I shifted a few things around, making sure that every setting had a knife and fork, and let the rest go. Matching china patterns, placements of utensils, napkins on the “right” side of the plates—none of that was consequential.
Mike sat at the head of the table and served the Christmas lasagna. He served sausage lasagna to the vegetarians, vegetable lasagna to the carnivores, but that was an easy fix. Mike ate quickly, not joining the conversation. When he was finished, he carried his plate to the kitchen, then came back to clear the table. “Not yet,” first one and then another laughed as they guarded their unfinished dinners.
“Shall I get the cake?” Mike asked.
Stalling for time, I walked him to the kitchen where the very fancy cake still sat in its bakery box. “Can you get the cake cutter?”
“Sure,” he said, and went to the china cabinet and took the cake cutter from the drawer.
“How about the cake plate?”
Again he went to the cabinet and brought out the cake plate.
“Shall we make coffee?”
“Sure.”
He filled the coffee pot with water, put the filter in top, and put in two heaping tablespoons of coffee. I added more coffee as Mike took the cake from the box.
Mike cleared the table of dinner plates and brought in the cake. Unlike most Christmases, no one overindulged with second helpings of lasagna in 2009. They were lucky to have finished one helping.
We sang “Happy Birthday” to Dale, Mike served the cake, poured the coffee, finished his dessert quickly, took his cup and plate to the kitchen, and came back to clear the table. He hovered until one by one people finished and gave up their dessert plates. I followed him into the kitchen and put the dessert plates into the dishwasher as he rinsed them. He’d already loaded up the dinner plates. When the last dessert plate was placed in the rack, Mike announced he was going to bed.
“It’s a little early,” I told him.
“I’m going to bed.”
He stood in the hall outside the dining room and said, “Goodnight. I’m going to bed.”
People called their thanks out to him as he climbed the stairs.
By this time the kids were playing with their gifts, or watching TV. The adults lingered at the table, sad and drained.
We bemoaned the fact that so far no anti-anxiety meds had eased Mike’s agitation. We tried to guess at the next progression. Hazel said over and over, “I just don’t know why this had to happen to such a nice man. Mike was always such a nice man.”
I knew without a doubt that this was the last time we would all be seated around this table that had for decades held so much food for so many of us.
When the house payment came due on the first of January, I didn’t take the mortgage coupon from its special little box. I didn’t take my checkbook from the drawer. I didn’t make a house payment. Not then, nor the next month, nor the next.
THE DREADED DRIVING DECISION
January through April 2010
I agonized over Mike’s driving. Not long after driving the rental car at night with no lights on, Mike made a trip to the library to return books, then came back, books in hand, saying the library wasn’t there anymore. The library was not far from home, and was a very familiar place to Mike.
Soon I was driving wherever we went that was unfamiliar, or more than a few miles, though Mike continued to drive to our local market, and to Camerata rehearsals, which were just a few miles from home. Friends and family now often asked, “Is Mike/Dad still driving?” I knew the implied question: “Why is Mike/Dad still driving?”
In my heart of hearts, I knew Mike shouldn’t be driving, but I dreaded the time when I would have to take him everywhere, and when I wouldn’t even have one of those brief respites to myself, when he was at the market, or at the local Starbucks. Finally, though, good sense won out. One morning, while he was showering, I called Dr. Carlson and asked that she notify the DMV that Mike suffered from dementia and should no longer be driving.
In February 2010, the “order of suspension/revocation” notice from the DMV showed up in our mailbox. Mike showed little response to the news. I assured him I would take him wherever he needed to go, and that was the end of it until a few mornings later when he wanted to drive to the market.
“I’ll take you,” I said.
“No! I’ll drive myself!”
I showed him the DMV notice that was still sitting on the table next to the telephone.
“You can’t drive now, hon. I’ll be your chauffeur,” I told him.
He went to the phone and called the doctor. Surprisingly, he got through to her. He asked that she call the DMV and tell them he could drive. She said that she couldn’t do that. He hung up and went upstairs to bed. When I went to check on him half an hour or so later, he turned to look at me. “I’ve always been able to drive,” he said.
I sat beside him on the bed, rubbing his back and shoulders.
“I’m sorry things are so hard for you these days. But I can help. I love you. I’ll help.”
He rolled to the other side of the bed, threw the covers back and got up.
“I’ve always been able to drive!”
Later the next week, Corry’s family and friends gathered in Berkeley to celebrate her completion of a master’s degree in history. She’d managed this after years of juggling classes and study time with a full-time workload, so it was definitely time to party. I drove us over in the Honda, telling Mike we were going to leave the car with Doug, who would take it to a place he knew to get it detailed. This much was true. What I didn’t say was that the same auto-detailing place, as prearranged with Doug, would be putting the car on their sales lot.
The party was great fun. Mike and I danced for a few songs, then he went on to dance with several of the other women, all longtime friends. It was if, for a few hours, the old Mike was back. While he was on the dance floor, I slipped the Honda keys and pink slip to Doug. We rode back to Sacramento with Dale and Marg.
