Love, loss and hope

On a recent gray and dreary day, the lovely Miss Wendy and I thought it a perfect time to visit our neighborhood multiplex cinema. We ended up seeing a horror flick that still has me rattled.

That's all a bit surprising, since I was raised on a jarring mix of films featuring werewolves and vampires; stumbling and bumbling mummies and fantastical blobs; the Frankenstein monster and a wide assortment of aliens. In recent years, I've even sat through some really frightening misadventures featuring flying superheroes, massive explosions and ubiquitous car chases.

Of course all these Hollywood creatures and creations were ephemeral, mostly filled with special effects and comic bogeymen hiding about in the dark.

"Still Alice", meanwhile, is a film that has little to do with make believe monsters and demons. The spooky stuff it offers up is scarily grounded in reality. It tells the story of Alice Howland, a middle-aged professor of linguistics at Columbia University, who is bright and beautiful and, unfortunately, slowly losing her mind to early-onset Alzheimer's disease.

Julianne Moore won the Best Actress Oscar earlier this year for her quietly moving and point-on portrayal of Alice, capturing her intelligence and lust for life that is achingly lost as her mind and memories wither away like a flower wilting in the noon-day sun.

The first hint of something gone terribly wrong in Alice's perfect life -- she's smart and lovely, has a wonderful job and a beautiful family -- is when she ever so slightly stumbles about in search of a word while giving a lecture. Only days later she's losing her way when out on a daily jog, soon enough forgetting the names of friends and family and misplacing her cell phone in the fridge.

In a world turned upside down, Alice finds herself taking baby steps in reverse, losing all the special qualities and unique experiences that had once defined her charmed and special life. Her family watches in quiet horror, trying to figure out how best to continue living in a world now frighteningly askew.

Their choices and decisions, both good and bad, are the stuff of life, an aching reality captured in Alice's slow descent into a mindless hell. Ever so quickly, the third act is upon us, and even quicker yet, it all dissolves to white.

Lydia, Alice's youngest daughter (Kristen Stewart, a jarring blend of anger and defiance, mixed with  love and strength) takes center stage, speaking a jumble of words that, after a time, morph into a lyrical monologue of hope.

I was so taken with the moment that I spent a few minutes on the web and discovered the scene was borrowed from Tony Kushner's "Angels in America": "And the souls of these departed joined hands, clasped ankles and formed a web, a great net of souls ... Nothing's lost forever. In this world, there is a kind of painful progress. Longing for what we've left behind, and dreaming ahead."

Lydia asks Alice if she understands and Alice, staring off in dazed befuddlement, becomes reanimated -- if only for a moment -- and manages to say "love ... it's about love."

It's a somewhat satisfying, if melancholy ending to a sad and melancholy film. It also, at least for me, had the ring of truth.

Five years ago my mother was lost and stumbling along the road that "Still Alice" explores. After a couple of years of steady decline, her last days were spent in a kind of suspended animation -- gone, but still here; mute, dazed and befuddled.

I often stopped by the nursing home where she was living and helped feed her if I was around for lunch or dinner. On one particular day, I managed to get her to eat several spoonfuls of some sort of pureed goo, then handed off the chore to a nearby aide.

As I stood to leave, my mother glanced up at me and, after weeks of silence, managed to say, "I love you."  They were the last words I ever heard her speak.

So I'm thinking Alice had it right; it's about love. I'm also thinking that Lydia got it right when she shared the words of Tony Kushner: "Nothing's lost forever. In this world, there is a kind of painful progress. Longing for what we've left behind, and dreaming ahead."

We kept our promise of love

It was a cold day in December. I had stopped by my mother’s condo to check on her and found her staring off into space, lost in thought. The previous months had been troubling. There had been several episodes that my brothers and I could no longer ignore and we had begun discussing the possibility of moving Mom into an assisted living facility.

She knew something was wrong. Years earlier she had watched her father fall victim to a particularly virulent form of dementia and mom was certain she was now headed down a similar path. Sadly, she was right.

On this night she was momentarily lost in despair, frail and growing weaker, but strong enough to understand what the near future held. She was frightened and after only a moment or so broke into sobs.

Words failed me. I watched her for an instant and then realized that now I was the parent and needed to console my child, a role that would play out dozens of times in coming months. I held my mother and tried to calm her.

I quickly understood that all I had to offer was the truth. I told her she had a large and loving family, four sons, their wives, children and grandchildren – at the time, even three great-grandchildren. I made her a promise. We would be with her every step of the way. We would all get through this thing together.

