New Site for The Rookie Caregiver

Hi,

To read the latest posts for the The Rookie Caregiver and other blogs, please go to www.elainesoloway.com.

I look forward to seeing you there.

Thanks!

Elaine

The Ambivalent Widow

At first, sleeping on Tommy's side of the bed seemed like a good idea: It was a quicker trip to the bathroom and would eliminate the nightly toe stubs endured during my darkened path from my side.

But, in this new space, I hadn't had a full night sleep since my husband died November 2. At first, I blamed it on a sort of Post-Traumatic Stress Disorder following three demanding events: my hip replacement surgery, 10 days in the hospital with Tommy, and finally an additional 12 at home with him in hospice care

Then, I dismissed the PTSD theory and fixed on this: Tommy, despite his journey to heaven, wanted his side of the bed back. The 11 p.m. and 2 a.m. wake-ups I'd been experiencing were really my husband elbowing me over to my side.

So, last night I obeyed. I returned my iPad to a charger on my bedside table, and lined up on the nearby windowsill, my water bottle, Melatonin pills, Tylenol, and Neutrogena hand cream -- the same setup prior to my switch. I arranged a mini-memorial on Tommy's bedside table with his portrait, his beloved AM/FM earphones, the 40-year-old wallet he refused to replace, his wristwatch that displayed date along with time, and his wedding band.

Then, I scooted onto my side, pulled up the covers, and bawled. My partner was gone. His side of the bed was empty. He would never return for our nightly spooning, or our ritual of him patting me on the tush and me returning a mild pat to his head, and finally, our exchange of “love you,” before falling asleep.

On my side of the bed, I continued to wail as my stored up grief filled the room. I realized I'd been so intent on getting my life back together, that I hadn't allowed myself to mourn my loss. Oh, I had cried each time I left his thinning and weakening body while he was in hospice, and I cried when he finally gave up his last breath, but I hadn't cried over his absence.

After I could sob no longer, I turned over, clicked on iTunes, and slept for 8 hours. There were bathroom trips cautiously tread, but I willingly took this longer route, then snuggled into my old spot hugging his pillow as substitute.

This new role for me as Widow has me ambivalent. There are times of dark loneliness and sorrow. But there are also times of relief that my husband's suffering has ended, and there is glaring awareness I have gained new freedom.

While Tommy's death was sudden and unexpected, my caregiving for him was long and challenging. He was diagnosed with FTD/PPA in 2009, but there were signs my husband had the illness years before.

As Tommy's symptoms worsened, he relinquished his car keys and I became his chauffeur. I feared letting him venture out alone, or even being in the house on his own. Trips to my out-of-town daughters ceased, because he would not be able to call 911 if he got into trouble. My calendar revolved around him. On Tuesdays, if his golfing buddies had a game and took responsibility for him, I was free to make plans with friends. When the boys bailed, I'd take Tommy to practice golf, and then we’d lunch together. I did not want him to be alone, to be without company.

Now, with my husband gone, and my job as caregiver canceled, I’ve booked tickets to Boston in November and Los Angeles in December. I’ve made lunch plans on days of the week that aren’t Tuesday. I take my time returning in the morning from the health club, unlike in the past when I made sure to get back before Tommy woke.

Tommy and I would have celebrated our 15th wedding anniversary January 13, 2013 -- an occasion we looked forward to. We planned to grow old together. It was the second marriage for both. We were content and happy. We rarely argued -- we were satisfied sitting on our facing couches, watching our favorite television shows, and early on, taking turns on the crossword puzzle.

My new solo routine is this: before I go to my side of the bed, where I evidently belong, I pause at Tommy's picture. I bring my fingers to my lips, then place them on his photographed face. "Love you," I say. I hear his response, clear as day, "Love you, too!" 

Then, I imagine my husband giving me another pat on my tush, this one indicating, “You go, girl. It’s your time now.” Anyway, that’s what I imagine.

An Untroubled Brow

This is what you look for in a hospice patient: the brow must be untroubled. Smooth, free of lines. There should be no grimacing. The face of the patient must be serene, peaceful.

