“Still smells like coffee,” said the man at the service counter.  He handed over the keys and pointed to the Mini Cooper (red body, silver top).  “Lot of coffee in that car.”  Oh, he had no idea.  David drove with a mug of coffee in one hand.  He didn’t use travel mugs; he liked the…

On a Friday afternoon in early December, I parked in my garage, shouldered my backpack, closed the car door, and opened the door to the kitchen.  The lights were on, not only in the kitchen but all across the downstairs.  A five-pound bag of potatoes sat on the counter.  The front and back doors were…

That was the beginning, except of course it wasn’t the beginning.  That was the event that led to a diagnosis of Lewy Body Dementia.  At what point did it begin?  Was it when he found calendars confusing?  When shapes sometimes appeared in his peripheral vision?  When he started shuffling?  Or years and years ago, when…

Later, of course, I could look back and see signs of LBD everywhere: visuospatial deficits, executive function deficits, the beginnings of the classic Parkinsonian gait and posture, stooping and shuffling.  Until David reported a clear instance of hallucination, though, it’s unlikely that anyone would have diagnosed him with LBD.   The preliminary LBD diagnosis came a…

“Nearly 60% of caregivers work outside of the home. If you work outside the home and you’re a caregiver, you may begin to feel overwhelmed. If you do, think about taking leave from your job for a period of time. “Employees covered under the federal Family and Medical Leave Act may be able to take…

The second neuropsych exam, in March, 2018, supported the diagnosis of LBD.  It was a three-hour exam, and David’s insurance covered only part of the cost.  Had David been unwilling to have the exam, either because he resisted the idea that he might have dementia or because he refused to pay $750 out of pocket,…

When David was diagnosed, almost nobody we knew had heard of Lewy Body Dementia.  People assumed that LBD is similar to Alzheimer’s; for many people, dementia = Alzheimer’s.  The diseases are markedly different, though both dementias do involve misfolded proteins, and the brains of people with LBD can show the characteristic tangles of Alzheimer’s (tau…

“While caregivers thought both diagnosing and treating physicians were knowledgeable about individual disease symptoms and current treatment options, most respondents reported their physicians lacked knowledge regarding not only the course and prognosis of the disease but also any available community resources or allied health referrals.” –Galvin, James E. et al. “Lewy Body Dementia: Caregiver Burden…

I made more phone calls.  A social worker said that David wouldn’t qualify for county services until he had spent down his assets.  Another social worker said well, frankly, clients are prioritized by urgency of need, and you’re too competent.  At last, the primary care clinic offered to send a home health nurse to evaluate…

The only service I could find that David qualified for was the dial-a-ride bus.  When we filled out the application, it seemed like a way to preserve some independence and a reprieve from constant driving, especially for trips to the gym in the Minnesota winter.  Driving him everywhere might have been easier.  David had trouble…

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…

“In response to the question ‘Do you feel isolated as a caregiver because few people know about LBD?’ 40% reported that they felt very isolated for this reason.” –Galvin, James E et al. “Lewy Body Dementia: Caregiver Burden and Unmet Needs.” Alzheimer Disease and Associated Disorders vol. 24,2 (2010): 177-81.  doi:10.1097/WAD.0b013e3181c72b5d Few people stick around…

It took months to get David’s first neurology appointment.  Neurologists are in short supply where we live, and specialists in dementia are especially thin on the ground.  We could have requested an evaluation at a large medical center in Minneapolis or Rochester, but it was hard to see what we would gain.  The medical literature…

“Dementia quality measures recommend ‘comprehensive counseling regarding ongoing palliation and symptom management and EOL [end of life] decisions within 2 years of initial diagnosis or assumption of care,’ but only 22% of families of individuals who died with DLB [dementia with Lewy Bodies] reported a helpful conversation with physicians regarding what to expect at the…

In July 2019, our friend Kate S flew from Little Rock to Minnesota to help me visit nursing homes, select the best options, and put David’s name on their waiting lists.  I could not begin that by myself.  I had talked to friends about their family members’ experiences in nearby nursing homes, but I stalled…

