Slow and steady: not a race

Caregivers and care-takers tend to see themselves living in one of two worlds: the land of optimism, hope and continual improvement; or the land of fear, dread and perpetual decline. Would that it were so simple, so consistent, so definable.

More often, progress is difficult to measure in the short term. Most days are spent stepping in and out of both worlds, gingerly, tentatively, never knowing for sure which course the patient is following, toward which world.

On the same day Bandar walks a good distance and manages to get in and out of the car with little assistance, she may have terrible pain in her back and legs or trouble sleeping and difficulty breathing when exerting herself. To the caregiver who tries to make sense of every little sign, these data points baffle us, confuse us. Is she getting better or worse? we want to know. Now. How can we fix this? Make it better?

And then. When we calm ourselves and step back, we may realize the wisdom of the ages. We can only do so much. The rest is up to a power greater than ourselves. We have to yield control and recognize our own limitations, despite the tremendous responsibility we have assumed.

Recognizing our own limitations and working within them, we can celebrate victories when they come. We can smile, encourage and congratulate. We can observe, assess and consult with doctors and therapists. We can pray for guidance, patience and acceptance.

We need to follow up on medical issues and consult professionals. We have to take care of ourselves and our fellow caregivers. We have to keep expectations in check.

Living one day at a time, we look to completing this day, every day, to live moment to moment. And to do what we can, whatever may be the next right thing.

Bandar is gaining upper body strength and recovering her core muscles. Both her Occupational Therapist, Roberta, and she agree she is stronger, more flexible and has more endurance. She barely wears her rigid back brace, which she had grown dependent on. She can twist and turn her back in ways we couldn't have imagined just three or four weeks ago. Above, she cranks an exercise machine during her Sept. 28 visit to rehab with Roberta, at Metrohealth Hospital.

Choosing sides

Every night with Bandar around 9 o'clock bedtime, Sophie takes mama through her evening rituals of cleaning and toileting. This happens in the first-floor master bedroom and bathroom I used to call my own.

Once teeth are out and face is washed, Bandar ambles with her walker to the right side of the bed, which I used to call my own, and plops her bottom down so she can get her pajamas on and position herself for her night's rest.

Always the right side of the bed. It has to be this side and never the left. Except when it was the left.

When Bandar came home in August from Jennings Center for Older Adults, she announced on her first night in my former bedroom that she could only get in the bed from the left side -- not the right -- and this, despite her having gone to bed from the right side 54 nights in a row while living in the short-term rehab unit.

We tried to reason with her and explain the error of her thinking. To no avail.

"I can't do it," she said, employing one of her most-used expressions. She could only get in bed on the left side, and that's how she did it always, she repeated, incorrectly.

This phenomenon was strange. But it was no stranger than most of her many other oddities and habits. We shrugged and obliged her for a few nights, bringing her to the left side even though it's much more difficult for us to navigate and assist her because of its close proximity to a dresser.

And we continued to try to convince her, without success. Didn't she remember how she got into bed while at Jennings? Always from the right.

"Oh, no," she said, "I can't do it. I always get in the bed from this side," meaning the left side.

And so it went.

I marveled. How or why couldn't she discern her left from her right? And why did it make such a big difference to her which side she got in from -- when clearly and empirically it didn't matter in the slightest, other than in her head?

With a little time and tough love, we managed over the course of a few more nights to get her reacquainted with the right side. She insisted it was the wrong way to do it, but after a few days' resistance, she accepted the change. And now, she would swear she never got in bed from the left side, nor could she ever.

Then came Friday night. On the way home from a rare night out (thanks to Morris for taking another turn at Bandar-sitting) Sophie presented me with an idea: Let's see if we can put her mom to bed from the left side again. What would Bandar do?

Okay, it's not a purely evil idea, and that's good. But it is mischievous, and just enough so to have some fun to test how well we know Sophie's mom. Mostly harmless, too, in the great scheme of things. So long as we were kind in our execution.

As we continued home, considering how things might go, we both laughed, knowing the highly probable outcome of this experiment. And we agreed to undertake the test. At once.

When we arrived home, thanked and relieved Morris and got Bandar wheeled into my former bedroom, I feigned needing to find something from the magazine basket, which sits to the right of the nightstand that sits to the right of the bed. I pulled the basket out onto the floor just next to the bed, pretending to search for a certain magazine while mama watched intently.

"Ma, you'll have to get in bed on the other side tonight," Sophie said, referring to the left side. "Steve is looking for something."

