music

AND THEN THERE WERE NONE

I visited with my friend Eva this afternoon. I have mentioned Eva and her very talented musical family, originating from Hawaii, who

finances

Running out of money adds to the stress of aging and Alzheimer’s caregivers.

entertained many of us living here on the Mainland. Whenever we craved the swaying of palm trees, balmy beaches and the setting sun over the Pacific we asked them where they would be holding their next luau. Eva’s husband, Ed, and his band played the very best dancin’ music in town. Not only did they make an evening romantic in its artificial setting, the group provided authentic food, young and beautiful grass-skirted women doing a variety of Polynesian dances, and a traditional fire dance, accomplished by their oldest son as part of the grand finale. Eva taught her girls everything she knew, and when the entire group danced you would swear their hips were on springs. Everything you dreamed about being in the Islands was there during those wonderful evenings of long ago.

Eva now has Alzheimer’s, as did her husband. She is also 90 years old. It seemed that no sooner had he passed on that Eva began showing the same signs of confusion and forgetting. Yet, with the help of her youngest son Matthew, Eva, dressed in a fitted muumuu of her own design, a flower tucked behind an ear, continued to volunteer her musical talents, singing and strumming her ukulele at Senior facilities throughout the East Bay of San Francisco. Eventually, as the disease took hold, she sang her last song and her ukulele lay silent in its case.

She has been absolutely content living in her own home with Matthew, whose mental capacity had prevented him from reaching responsible adulthood. The rest of the family agreed they would be able to remain there by doing a “Reverse Mortgage.” When she was 82, the family helped her work out the details with the bank and a long-term professional caregiver, which included an iron-clad contract for her care until she was 90. The family was certain the 8-year contract would suffice, knowing that Eva was also plagued with diabetes.

Every year Eva’s children came from far and wide to help celebrate her birthday with a grand party, music supplied by friends, and tables filled with Island food. Hearing her friends sing and play the familiar music seemed to bring her confused mind back to what she loved most: music, singing, entertaining and her beloved family. Eva sang bits and pieces of songs she had known and the sounds floated through the air as many joined in to help her recapture the past. She even kicked off her shoes and danced a little. Unfortunately, we all knew that it would be forgotten the next day.

This summer Eva turned 90, and we helped her celebrate the end of an era with family and a few scattered very old friends. It also brought an end to the contract, her caregiver and her home. The house belonged to the bank. As the old book title states, “And Then There Were None.” In this case it was money. The estate was broke. The reversed mortgage had paid its last payment. So now what? When the elderly infirmed reach a point when there is no money left, and the family, scattered all over the U. S., is unable to furnish additional funds, or care for a loved one what happens?

I visited Eva today in her new home which her daughter had found several months ago, explaining the situation to the admissions director and arranging an entry date. I was pleased to see it roomy, comfortable and clean. I also appreciated the important part: the air smelled fresh. Apparently, when family funding runs out for an older patient, the state picks up the tab. It’s no longer like the 1800s when Charles Dickens wrote his sagas about people without the ability to pay being turned out to live on the streets – or were tossed into a debtor’s prison. I couldn’t imagine my frail, gray-haired friend who had given so much in time and talent to the community not to be cared for in an appropriate way. She also needs full nursing care as complications from diabetes made the amputation of one leg necessary.

Arriving at the location I rambled down two long halls before I peeked into Room 36B. Finding the bed empty I couldn’t imagine where she might be. In my return journey down the hall in search of Eva I spied her sitting in a wheel chair with a few other people – also in wheel chairs. They didn’t seem to be chatting, but at least they were company for one another. She smiled up at me, but then she smiled at everyone. I gave her a hug, asking the duty nurse if I could take her for a ride, she nodded and I wheeled Eva into a nearby room where I pulled up a chair so we could talk. It was mostly idle conversation where she could fill in the blanks. Like Ken, deep-thought communication was not likely. By filling in the blanks, she gave no wrong answers. I quietly sang some of the church songs she had taught the children many years ago. Eva managed to join me with some of the words. Later, she asked, “Did your husband come with you?” I doubt she remembered who I was much less Ken, but I took it for what it was worth and said that he hadn’t been feeling well so he stayed home. She sighed, “Oh. That’s too bad.”