The darkness came quickly. It robbed her of her memory, her hopes and dreams and replaced them with hallucinations, tremors, anxiety attacks and fits of paranoia. Occasionally, the fog would lift and I would be able to spend a few special moments with Mom, talking about her childhood, friends and relatives that for the moment she once again recalled.

Such good days became less frequent, however, as the disease took hold of her mind and she lashed out at many of us, no longer realizing who we were. But a promise had been made. We would all get through this together. So we made sure she got the best care. We took her to the brightest specialists we could find and had her hospitalized twice at one of the best geriatric facilities in the region.

Then we struggled with rousing her after she had become over medicated and eventually managed to wean her off several toxic drugs that had left her helpless and unable to take care of any of her personal needs.

The journey grew darker yet, the disease finally robbing her of the ability to move around freely, then leaving her unable to articulate her thoughts. So it was that just several weeks ago I found myself sitting with my mother at a dining table in the William Breman Jewish Home, feeding her a mix of pureed veggies, realizing that now she had even lost the ability to swallow.

Frustrated and angry, I called out to a nearby aide and told her she’d have to finish feeding my mother. I leaned over to tell Mom that I was leaving and that I’d see her soon. She opened her eyes, looked directly as me and said, “I love you”. Those were the last coherent words I’d ever hear her say.

My mother died this evening. For days her boys, daughters-in-law, grandchildren and a great-grandchild – who, btw, just months earlier had given birth to the next generation, a great-great-grandchild – had sat with Mom as she battled for breath and another moment of life.

Nearly two years earlier I had held her closely and made a promise. We’d get through this together. I like to think my family kept that promise and that even during the darkest moments my mother managed to sense she was never alone and that she was loved.

God filled with mercy,
Dwelling in the heavens’ heights,
Bring proper rest beneath the wings of your divine presence,
Amid the ranks of the holy and the pure,
Illuminating like the brilliance of the skies the soul of our beloved,
Who has gone to her eternal place of rest.
May You who are the source of mercy
Shelter our mother beneath Your wings eternally,
And bind her soul among the living,
That she may rest in peace.
And let us say: Amen.

GOOD TIMES: The entire family gathered for Mom's 85th birthday (photo above), a wonderful evening of celebration two years ago. She was 87 when she passed away at the William Breman Jewish Home in Atlanta.

The importance of three special words

“I love you” isn’t a phrase that was tossed around much by my Mom and Dad when I was growing up. My parents were of that generation that did great things, but had a bit of a problem sharing their emotions.

My brothers and I felt loved and safe; we just didn’t actually hear the word “love” very often. It all seemed to make sense that my father wasn’t warm and gushy. After all, he was forced to do battle in a world that was tough and complicated. But Moms are supposed to be warm, caring and loving. I think my mother had all of those qualities; she just wasn’t use to actually saying the word “love” out loud.

In recent years, after my father died and my Mom moved up here to the Land of Cotton, “love” started creeping into her vocabulary. I think Mom’s grandchildren helped her understand that it was okay to share her feelings. It was a little awkward initially, but eventually “I love you” became the accepted phrase for saying goodbye.

About two years ago, my mother’s battle with dementia had reached a point where we could no longer play like she was simply having a little problem with her memory. She would often get lost when driving to meet a friend – yes, she was still tooling around in her Crown Victoria; forget appointments, birthdays and anniversaries. She also talked about having vivid dreams, which turned out to be hallucinations.

Then early one morning, my brother Gary received a call from the police that Mom had contacted them because she couldn’t find one of her babies. Even odder was that she was certain the baby was inside one of the lamps beside her bed.

As her world grew ever darker, my mother seemed to grab hold of three words that provided her comfort – I love you! At the end of phone calls or after short visits, she would offer a quiet goodbye, then add those words of endearment; all somewhat strange for a woman who had spent years tapping down her emotions.

There was an urgency and quiet plea surrounding this new word play, a need she now had to know that she wasn’t alone and that in loving, she was loved.

I mention all this because of a little episode that happened earlier this week. As I’ve detailed here before, my mother is lost in her own mind, struggling to handle the most basic sorts of things that define each of us as human.

Fortunately, she’s now a resident at the William Breman Jewish Home, a nursing facility that offers top-notch care. During a visit earlier this week, I arrived just in time to help her with lunch. It’s a melancholy ordeal – the child now the parent, the parent the child. Meals for my mother are no longer about tasty treats and quiet dinner conversation. They've become a mushy blend of mixed colors and success is all about the intake of nutrients.

