'til Death or Dementia Do Us Part

by Marilyn Reynolds

  We weren’t quite so extravagant when we moved two years later, two doors down, to the larger house. There was already a little pond in the front patio. You bought a beautiful pot, had a hole cut through the bottom, and added a pump that circulated water. The pond to fountain evolution was a long stretch beyond your natural talents and was a great success. Anyway, my mind is on a much lesser project of a new plant or two to brighten the front of my rented duplex.

  I’m sorry that you can’t be the quintessential grampa for Mika that you were for the other young grandkids. She is so like you in many ways. She’s musical and loves to dance. She has a flair for fashion and drama. She knows, and expresses, exactly how she wants things to be. I know grandparents always think this, but I know it’s true in her case—she’s extremely intelligent. She and I love each other and have fun together, but you’d be doing tap dance routines with her, and playing dress up, feeding her way too many sweets, and doing your own quirky brand of improv with whatever stories you were reading and telling. How I wish you could be enjoying this amazing little person. How I wish she could have known you.

  We miss you.

  Marilyn

  RETIREMENT COMMUNITIES

  Fall 2009

  With coaxing from those closest to me, I forced myself to get beyond the details of everyday life and consider both the immediate future, and what would likely need to be considered for the long haul. It was becoming more and more difficult to manage Mike. It was obvious I would soon need some sort of help.

  On the advice of a social worker friend, Sharon contacted Carol Kinsel of Senior Care Solutions, a Sacramento organization that specializes in matching seniors with appropriate retirement facilities and also provides other resources for those necessarily difficult transitions. Sharon and I went together for our first appointment with Carol. She listened attentively, asked all the right questions, and helped us begin the process of navigating the stormy seas of caregiving for a loved one with dementia, coupled with growing financial instability. She provided us with an extensive list of local facilities, complete with information on costs and services, and also pointed us in the direction of another local organization, the Del Oro Caregiver Resource Center.

  As with all other human services during this time of recession, Del Oro’s budget had been slashed. At that time their resources to provide practical support to caregivers such as respite care, and free legal/financial consultations were severely limited. But their clinical consultant was able to secure, at a significant discount, the services of an elder attorney, to recommend a local support group that dealt specifically with issues of FTD, and to offer continued emotional and practical support through regular phone calls and emails.

  Sharon, Dale, Marg, and I met with the elder attorney, Constance Hawkings. Matt participated with a conference call. Over the course of 90 minutes, Connie educated us about negotiating Medicare/Medi-Cal services, protecting assets, and getting remaining IRA accounts transferred to my sole ownership. We hashed over details of dealing with foreclosure, the advantages of bankruptcy—so many aspects of the legal system I’d never expected to need to know. I wish I could somehow rewind the tape on that meeting and relive the specifics. My memory is that the whole thing was funnier than an SNL skit, though that seems rather far-fetched given the foreshadowing of disaster beyond disaster. I don’t think our laughter was of the desperately hysterical type, but rather that we were all at the top of our form with irony and wit. Whatever the reality of the situation had been, thank the Goddess for convivial laughter.

  By March, foreclosure notices started showing up in the mailbox. Where I had once blithely answered the phone whenever it rang, I no longer answered unless I knew for certain who would be on the other end when I picked up. I dreaded the mail. I dreaded the phone.

  Armed with information from Senior Care Solutions, I began visiting local retirement communities. Maybe if we were somewhere that offered a lot of supervised activities, Mike would be easier to manage. I looked only at places that were three-tiered, offering independent living, assisted living, and memory care sections, thinking that Mike and I would be together in an independent living level apartment until it became necessary for him to move into a secure memory care section. When that time came, he would at least be familiar with that particular retirement community. When I found a place that seemed like a possible match, I did a second visit accompanied by Sharon and/or Dale and/or Marg, in whatever combination we could come up with. This was a huge decision, and the more observations and insights involved in the process, the better.

  Even knowing it would be out of reach, Sharon and I first toured the Biltmore Plaza. This was not one of the facilities on Senior Care Solution’s list of suggested places to visit. Their list was more realistically matched to my financial constraints.

  We pulled into the circular drive, handed the keys to the valet parking attendant, and entered the living room/lobby that ran a close second to that of the San Francisco Fairmont hotel. We were met by Barbara, the marketing director, who led us to her spacious office where she asked about our specific needs in a senior assisted living community, gave us a basic overview of the Biltmore’s offerings, then began the tour. She drew our attention to the living room’s large fireplace, the comfortable conversation groupings, the card and game tables, the Steinway grand piano, and the aquarium. Other than the Monterey Bay Aquarium, this was by far the largest aquarium I’d ever seen. It was about 10 feet wide on both sides of the entry between the living room and dining room, and composed the upper half of the walls on each side. The two sides were connected by a wide, graceful archway, so that when we walked from the living room to the dining, room we could look up and see neon-colored exotic fish swimming overhead.

  The Biltmore was proud of their “nationally renowned” chef and their “restaurant-style” anytime dining. We were invited to come back for lunch or dinner whenever we wanted, just call a day ahead of time.

