My mother is trying to communicate.  I’ve been with her for almost two hours on this bright spring morning, and during my visit she keeps trying to tell me something.  She’s unable to find the words.

Often I can guess what she wants to convey, but today I’m coming up empty handed.

Mummy, as we affectionately call her, starts out in a strong, clear voice, “I want to say….”  Then the words trail off.  Her face darkens, her eyes dart back and forth and her hands nervously rub the arms of her chair.  She’s attempting to find the words but they elude her.  Inside her brain it’s a jumble.  Mummy has had Alzheimer’s for more than five years and speaking has become progressively more difficult.

I offer prompts and rub her back to help her relax.

“Is it about Katie?”  Katie is my daughter, and her only grandchild.

Mummy vigorously shakes her head and begins again, “About the…the…the…”  Her voice gets small.  She shakes her head and shrugs her shoulders.  Her eyes look faraway and rummy.

“That’s okay, we can talk about it another time,” I tell her with a smile.  I try to keep my attitude upbeat and encouraging.

In an effort to divert her attention, I bring out a photo album for us to page through.

Yet, Mummy won’t be deterred.  She attempts once again to share her thoughts, but stalls again.  I suggest more prompts.  Mummy vigorously shakes her head and we are back where we started.

We’re both left feeling frustrated and sad.

Communicating has become progressively more challenging in recent months, and it takes a great deal of effort.  Not only can Mummy speak very little, I’m not sure how much she understands.  Trying to impart more than the smallest bits of information is often unsuccessful. Frequently, when I’m talking to Mummy she looks at me as though I am speaking a foreign language.  From her perspective that is probably what she is hearing.  Words and phrases she once understood and took for granted are now indecipherable.

As the disease has progressed, I’ve learned — in fact, I am still learning — how to make accommodations in how I communicate.

For instance, I never speak quickly.  I don’t use five sentences when one will do.  I don’t ask complicated questions that Mummy can’t possibly decipher.

Instead, I speak clearly and in a straightforward manner.  I combine written words along with my spoken words.  And, since Mummy has severe hearing loss, even with two hearing aids, I look at her directly when I speak.

I also keep in mind that half of communication doesn’t even involve the spoken word.  Our facial expressions, gestures, body language and many other nonverbal cues are just as important as what is said.  If you have ever played charades, you will know this is true.

Actually, it is pretty amazing how much one can impart without ever saying a word.

And these days, I find it easier and more relaxing to be quiet.

I’m actually okay with quiet.  Companionable silence can be comforting.

Mummy and I will never again have any easy back-and-forth conversations.  However, we can make the most of what we are still communicate.  What we have now are smiles, hugs, back rubs and even a little laughter.  It’s true we can’t always convey exactly what we would like to tell the other person, but we can show how we feel.

At this point, it has to be enough.  Somehow it is.

“This cold and dreary May weather is so awesome and I really hope we get more snow!” said nobody, ever.

Yes, it’s May and it snowed on an off yesterday in Minneapolis.  No, it didn’t actually stick (as we say here), but it snowed nonetheless.  My daughter arrives from Boston in a few days.  On the east coast, they are wearing flip flops and sun dresses.  Here, not so much.  Instead, we are still sporting PG&S attire (parka, gloves and scarf).

When I talk to my daughter, she always asks about our weather.  She wants reassurance it won’t still be winter when she steps off the plane.

“Please, mom, just promise me there won’t be snow,” she pleads.  Even though I fear Mother Nature may not cooperate, I make sweeping, wildly optimistic promises.

“Oh, spring is almost here,” I enthuse — throwing my arms in the air for emphasis.  “I saw the forecast and it will be warm and sunny by the time you arrive,” I add expansively.

Talk is cheap.  What my daughter doesn’t know is that the warm and sunny forecast is for North Carolina, NOT Minnesota.  Honestly, I’ve no idea what will happen here next.  We’ve not had any spring to speak of, and I have the sinking feeling it may bypass us entirely.

I picture waking up in early July and it will be hot and humid, typical for Minnesota during the summer months.  The muggy weather will last for 10 weeks or so and then winter will begin again.

