shoulder, often in isolation, and the critical importance of emergency preparedness.
While we can't always prevent tragedies, we can take steps to ensure caregivers are supported and equipped to manage the challenges they face.
As a community, we must do more to support those who give so much of themselves to care for others. Let’s raise awareness, offer assistance, and work to create a community where caregivers feel seen, heard, and valued.
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