"Oh, no! I can't do it," Bandar said. "I can't do it. I have to get in the bed from this side."

Not wanting to distress the woman, I picked up the basket quickly and agreed to sacrifice whatever I was doing for Bandar's benefit. Satisfied, she got into bed from her "normal" side. We kissed and said our goodnights.

We can never underestimate the importance of ritual and consistency in our lives, particularly as we grow older. Even when those rituals lack obvious sense or meaning to others, they may represent something very important to us for reasons only we may know, and quite possibly for reasons even we don't understand.

Sometimes living in the familiar just brings us comfort, helping us to make sense of a moment in time when so many other things in life fail to explain themselves adequately.

Plus ça change, plus c'est la même chose.

The image above is from a performance-art-dance we saw during our night on the town Friday, Sept. 25. We attended the Bridge Project, on the second level of the Detroit Superior Bridge.

24/7 With Bandar

Every day with Bandar, I experience moments of gratitude and love. No exceptions.

My journey thus has been good for my soul. Every day.

At the same time there's a very different reality at work.

To the surprise of no one, care-taking for an elderly loved one is not all flowers and sunshine and fun and happiness leading to a steady stream of precious life-changing epiphanies.

It looks more like this.

Every day with Bandar means stopping what I'm doing to adjust Bandar's feet, which rest on her special foot pillow, because "they feel like fire"; to make a meal, fill a cup, exercise with her or help her onto or off of the toilet.

It's occasional trips to the ER or more routine visits with any of seven doctors or with her dentist or physical or occupational therapists. It's repeating myself (repeatedly) because she cannot understand my English or hear well enough (because she resists using her hearing aid). It's refereeing Sophie's family members during animated strategy discussions or scheduling family members for turns at Bandar-sitting. It's reminding myself that I shouldn't expect thanks or gratitude in return for my sacrifices and services -- that any benefit I receive as the result of my efforts will disappear the moment I build up such expectations. It's balancing current reality with wishes for recovery, expectations, hopes, fears and faith.

Much of this was put in perspective for me after reading a short essay by freelance writer Melissa Musick Nussbaum, who is charged with caring for her 89-year-old, live-in mother. Writing for Celebration magazine, Nussbaum suggests that being responsible around the clock is a very different prospect than portrayed in Mitch Albom's Tuesday's With Morrie, the story that inspired me in part to start this blog.

Nussbaum:

"Albom spent Tuesdays with Morrie. And not even Tuesday nights. Just Tuesdays. During the day. Working hours. I can stand anyone for one day a week during business hours. I want to read 24-7 With Morrie. And the sequel: I Killed Morrie and No Jury in America Would Convict Me.

"...I want to read about the daily-ness of old age, the daily-ness of sickness, the daily-ness of death, the daily-ness of care. I don’t want to read about visitors. I want to read about keepers. For, as any housekeeper knows, it is daily work. It is the same work, done better or worse, over and over again.

"...And as it is with the work of housekeeping, so I hope it is with the work of love. Just as sweeping is an act, and not a thought, so love is an act, and not a feeling. My work is to open the Tylenol bottle, to speak up and speak slowly, to offer my arm, to help her in and out of the car, to listen. Just that, song in my heart or not. And, task by task, day by day, I become my mother’s keeper."

Our work as caregivers is to do the work, if only for the sake of love and service. Through that work may we find the gift of God's love and may we be blessed in turn with the experience of joy and happiness.

Melissa Musick Nussbaum's "My Mother's Keeper" appeared in the June issue of Celebration magazine, a sister publication of the National Catholic Reporter, where the story was reprinted July 13. Thanks to our good friend and neighbor John Shields for thinking of Sophie and me when he read Nussbaum's piece and made sure to get us a copy.

Learning new tricks

Deceptively simple, this exercise helps Bandar develop her core every time she extends her arms to hit the ball. She enjoyed this, perhaps a bit too much.

Bandar's not asking for or wearing her back brace as frequently now. Like the patient who leaves behind and walks without his or her cane after an injury, this is a good sign indicating less pain and increasing endurance.

You can leave your hat on. Or not.

"Where's your hat," Bandar barked, abruptly.

Strange. Bandar hates hats. The last time we three went to the hospital for her physical therapy, she admonished her son for wearing his baseball cap, which he pretty much wears everywhere.

Out of respect to his mother, Morris had gone hatless today. We both wondered for a moment if she was serious.