Mother Nature can be cruel.

Yet, we are a hearty bunch here.  We stick together and roll with whatever comes our way.  If there is no spring this year, it will certainly return again.

In the meantime, I’m hoping my daughter will be able to weather the weather during her visit.

I’m practicing what to say to her upon arrival.  How does this sound?  “In Minnesota, we proclaim our love of snow whenever it arrives!  In fact, even more when it arrives in May.”

I can guess her response.

“Nice try, Mom,” she’ll say.  “Snow is great in May?  Said nobody, ever.”

Today is my daughter’s birthday.  It is so difficult to believe that 20 years have really passed since that spring evening when she came into the world and changed my life completely.

How to mark her very special day? I floundered — trying in vain to write a funny, touching poem that would  convey my feelings and yet rhyme/at the same time.   I failed miserably.  Then, I remembered a book my daughter and I both admire.  Published in the 1970s, “The Heart Has Its Seasons” is a slim red volume filled with quotes, poems and passages, some forgettable, but many beautiful and timeless.

Paging through the book, I happened upon just the right words for a young woman who loves words.  Read these creative words, my dear and know that I’m thinking of you.  Happy Birthday.

Creative Words

                                                                              Norman O. Brown

*photo courtesy of sugardaze

This morning I read an article in USA Today about the legacy of Margaret Thatcher, who died last week at age 87.  Written by Michael Wolff, the excellent opinion piece is not about the prime minister’s long-term political and economic contributions, but rather about the last dozen or so years of her life when she struggled with  some form of dementia.

Wolff, a well-known columnist, author and and creator of Newser, eloquently writes that the media missed a central point when it largely ignored her cognitive impairment.

Endless footage and column inches were devoted to the the controversial Thatcher’s legacy of free market champion, conservative friend of Ronald Reagan and Cold War antagonist.  Whatever you thought of her strident politics, Thatcher was indeed a fighter through and through.  Yet, little media coverage was given to the final years of her life, when she, and her family, actually faced the most difficult fight: How to live a life and find meaning when your brain is dying?

Wolf writes, “Margaret Thatcher’s 12 years of dementia were vastly more difficult than any other period of her life.  Her supporters ought to see this as an ultimate signature fight.  Even her detractors out to be humbled by her fate.  Nobody can deserve to die like this.”

Like so many of us, Wolff has first-hand experience with dementia (his mother, now deceased, had some form of dementia) which makes this subject very personal.  He knows about the confusion, challenges and heartbreak.

Wolff’s main point is that the media has the power to shine a bigger spotlight on dementia and it has a responsibility to do so.  Will the media step up?  Will famous families chose to tell their stories and put faces to this disease?  I hope so.  The clock is ticking.

“Yet many of us will die this way — without remedy or options.  Because of all the stories we tell about people, both the great the small, we really never tell the final one,” said Wolff.

Please take a minute to click here to read Wolff’s full article that ran in USA Today:  Iron Can’t Shield Us From Everything.

It started innocently enough.  I was shopping at Whole Foods, an upscale grocery chain that specializes in organic kumquats, exotic juices and a salad bar that doesn’t seem to end.

Strolling through produce, I picked out some berries.  Next, I selected a small wedge of cheese and then a container of the prepared mixed veggies that I so love.  Breezing past the bakery, I almost made it to the checker without stopping.  That’s when I smelled it.

Bread.

Not just any bread.  This lofty, artisan loaf had its own name, “Ancient Grain.”  Made with twelve grains & seeds, very possibly by Trappist monks who live in the back of the bakery section, it was being sampled still warm from the oven.

With butter.

I buttered up and tasted.  It. Was. Incredible.  Inside my head, a bread symphony was playing and all I could hear was music and my accompanying chewing chorus.

Usually, I don’t buy bread.  From experience, I know bread can lead to dangerous food decisions that often involve red wine and napping during the middle of the day.  I never reach that “I’ve had enough” threshold with bread.  I can just keep going and then I want even more.  Great bread is like the crack of the carbohydrate food group.  There are simply no good outcomes when it comes to bread.