Matthew comes to see her daily; the rest of her children and grandchildren come on occasion. Separated by hundreds of miles keeping in touch in a physical way is difficult. Additionally, most of her friends are gone – separated by a spirit world. Again we could say, “And Then There Were None.” Life has a way of making such gradual changes that we hardly notice until we look around and see how alone life can become. Sadly, that applies not only to money, but to family and friends as well.

I wheeled Eva back to where I had found her, reminding the duty nurse that she was back. “It’s good seeing you looking so well,” I told her, giving her another hug and a quick kiss on her cheek, “I’ll come again soon.” She smiled and said, “Thank you.”

photo courtesy of http://www.seniorliving.org/

Originally posted 2011-09-03 20:09:03.

JOHN PHILLIP SOUSA, SMILEY FACE AND ME


Diversion! Change the subject.  Distract them.  Good suggestions to anyone who is the caregiver of victims with Alzheimer’s disease.  In so many ways AD patients are much like children except people with AD are regressing and children are happily moving forward. One experience is filled with joy and the other is filled with sadness as a loved one leaves us one memory loss at a time.  Yet we, as caregivers, continue on – striving to do our best, seeking advice, often relying on our own years of experience — even dipping back into useful techniques from long ago when life was fresh and our children new.

When the little ones were naughty, had tantrums or got into things such as managing to grab Great Grandmother’s bone China tea-cup, you made every effort to change their focus: distract them, divert their attention, or trade a bright, shiny ball for the family heirloom.  At times there was success, and other times there was limited or no success at all.  The same variables are evident when working with AD patients.

There are times when a scrap of memory triggered by some kind of distraction or recollection can change a mood, take their mind away from destroying the TV, or at least turn their interest from stripping the back of all the wires, to something else. Other times you can make them an offer they can’t refuse (which generally doesn’t work because most severe AD patients are beyond reason) or, in desperation, you can pack up every movable object in the home and box it up – for later – whenever that is.  However, just as with toddlers and young children, problems aren’t always solved by “putting things away,” especially when your challenger is tall and strong.

Even more difficult, though, is directing the loved one into going somewhere, or doing something he doesn’t necessarily want to do – especially if it involves keeping him on a halfway-acceptable schedule.

In our house, and unlike our babies and toddlers, shower time (bath time for babies) is not Ken’s favorite thing to do, although it might be if he could remember how he once enjoyed a good hot shower.  Understandably, I believe this particular territory of “personal” hygiene is his last bastion of independence, and I can’t say that I blame him, but it’s also something where he needs a little help and guidance from his caregivers and me.

I have written before about how music does soothe the “savage beast,” and how there have been times when Ken’s mind seemed to relax and clear a little as we listened to sounds of the “Big Bands” on PBS.  Our music and even music into the 60s has filled a few of our evenings with good memories during this time of so much loss.  For me it seems so logical, so reasonable that familiar melodies from the past can work magic through the muck of a diseased mind.  I am convinced music can and does help if only on a temporary basis.  Recently, I thought I would give it a try during shower time.

With my husband a former Navy man during his very young years and WWII (with extended loyalties to the Marines because of his father’s service years) I began humming a few of the marching songs during morning cleanup.  The 4/4 timing, I thought, might be of help as Ben and I guided Ken toward the bathroom and through his routine.  Furthermore, I reminded him of his waiting “dress blues,” the parade grounds, and how important it was that he be ready to join the other men already marching.

All of this military-type music was worked in with my chatty talk about his service years, his father, the Leathernecks, and Dad’s eight years in China.  Possibly, the familiar rhythms struck a chord deep inside his muddled brain because he seemed a little calmer, and while he didn’t speak of his father, he did convey a few unrelated sentences in a pleasant, conversational manner.

He also seemed to respond to Anchors Aweigh – with me singing what I had learned in Mrs. Mahoney’s “Music I” class to show our support for all of our fighting men during the Big War.  Directing his attention to a navy blue sweat suit I asked if those were his dress blues and was he ready to hit the parade grounds as soon as we were finished.  Using no words, his look was one of positive response, and the best part was he was calm.