In the morning Mike piled up the week’s newspapers and took them to the recycling container in the garage. He was back in an instant.
“Where’s my car??”
I reminded him that Doug was taking it in for detailing work. I confessed that we would be leaving it over there to be sold. Mike went upstairs to bed.
If I were to rank the decision to have Mike’s license revoked on a scale of one to 10, I’d think it was about a seven. The decision to move us to a retirement community: a 10. Squared. I was convinced of the need to be proactive, but maybe we could hang on in Gold River for a while longer? If Joanie’s estimate was correct, we had at least another eight months before the actual foreclosure.
Shortly after the Riverside visit, I was felled by a nasty cold/flu bug that had been making the rounds. Most of the day I’d been in our upstairs bedroom, bundled in throws and a comforter, stretched out on the chaise. So much to do and there I was, not making phone calls, or doing any of the much needed organizing of my office, the one place I could purge without much interference from Mike.
The good news about this very minor illness was that it removed any lurking doubts about the wisdom of the moving decision. That morning in bed, sore throat, fever, achy, I asked Mike if he would call our dentist’s office to cancel my 10 o’clock appointment. “Sure,” he said. “Is the number in my book?” I said it was. I also asked if he’d take Sunny out. “Sure,” he said, not moving. Sunny increased her whining, scratching, let-me-out behavior. “Could you take her out now?” I asked.“Sure,” he said, still lying there.
“When?”
“Right now!”
But he didn’t move. I got up and took care of the necessities. The shortest possible walk with Sunny had me shivering with chills on my return. I dragged myself back to the chaise. I couldn’t help thinking, though, about how that would have been had I really been sick.
I gave Mike his meds, which he could no longer manage on his own
, and reminded him to eat a bite—he could fix a bowl of cereal with sliced banana, but he had to be reminded. I had to admit that it would be good to be at a place where meals were provided and, if needed, help would be available.
For the rest of the day I popped aspirin and dozed. At 6, Mike was downstairs watching CNN. He was scheduled to be picked up for a Camerata rehearsal in 15 minutes. I went downstairs and put the after-rehearsal wine it was his turn to take in a bag and reminded him to take it. I’d done nothing about dinner for us, but one missed dinner was no disaster.
Back to the chaise.
Afternoon two of the nasty bug had me searching through the refrigerator in hope that dinner would magically appear. I saw that between a chunk of leftover rice from Thai food takeout, and some hunks of beef in the freezer, I almost had the ingredients for a quick beef stroganoff dish.
“Would you mind picking up a few things at Bel Air?” I asked Mike.
“I can do that,” he said, turning away from the ever-looping “A Streetcar Named Desire.”
I made a list, knowing even in the cold/flu fog that five things were a lot, but forging ahead. I read the list to Mike: medium-sized sour cream, a head of lettuce, cherry tomatoes, orange juice, a package of mushrooms from the produce department.
“Do you have money?”
He took his wallet from his back pocket and counted out $26.
“Plenty,” I told him.
“Where are the keys?” he asked.
“No, hon, you’ll have to walk.”
He looked at me blankly.
“Your license isn’t valid. You’ll have to walk. Or maybe I should just drive you over later.”
“No, I can walk!” he said, irritated. “I know how to do that!”
Bel Air was five blocks away. The weather was nice. It was good for Mike to get out and about. These were all things I reminded myself of as he stomped out the door.
Twenty minutes later, Mike was back, happy, eating from a large Yogurt Monkey container.
“Mint,” he said, smiling. “I got everything.”
“Everything” consisted of a small container of strawberry flavored cream cheese, orange juice, lamb chops, a dozen eggs (we already had an untouched carton of eggs in the refrigerator), and bananas.
“No sour cream?”
“Oh. Didn’t I do the right thing?” he asked, the turned-up corners of his smile turning downward.
“No. It’s fine. We need sour cream for stroganoff, but we can have something else.”
“I can go back.”
“No, we’ll find plenty to eat.”
“No, I’ll go back.”
“Well … if you feel like it.”
“Sure. Where are the keys?”
“Well … you’ll need to walk.”
“Okay! Okay! I can do that!”
He was back soon, finishing another large Yogurt Monkey, unloading a quart container of chocolate chip ice cream, a large package of cream cheese, cherry tomatoes and Chinese cabbage.
“Okay?” he said.
“Great. Thank you for doing that,” I said, smiling. That should have been my response to his first return from the store, but it took me a while to figure that out.
He settled back to “A Streetcar Named Desire,” and I threw something together that I loosely called dinner. We finished it off with mounds of ice cream.
In the morning I called Riverside and arranged to put a $500 hold on the downstairs apartment with the little patio. I’d done the math. I figured I could keep us there for at least a year and a half, maybe two, before every retirement account was drained, and we’d reach rock bottom. It was a frightening situation. But, I reminded myself, it was nothing in comparison to what post-earthquake displaced Haitians were experiencing, or what any of the estimated 100,000 homeless Iraqis had to deal with, or, for that matter, what the growing number of homeless people here in Sacramento went through every day.