Even so, I wanted it.

With an innocent look on my face, I took a third sample.

It was beyond delicious.  It was made with great ingredients.  It was on sale.

Snatching up a loaf, I knew I had sealed my fate for the next few days.  I was going on a bread binge and it wouldn’t be pretty.

As soon as I arrived home, I started slicing, buttering, eating.  Then, I sliced, toasted and topped.  There were crumbs and seeds everywhere.  It was glorious.  Then, all too soon, it was gone.  Of course, I want more and I shall have it.

Yes, this bread may indeed be the death of me.  However, at least I’ll go with a smile on my lips, a butter knife in my hand and a bread symphony playing in my head.  Oh, and I’ll be clutching the remnants of a loaf of Ancient Grain.  I want to be buried with the bread.

Sometimes I procrastinate.  Always I regret it.  Take my cell phone, for example.  I knew it was time to upgrade my nearly three-year-old Droid, yet I kept putting it off.

I certainly desired the latest iPhone, but the thought of transferring all my data and then mastering a new device seemed overwhelming.  Did I really need that iPhone?  After all, my Droid was a workhorse.  So what if it didn’t have the latest cool capabilities.  I could always make and receive phone calls just fine, which is the most important part of a phone, right?

The months went by and I clung to my trusty old Droid.

Then, one day something happened and there was no going back.

I arrived late to a conference in downtown St. Paul.  It was difficult to see in the darkened room, so I stood to the side and leaned against the wall.

After a few minutes, a conference worker indicated she had found an open seat.  The rows were narrow and the available chair was toward the middle, which meant I had to shimmy by 10 or 12 people in very close quarters.  I attempted to sit down, but there was already something on the chair — a very large purse that belonged to a very large woman seated next to me.

I jumped back up and whispered,  ’Would you move your purse, please.’ Purse Lady glared and yanked her purse off the chair.  She was not happy.

I settled in as quietly as possible.  But every little movement I made seemed to garner angry looks from Purse Lady.

Then I realized, I hadn’t silenced my cell.  Damn!

Without making a sound, I slipped my hand into my computer bag to pull out my Droid.  As I did, something activated on the phone. Suddenly, I could hear a voice.  Oh no! A voice mail message from months ago!

“Hi Nancy, this is Brenda returning your call about the…”

The screen on my phone was blank.  Only the voice indicated the phone was even on.  I attempted to turn down the volume.  I tried to turn off the phone.  I shook it and then I hit it against my leg.  No dice.  The voice continued.  Heads turned.  People starred.  Purse Lady hissed in my ear, “For gods sake, turn it OFF.”

I panicked.

I did the only thing that came to mind.

I sat on it.

Yes, the voice could still be heard.  But thanks to my ample derriere it was now a muffled, faraway, disembodied sound barely emanating from my nether regions.

That’s when I began to laugh.  Silently, my shoulders shook and tears streamed down my face.  I couldn’t stop.  Purse Lady was beyond enraged, and that made me laugh even more.

When the session was over and the lights came on, I leaned in (yes, there are indeed many ways to lean in) and offered an apology. Purse Lady was having none of it.  With a look of total disdain, she gathered said purse and huffed her way to the exit.

The next morning I got up early and was the first customer in the cell phone store.  I bought my new iPhone and I couldn’t be happier. It’s so much fun.  Honestly, I have no idea why I hung on to that dated Droid for so long.  I guess I just needed prodding.  A kick in the pants, if you will.

Actually, this was more like a phone in the pants with a Purse Lady on the side.

In any event, I’m upgraded and got a great story as a result.  So, give me a ring on my new phone.  I promise not to sit on it.

Dear Mother Nature,

Today is the day.  I am taking my big winter parka to the cleaners.  Thanks to you, the sun is shining in the Twin Cities and the weather will be a balmy 43 degrees.  By the weekend, we may top 50, which means heavy coats should be history until late next fall.

Spring is in the air, and I’m really am hoping it is here to stay.