Encouraged, I continued with my daily melodies often falling back on John Phillip Sousa’s “The Stars and Stripes Forever” whenever there was a lull and Ken’s attention began to wane.  Too difficult to hum, my voice instrument (Mrs. Mahoney said my voice had ranges in the key of flat) entered into the “da – da – da da daaa – da da daaa – da da da – da da da — da da daaaaa — da……”   I even sang the words I had learned as a youth about being kind to our web-footed friends, for the duck may be somebody’s mother…… which seemed to amuse Ben, who, up to that point, hadn’t commented on my latest effort of introducing music into our routine.

I have now branched out — for several reasons.  Monotony can become very irritating.  I doubt that Ken remembers any of yesterday’s happenings, but I need our caregiver, Ben, to also remain calm, cool and collected.  So my morning rendition is more of a medley of many unrelated songs which has become a part of my singing/talk conversation including, “Good morning to you, good morning to you…. using the tune of Happy Birthday.  “Oh What A Beautiful Morning” from the musical Oklahoma came to mind as my memory door opened to dozens of other songs from long ago.  When Ken’s eyes or attitude tell me to stop – to divert – I do — and then I talk for a while – striving to be upbeat and encouraging.

Do I believe the variety of old familiar music (including marches) helps?  Being reminded every morning of something from his past may have pulled up shadows of memory. If nothing else, I do believe it helps him change his focus, even to the point where today he sang a few “Good mornings” back to me.  Does positive reinforcement help?  It all remains to be seen, but what I do know for certain is that the experience is a diversion, and anything that can change unpleasant into at least tolerable, or better, is a good thing.

Diversion worked with our babies.  All the while we splashed them with tepid water we cooed and smiled and whispered sweet words of encouragement and affection, and they responded with equal coos and wonderful toothless smiles.  It wasn’t much different as they grew a little older, and I checked out small ears after a day in the sandbox.  I had my own sing-songy song to tell about their dirty ears:  “Car rots, po ta toes, cu cum bers and squash; A veg’ ta ble gar dens in your ears by gosh. “And they responded with laughter, shiny faces and  smiles filled with baby teeth.

So when our loved ones become old and sick, isn’t it beneficial – and kind — to muster up a bunch more patience, a few silly songs, cheering marches with John Phillips Sousa, and – yes – an extra splash of love to help them through this very difficult time in their life?  I have also found that – sometimes — especially when I smile at him – he may give me a broad, warm and wonderful smile in return — just like the one he gave me the night we met.  That’s a diversion for me as well, and a reward.

Originally posted 2011-02-20 05:00:21.

TO SOOTH THE SAVAGE BEAST

The only way I can find missing “stuff” that Ken hides is to concentrate on one room at a time.  I don’t just search, I clean and sort as I go.  Beginning in one corner, I cover every square inch; moving knickknacks, dusting books, thumbing the pages in search of hidden mail or other pieces of flat stash he might have tucked away.  In our bedroom I always begin in one corner, which seems to be a key area for him to put things in a “safe” place.   Because it is his favorite hiding spot, it is also the cleanest corner in the house.  When I find the thing for which I am searching I usually stop looking — and cleaning.

Presently, I have a long list of missing items, so I will probably cover the entire room including the closet and all of the drawers, and then move on to another room.  Armed with vacuum, old towels, Simple Green, a trash can and a box for donations I begin the task.  Flipping on the TV for company I turn to PBS and find they are doing a funding drive (aren’t they always).  The program is music from mid-century.  Good, I thought — before, after and during the 50s era — that was our kind of music.

As the old familiar tunes played and the cleaning began I found myself drifting back to happier times remembering when people actually went on dates.  Ken was so courteous, never taking it for granted that I would reserve the weekend for him.  Never waiting until the last-minute he would call mid-week to secure an evening.   Of course, we went to movies, enjoyed a snack at a local drive-in afterward, but the popular date was going somewhere to dance.

Dancing under the stars at Larkspur, an open air pavilion in Marin County, was always special.  It could be a little cool, but we were warmed by the romance of it all, or if I felt a chill he would offer his sports coat which I accepted.  Scattered lights twinkled among the surrounding trees and if the fog stayed away the moon shined through adding its own charm.   There was also The Edgewater,  a new dance hall near Playland at San Francisco’s ocean beach just below the Cliff House, but because it was new it was super crowded, so we avoided that one in spite of  missing the band that might be playing.