On this day it was a struggle to get her to take a few bites of the greenish stuff – a puree of broccoli and spinach – or even a spoonful of chocolate pudding. After 15 minutes of frustration I was ready to wave the white flag and turn the work back over to the nursing home aides.

I bent down to whisper my goodbye and tell Mom that I would see her later. Without hesitation, she looked up with a momentary gaze of recognition, then said in a breaking, painful voice, “I love you”!

I like to think that for an instant the fog had lifted and that warm memories of me, my brothers and father became part of her life once again. In that moment, hopefully, was the quiet love that has always swirled around our family and once again my mother knew – as we all need to know – that she wasn’t alone.

SPECIAL SIGN: Even when you don't hear the words (photo above), the symbol for "I Love You" brings comfort.

A long and lonely road filled with sunshine

It was a long and grueling weekend – for my mom and family. I could write pages, detailing the health issues that had us spending days in an area emergency room and hospital, but it all can be summed up in two words – blood clot.

My Mom, gamely plugging away on that long and winding road we label dementia, was not feeling well toward the end of last week. Aides checked her out at the assisted living facility she now calls home and decided to call in the medics.

Her vital signs were good but she continued to complain about some vague discomfort – pain in her legs, a sense of unease and a small problem with breathing. At some point she used the words chest and pain in the same sentence. Bingo! That’s the magic phrase that will win you a trip to the local emergency room every time it’s uttered.

I met my daughter Lauren at the ER and the good news is Mom seemed to be more alert than I had seen her in weeks. She was kvetching, but alert. Her nurse pretty quickly had Mom tethered to an assortment of monitors and within the first hour or so had managed to draw enough blood to feed a family of vampires and keep a battery of techs busy for the evening.

The ER doctor – a friendly enough sort of guy with a shock of white hair, the body and facial features of Woody Allen – checked Mom out, examined her leg – which, btw, was swollen – and ordered up another series of more sophisticated and invasive tests.

The good news, I guess, is that within the next hour we learned that Mom had a blood clot dangling about in her left leg, that she was to be put on blood thinners immediately and would be admitted to the hospital for observation to figure out the next step in her treatment.

That next treatment ended up being one of those little medical miracles that are now available – a tiny filter implanted in her vena cava. It’s a simple device, “a tiny catcher in the vein,” that should snag any bits of a clot before any real damage happens in her heart or lungs.

This news was offered up early Friday and by that afternoon the filter was in place and Mom was back in her room recuperating. The family – sons, daughters-in-law, grandchildren and others hovered about while Mom pretty much slept. My brother Larry, sisters-in law Amy and Betty Ann and niece Allison dropped by the following day to pay a short visit and learned that Mom was to be discharged.

I’ve been around hospitals now for a couple of years, taking Mom for various visits and exams; simple procedures and hurried emergency room visits. One of the happiest words you can hear in these places is “discharge.” It generally means that all is well and the ordeal is about to end.

Sadly, is also means that you’re nicely buried in the bureaucracy and there’s a good chance you’re going to be beaten to a pulp before you make your way out the door.

About eight hours after being told Mom would be released, my brother, sisters-in-law and niece managed to make it to the parking lot with Mom. The last two hours or so were spent waiting for a wheelchair to be delivered.

The family stayed busy chatting with Mom, telling her stories and teaching her songs, feeding her lunch and offering her snacks and water. I kept track with them throughout the day, planning to meet Mom and the others back at her assisted living facility.

We all finally managed to get together in the early evening. Mom looked haggard, but in reasonably good spirits. We got her settled and arranged for one of the aides to get her dinner. Betty Ann, one of the angels of the day, fed Mom bits of Salisbury steak and mashed potatoes, while the rest of us stood around and made small talk.

The facility, about as good as these places get, is still pretty much buried down in the proverbial rabbit hole, dazed and befuddled residents wandering about, looking for relatives and friends, watching TV or staring off into space. Yes, a few of them are drooling.

For whatever reason, one of the other angels of the day, my sister-in-law Amy, began singing one of the songs they had taught Mom earlier that afternoon – “You Are My Sunshine”. Most everyone picked up the tune, a tiny chorus celebrating family and love.

Mom continued eating, hearing how she makes us happy when clouds are gray. For a moment I thought we might be disturbing a few of the other residents, but after only an instant I realized there was little chance of that happening. If anything, several of those nearby seemed pleased by the break in routine.

A few minutes more spent singing and chatting, then we said our goodbyes. As we were all headed out to dinner, Mom was being wheeled to her room. I overheard one of the aides ask her if she was happy to be home and Mom quietly whispered, “Oh, yes”!

