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Arakawa's death highlights the challenges of Alzheimer's caregiving
My mother died of the stress of Alzheimer’s caregiving. A decade into caring for my father — and hiding his diagnosis from their friends — she dropped dead of a stress-induced brain aneurysm.
Her story is not unique, and I see echoes of it in Betsy Arakawa’s caregiving for her husband, actor Gene Hackman, 95. Arakawa, 65, died sometime after Feb. 11, when her last errands were caught on tape shopping in Santa Fe, and before her husband’s death on Feb. 17, the state Office of the Medical Investigator announced Friday. Arakawa died of hantavirus and Hackman of complications of severe heart disease and advanced Alzheimer’s, the office said.
Speculation had been running rampant over what had killed the pair, and one of their three dogs found in a crate near Arakawa’s body, since their bodies were found on Feb. 26. Though no one knows how long Hackman had Alzheimer’s, he withdrew from public life nearly 20 years ago and store clerks around town had begun to notice a few years ago that he’d had some cognitive challenges.
Alzheimer’s caregiving is just about the hardest caregiving there is. Unlike cancer, or heart disease, you can’t rationalize with the patient. You must watch them constantly: did they turn on the gas stove without igniting it? Did they take out a sharp knife where they might cut themselves? Can they navigate those stairs without falling? Might they wander off, as my father did, and require a police and fire search to find them frantic hours later?
“This tragedy reminds us of the vulnerability of people living with advanced dementia and their caregivers,” said Juliet Holt Klinger, a dementia care consultant who ran dementia care for Brookdale Senior Living, the largest U.S. provider of senior care, for 18 years. “We know that all too often caregivers set aside looking after their own health as they care for the person with dementia.”
If only Arakawa had prioritized her own health, she might not have died. My heart wrenches thinking of the days Hackman lived beyond her, maybe not even realizing his wife was gone. For my father, my mother was his north star. If he could see her, he was OK. But that was also hard on her: she could hardly go to the bathroom without him following her.
But surely, you might think, the rich have more help. Maybe not: it is telling that no one sounded the alarm when neither Hackman nor Arakawa had been heard from in two weeks.
“Caregivers have a 63% higher mortality rate than non-caregivers and over 40% of all caregivers die before the person that they’re caring for,” Holt Klinger said. “When you’re caregiving for someone with dementia at home, it can begin to feel as though you live on a remote island. It’s a very isolating experience for many as friends and even family begin to drop off when the person with dementia advances in their disease. Frequently caregivers are left without much real support.”
All of which is to say, for me, the lesson here is: support people you know who are caregiving for those living with Alzheimer’s and dementia. My biggest regret in life is not realizing until it was too late that my mother needed more help.
“The overpowering stigma of Alzheimer’s keeps people isolated — which only ends in tragedy,” says Dr. Anne Basting, a gerontologist and professor at the University of Wisconsin who won a MacArthur Genius grant for her novel use of arts in senior care. “Supportive social gatherings — in libraries, nature centers, museums, etc. — like Memory Cafes can be crucial to creating a social network and destigmatizing the experience of dementia all at the same time.”
