For the person who is 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. Whatever someone’s condition, one thing is certain — they want autonomy over their life. 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 challenge of navigating the changes that simply have to be made weigh down caregivers to the point where their own health can be impacted. Hence the terms “caregiver stress” and “caregiver burnout.” Dianne Feinstein’s husband passed away 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.