brain degeneration

A Resting Place In The Garden of Eden

“Be sure you blow out the candle before you go to bed.” It was my husband’s voice reaching out to me. This was a familiar warning, because when Tommy was alive, he repeated that order every Friday night after I lit the Shabbat candles.

“It has to stay on for 24-hours,” I said, not aloud, just in my head as I have done for many of our afterlife conversations. “It’s a memorial candle, it marks your November 2 anniversary.”

“Your people are weird,” Tommy said. “Why celebrate my death? Why not my birthday? Our marriage?”

“It’s not a celebration,” I said. “More an occasion to remember our loved ones. Did you hear me recite the memorial prayer; His resting place shall be in the Garden of Eden? I like that. It helps me cope.”

I went on, “I imagine you in my version of the Garden of Eden, playing golf with Bill and some other departed duffers. Your voice is fully repaired, so you’re teasing each other with each shot. Am I close?”

“Pretty good,” Tommy said. “Add in that we never have to reserve a tee time. We can walk on any course, any time of day or night.”

I loved that image, so I took our conversation a step further. “Can you believe, sweetheart, it’s been an entire year? Blink of an eye,” I said.

“Well, you’ve been a busy girl during that year.”

In my mind, his voice was proud not angry. I recognized that cherished tone because it was one that bound me so closely to this second mate. I could see him at the 2006 book launch for my memoir; first row, first seat, beaming at me as I stood on the stage of Women and Children First.

Tommy was my first reader for the book. I’d hand him 10 pages, which he grabbed as eagerly as if I was writing one of the Elmore Leonard or Ruth Rendell novels he loved.

“Great,” he’d say. Or sometimes, “I don’t like the chapter title,” or “I don’t understand this Yiddish word.” Those reviews were my cue to alter or translate.

“Yes, it has been quite a year,” I said, winding back to his assessment. “You supported all of my activities, right, honey?”

There was a hush from my illusive conversation partner. He’s likely reminiscing about our house, I thought, the one we lived happily in with our Golden Retriever, Buddy. The house I sold.

A few beats later, his response: “It was hard to watch you leave Dakin Street,” he said, confirming my suspicion. “But I understood you had no choice. Without me to do the maintenance stuff and without Buddy to protect you, it was too large and too risky to stay alone. Still, I felt a pang.”

I quickly changed the subject that was raw for both of us. “So, Tommy,” I said. “How are you keep tabs on me? Watching on high from a cloud?”

“I read your blogs,” he said.

I hit pause on our chat as I quickly reviewed a year’s worth of posts. Were they all favorable? Had I exposed anything he would prefer hidden? When I started the first blog, “The Rookie Caregiver,” I called him to my computer and asked if he’d like to read what I had written.

“Pull up a chair,” I said, nervous about his reaction. My husband was more private than I, even elusive about his past, so I worried how he would feel about this Internet publicity.

But he avoided a seat and instead stood behind me as I scrolled through the pages. He patted my shoulder, and raised two thumbs, his universal sign back then of “Okay by me.”

“You’re fine with all of this past year’s posts?” I said to my dearly departed. I wanted to be sure I understood him correctly. I knew there could be several filters between heaven and earth that might mess with communication.

“Sure,” he said, “I’m quite the superstar up here,”. “Everyone is jealous they’re not kept alive – well, sort of – like me.”

“Your privacy,” I said, “you don’t have a problem with me sharing our stories with the world?”

“Sweetheart, don’t get a big head. It’s your world, your friends, and your fans. You’ve never kept secrets from them.”

I was relieved to hear this, to get Tommy’s blessing. “Okay, honey,” I said. “You can rest easy. I promise to blow out the candle before I go to bed.”

“Good girl,” he said, then, “love you, Wifey.”

“Love you, too, Hubber, I said; misting at the memory of our pet names for each other.



Déjà vu

I watch as the nurse places two plastic bags in the locker. One holds my friend’s shoes; the other clothing he has removed following the nurse’s instructions.

“Will my stuff be safe?” he says to me.

“If you like, I’ll put your wallet and watch in my tote,” I say.

What I don’t tell my longtime friend, who I’ve accompanied to this Outpatient Ambulatory Surgical Center, is that I’ve got this down pat. In Tommy’s case, I stowed his aged wallet and wristwatch in my bag where it never left until I placed them on a mini-memorial atop his chest of drawers in our bedroom.

“I left my wallet home,” my friend says.

“So, no worry,” I say. I sit on a chair facing his bed while we wait for another nurse to come in to get his vitals. Next, the anesthesiologist reviews drugs they will use to knock him out, and finally the surgeon appears to discuss what happens next.