Has spring arrived, Mother Nature?  Only you can answer my question.

Actually, you might be interested to learn I did just fine this winter.  After living in California for so many years, my family and friends questioned my ability to cope with the cold again.  However, Mother Nature, I think I’ve acclimated pretty well.

For instance, I didn’t waste time complaining about you or the weather you create.  I always dressed appropriately for your snow, slush and muddy water.  In January, I gave up trying to keep my car clean.  I lost countless gloves, scarves and hats but never blamed you.  Instead, I bought more gloves, and then stocked up on heavy sweaters and countless wooly socks.  I didn’t even let your dreary, overcast days keep me down because I knew you would eventually make the sun reappear.  Mother Nature, I am respectful of your power and might.

Yes, I was handling winter just fine.  That is, until a few days ago.

It was one of your gray, frosty mornings and I was driving up north to see my mother.  I rounded a curve and drove right into a massive sleet storm.  As a fierce wind swayed vehicles of all sizes, the traffic slowed to a crawl.  Even though it seemed you had pulled out all the tricks of your weather trade, I made it safely to my destination.  However, I had a terrible headache and my hands hurt from clutching the steering wheel.

That’s when I realized: I am finished with winter.

I’ve been a good sport, Mother Nature, and have actually enjoyed the cold months so much more than I ever thought possible.  But now, it is almost April and I am done.

What do you say, Mother Nature?  You made a big impression this winter, but it’s time for a change.  Bring on the spring.

Warmly, Nancy

It’s worse than we thought.  Without a cure or an effective way of slowing the progression of Alzheimer’s disease, our nation will face staggering consequences, according to a widely-circulated study published recently by the Rush Institute for Healthy Aging.

The study tracked 10,802 seniors, aged 65 or older, from 1993 to 2011.  Every three years the participants were assessed for signs of dementia, and over 400 of the seniors developed Alzheimer’s disease during the study.  As a result of the landmark study, and taking into account the aging baby boomer population that will probably outlive previous generations, there are some new and disturbing Alzheimer’s statistics.

The most important figure from the study is the estimation that the number of people living with dementia in the U.S. could reach 13.8 million by the year 2050.  That figure is triple the number of affected in 2010, which was 4.7 million.

There’s more.

Currently, it is costing the U.S. about $200 billion a year to care for people afflicted with Alzheimer’s.  By 2050 that figure could easily balloon to more than a trillion dollars annually.

And then there are the caregivers.  While the Rush study doesn’t specifically address it, there are upwards of 15 million unpaid caregivers in the U.S.  If we extrapolate that number, it could triple or perhaps even quadruple over the next four decades.

Keep in mind that Alzheimer’s is the only disease of the top six causes of death for which there is no cure or even chance for remission.  In fact, if you compare Alzheimer’s to many other diseases such as heart, AIDS, stroke or breast cancer, you’ll find all of these death rates have fallen in recent years and keep on falling.  Alzheimer’s-related deaths just keep on rising, making it the greatest threat to the health of our citizens and the future of our economy.

The numbers published in the Rush report are sobering and much bigger than previously anticipated.  But what is the takeaway?

As a nation, we are facing some tough decisions, and money will be at the root of most of these decisions.

Currently, the vast majority of donations and government funding for Alzheimer’s is being funneled into research.  This simply doesn’t add up.

A cure for Alzheimer’s and other dementias has proven elusive.  We all want a cure.  However, to ignore the anticipated numbers of the Rush study and only funnel monies into research, leaves us woefully unprepared for what lies ahead.  We’ve got to begin planning for how we will manage the influx of new Alzheimer’s patients — patients who would overwhelm the current system.

This means earlier intervention and better protocols for disease management. Catching the disease earlier will help everyone and may even erase the stigma that still surrounds Alzheimer’s.

We must start training and building.

We’ll need many more medical personnel and facilities.  We’ll need more education and understanding of the realities of dementia.  We’ll need to provide tangible support to the caregivers who are on the front line.  We’ll need ways to improve the lives of those living with Alzheimer’s disease.