A 6-BY-5-FOOT AQUARIUM
Spring 2010
Because of Mike’s diagnosis, the director of Riverside’s memory care program needed to evaluate his condition before we could be accepted into an independent living space. Rachel Martin came to our house for the evaluation. She was lively and charming and soon won Mike’s confidence. His other neuropsychological evaluations took place in offices where he was uncomfortable and prone to defensiveness, but he was relaxed at home with Rachel. I felt her evaluation offered a much more accurate version of what was up with Mike than any of the previous evaluations. They laughed and talked easily during the course of her two hours with him.
As she was leaving, Rachel handed me her card with three phone numbers—work, home and cell—and her email address.
“I’m yours for life,” she said. “Once I’ve evaluated someone, they’re always part of my caseload.”
Later that day, Rachel emailed me a copy of the results that she would pass on to Carolyn. Nothing in her report surprised me, but it was striking to see it all listed in this form:
Subject answers questions or performs tasks without realizing the consequences of his actions.
Difficulty learning and retaining new information.
Difficulty comprehending logic.
Difficulty initiating a new activity outside of his routine.
Difficulty with impatience.
Difficulty sequencing daily activities.
Beginning to have difficulty identifying common objects visually; however, if the object is described he can identify it.
Periods of delusion, takes events in his life and mixes them up with other events. May say things like, “I throw stones at squirrels to keep them from eating the hummingbirds”; however, in reality he does not throw stones at squirrels and, due to his inability to comprehend logic, if you tell him that squirrels are vegetarians, he becomes confrontational.
Difficulty with calculations and numbers.
Difficulty with time relationships.
Wants to please.
Denial of any memory difficulties or medical problems.
Flight of ideas when in a conversation.
Requires routine and structure to prevent heightened anxiety.
Difficulty with comprehension.
May have difficulty telling family or care providers if he has pain, however he will act out and have a change of behavior.
Difficulty when confronted due to lack of comprehension of logic.
Mild OCD tendencies.
Carolyn called the day after the evaluation to say that although Mike’s condition would generally disqualify us from entering the independent living section, both she and Rachel were convinced that, because of my competence and attitude, we’d do fine there. It was reassuring to learn that two objective observers considered me to be competent. I wasn’t feeling so competent right then.
I visited Riverside again for the purpose of checking out the apartment I’d reserved. I got a floor plan complete with measurements. The total living space was about 500 square feet. I tried to picture us living there. I got scared. It was simply too tiny. It was too expensive. Carolyn returned my deposit check, and I continued the hunt.
The “Gentle Breeze” place with three goldfish swimming around in a bowl on the front counter was most affordable, but we weren’t yet at rock bottom, and that’s what it would have taken for me to move us into such a place. The staff, probably overworked and underpaid, was unfriendly. Residents aimlessly walked the hallways or were parked against a wall, strapped into wheelchairs, probably overmedicated. It would not be winning any awards for cleanliness.
I finally settled on a 6-foot-by-5-foot aquarium place, Carmichael Oaks, only a few miles from our Gold River house. It was slightly less expensive than Riverside, and it had the great advantage of comparatively spacious apartments. Though downsizing from a 2,700-square-foot residence to a 1,000-square-foot apartment still presented a daunting task, it did look like a space we could live in. The marketing
director there, Charlotte, and the executive director, Janice, were both charming and accommodating. They moved the upright piano from the lobby/living room down to the assisted living wing, making room for Mike’s beloved Mason & Hamlin baby grand.
When I asked if we could paint one of the walls in our apartment living room with an accent color, they said sure. Provide the paint, and Marco, the maintenance man, would paint it for us. Marco! He painted the wall and put organizers in our closet. He set up the solar-powered water fountain Dale and I had chosen for our balcony. He was there within minutes when the toilet became clogged. Maybe retirement home living wouldn’t be so bad after all.
August 2015
Dear Mike,
I put clean sheets on the bed today. Not our king-sized, solid oak, Craftsman-style Stickley bed. The one we shared for such a long, long time. The one that held laughter and tears, love and passion. Not that one. That one was sold through a consignment store. That one was too big for my scaled-down life.
I put the freshly washed, basic full-sized cotton sheet set, bought at Penney’s when I moved into the little duplex, on the new, basic bed. They’re serviceable—not as soft as the sage green, 800-thread-count, Egyptian cotton sheets that were last on our old bed. I remember when you brought those sheets home.
“They were on sale,” you said, as if “on sale” was the same thing as “free,” or even “affordable.”
How you loved new sheets and new towels. Even with the abundant closet and cupboard space in our Gold River house, the linen closets were bulging with sheets, and towels, and tablecloths. Like your sock drawer, you kept our linen closets beautifully organized. Did you know how much I appreciated that organization? Did I ever tell you? I hope so.
I think of you every time I open my linen closet here in River Park. Things are bunched up, not ever-so-neatly folded and stacked. Yesterday I opened a cupboard door and a bath towel fell out. You would have laughed at me, then re-folded the contents of the cupboard. I laugh at me, too, but I don’t re-fold. It’s not my nature the way it was in yours.
'til Death or Dementia Do Us Part Page 16