While this is going on, I zone out and recall the time a year ago when I sat with Tommy in a pre-op area. In his case, the ENT team planned to insert a feeding tube down his throat so he could get nourishment. He was dehydrated – that’s what brought us initially to the hospital – and the tube was to solve his problem. Then, we’d be on our way home.

After they wheeled Tommy out of the pre-op area to perform the procedure, I returned to his hospital room. The phone rang. “We have a problem,” said the doctor on the other end. “When we tried to insert the tube, there was a blockage. We’re pretty sure it’s cancer.”

The voice of my friend’s surgeon wakes me: “He’ll be out of surgery in a half hour, so just stay put in the waiting area.”

Sure enough, before I know it, the surgeon finds me to say, “He did great. You can go in and see him.” My friend looks fine, and is chatty. Perhaps the painkillers, or his relief all is over is making him eager to converse.

But, as we talk, this latest nurse is monitoring his blood pressure and it is too high. Could our gabbing be the culprit?

“Do you mind?” my friend asks with an eye to the closed curtain that will lead me out.

“No problem,” I say. Then once more I go to thoughts of Tommy and the time he was in this hospital and wouldn’t let me out of his sight. During the 10 days he was here, I’d sleep on a cushioned window seat. On the few nights I didn’t stay over, I’d return to find him wearing a weighted vest.

“He tried to leave,” a nurse explained. “Had his clothing, shoes, and baseball cap on. Was halfway down the hall before we caught him.” Often I’d wish he had escaped, for those hospital days were the worst of my life -- heartbreaking and fruitless.

Once my friend’s blood pressure subsides, I’m allowed to return to his room. He is dressed and ready to be escorted via a wheelchair to curbside where a cab will return us to his nearby apartment.

At his high rise, I push open the lobby doors to save him from exertion. We go upstairs and I hang out for a few hours until I’m satisfied he can be on his own. “I can call neighbors if I have problems,” he says. “Go home.”

When my Tommy was finally released from the hospital – with his internists’ advice to forgo risky surgery because it would be torturous and not cure his aphasia or his increasing dementia -- it was an ambulance that took us home.

When we arrived, neighbors were waiting. I stood on the porch as the drivers lifted his stretcher up the stairs. The neighbors followed and held the front door open. With a gentleness and reverence that reminded me of a potentate’s litter, our caravan moved to our bedroom where a hospital bed awaited.

With Tommy safely settled, in the house where we lived for 13 years, away from the hospital setting I had grown to despise, the neighbors stayed to help set up the equipment. Oxygen tanks and medical supplies stuffed the hospice room.

An evening phone call to my post-surgery friend confirms he is managing okay. The painkillers are doing their job and he is comfortable watching television. “Thanks for being there for me,” he says.

Because Tommy wasn’t able to speak for the last year of his life, I didn’t get those same words. But, as many a caregiver will tell you, it was an honor to be there for him.





Flights of Fancy

I knew it had to be Tommy playing tricks. It happened as I was preparing for a visit to Los Angeles -- the first travel from my new rental apartment. On the day before my trip, I opened my wallet to take out my drivers license. My plan was to clip the license to my boarding pass, which, in my obsessively-organized mind, would ease my passage through security.

Gadzooks, the license was gone!  With my heart racing, I dropped to the couch and retraced my steps. Where was the last place I had used the license? Was there an establishment that required this extra identification in order to make a credit card purchase?

Then I remembered: one day, feeling nostalgic about all of the changes in my life, and pining for my deceased husband, I had switched the driver’s license, which was under the clear plastic slot,  to another spot in my wallet. Now, instead of my government-issued face greeting me, it was a color photo of our wedding portrait.

But the driver’s license edge wasn’t peeking out from any other slot like those of my credit cards. Where had I put it? Then, I jabbed my fingers behind the photo and voila. I was certain I had put it in its own niche where it could be easily noticed and extracted, but somehow, someone -- and I am now pointing fingers -- had hidden it tightly behind the 2-x-3.

In my flight of fancy, prior to the actual airplane I was to board the next day, I decided Tommy was having a bit of fun with me. When he was alive, he often scoffed at my habit of hyper-preparation. As example, two weeks before any takeoff, I’d lay everything out in stacks next to my open suitcase. This way, I could add or delete as departure day neared. 

When he’d walk past the room and spot the gaping luggage, he’d say, “We’re not going for two weeks. What’s the rush?”

“This makes it easier,” I’d say, which made sense to me, but to my casual husband, who refused to pack until the night before, or morning of, my regime deserved ridicule. 