All of this takes money, but it will also pave the way for new jobs and, yes, even economic opportunities.

A big plan is required and it will take commitment and innovation.

But we are a nation of big plans.  Let’s embrace the numbers in the Rush study and put the full force of our combined efforts into making a bad situation better.  The time to act is now.  We know what is coming.  Let’s do it now so this terrible disease will not completely overtake future generations.

Friends and followers have been asking me for the latest news about my 92-year-old mother, whom we affectionately call Mummy.

Mummy has shown signs of dementia for about five years and is in beginnings of severe Alzheimer’s disease.

After moving into assisted living last fall, Mummy’s symptoms worsened significantly and she continues in a downward spiral. Communicating has become quite a bit more difficult as Mummy rarely talks anymore.  Sometimes, we can guess what she want to convey, but not always.

Occasionally, she will say a few words, or much less often, a complete sentence — usually when you are least expecting it.  Most often, Mummy is simply very quiet.  Quiet and with a grim expression.  Like she is going through the motions of life, but doesn’t enjoy it anymore.   Sometimes, I’ll try hard to get a reaction or smile and be rewarded with one, but her ability to understand and interact with the world around her seems to be fading away bit-by-bit.

In the place of social interaction, Mummy has adopted some repetitive behaviors, which can go on for hours and hours and pretty much fill up a day.  While I’m well aware these repetitions are part of the progression of Alzheimer’s, it is still difficult to watch and impossible to stop.

Mostly, Mummy seems mild, but there are flashes of anger that boil over.  Usually, it happens during toileting or showering.  We try to work with the staff to avoid confrontations which will only make the issues worse.  We’ve come to the conclusion that good enough is good enough, and it is alright to lower standard a little.

I’m no longer certain Mummy knows who I am.  I think she knows I am one of her daughters, but she probably doesn’t know which daughter.

The list of activities that my sisters and I can enjoy with Mummy is now so short.  Eating, sleeping and repetitive behavior has basically become her life.  We do still play cards with her, but the rules have been thrown out the window.  It’s now a mesh-mash of rummy and other games.  Mostly it is improvised, each hand played a bit differently.  We continue to play because it is a familiar activity, one she always loved, and I think she still enjoys it.

One thing is for sure, Mummy does enjoy having her hands and arms massaged.  She will almost purr like a kitten and sometimes even naps when I’m massaging.

Sitting close on the couch and looking through old albums of photos is also a nice way to connect.  My oldest sister bought Mummy a portable cd player so we can put on 1940s big band music or some Frank Sinatra.  It helps soften the mood.

The days and the weeks roll by and then another month has pass.  We wonder, how long can this last? What lies ahead for Mummy? My sisters and I would love to know, but the path will only be revealed as it is traveled.  It is a long journey, but we do what we can to make the best of it — for Mummy and for us.

This weekend, the Time Deciders have us “springing forward” early Sunday morning.  Daylight Savings Time goes into effect, which means we’ll turn our clocks ahead one hour.

Like most people, I’ll be a little bleary-eyed and confused since I’m missing an hour of sleep.  However, the happy reality of more light in the evening will finally hit me when I’m watching 60 Minutes — and it is still light outside!

Indeed, having more sunlight later in the day will be a joy, but that’s not the only part of Daylight Savings Time that makes me happy.  Daylight Savings Time is one of our few remaining shared human experiences.  It’s an event that most Americans  will mark.

Personally, I find it hugely comforting knowing that millions of people will all be scrambling around their homes (like me) moving the dials or buttons on their clocks.  Most of us will overlook at least one clock and perhaps a watch, or even two.  Some may forget the time change altogether and show up at church only to find they are just in time for the offering.  Others might be woken by an early morning phone call that wasn’t really early at all.

Daylight Savings Time will be news for a day or two and then we’ll quickly settle into the new routine…until those wacky Time Deciders have us falling back an hour in November.

But this Sunday, take a minute to reflect about our shared national experience of turning the clocks ahead.  Remember that we are all simply human beings trying to figure out what time it is.