Tommy has an untroubled brow. His face remains ruddy. His body is calm, arms propped on pillows to keep him comfortable, two pillows behind his sleeping head. A loose sheet covers his quietly breathing, thinning body.

Regularly scheduled doses of Morphine and Haldol, with an occasional drop of Atropine, are keeping my husband pain-free and tranquil, the goal of hospice.

Tommy, who worked out at the Lakeview YMCA three-times-a-week for 40 years, is hanging in. "There's no way of telling," doctors and nurses tell me. "Three days, three weeks?" Those estimates are not my husband's concern. His body will leave this earth when it is good and ready. I know this, I am prepared, even though at times I expect Tommy to yawn, raise his arms as if stretching, give me two thumbs up to indicate a good night’s sleep, then hop over the bed's steel sides, and dress.

That will not happen. My husband, when he decides he has had enough of his blubbering wife who strokes his head, holds his hand, and whispers "it's okay if you leave," will slow his breaths and that will be that.

Meanwhile, he is being cared for at home by me and a rotating roster of home health aides, hospice nurses, and Certified Nursing Assistants. A few of these people will be stellar -- like Stuart, the CNA who was originally hired to drive Tommy to the Y one day a week. Surprise: Stuart is receiving a PhD in nursing before he enters the college. I offered to write to Loyola's administration and tell them Stuart has completed all the necessary coursework.

Others I loved, like Rebecca, Qui, and Emile. Some I tolerated, and one I insisted never step foot in my house again. Along with inappropriate behavior; i.e. yammering loudly on her cell phone, she texted me constantly from the second floor for various items close at hand. But the straw was when she decided, without consulting me, to remove all of the supplies I had arranged in rows on our empty queen-sized bed, and place them instead on top of dressers, end tables, window sills, and on the floor of the shower hidden by a curtain.

"I wanted the room to look like a bedroom," she explained as she waved her hand atop the empty bedspread.

When the hospice nurse arrived, she shook her head and returned every box of gauze pads, suction tubes, bed pads, disposable underwear, lotions, and dozens of other supplies back to their original spots. "Much better," she said after all was returned. I hugged her.

I talk to my husband each time I enter the room. Once I pulled up a chair to read him a letter. Tommy had written it to me in 1996, two years before we married. By the grace of God, I kept it safe. My husband spoke of love, commitment, promises to care for me -- in beautiful handwriting, two pages full. At one point during my reading, he opened his eyes and looked at me, as if to say, "I remember writing that."

With every visitor that enters the house I say, "I'd like you to read Tommy's letter." Although his words were meant for me, I fear our friends will only recall the Tommy who struggled with aphasia and could no longer speak, who stopped reading mysteries, or who was unable to fix a broken cabinet door. I want them to know the Tommy who was smart, romantic, eloquent.

Many loved ones -- concerned about my well-being and ability to pay for ‘round-the-clock nursing care -- urged me upon leaving the hospital to place Tommy in hospice care in a different setting outside the home. “It will be overwhelming,” they predicted.

In a first email update to this group I admitted, “You were right, it’s overwhelming. But, I am doing it.”

Along with the hired caregivers, I am supported by friends, relatives, and neighbors who visit Tommy and me, who bring food and offer to handle any needed tasks. I have doled out assignments, from picking up Chicago hot dogs to taking my Honda Fit in for servicing.

We will get through this. Meanwhile, we keep watch for an untroubled brow.

How To Suction A Tracheotomy

My last blog post was Sept. 18, two days before I was to undergo a total hip replacement. That was a lifetime ago.

Today, more than a month later, my hip is nearly repaired and I am back to driving and usual activities. Sadly, tragically, those activities now include caring for my husband at home, with hospice and caregivers as support.

We have been through an unbelievable nightmare, with my dear Tommy suffering more than anyone else. It all started with swallowing. For several months he had to be reminded to chew one mouthful before taking another. Then, that routine started to deteriorate until he could not swallow anything. Sips of water or Gatorade were taken in, then spat out.

Dehydration was a worry. One evening, when I was already upstairs, I heard a thump. I ran down and at the foot of the stairs was my husband, awake, unhurt, but seeming to wonder what happened to him.