While I couldn’t yet picture the David who would need a nursing home, he had already needed emergency care.  Following the advice of the Lewy Body Dementia Association, I gathered the documents into a folder that went in the emergency “go bag.”  I was closing the barn door months after one horse had gotten out;…

 Caregivers try to fill the whole spectrum of needs, and it’s impossible.  It’s impossible for any one person to have the skills, knowledge, time, and general wherewithal to oversee medications, medical care, finances, cooking, cleaning, home repairs, and safety while also providing transportation, social interaction, entertainment, and psychological support – but if you can’t fill…

In January, 2020, David called me one Friday afternoon, barely able to speak.  Please come over, he said.  Pulling on my coat as I went, I slid across the icy alley and wrenched open his kitchen door.  I shucked off my shoes and headed upstairs.  What’s wrong? What’s wrong?  I found David hunched in the…

I was beginning to realize that being David’s caregiver would mean becoming his healthcare refuser.  Instead of going to the ER, we called the doctor on Monday morning, and David started another round of physical therapy.  Instead of starting the ER-hospital-rehab-release cycle, we went to see a nearby assisted-living apartment. The apartments were beautifully designed…

Two weeks later, David was in the apartment and his empty house was on the market.  That’s true, and it’s one way to frame the events.  Another: that was my sabbatical semester, and I spent the first month caring for David through that terrible weekend episode, getting him to medical care, moving him into assisted…

I hadn’t expected a pandemic, but I’d tried to prepare for ordinary contingencies.  In case illness or terrible weather kept me at home, I’d set up a system for meds that didn’t depend on knowing the day of the week or the time of day.  Pills were in lettered containers, and we had practiced using…

“Interestingly, despite the severity of disease, the level of burden and the presence of crises in the majority of cases, most [caregiver] respondents indicated that they were not currently receiving paid help to assist with care, and most had not received paid help in the past.” –Galvin, James E et al. “Lewy Body Dementia: Caregiver…

David was allowed to leave the building, so I drove over there every morning and evening and used the intercom to let him know I’d arrived.  He came down and sat with me in the car.  I put a big round tray in his lap in case of spillage, poured water from a water bottle…

At last the administrator granted me “essential caregiver” status.  I wasn’t allowed to use my keys, and I could come and go only during hours when someone was at the front desk to check me in and out.  Like every facility in the country, this one was short-staffed – so check-in hours kept shifting, and…

Even as other people moved into his apartment, David became convinced that it wasn’t his apartment.  At first I thought he was having trouble with the fact that he was no longer in the familiar townhome, but that wasn’t the issue.  There was another apartment, he told me, that was like this one down to…

We went nowhere except my house; we saw no one except each other.  That’s not quite accurate: David saw one other masked human every day: a staff member came by to take residents’ temperatures and check oxygen levels.  I was glad about that vigilance, especially because I worried that David could pose a risk both…

The time of that risk calculation ended abruptly.  When I arrived at the apartment one afternoon, David told me that he had gone for a walk and suffered an episode of weakness so sudden and severe that he’d barely made it to the front door of the building.  He couldn’t get the door open with…

The nurse was calm and patient.  She spent time talking with David about his work as a reference librarian and about his move to the apartment, putting him at ease as much as possible before beginning the assessment.  Then out came the MoCA.  David and I rolled our eyes at each other.  I pretended to…

The administrator of the apartment building offered to inform David of the decision.  She and the director joined us in David’s apartment, and they explained their concerns about his safety.  Then Fiona joined us by Zoom.  We said little; mostly sat together in the sadness.  “They shouldn’t be making me do this,” David said at…

  At last I wrote to the MN regional ombudsman for assisted living: My person is in an assisted living memory care facility.  The administration has been careful about COVID precautions; the facility keeps residents from interacting with anyone except staff and essential caregivers.  This facility has not yet begun allowing indoor visits.  I’m an…

After the complete isolation in his previous building, the company of other people, even fellow tv-watchers, helped David a little – but it wasn’t enough.  Conversation with other residents was often difficult, and he wished that staff members would talk with him.  One part-time staff member who loved gardening discovered that David shared that love,…