After further daydreaming, though, I decided Tommy was also trying to remind me of the trips we had taken together. He wanted to be certain I wouldn’t allow those memories to fade.

With my departed husband prodding my subconscious, I paused preparations to conjure up those long ago vacations. As if I were assembling a jigsaw puzzle, I positioned images, expressions, and other mementos side-by-side until I could see a fuller picture.

First it was words that came to mind, likely because I was grateful for the years Tommy still had speech. “Mind the gap,” I could hear him saying. We were standing on a London platform awaiting public transit. On that trip, we visited Buckingham Palace, Harrods, and other typical tourist spots. And in my revery, I also remembered,  “punting on the Cam,” held over from a visit with friends in Cambridge that he enjoyed repeating for weeks after we returned home.

We toured Italy -- the Spanish Steps in Rome, the destroyed city of Pompeii, the hillside villages of the Amalfi Coast -- and dined in restaurants the guides promised were frequented by locals. I was able to capture bits and pieces, but so much of those travel memories had been slipping away with each passing year.

“Yes, those were wonderful,” I told Tommy aloud. “I’m so happy we were able to take them together. I noted that my husband, in this celestial cameo, hadn’t brought up our last mutual trip to Boston. I assumed he didn’t want to remind me of the difficulties after he had lost speech and his brain suggested to him a false bravado.

“You can’t go alone,” I remember pleading when he insisted on taking a walk from our bed-and-breakfast to nearby Jamaica Pond. I couldn’t join him for one reason or another, but he just smiled at my warning and pushed past me.

I started to cry. “Please, honey,” I said. “I’ll worry about you crossing that busy street and being late for our date. Please stay here with me.” And gratefully, he did.

Had Tommy held onto some resentment from that episode? Would that explain his current trick? No, I prefer to think my first notion was on target: my dear husband was just sending me a message, “Have a safe trip,” he was saying, “and don’t forget me.” As if...


Green Nails and Other Acts of Rebellion

“I know you hate them,” I say to Tommy during one of our frequent celestial conversations. "But when you died, you forfeited your vote on my nails.”

If my husband were still alive, I would never have handed over a bottle of Estée Lauder’s Absinthe to the manicurist. He had made it clear that he found shades other than natural, beige, or a subtle pink garish.

It was easy to go along with his preferences when his wishes were earthbound because my spouse of 14 years was a dear. “He makes me feel as if I walk on water,” I’ve often told people who were curious about the differences in our religion, bank accounts, family relationships, and levels of education. And let me tell you, that’s a sentiment not easy to come by.

There were other habits that Tommy brought with into this second marriage that I tolerated, even when towards the end of his life, were magnified by an illness that included brain degeneration.

At first I tried, “Honey,” I’d say putting a hand on his arm. “Sit, you can clear up the counter after we finish eating.” But, he’d touch my cheek -- a gesture I took as “you’re cute, but not going to happen.”

So, while I started in on the meal I prepared (that was our division of labor, I was the cook, he was the bottle washer), watching a rerun of “The Andy Griffith Show,” Tommy would rise, leaving his food to turn cold, as he put various utensils in the dishwasher, replaced the menu’s ingredients in the refrigerator or cupboard, and wiped down the countertops. By the time he returned to his chair, I was usually on my last mouthful.

Now, you guessed it, in my new life sans spouse, everything -- dishes, ingredients, serving spoons, and more -- remain out until I feel like cleaning up. I imagine Tommy and these waiting kitchen objects engaged in conversation: “Can you believe it,” the tossed dishtowel says to my husband. “The woman you thought walked on water has become a slob.”

“How long do you think she’s going to leave us sit here?” I could swear the frying pan adds. “Doesn’t she realize the grease is going to harden and make my clean up that much tougher?”

While those bossy things are jabbering about me, my resurrected husband is smiling. If I place him in the conjured scene while he still had voice, he’d say, “I had a feeling that would happen. She’s a sweetheart, but without me around, I can see how she’d get sloppy.”

Now, if it was later in his life, when his aphasia erased speech, Tommy would just shake his head and turn the thumbs of each hand down. A sign of displeasure that is now bouncing off my sloven shoulders.

I ignore my pretend cast of characters who are casting dispersion and finish my meal. With my viewing partner gone, I have switched television programs. Sheriff Andy has given way to Mr. White, of the current hit, “Breaking Bad.” Also, instead of kitchen-table viewing, in my new apartment, I’ve transitioned to couch with dinner tray on lap.  

I’m not certain if this counts as a genuine act of rebellion because Tommy and I weren’t watchers of the drama back then. But, the violence and drug themes might have put him off. Remember, this is a man who prefers nails in neutral shades rather than tropical colors.