A really big date was being invited to go dinner dancing at the Claremont Hotel in Berkeley, which we did on occasion.  We danced, ordered dinner, then danced between courses.   The food wasn’t wonderful, but that was all right; music, dancing and a romantic evening out were what was important.  It was all part of what we called courting.

All of the hotels engaged the various Big Bands, but as their popularity began to fade, along with ballroom dancing, the hotels maintained an “in-house” band.  Russ Morgan was the Claremont’s choice for many years.   Ken and I danced mostly to his music and hummed his theme song  “So Tired” which became “our song.”  It was at the Claremont that I first asked myself, “Am I falling in love with this guy?”   I suppose I was — and did.

I had hardly moved on to the next section of the bedroom when Ken found me.   “What are you doing?” he asked.  I’m never sure who he is or what he might say.  Would he feel threatened to find me in “his” room and ask me to leave — to stop touching his stuff?”  I held my breath trying to read his mood.  Accepting my answer as reasonable, he continued.  “Would it be all right if I stayed in here with you,” he asked.  “Of course,” I reassured him.   Looking around for a place to sit, he eyed the bed.  “Is it okay if I sit on the bed?”  My husband was mellow and non-aggressive so I invited him to just make himself comfortable.  Propping up his pillow he settled in.   After a time PBS stopped the program for their long pledge “commercial” before returning to our music of yesteryear.  I continued cleaning and Ken began a conversation.   “Nice music,” he commented.  “Do you remember the songs,” I asked.  “A little,” his answer being more question than fact.   I began to reminisce about our past, cleaning and talking longer than I thought possible, being grateful for this time we were spending together — being almost normal.   Ken listened, adding nothing as he lay there relaxed and enjoying the moments.  I wondered if somewhere in his troubled, clouded mind the sounds from long ago might help him find some peace, at least for a little while.  Wasn’t it Milton who said, “Music hath charms to sooth the savage beast?”  Perhaps he was right.

Originally posted 2009-07-27 01:15:04.

FAMILIAR PLACES, AN ALZHEIMERS VIEW

VISITING OLD FAMILIAR PLACES

Liberace Album, I'll Be Seeing You

Remembering our familiar places to the tune of this Librace song, made both of us cry.

November 21, 2014 – In the early 2000’s Ken and I took our last road trip together where he did the driving. We toured west, then southwest to see places and people I doubted we would visit again: Friends in Utah, cousins in Nevada, more friends in New Mexico and more family in Colorado, then back through Utah and home again. All the way we came fortified with music we both enjoyed: Sinatra, Como, Dick Haynes,the Big Bands and a sprinkling of Liberace at the piano and in voice. As I had mentioned all of this in a previous blog many of those older tunes and lyrics touched our hearts, even then, as we both understood where this terrible disease was going to take us. As Liberace sang one of our old favorites Ken reached over and took my hand. Tears streamed down both of our faces as we accepted this deadly, unknown enemy with no weapons for defense. The tune was a romantic ballad: “I’ll Be Seeing You In All The Old Familiar Places.” The lyrics spoke of a chestnut tree, a wishing well, a park across the way and a childrens’ carrousel. At the time we both knew I would be seeing the remembered and familiar places by myself.  Continue reading

Originally posted 2014-11-22 05:53:08.

THE RUSTING YEARS

Like an old and abandoned truck, some seniors feel they are in their rusting years.

“The Golden Years my Aunt Tillie,” said Frances as we talked about these last few rungs on life’s ladder.  “They’re more like the rusting years.”  “Well put,” I had agreed as she was in the midst of recovering from a bad face-on-the-ground fall that knocked her into the next county breaking her jaw which had to be wired shut while it healed. Like a flash of lightning Frances could zap out words faster than Quick-draw McGraw could whip out his trusty six-shooters.  Her comments could be loving, kind, happy, knee-slapping funny, profound, glib, and, at times, a bit stinging. Did the wired jaw stop her conversations or even slow her quick wit?  Never.  As long as her tongue and mind worked in unison the tumbling words slid out between her teeth and lips with never a pause.

We had become good-enough friends that every so often I was allowed to say, “Oh Frances…….” when a remark might be a little too biting, too stinging or sarcastic, but most of the time I laughed.  She was very funny.