She did not like Morris' "long" hair, she explained, half in English half in Arabic, and wanted it covered. "Put on your hat," she implored.

Ever eager to please, Morris, 52, swallowed hard, borrowed my car keys and walked to the parking garage, returning a few minutes later with a nondescript, red baseball cap on his head.

"I don't like that hat," Bandar frowned. "Take it off."

Morris smiled.

"When she yells at me, I know she's feeling better," he said. "This is normal for her."

I know what he means.

Ebbs and flows

Brother-in-law Morris is taking the day off from his job tomorrow to lend an assist. He'll get here early to watch his mother, allowing Sophie to get to work and me off to an early morning job interview. Morris and I take Bandar at noon to back-to-back sessions with her physical therapist and occupational therapist. After this trip to the Metrohealth Hospital rehab unit, Morris' second, he'll be able to take Bandar to many of her remaining sessions. We're grateful for his help!

At 10 days since my last post, it's still hard to pinpoint exactly where Bandar is on the road to recovery. She's had setbacks: adjusting to meds (with side effects ranging from pretty severe GI distress to anxiousness and insomnolence), new routines, new exercises, new pains and aches. Some days she can barely stand or move her legs, let alone walk with her walker. Others she does pretty well. Even on her best days, we still have to help her every day to get up in the morning and clean up, change clothes, feed, go to the bathroom, shower and so on. And yes, if Sophie's not home, I help Bandar get on and off the pot -- another one of the infinite possibilities contained in the "for better or worse" clause that I never contemplated before I asked Sophie to marry me.

The best sign of progress is that Bandar is not requesting to wear her back brace as much. She's sitting for longer periods without it, indicating she might be building back her core muscles. She's also getting into and out of the car a little easier, and she's sleeping through the night more frequently without waking up with "fire" in her legs -- her way of describing her painful neuropathy.

Every day with Bandar continues to be an exercise in patience, requiring Sophie and me to remind ourselves to take our lives a day at a time.

Yeah, I know...

The Murad family today celebrated the 8th birthday of Bandar's great-granddaughter, Jackie. And the matriarch came to par-tay. Bandar hadn't been out of the house lately for much of anything other than an appointment with one of her many doctors or therapists or an unscheduled trip to one of the local emergency rooms.

Here, she's holding court in her son's spacious three-car garage, which Morris built and set up in his unique style for occasions such as this -- and more often for parties for his extensive network of friends. Today's affair had plenty of balloons, birthday banners, food, cake and ice cream.

Bandar soaked it all in, being lavished with attention and hugs and treated to a visual feast of activity and action. She did her best to keep up with the conversations, frequently responding to questions and statements with her familiar phrase, "Yeah, I know," or the alternate, "I know what you mean."

Because she refuses to wear her hearing aid when she's out for fear of anyone seeing it, she often misunderstands or doesn't even hear parts of conversations. And because she doesn't want to call attention to herself, she often fakes it with those throwaway phrases. I am amazed how often and how well her strategy works.

Example: "Sito [Arabic for grandmother], your hair looks really nice!" Bandar's response: "Yeah, I know." No one raises an eyebrow, because that's exactly what she would say had she understood the question.

***

On one occasion a few years ago, our friends Tim and Norma sat Bandar and Norma's Mexican-born mother together at a gathering at their house. We left the two 80ish women together as they smiled and attempted to exchange small talk about the most important things in life: family, food and grandchildren. When we checked on them 20 minutes later, they were talking more comfortably, occasionally laughing with and nodding knowingly at the other.

They had given up any pretense of speaking English, broken or otherwise. They had slipped into a foreign dialect, but I wasn't sure what it was until I recognized a few words Bandar said.

Me: "I didn't know your mom speaks Arabic, Norma."

Tim: "She doesn't speak Arabic... I thought Bandar was speaking Spanish!"

We all had a chuckle as we discovered what they were doing, each communicating in her native tongue and not knowing what the hell the other was talking about. But there they were, having the time of their lives speaking but not understanding. Or so I thought.

As we walked to our car to head home, Sophie and I asked Bandar why she and her new friend bothered talking if they couldn't decipher what the other was saying. She smiled almost like a shy schoolgirl and said, "I don't know." Did Bandar enjoy herself? "Oh, yes, very much. She a nice lady," she said.

I don't know how many words or facts either heard or learned from the other. But somehow, these two connected in a way I would have never predicted.