This part though, is definitely treasonous. I stack the dinner dishes in the sink, intending to place them in the dishwasher maybe this night, maybe tomorrow morning, maybe even tomorrow evening.

With an evil smile, likely inspired by the TV show, I turn to the figments of my imagination and say, “I don’t care what you think. The dishes can wait.”

Everybody but Tommy receives this declaration aghast. “Has she fallen this low?” I believe the empty wine glass says to the salad plate. Then, the crabbing crew turn to my husband expecting equal derision and disbelief.

But, he is laughing. A subtle, sweet laugh as if he is in on the joke. “Relax,” he says. “Give her time. She’s like a kid let out of school, testing her independence. Just watch, in a few weeks, her kitchen will look more like ours did when I was in charge.”

Tommy may be right, for unwittingly, I just returned the salad dressing to the fridge pre-tuck in. Oh well, the rebellion was fun while it lasted, but, the green nails definitely stay!

The Men In My Life

I’ve unpacked the tin tubes, plastic posts, and curved tops from the skinny box that has arrived from Walmart. The directions for the shoe rack appear fairly simple: attach this to that, then that to this, and finally, remove scrambled shoes from the floor of my bedroom closet and set them neatly on the gizmo.  Alas, my assembly looked like a wacky Lego, rather than the structure promised on the carton’s front.

Ramir to the rescue. In less than five minutes, he unscrewed and repositioned all of the parts until it was a replica of the image. Ramir, along with George, Greg, José, and Roberto, who are members of the maintenance crew in my apartment building, have smoothly taken over the helpmate role once performed by my husband, and several men who lived on my block on Dakin St.

Back then, when Tommy and I were in our three-bedroom house, John topped the team who cared for us. Even before my spouse became ill, when he was able to still mow the grass or shovel the walk, John would beat him to it.

“Honey,” I’d say. “I hear a snow blower outside. Do you think it’s John?” 

We’d both go to the window, open the drapes, and wave as we saw our neighbor steering through through white mounds on our front walk on his way to our driveway.  While John was the über neighbor,  there were other males who came to our aide. 

“What ever you need, any time of day,” was what Casey said as the ambulance drivers were bringing Tommy up the stairs from our ride from Northwestern Memorial Hospital. Then, Casey placed a yellow post-in in my hands with his cell phone number. 

Joél on Dakin St. asked how he could help after I had hip surgery. “My car needs maintenance,” I told him. “Give me the keys,” he said.

During the 12 days my husband was in hospice, upstairs in the bed with railings on both sides, his long-time buddy, Randy, visited several times a week to rake leaves and de-clutter the downspouts. 

After Tommy died and I sold our house and moved to an apartment building, friends who were experienced renters said, “You won’t have to worry about lawns or snow anymore. And if anything needs fixing, you just call maintenance.”

And I did. At first, my requests were basic: replace a dead light bulb, unclog the bathroom sink’s drain, coax a stubborn ice maker. But the new men in my life have far surpassed those everyday appeals. With care and precision, members of the staff have hung all of the two dozen paintings on the walls of my convertible studio. 

And it was Ramir who was at the door after this request, “I have a Hoover Upright vacuum cleaner, and I can’t figure out how to put it together.”  As I stood nearby, feeling like a dazzled intern watching a surgeon, Ramir studied the carton’s image, and quickly performed the operation. “Let’s test it first,” he said. He plugged in the cord to the wall socket and after the first loud hum, showed me how to steer it. Then, he stood by to be certain I could manage the hefty machine on my own.

“Can I give you something?” I asked him then, and again at the latest shoe rack assembly, for I knew these tasks didn’t really fall under the category of Maintenance. But, this new man in my life waved away my question and was quickly out the door.

When Tommy was well, which was the majority of our 16 years together, he was our family handyman. In the basement of our house he erected a wooden table where he placed all of the tools he had accumulated in his adult life. He mounted a pegboard on the wall that stored nails, screws, hooks, and other tidbits essential to his odd-jobs and carpentry ambitions.

As his health deteriorated, and this aspirations evaporated, I bequeathed the table, tools, and pegboard to good neighbor John. But, I held onto one hammer, one screw driver, and a pair of pliers, believing I’d need them in a future life.

I’ve used each gadget occasionally: to pound the cover  of a stubborn jar of pickles, to open a key ring and add a store’s loyalty card, and to twist off the top of a bottle of nail polish. But thanks to the new men in my life -- who have accepted all of the responsibilities once handled by the guys on Dakin St., and by my own beloved handyman -- that’s all this trio of tools will likely be asked to do.