The following morning, Stuart -- a CNA (Certified Nursing Assistant) who had been driving Tommy to the YMCA several days a week -- and I took him to Northwestern's ER. He was admitted with severe dehydration. Because Tommy could not swallow -- which we all assumed was a symptom of his Primary Progressive Aphasia --- the ENT team recommended a tracheotomy (lest he smother) and a feeding tube for nourishment.

This is the part where the nightmare become so dark and frightening that we pray it is indeed something happening in our sleep. But, it was not to be; it continued when awake. When the ENT team attempted to insert a tube through his mouth to his stomach, they encountered a blockage, a mass. Doctor's diagnosis: "Squamous cell carcinoma of supraglottis. You are not a candidate for treatment for this cancer." Throat cancer. Aggressive.

Our decision was to bring him home to hospice care where he can be kept as comfortable as possible.

After 10 days in the hospital, on Oct. 21 we returned via ambulance to our house in Independence Park. Several neighbors had already been on board to assist with equipment delivery and to get Tommy all set up in our bedroom. Other neighbors wrote their phone numbers on slips of papers with the words, "anytime, 24 hours."

Now, my husband is hooked up to balky machines that provide oxygen and humidity with a tube that goes directly into his tracheotomy. Every few hours, he will cough, alerting me and a CNA, Rebecca, or other round-the-clock caregivers, that his trach is accumulating mucous and secretions and making it difficult for him to breathe. That's where the suctioning comes in. I watched the hospital nurses perform the procedure, studied a YouTube video, assisted Rebecca on her first suction, and then, miraculously did the cleanse, insert, twist, suction, and extraction on my own.

Of course, the big question is did his brain degeneration and aphasia cause the swallowing problem, or the throat cancer? The physicians say it could be a combination of both illnesses. Does it matter?

All that is important now, is keeping Tommy comfortable, peaceful, and pain-free. He is home, in his own bedroom. That's all I can ask for now.

Prince Charming

Tommy is on bended knee before me holding a Capezio ballet slipper in one hand. We are both laughing. The scene reminds me of Prince Charming when he finds his Cinderella and the perfect foot to fit the glass slipper.

Our mirth doesn’t exactly match the fairytale, but instead is my husband attempting to figure out where to put the elastic strap that crosses the instep on the shoes I use as house slippers.

“No, Honey, my foot goes under the strap and into the shoe,” I tell him as I put a hand on his shoulder to steady myself. But Tommy insists on putting the band on my heel.

I am unfazed; we have several days left to practice. I’m readying Tommy to help me when I return from hip replacement surgery and am not allowed to bend over to put on my own shoes. He is eager to show me he can come through for me.

Earlier that day at lunch, I deliberately dropped a napkin on the floor. “Honey,” I said, “this is a rehearsal. Can you pick up the napkin for me?” He did, with a grin. He was enjoying this gallant role.

My tests continued throughout the day. “Give me your elbow, please,” I said. Actually, this trial needn’t wait until post-surgery because I’m already a hobbler with my arthritic hip. “And walk slower, Honey, I can’t move this fast.” He complied, and like an escort leading an elderly patron to the opera, he moved one foot at a time.

At home, it was this request: “Keep your eyes on me as I walk up the stairs. Just in case I topple backwards.” Instead of viewing my assent from his spot on the couch, my Prince Charming rose and stood at the base of the stairs. He watched as I slowly practiced the step-to-step instructions in my pre-surgery pamphlet.

When I reached the top of the stairs, Tommy returned to the couch and his TV program. That was fine with me; he had completed enough tests to assure me he’d be a competent caregiver. And if I needed further evidence of his empathy for the ill, all I’d have to do is to recall an incident with an ailing uncle that convinced me Tommy would be a good mate.

My Uncle Nate was in a residential facility suffering from Parkinson’s and dementia. It was no longer safe for him to be at home. Tommy and I weren’t married at the time, just mature sweethearts when he accompanied me for a visit. As soon as they were introduced, Tommy said to my uncle, “Would you like to take a walk?” Then, he hooked an elbow and slowly ambled along the hallway with Uncle Nate.

As I watched the two men -- one a treasured figure in my childhood, the other a second-husband prospect -- I realized how important this trait would be in my life. Tommy would be someone I could count on, to care for me when the need would arise.