Well, perhaps. I like to think in some fashion Mom was happy and in some fashion knew that she was connected to all those folks coming in and out of her life over the weekend.

Monday afternoon I was back visiting and checking on some pressing health care issues. Mom was in bed, pillows strategically placed about to keep her resting on her side. I mentioned the weekend, the hospital and minor problems with her leg. She nodded and smiled occasionally, but mostly drifted slowly away, her eyelids heavy with sleep.

I sat back, glancing out the window just feet from her bed and watched a few clouds roll by and a bit of sun streak across the lawn and into her room. It was about then that I heard a tiny sound and looked around at Mom.

It appeared she was sleeping peacefully, but she seemed to be softly humming. I leaned over but couldn’t make out any words. Then I recognized the tune, “You Are My Sunshine,” and didn’t know whether to laugh or cry.

It would seem that at least on this day, somewhere on that road she’s traveling, Mom no longer has to worry about skies turning gray. I like to think, if nothing else, she still remembers how much we love her and we'll make sure that her sunshine never goes away.

Reason for hope on a dark and lonely road

My mother, as I've detailed here before, is trudging down the long road of dementia. It's an ordeal that many have faced, a problem for both those afflicted and their families dealing with the myriad of problems that are part of this disease.

One of the greatest hurdles, ironically, comes from the bizarre system of medical care that's been created in this country. It's a system that provides remarkable aid for all sorts of mundane and catastrophic situations -- broken limbs and sore throats, heart disease and cancer. But the healthcare community seems to still be stumbling around in the dark ages when it comes to treating any form of dementia.

The problem, and I'm speaking now from experience, is that when patients grow old and lose the ability to pay close attention to their care, they and their caregivers fall into a bottomless pit, filled with an assortment of doctors -- primary care physicians, neurologists and psychiatrists -- physician assistants and physical therapists, all making suggestions and all passing the buck.

My guess is that people and caregivers dealing with any sort of chronic ailment probably face the same issues. The problem isn't the disease, but the number of healthcare workers involved in treating ongoing ailments and the archaic system of communication that remains at the heart of our medical community.

In the last year or so, my Mom has gone from living in her own condo, taking half a dozen different medications, following the advice and instruction of one doctor -- her primary care physician -- to now living in the "Memory Care" ward of an assisted living facility. Today she takes 14 different pills -- meds for blood pressure and cholesterol, depression and insomnia; pills to boost her appetite and quiet tremors and hallucinations. There's another half-dozen pills prescribed for use as needed for aches and pains, stomach upset and anxiety. She has a neurologist, two psychiatrists, physician assistants and physical therapists. I've lost count of the number of nurses and aides responsible for her care.

At first blush all this attention might seem to be a good thing, something to celebrate and not condemn. There's only one problem -- these people don't talk with one another and there is no central database where information is stored and updated. It's up to me, my brothers and other caregivers to make sure instructions are passed along correctly, that aides charged with handling meds are doing so correctly, that the orders of one physician countermanding the orders and prescriptions of another are correct and carried out. This is absolute madness.

But there is a bit of good news. Today started out badly, very badly. It ended on an optimistic note.

My brother and I met at Mom's assisted living facility to pick her up for another appointment, this one with yet another physician assistant at the geriatric hospital where she has been treated several times. In the last few weeks, Mom's condition has worsened significantly -- she's no longer able to walk, to feed herself or take care of any of her personal needs. She's lethargic, speaks only if prodded and is now showing signs of Parkinson's, one of the nasty little side effects of the form of dementia (it's called Lewy Body) that she's battling.

So what's the good news? The physician assistant seemed to be more shocked by Mom's condition than either my brother or me and set about finding out what the hell has been going on with her care. She pretty quickly announced that it was clear Mom was over medicated and dehydrated. She studied the med info they have on file at the hospital and checked out the folder I brought along that details recent visits and med changes. She then repeated the line I've heard so often from physicians and other healthcare workers in recent months, "this is what we're going to do now."

But unlike her colleagues, after making several changes and suggestions, this physician assistant detailed a plan of action -- new meds, plans to contact the med nurse at Mom's assisted living facility, notes to care workers about the importance of hydration and the need to monitor Mom as old meds are stopped and new ones are started.

Most startling and refreshing is I just got off the phone with the physician assistant -- she called me! The details aren't really important, it's the fact that she took the time to touch base with me about a topic she thought important regarding Mom's care. She then added that if Mom doesn't perk up in the next couple of days that I should give her a call and there are some additional tests that she'd like to order.

