Who Cares for the Caregivers?

I’ve been thinking a lot about the tragic news reports of the deaths of Oscar-winning actor Gene Hackman, 95, and his wife and caregiver, Betsy Arakawa, 65, whose bodies were found in their New Mexico home on Feb. 26. The story took an even more tragic turn when an investigation revealed that Hackman died of heart disease and advanced Alzheimer’s disease a full week after his wife died of hantavirus in their home. A few days ago, a new report revealed Betsy was feeling ill and had scheduled a doctor’s appointment for herself, and then canceled it, saying she needed to take care of her husband. She called the clinic back seeking advice for congestion and made another appointment for that day. However, she never showed up. The clinic called her, but there was no answer.  The phone calls were her last known activity. Officials believe she died that day. As a caregiver, I see multiple takeaways from this tragic story:

• Caregivers need care and support too. Betsy was fiercely dedicated as a caregiver for her husband, but who was supporting her?  While they had financial means, she seemed to be managing most of the caregiving and household responsibilities on her own, including caring for three dogs. Many caregivers may feel a strong sense of obligation and guilt that they’re not able to handle it all themselves, so they don’t ask for help. I wonder if she thought she could handle it all on her own. 
  

• Due to their heavy load of responsibilities, family caregivers often neglect their own health, skipping routine checkups, or prioritizing their loved one’s health over their own.
  

• 41% of caregivers report low overall well-being, reflecting chronic stress, and 23% say their physical health has deteriorated due to caregiving burdens. A significant number experience clinical symptoms of depression, with 40% to 70% reporting such issues.
  

• Family caregivers often lead socially isolated lives. They become so busy caring for their loved one that they don’t have time to stay in touch with friends. They may start feeling that others don’t really understand. Due to chronic stress, they may withdraw from family and friends. This increases their risk of isolation. 

• Caregivers are the foundation of their families. When they go down, everyone goes down. This is why caregivers must take care of their own physical, mental, emotional, and spiritual health – this should be part of their informal caregiver “job description”.
  

• Caregiving should never be a one-person job. It really takes a village.  As caregivers, we need to ask for help and divide up tasks. It can be a cross-section of family, friends, neighbors, public services, charity services, and paid services. As a society, we need to support family caregivers. Too many caregivers are shouldering it all alone.
  

• We need more societal support for family caregivers. In our Western culture, we emphasize individuality and see caregiving as a private family issue, which often falls upon women. In the American medical system, the focus is on the patient, and not enough attention is paid to the well-being of the often exhausted caregiver who is responsible for the patient’s daily life. We need more societal infrastructure – from more access to paid family leave, respite services, and financial support for caregivers – to more caregiver support, training, and education in our medical system. 

• If you're reading this and you aren't a caregiver, reach out to caregivers you know. Acknowledge the invisible caregiving work they do to help them feel more seen. Show compassion by offering to listen to their challenges. Offer thoughtful and practical ways to help, such as running errands or helping with household chores. Maybe offer to cook a meal, look for a support group, or do online research to find a handyman for house repairs.
  

I’m thinking of all of you caregivers who do so much heroic invisible work every single day.  Please make it a priority to take care of your own physical, mental, emotional, and spiritual health. Come to our monthly support group meetings. Reach out if there is something you are struggling with. As a caregiver support group leader and a caregiving coach, I want to help care for fellow caregivers. I live the life of a chronic illness caregiver and I understand the challenges. I offer free and paid services to help caregivers: - Support group meetings - Group courses - 1:1 coaching - Workshops - An online community that’s not on social media Please reach out if you’d like to learn more about any of these offerings. If any of this resonates with you, I’d love to hear from you. You can reach me at kim@caregiverwisdom.net. Take Care,

Kim