As it turned out, Tommy beat me to it. I’ve been the one wearing the caregiver’s cap. But I know, that if the situation were reversed, if I was the one suffering a variety of losses, my husband would not leave my side, nor protest his new responsibility.

So, we’re about to have a real-life test, albeit a temporary one. I’ll be in the hospital for two days (prayerfully), then home to rehab for three to six weeks.  Friends, relatives, and neighbors will be around to assist us both.

But there will be times during my return to physical health that it will be just my husband and I. While Tommy is silent in his requests, mine will be loud and insistent: “Honey, I want my cane,” I can hear myself saying. Or, “please put a load in the laundry so it doesn’t pile up.” Perhaps, “Can you start dinner? Make salads? Set the table?” All new language of need from yours truly.

I’ve been fortunate, in the years we’ve been together I’ve been a healthy woman -- no previous hospitalizations and no memorable cold or flu that required Tommy’s attentiveness. If there were, he evidently brought me the requested medicine, bucket, or broth, or I would have remembered his lapse. Wouldn’t I have?

I am certain that in this upcoming episode in our lives, Tommy will turn out to be caregiver extraordinaire, and soon enough he will figure out the Capezio's. Tending to his Cinderella will soon be old hat for my Prince Charming.

Tommy Untucked

“Are you sure you want me to buy these?” I asked Tommy as we stood in the candy aisle at Target. In one hand, I was holding a 10.5 ounce bag of mini Three Musketeers, Milky Ways, Trix, and Snickers;  and in the other, a 12 ounce mini Hershey’s with nuggets.

As I waited for my husband’s response, my eyes landed on his tummy, which lately, has plumped and oozed over his belt.

Ignoring my stare, Tommy answered with two thumbs up.

I persisted. “Honey,” I said. “These candies are making you gain weight.” I shook each bag for emphasis. “You’re eating too many of them.”

He continued his affirmative thumb raise.

“Okay,” I said, as I tossed the bags into the cart and rolled on.

My 77-year-old husband is dealing with a serious medical condition that has robbed him of speech and dimmed his reasoning.  How could I deny him sweets? Also, he is stubborn and likely wouldn’t listen to any lectures on wise food choices.

But, as I pushed the cart through the aisles, and Tommy headed up the escalator to savor golf equipment, I thought of the man I married 14 years ago. He was a proud 145 pounds with nary an ounce of pinch-able fat. His biceps were solid as Major League baseballs, his calf muscles impressively sloped upward, and his stomach enviously flat.

This physique was hard-won. “I was a smoker and overweight,” he had confessed in the dawning days of our romance. “My cholesterol was high and I was in lousy shape. When the doctor told me I had to change my lifestyle or I’d die, I did what he said.”

So, Tommy joined the local YMCA and became a regular. He stopped smoking, started running and bike riding, and within time, dropped weight, and lowered his blood pressure and cholesterol measures.

On top of that, four years into our marriage, he became a vegetarian and has remained meat-, chicken-, and fish-free since then. He’s judicious on portions and appears to stop when full. But, he can’t seem to resist those mini chocolates.

Throughout the day, I will see him rise from his prone position on the couch, or upon returning from a bike ride or park walk, and head for the kitchen. I’ll hear the familiar gasp of the opened freezer door, the crinkle of a plastic bag, then the slap of the sealed door. Next, the pop of the garbage can lid, the rip of foil, and the sugary symphony’s final note as the lid slams shut.

The other day, I decided if I couldn’t stop Tommy from gorging on the minis, I could do something to improve his appearance and ease.

He was on the couch flipping the remote, and as always, his t-shirt was tucked into his size 36 cargo shorts, and a black leather belt was looped and clasped in the waist band. His paunch loomed over the belt, which didn’t disguise the freed first button.

“Why not remove the belt and untuck your shirt.” I said. “You’ll be much more comfortable.”

I didn’t wait for his answer. I unhooked the belt from its notch and wrenched it out like a whip. Then, I wrestled his Japanese Free Spirit t-shirt out of his shorts and draped it over his stomach.

“Now, stand up, Honey,” I said. “Isn’t that better?”