  The tablecloths were crisp white linen, the dinnerware again equal to that found in any luxury hotel. A variety of California wines were available if guests so chose. There was a lounge area with a full bar, complete with bartender. The bar was open daily for happy hour from 4 to 7 p.m.

  “Most of our residents like to have their dinner any time from 4 to 5:30, though, of course, the dining room is open until much later for the few who prefer a later evening meal.”

  We met Lucy, the charming activities director, who told us of the huge variety of opportunities for recreation, pursuing special interests and hobbies. Every Sunday afternoon, live music was provided by members of one or another of Sacramento’s many professional groups. Last week was the Chamber Orchestra; coming up was a group from the opera company.

  The model apartment was beautiful but tiny.

  “We like to encourage people to be out and about,” Barbara said.

  There was a gym and a brain fitness group, a quartet, writing groups, reading groups. If there wasn’t a group we wanted, Lucy assured us she could help us start one.

  The residents seemed happy and friendly. As we were leaving the model apartment, a woman chugging down the hall who looked to be somewhere in her 80s stopped to say, “Move in here! It’s the best thing I ever did. More fun than a barrel of monkeys.” She laughed, then moved on.

  Back downstairs, there was a group playing bridge by the fireplace and another seemingly highly amused group playing something with dominoes, maybe Mexican Train.

  After a tour of the large garden courtyard, comfortable seating areas and walking paths, we talked for a while longer in Barbara’s office. We confessed that $9,000 a month was beyond our reach.

  “Is your husband a veteran?” she asked.

  “No.”

  “Long-term care insurance?”

  “No.”

  She gave us the card of their social worker.

  “Sometimes she finds ways of financing residencies that others have overlooked.”

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nbsp; We left our contact information and said our goodbyes. As we drove away, Sharon said, “If Dad would like any of those places, he’d like this one.”

  I agreed. He would love the style of the place. “But can you picture us in that tiny apartment?”

  Sharon laughed. “Yes, and it’s not a pretty picture.”

  Next I visited Riverside. As at the Biltmore, the Riverside aquarium served as a divider between the living room and dining room, forming the upper half of the dividing wall to the right of the hallway, but not forming an archway or stretching across to the other side.

  As the name implied, this place was close to the river. The grounds were fenced off, providing a secure parking lot with a gated entrance and exit. There was a pedestrian gate at the back of the property that allowed access to the river. I loved having easy access to the American River Parkway by way of the Gold River nature paths. It would be nice not to have to give that up.

  As with the Biltmore, Riverside had restaurant-style dining and a well-credentialed chef. They had a full bar but, unlike at the Biltmore, their bartender was only on duty from 4:30 to 7 p.m. for Friday, Saturday and Sunday happy hours.

  The marketing director was so charming, I thought we might become new best friends. I later realized that all marketing directors are charming, and there is always the implication that they might become one’s new best friend, but this was only my second visit to a retirement “facility.”

  Riverside was considerably less per month than the Biltmore Plaza, but it still had an air of genteel refinement. In addition to liking the ambience, I was particularly interested in their brain fitness program. The exercises made use of previous common experiences with movies and music of our times, some political trivia, sports trivia, and other aspects of our common culture. I could picture Mike enjoying this program, and mightn’t it keep parts of his brain active at least for a while? He had been a whiz at Trivial Pursuit. I always wanted him on my side for music and movies, history and politics, but he even often managed to come up with the answers to questions in the sports category—a surprise, since his main connection to sports was his annual viewing of Super Bowl halftime extravaganzas. Halftime only. He’d already be back to an old movie on Turner Classics before the kickoff for the second half of the game.

  Sharon and I visited Riverside together, as did Dale and Marg and I. We all liked the look and feel of the place. Residents were friendly and cheerful. There was a grand piano in the lobby/living room and a small upright in the second floor gathering space. The perky activities director assured us that both pianos were tuned monthly.

  Riverside would be around $5,000 a month. Considerably less than the Biltmore, but still hardly affordable. The truth, though, was that nothing would be affordable. Wherever we ended up, I would be dipping into what was left of our nest egg to meet monthly expenses—not a good long-term plan.

  With the major exception of affordability, Riverside more than met our criteria. As with the Biltmore, the apartments were tiny. But there was a unit on the ground floor that had a little patio and an outdoor entrance. That was bound to feel less closed in. Friends could come to our front door from the parking lot. Sunny could still have a bit of outdoor space. It would feel less institutional to enter from the outside rather than walking through the living room, down the hall to the elevators, then up to the second or third floor and down another hall to our apartment.

  It was all so uncertain. If Mike only had two more years on this earth, our IRAs would cover a nice place like Riverside—a place with a look and style that Mike might warm to—a place with activities that might be a good fit with his personality. I wanted Mike to be as happy and content as possible during his continuing deterioration. On the other hand, much more than two years at a place like Riverside would have us destitute.

  I was sleepless with worry. Weighing and measuring alternatives was important and, ultimately, I hoped, productive. Endless worry was not. I made a conscious choice to tuck my worries into a compartment and only let them out once or twice a day. Of course, the lock on the compartment didn’t always hold, but the practice helped me balance the tightrope between necessary action and despair.

