Experts advise protecting independence and autonomy.  Nobody can say how much, or what kinds, or when and how to lessen independence or autonomy as the disease progresses, or how to balance temperament and values with safety.  For David, independence was vital, and being trapped at home was unbearable.  The only fate he feared more was losing a home to be trapped in. 

But while David focused almost entirely on going to the gym, other matters needed attention.  We collected our mail from the same cluster mailbox, so it was an easy matter for me to collect the mail from both boxes.  We’d go through it together in the evenings.  Because both of us feared that important mail would get lost at his house, David willingly accepted that shift.  He paid the bills at my house, shamed by his cramped, shaky handwriting but resisting the idea of handing over that task.  I could make sure the checks were for the right amounts and that they were made out to the right people and signed.  It took minutes and minutes for him to write a check, so I’d look at recipes online to keep a lid on my impatience.  Eventually David was willing to let me set up online bill payments, accepting the argument that he would save money on postage.  By then his file boxes were at my house, so I could oversee everything from monthly bills to taxes. 

Had David not recognized that he was losing his capacity to handle money, had he not trusted me, had I died several years before when I had breast cancer, his financial life could have been – probably would have been — disastrous.  Shifting responsibility to me worked because he knew he needed help and he trusted me.  It worked because I’m “temporarily able-minded” and had a job with some flexibility and because I had daily responsibility for no other vulnerable people. 

It’s often otherwise.  People with dementia may be unable to recognize their limitations, or be (reasonably) afraid to trust others to manage their finances.  They may have no one to trust because no one is close, in terms of place, in terms of relationship.  Their caregivers may already have other, staggering responsibilities.  Caregivers may have disabilities or chronic illness; they may have their own difficulty managing schedules and money. 

We had luck and layers of privilege, including education and access to medical journals.  We had supportive people, some alongside us for a little while and a few the whole way.  A therapist had cautioned that most of David’s friends would drop away, that it goes that way with dementia.  Everybody knows how to rally in times of acute illness or death; they send cards and call and bring casseroles.  Years of decline and mounting losses – that doesn’t sustain interest.  It’s like war in parts of the world that don’t interest the U.S., something awful that goes on and on but isn’t quite in focus and anyway isn’t fixable and isn’t likely to end decisively anytime soon.  Few people stayed in step with us even from diagnosis to the pandemic – but kindness was a gift whenever it came.

Kindness came in envelopes, in messages and texts, notes to let us know that friends were thinking of us.  Kindness came in cars driven by people who were picking David up for lunch or coffee.  Kindness came in baking dishes from thoughtful people who sent treats to raise our spirits.  Extraordinary kindness came weekly, when our friend Kate K arrived to take David out for coffee and grocery shopping.  She kept an eye on him while he hauled his overfilled basket – always a basket, never a cart – through the aisles, and she stood discreetly nearby while he went through all of the cards in his wallet looking for his debit card.  Let me pause to say: all of that was classic David.  He’d chosen a basket over a cart, regardless of the items on his list, as long as I’d known him.  He’d reorganized his wallet again and again across the years, but the card he wanted was always elusive.  So he did need Kate K’s watchful eye, but – at least for the time being – we could smile about these idiosyncrasies.  More serious difficulties would come, but hadn’t yet.