He rose, gave a deep breath, put two thumbs up, and did a little shimmy shake which I took as two degrees above the thumb raise.

 “You look nicer, too,” I said. “Slimmer.”

He grinned and did one more dance before returning to the couch and MeTV.

Now that he’s untucked, and his belly is hard to spot, I ignore his jaunts to the freezer.  Let him enjoy. There’s always 38’s, elastic waist bands, sweat pants, and other wardrobe fixes that will allow my husband to expand. 

At his next exam, when his cholesterol and blood pressure are checked, it will be up to his doctor to learn if the levels rose, and perhaps issue a warning. But since she knows Tommy’s diagnosis, and is aware of his losses and day-to-day struggles, I suspect her prescription will be similar to mine: “Enjoy,” she’ll say.

And, he will.

Better Late Than Never

When Tommy returned from his trip to Walgreens, he was  carrying a plastic bag that appeared to contain more than the Triple A batteries he had gone to purchase. From the square shape of the box within, I thought it to be golf balls.

“What did you get?” I asked. I was teasing, for no matter how many dozens he has stored on basement shelves, I don’t mind him adding to his collection.

My husband smiled and entered the house, leaving me on the porch where I had stationed myself to enjoy a beautiful Saturday afternoon. But after spilling coffee on a garden chair, I left my spot to get clean-up equipment.

I spotted the square box on the kitchen counter. Instead of a package of golf balls as I had guessed, the box was yellow trimmed in gold and decorated with the familiar red flowers, green border, and the words “Whitman's Milk Chocolates Sampler” in green script. A yellow envelope addressed to me was laid next to it. I opened the card that read, “Happy Birthday from the Group!”

“Thank you, Sweetheart!” I called out as I searched for Tommy. I found him installing the new batteries into his headphones, and acting as if there was no surprise waiting for me. 

“I love the card and the chocolates!” I said as I pulled him from his task.

My husband’s eyes moistened. He placed the Triple A’s and headphones on the counter and bent down to accept my kiss. Then, he picked up his equipment and returned, smiling, to finish his job.

Although my birthday was the previous week, and “from the Group” was a bit off base, I was thrilled to receive both the card and the gift. Tommy had remembered after all. I know he chose this particular card, rather than a more appropriate, “To My Wife,” because at Walgreens he didn’t have with him his reading glasses, and this card’s “Happy Birthday” was large, colorful, and easy-to-spot. He didn’t sign it, but no matter. I knew the identity of my my gift giver.

On August 10, the morning of my actual birthday, when the kitchen counter was vacant of card or chocolates, I wasn’t hurt or angry. I knew if my husband could have pulled it together, he would have. On past birthdays, I could count on a sentimental “To My Wife” card and bouquet of flowers greeting me in the morning. But since Tommy no longer drives, I realized that would have been difficult.

I’m certain he knew the actual date because phone calls wishing me "Happy Birthday" started early that morning and cards that arrived in the mail were displayed on our dining room table, along with a basket of treats my daughters had sent.

Because I thought his lapse on my special day was due to his inability to purchase something on his own, I had an idea. When his Friday driver, Stuart, came to pick up Tommy, I made this suggestion: “There’s a Hallmark’s next to the coffee shop where you get Tommy,” I said. “Tell him you saw on Facebook that it was my birthday and would he like to stop in and get a card.”

“No problem,” Stuart said. But when the two arrived home and my husband led the way inside with only his gym bag, I looked at Stuart for clues. “I asked him,” he whispered to me, “but he made it clear he wanted to go straight home.”

Since Walgreens is only a block from our house and Tommy’s language problems don’t prevent him from making an off the shelf purchase, he could have bought the card and chocolates on my actual birthday. And Stuart did give him the option to buy something that same day. My husband chose neither.

I have a theory as to why he picked today -- eight days after the fact. I believe he wanted to separate himself from the crowd -- make his gift and card more special than the rest. He wanted to let me know he cared more for me than anyone else, more than the first-thing-in-the-morning well wishers or card and gift senders. 

Anyway, that’s what I think. It doesn’t really matter. The greeting card “From the Group” is propped on its own on the dining room table, and every bite of candy feels like love.