  THE DOWNHILL SLIDE BECOMES AN AVALANCHE

  July through December 2009

  Our financial situation was becoming increasingly difficult. It was a stretch to make even the bare minimum payments on our credit card bills. My continued use of new, low interest credit accounts, allowed me to pay down balances on old accounts. I was managing month by month, not wanting to look at the big picture, but I knew it was a juggling act that was not sustainable. Sometime soon, one of the juggled balls was bound to drop.

  Sharon and Doug, aware of my situation, suggested we meet with their accountant to get his advice. Laying it all out before him, seeing it through another’s eyes, confirmed what I already knew but had been somehow been keeping at arm’s length. We were in dire straits. There was talk of bankruptcy. There was talk of “walking away” from the house. There was talk of protecting retirement fund assets. I had never once in my whole life not paid a debt. The idea of walking away from the house was repugnant to me. Bankruptcy was repugnant. I was 74. I’d worked hard all of my life. We’d set money aside for the nest egg that, over the course of the past year, I’d watched shrink from turkey-sized to hen-sized. My head was spinning.

  In the meantime, I was pulling soaking wet towels from the linen closet and putting them back in the dryer. Hiding laundry soap in an attempt to keep Mike from doing a whole load with only one or two pieces in it. He’d always done more than his share of the laundry, and of the two of us he was the neatest when it came to folding things and putting them away. I didn’t want him to be at a loss for any of his usual routines, but I was on constant damage control duty.

  I was also on constant damage control duty with our finances. Which card could I draw money from to make the payments for whatever month’s bills I was looking at? Would I have to pull money from an IRA account to make ends meet? Even with the bursting of the real estate bubble, we still had some equity in our house. In the past, home equity had provided a sense of security, but the recent bursting of the real estate bubble changed things. How much? I wondered. I set up an appointment with Joanie B., the real estate agent who had handled the sale of our first Gold River home and the purchase of the home we were now in. Next I arranged for a friend to take Mike to a movie on the afternoon of Joanie’s visit.

  We sat sipping tea in the living room while I told her of my dilemma, and she told me of hers. She’d heard from a neighbor that Mike was having cognitive difficulties, but hadn’t known to what extent. I’d heard of the real estate crash, but hadn’t known to what extent.

  “The market’s totally tanked,” she said. “I haven’t sold a house in two months. No one in our office has. Luckily Jim’s job seems fairly secure, but I don’t know what we’d do without his paycheck.”

  As with others of my generation, I grew up with the mostly unspoken but powerful taboo against talking about sex or money. I took a deep breath and plunged rapid-fire into the forbidden territory of money.

  “We’re in a mess. Mike can’t function either as a choir director or as a professional singer. My once healthy book sales are practically nil. School budgets have been slashed. Teachers and librarians have no money for supplemental reading material. There’s no education money available for staff development workshops or author visits to schools, so no more of that. I’m nearly as unemployable as Mike is. Really, we should be able to live on our teachers’ retirement funds, but our expenses are over the top. In 2007 our combined musician/writer income, beyond our retirement income, was around $30,000. This year we’ll be lucky to hit $1,000. I’ve always thought that if things got too tight, we could sell the house … ”

  “How much do you owe?”

  “Around $230,000.”

  “Even if you could sell this house, which I doubt, you wouldn’t clear enough to cover co
sts. Seller fees, repairs—you’d probably have to replace the fence. All of the fences in here have passed their use-by date. I haven’t seen one recently that’s not full of dry rot. It would end up costing you money to sell,” Joanie said.

  I sat stunned for a moment. It was bad news that we would get nothing from the sale of our house. Worse news that it would actually cost us money to sell it. But I trusted Joanie’s real estate smarts.

  “I can’t stay here,” I told her. “I can’t manage the maintenance on my own. Mike goes from room to room looking for things, moving things around. I just get one room put back together and he’s been through two more. Plus I can’t really afford the monthly payments or the HOA fees.”

  Joanie gave me a long, slow look. Speaking in a near whisper, she said, “You didn’t hear this from me. Understand? What I’m about to say, I didn’t say.”

  I nodded in puzzled agreement.

  “What some people might do, have done in similar situations, is stop making their house payments. That frees up money for other bills. It’s taking banks up to a year to actually foreclose. Longer sometimes. Free rent for a year.”

  I gazed out the sliding glass doors that led to the patio. I watched the water in the fountain of Mike’s handiwork steadily bubbling.

  “I don’t think I can bring myself to do that.”

  “You might be surprised. I’m just sayin’…. Remember how we celebrated when we closed the deal on this house? It’s a great house,” Joanie said, looking around the living room and out onto the patio. “Great floor plan. I sort of wanted it myself.”

  “It could still be yours,” I told her.

  She laughed—not that full-out kind of laugh that erupts when something’s funny. More the subdued half-laugh that recognizes irony, or futility, or the general trials of life.

  Joanie stood to leave. I walked with her to the door. Before she stepped outside she turned to face me. “Think about what I didn’t say. Think about what you didn’t hear from me. Everybody’s in a mess. You’re not the only one.”