“When we call patients or families ‘good,’ or at least spare them the ‘difficult’ label, we are rewarding acquiescence.  Too often, this ‘good’ means you agree with me and don’t bother me and let me be in charge of what happens and when.  This definition runs counter to what we know about truly good care…

Meanwhile, as David made the adjustment to assisted living memory care, the college where I teach announced a shift from semester-long courses to block courses, with a semester’s worth of course content reconfigured into seventeen three-hour blocks scheduled on Mondays, Tuesdays, Thursdays, and Fridays.  I applied for and was granted permission to teach remotely because…

After one of David’s medical appointments, a notification of a new test result showed up in my email.  Imaging of his spine had shown something else in the area of his bladder.  He should follow up with a urologist.  The urology office scheduler called right away.  She found a date for the appointment and outlined…

The next development had nothing to do with David’s bladder.  I got a call from the nurse one morning because David had fallen, and it was impossible to determine whether he had hit his head.  He was having trouble talking, and he couldn’t stand or walk.  He needed to be evaluated in the ER, and…

David didn’t get COVID in the hospital.  He also didn’t return to the assisted living memory care facility.  I called the AL administrator every morning with as much information as I had – hardly any.  The doctor was never available, and you can’t lie in wait for doctors by telephone.  A week went by, and…

The next day, discharge went as discharge goes during a pandemic.  I got the call telling me to come to the hospital, park in a particular lot, and then wait for a second call before pulling up to the door where I would meet David.  I put the suitcase in the car and filled my…

“Pursuing unpaid bills, nursing homes across [Rochester, NY] have been routinely suing not only residents but their friends and family, a KHN review of court records reveals. The practice has ensnared scores of children, grandchildren, neighbors, and others, many with nearly no financial ties to residents or legal responsibility for their debts. . . .…

I could call; I could bring belongings or gifts to the front door; I could schedule a window visit – but I didn’t know when I’d see David again.  By October of 2020, we all knew that long-term care residents were extremely vulnerable to COVID and that many died alone, cared for by overstretched healthcare…

In January, 2021, I got word that I had been approved as an “essential caregiver.”  As long as I provided the results of weekly PCR tests, I could arrange visits in the lobby.  Seeing David comforted me.  Between visits, however, I still couldn’t reach him by phone.  At David’s request, I bought him a cell…

In March, the Center for Medicare and Medicaid Services stipulated that long-term care facilities must allow visitors: Indoor Visitation Facilities must allow indoor visitation at all times and for all residents as permitted under the regulations. While previously acceptable during the PHE, facilities can no longer limit the frequency and length of visits for residents,…

“There” was still a puzzle.  Through the moves from the assisted living apartment to assisted living memory care to the nursing home, we’d continued looking for the other room that was exactly like his room down to the last detail.  But we had a new problem.  The nursing home had a noun in its name…

One day I arrived to find David trembling with fear and distress.  “I’ve made a big mistake,” he told me.  “I signed a paper that gives them permission to kill me, and now they’re going to do it.  They just told me.”  No, I said, they’re not because they have to get my permission as…

“It is . . . important to note that we found worry about performance . . . to be endorsed the most strongly by LBD caregivers.  This finding may reflect the fact that there is not as much information available about care of people with LBD compared with AD [Alzheimer’s] or other forms of dementia. …

Some reports were murkier.  David occasionally told me that someone had assaulted him the night before: “This big man — he was huge — this man threw me on the bed.”  His perception of human size was unreliable because LBD had distorted his visuospatial perception, and that made it difficult to adjust to the view…

“Past research has identified LTC residents as a high-risk group for elder abuse and neglect (Yon et al., 2019). At times of stress, anxiety, and resource constraints, older persons might be even at a greater risk. Moreover, in many countries, the current guidelines on physical isolation do not allow for visits to LTCS. Although the…

Aside from reports about Fake Fiona, crimes, and my life and death, the days at The Meadows had settled into a routine.  I still checked in early each morning, placing video calls every few minutes so that I could talk with him when he was awake but not yet out of the room.  David’s LBD…

