Dianne Feinstein makes news these days for the health challenges that seem to keep mounting, but behind her story is another, which few pay attention to. It’s the story of the family and friends who are now caregivers, who juggle the unpredictability of the day-to-day with the inevitability of the long term. No matter how many people have traveled ahead of us on the caregiving journey and have shared their experiences, it always feels like a pilgrim’s path, lonely and strange.
When I watched the news clip of Senator Feinstein starting to give prepared comments on an $823 billion military budget, when all she needed to do was say “aye,” I felt the ache of familiarity. I do not know what the senator’s health condition is and she has not disclosed any diagnosis regarding her mental acuity. She has said she is fit to serve. But her eyes looked lost, her disorientation was palpable and her brief laughter when she obeyed the instructions she was given were all things I’ve seen before — with my father, as Alzheimer’s claimed him, and with others who are being pirated away by dementia. It was her weak laughter that broke my heart — part self-consciousness, part confusion, a shrugging acceptance of something she seemed to not understand. I saw that frail, awkward laughter when my father wasn’t sure which way to walk (when he still went on walks) and was then gently guided in the right direction.
Senator Feinstein, we’ve been told, had recently recovered from encephalitis, which she got from shingles, and which can result in cognitive issues. Dementia has not been stated, but the symptoms are similar and all too recognizable for thousands of people who have become caregivers for a loved one. They know the looks, the behavior; they live with all of it day after day, month after month. When Senator Feinstein returned from her lengthy time away, it was painfully illuminating to see her tell a reporter that she hadn’t been away at all, that she had been right there the whole time.
Early on, there were cruel conjectures that people around her were pushing her to remain in the Senate for their own self-interests, which was a petty and uninformed accusation. Let me tell you something about the fear of cognitive decline: It unleashes a torrent of emotions in caregivers. There is a fear of the unknown, there is a desire to maintain the status quo, to keep everything as normal as possible, and there is the haunting awareness that everything you once relied on is falling apart.
For the people losing their cognition, terror can be a constant companion, confusion nips at their heels, and they reach desperately for the person they once were. Caregivers reach for that, too. Early on in my father’s illness, my mother took him up to their ranch north of Los Angeles — the place he once said was heaven on Earth, the place that nourished his soul. But that was no longer the case. He became agitated and frightened by the expansive green miles he once loved. Dementia narrows the boundaries of one’s world; on that clear blue day when he said he wanted to go home, we learned that sad lesson.
Recently, it was revealed that Senator Feinstein has given her daughter “limited durable power of attorney,” something that is also familiar to many people. It’s a necessary move when a loved one is showing reduced capability in dealing with legal or medical issues. Her daughter has filed a lawsuit on behalf of her mother, alleging that Senator Feinstein is the victim of “financial elder abuse.” The claim is that the trustees of her husband’s estate are failing to contribute to the trust money that she is owed. (A lawyer for the trustees has said that his clients “acted ethically and appropriately at all times.”) There are milestones in the decline from health, and handing over power of attorney is one of them. It’s not something that anyone looks forward to.
Sometimes a public story touches thousands of lives on a very intimate plane. Regardless of people’s condition, one thing is certain: They want autonomy over their lives. That desire is deeply rooted; it’s primal, and it doesn’t fade easily, if at all. Whether they want to go to work, drive a car, live on their own without the intrusion of an outside caregiver, people want to maintain what feels familiar to them.
The challenges of navigating the changes that simply have to be made weigh down caregivers to the point that their own health can be affected. Hence the terms “caregiver stress” and “caregiver burnout.” Senator Feinstein’s husband died in 2022; she has a daughter, a granddaughter and a rather constant companion in Nancy Pelosi’s eldest daughter, who all look after her.
We will probably never know the conversations that took place to bring about the senator transferring power of attorney to her daughter, but there are many who can identify with the need to step in and take charge. During the six years that I ran my support group, Beyond Alzheimer’s, I heard countless stories about family members who were forced into difficult situations — taking the car from a parent with dementia in the dead of night and then claiming it was stolen, knowing it was the only way they could stop them from driving. Or having to break down the front door because their loved one bolted it and wouldn’t let anyone in. I’ve heard of dementia patients walking out of the house and getting on a bus to somewhere, determined to get to work and ending up in another city. For a son or daughter to assume autonomy over a parent’s life and say, “I’m making the decisions now,” is a role reversal for which there is no preparation.
Even granting Senator Feinstein some degree of privacy, observationally it’s safe to assume that her loved ones, and those close to her, are going through the quiet agony of watching time and illness transform the woman they once knew. It is not just her story — it’s theirs, too.
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Ms. Davis, a daughter of President Ronald Reagan, is the author, most recently, of “Floating in the Deep End: How Caregivers Can See Beyond Alzheimer’s.”