Frances was a widow, and had been for more than 15 years and even with Ken’s AD she invited us for dinner, and I, in turn, prepared dinners for her.  Ken had been Cub Master and she was a Den Mother when all of our boys were just boys.  The two hit it off famously and became the best of friends with my utmost approval.  Frances always puckered up and gave Ken a quick peck on the lips whenever they met.  Following their amicable kiss Frances would say, “How! Great White Father,” holding her hand up with an Indian greeting in reference to a long-ago Pack Night theme from a sweet, innocent time when we were all young.  Then one day we were no longer young and she was suddenly gone.  I miss my friend.

I’ve noticed that a lot lately; our friends keep dying, or they move away.  “Get some younger friends,” advised another dear friend Sofia who, with her husband Don, have moved away, but not too far, just inconveniently far.

Making “couple friends” is difficult though when your spouse has a debilitating terminal illness.  So I mostly hang out with women who have lost their husbands.  They are widows and I am sort of a widow, but I’m not.  Nevertheless, there is an inescapable loneliness in being the one left behind no matter what your title.  Unfortunately, that feeling of being alone can never be filled by friends or family, even though the need for friends and family remains paramount to the well being and happiness of the remaining individual.

I thought about this the other day when I visited Eva.  She and her husband were the entertainers from Hawaii who I have mentioned in other writings.  He’s been gone for more years than I remember, and now with her AD and circumstances dictating the remainder of her life she lives in a very nice full-care facility.  Walking through the halls I was aware of so many lonely souls sitting in their wheelchairs outside of their rooms, and I wonder who they are and about those who still share their lives.  Sofia’s husband Don has a phrase that I often think about when I visit people with full dependency on a nursing home:  “A mother can care for seven children, but seven children can’t seem to take care of one mother.”  It’s only a phrase, but following that first capital letter and the ending period, there’s a lot of truth in those few words.

I found Eva in front of her room matching the forlorn description of the others. Tiny little thing sitting there by herself, looking lost, lonely and pitiful, and I couldn’t help but feel a stab of melancholy as she scanned the area – searching – waiting.  “Let’s go for a ride,” I suggested, securing the foot rest, and then wheeling her through an open door.  It was pleasantly warm outside, so that’s where we went.  I parked her chair in the shade with ribbons of filtered sun teasing the shadowed greenery.  “Where……,” she stammered.  “What is it?” I coaxed.  “Where is my family?” she asked looking puzzled about her surroundings.  That’s the trouble with AD; the answer has been given, but the question keeps rising to the surface.  “All of your children except for Matthew live very far away,” I reminded her.  “They come when they can, but I know Matthew is here to see you almost every day.  I’m sure he’ll come later this afternoon.”  I think of Eva remembering how she was:  beautiful and vivacious in her brightly colored and fitted muumuus, and so filled with charm as she strummed her ukulele and sang melodies from the Islands and pop tunes of the day.   Now I feel overwhelmingly sad that the life she knew, her home and all that was familiar are gone.

Rather than making small talk I sing to Eva.  To those who know me really well my singing is a joke, but I’m not making conversation, nor do I, for one minute, think I’m the entertainment du jour.  I’m communicating with her spirit.  This I believe.  Eva relates to music so I softly sing some of her favorite hymns and songs I recall from her entertaining days.  She manages to join in with a few words and she smiles, and for that little while she appears to be content.

At 90 most of her friends are gone, others are not capable of travel, but I do believe there is a self-imposed detachment that happens with some friendships – and even some family members concerning these last years. I know with certainty that many people claim they don’t have the capability of coping with seeing their friend or loved one in a care facility, hospital, or even visiting the infirmed or elderly in their home; “Too depressing.  I just can’t deal with it.  It hurts me too much,” I’ve heard people say.  I understand because my father was that way.  Yet, I want to scold and remind them, “This isn’t about you.  It’s about Eva, Uncle John, Rose, grandpa, your sister, brother, your father, or Frances’ Aunt Tillie.” You need to strive to bring some joy and a little companionship into that person’s life.  Forget about yourself.  It’s called love and compassionate service, and the more you participate in reaching out to others, the more you grow as a person.  Pretty soon, you’ll even catch the spirit and you’ll be surprised at how good you will feel when bringing some brightness into another’s life.  I could say all this, but I won’t.  It isn’t my place, but if Frances were here, she would.  She might also tell them a few funny stories about the rusting years.

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Originally posted 2011-12-03 01:59:36.

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