It was about then that I recall something she had said in a sort of absent-minded way while looking over my mother's chart earlier in the day. "If this was my Mom, I'd certainly be concerned about her care." It was just a little break in the professional facade, a bit of empathy that hopefully means we might have stumbled onto someone special.

To be sure there will be additional challenges in the coming weeks and months. But I'll grab hold of help and hope anywhere I can find it. And on this day it seems we were handed a small gift that just might lighten the dark road my Mom is navigating.

The stuff of dreams

I just got off the phone with Mom.

She managed to get one of the aides at the assisted living facility where she now lives to call me. She was hysterical. It took a few minutes for me to calm her and find out why she was upset.

"I feel so lost and alone," she sobbed.

The journey continues, my Mom moving deeper into a fog that will one day cloak her very being. But for this moment, her tears have washed away the haze and she finds herself adrift, living in a home with strangers, the "stuff" of her life now reduced to all that can fit into one small room -- a bed, chair, nightstand and lamp, a clock, dresser and handful of precious photos.

I find myself soothing her, telling her all will be okay, that her family is nearby and thinking of her constantly.

"I just don't know," she says, "I just don't know how much longer I can take this."

And again I offer up the words a father whispers to his frightened daughter, the world now turned upside down as this disease makes the parent the child and the child the parent.

"It'll be okay ... I love you ... It'll be okay."

But it isn't okay and it certainly isn't fair. Life has become a dark place for my Mom, shadows pushing aside the light, tears the only remaining link with all that she was and all that she can recall.

After asking her to let me talk with one of the aides at her "home," she mumbles a melancholy good-bye and hangs up the phone.

It takes three calls to finally reach someone in the "Memory Care" unit, the laughingly euphemistic term this home uses for its dementia wing.

"Oh, she's fine," the aide tells me. "She had dinner and spent time in the living area ... she's fine."

No. Not really. My mother is many things right now. But fine is not one of them. Once upon a time she was the sweet, young girl in the photo above, her hopes and dreams spilling into a future that would play out over decades. And then she blinked and even the memories of all that was have become a distant dream.

Our revels now are ended. These our actors,

As I foretold you, were all spirits, and

Are melted into air, into thin air:

And like the baseless fabric of this vision,

The cloud-capp'd tow'rs, the gorgeous palaces,

The solemn temples, the great globe itself,

Yea, all which is inherit, shall dissolve,

And, like this insubstantial pageant faded,

Leave not a rack behind. We are such stuff

As dreams are made on; and our little life

is rounded with a sleep.

A special Mother's Day wish

I received an e-mail this week that had a chain-letter vibe about it. Generally such stuff has me reaching for the delete button. But I took a moment and read through the note and couldn't help but think it landed in my mailbox for a reason.

Today is Mother's Day, one very special day for all of us to salute our Moms and thank them for, well, being motherly.

The problem I'll have this year is that my Mom is sliding into a fog, vaguely aware that I'm her son, but not at all certain about the details. If she's having a good day she'll smile and chat awhile, then grow distant and perhaps a bit agitated.

The cards from me and my brothers and other family members will go unread, the flowers unnoticed. The fog thickens and soon she will be lost.

That's the truth my family lives with each day. It's the painful reality that many other families also share.

With that as context, here's a slice of the e-mail I received.

It was a very busy morning, when an elderly gentleman arrived to have stitches removed from his thumb. He said he was in a hurry, that he had an appointment at 9 a.m.

A nurse took his vital signs and had him take a seat, knowing it would be over an hour before someone would see him. Then she saw him looking at his watch and decided she would go ahead and evaluate his wound. Turns out the thumb was in good shape and it was a quick and simple procedure to remove his sutures and redress the wound.

After finishing up, the nurse asked if he had another doctor's appointment since he seemed in a hurry. The man said he did have an appointment, not with a doctor, but with his wife at a nearby nursing home. He quietly reported she was suffering with Alzheimer's and he made it a point to spend time with her each day.

The nurse then asked if his wife would be upset if he was late.

Not really, the elderly gentleman replied, explaining that his wife no longer recognized him.

Shocked, the nurse asked: "And you still go every morning, even though she doesn't know who you are?" The man smiled as he responded, "She doesn't know me, but I still know her."

As I said, the story has sort of a chain-letter feel about it. The situation is just a little too perfect, the quotes just a little too poignant.

And yet, in the very near future I fear I'll be sitting next to a woman who will no longer know me. Perhaps on a really good day she'll look my way and for an instant she'll recall fondly that this middle-aged man was the boy who once upon a time called her Mama.

For that moment and the thousands of others that have played out over the last six decades of my life, "Happy Mother's Day" Mom. Here's hoping it's a "good" one.