We somehow fell out of the neurologist’s schedule, but it didn’t seem worth the trouble to call and make an appointment for the next time she had an opening, months in the future.  It was unlikely that the neurologist could tell us anything we couldn’t figure out for ourselves.  We didn’t need to go through…

At The Meadows, David had been assigned a care manager, a nurse who oversaw his day-to-day treatment and monitored his condition.  Because the hospital, neurologist, urologist, and palliative care physician were all part of one healthcare system and The Meadows was not, information moved back and forth between The Meadows and his doctors on handwritten…

In the fall of 2021, roughly a year after FDA emergency approval of the first COVID vaccines, the federal government issued a vaccine mandate for staff at long-term care facilities.  David had already contracted COVID once since moving to The Meadows; I hoped this mandate would lower the risk of a second infection.  The Centers…

“Health care employees looking to skirt the federal vaccine mandate and claim a religious exemption need to do little more than submit a short request to human resources. . . . “Hospital officials from several states said they created simple forms to meet the administration’s mandate, which requires all health workers, including those not directly…

Hour to hour, David got excellent care at The Meadows.  Unlike the staff at the assisted living memory care facility, The Meadows staff talked with residents, joined them in games and activities, and watched for situations that helped them relax or made them light up.  Some residents relaxed when staff members combed and curled their…

Of course, the excellent care had a high price tag. When the bill arrived every month, I’d go straight to the laptop so I could open the envelope and pay the bill before the dismay and worry hit.  How long would his savings last?  When would I need to apply for Medicaid?  I spoke often…

In the spring of 2022, eighteen months after the hospital care team had inserted an indwelling catheter, a nurse at The Meadows noticed tissue erosion.  I drove David to the urology clinic, and the physician’s assistant recommended taping the tube to avoid enlarging the pressure sore or surgically placing a suprapubic catheter.  Under general anesthesia?…

What about the surgery?  I wondered.  If David was eligible for hospice, surely we should cancel that.  I sent queries through the clinic portal to the urologist, the neurologist, the palliative care doctor.  They sent their questions through the portal to me.  I put those questions into an email message and sent it to the…

As word spread that David was in hospice, more friends came to visit.  Admission to hospice coincided with warmer weather, so friends worried about COVID could arrange to sit with David outside, on the pergola-shaded patio.  I tried to remember to warn friends that the outside keypad required a different code from all the others,…

One Tuesday in June, the care manager called as I was getting in the car.  I saw his name as I answered, so I said hello and explained that I was on my way to The Meadows with my laptop for a telehealth visit with the palliative care doctor.  The care manager said, “I’m calling…

The staff began using a hoist to move David from bed to wheelchair, from wheelchair to toilet.  He hated it.  He’d always been afraid of heights, and being suspended terrified him.  His distress slammered me, though I trusted the nurses’ judgment.  I’d found transfers difficult and scary even months before, when David could bear his…

“New research shows that nursing homes and assisted-living facilities across the state often are failing to protect seniors from thefts of highly addictive painkillers – with thousands of pills being stolen every year by people entrusted to care for vulnerable residents. The consequences are devastating: Many seniors have suffered needlessly for long periods without knowing…

David’s finger began healing, then swelled up again.  He kept taking off the splint, and no wonder: a splint on the index finger of the dominant hand is a nuisance every waking moment.  His pincer grip was still unreliable, so more of his food was landing in the chair or on the floor.  Still, his…

David’s temperature and oxygen levels dropped and rose.  He had seizures.  The nurses consulted with the doctor and refined the medication schedule, adding more frequent PRN morphine and Ativan.  David worked hard to breathe, but the oxygen didn’t help – and he hated the cannula.  Sometimes his breathing would ease and his face would soften. …

Afterward, Fiona wrote David’s obituary while Kate helped me move David’s belongings from the nursing home and fill out the many forms that death requires.  We had decided already that we would schedule a memorial gathering later, in the spring. Classes had begun: David died during the first week of the semester.  Generous colleagues launched…