Tag Archives: Alzheimers

The Sweet Life

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2 scoops vanillaTen years ago my mother moved into a retirement community.

For six years she lived in a lovely apartment in the assisted living section, while her dementia continued to worsen. She has spent the last four years in a slow decline, in a secured area of that same retirement community.

As her dementia has progressed, I’ve done my best to embrace each version of her.

 

My 85-year old Mother is now in the end stage of dementia.

It may have been a stroke that caused her to turn this last corner, or just the natural progression of the disease. There is no need for diagnostic tests. They would only serve to satisfy our curiosity. The end result is the same.

As they say in memory care, “there has been a significant change.”

She is completely immobile except for her left foot which she wiggles in response to touch or in time to the music of Frank Sinatra, and her left arm which she occasionally raises while sleeping, bearing a strong resemblance to Rosie The Riveter.

She is no longer verbal.

Her ability to swallow is compromised. Her liquids must be thickened and her solid food must be pureed.

Four times a day she rides a Hoyer lift, as she is moved back and forth between her bed and a reclining wheelchair.  It’s as if she has a Disneyland E ticket for an amusement park ride no one ever wants to board. She endures it all gracefully.

At the onset of this final decline, I was sad. For a few days I occasionally boo-hooed at her bedside, grieving the decade and a half that we have lived without the original version of Mom.

Once I quit feeling sorry for myself, I realized there is a certain sweetness to this stage.

There are no more repeated sentences. The questions composed of jumbled words which seemed impossible to answer appropriately, have ceased. The gibberish is gone.

At times, she has a flat expression or is just too sleepy to open her eyes. But, some days she awakens from a nap in her bed with a sweet, contented smile – much like an infant.

Other times she is bright-eyed and able to follow a conversation with her eyes. There have been silent giggles that turn into giant, yet still silent, belly laughs. These are so delightful  I don’t miss the sound of her original laugh.

Occasionally, it seems that the pathways in her brain have been magically reconnected.

When she refused to eat, we realized she was simply refusing to eat foods with a texture she didn’t like. I mean, really – not every food works in a pureed form.

She knew exactly what was going on. Her hunger strike at breakfast ended when oatmeal was taken off the menu. My sister clued the nurses in that Mom is a cream of wheat girl!

Her daily menus are now heavy on mashed potatoes, pudding, malts, and double scoops of ice cream. When she won’t eat anything…she will eat ice cream. Even when she is too tired to open her eyes, she opens her mouth awaiting the next spoonful.

These days, she really does eat dessert first.

Sure, there have been peaks and valleys as she slows down and then rallies. Any pain or discomfort is quickly soothed by the warm embrace of a morphine haze.

Always a college hoops fan, she is here for one more season of March Madness. The games serve as energetic, happy background music.

As we head into the Sweet Sixteen,  I am not entirely certain she will be here for the Final Four.

Instead, she is on the road to a long awaited heavenly reunion with her  Sweetie Pie.

Until then, we will savor the time we have left with her.

Mom will savor the ice cream. Two scoops at a time, with Hershey’s syrup.

Because, in more ways than one, life is sweet.

 

 

 

 

 

 

Music & Memory

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I’ve witnessed the power of music with my Mom, who has advanced dementia.

On days when making conversation is difficult for her, she may ride quietly in the passenger seat of the car, or read a few signs we pass, or maybe whisper both sides of a conversation with someone I can’t see.

However, if the radio is set between a 40’s station and a light 70’s station, she’ll sing along. She’ll check the display to read the artist and song.

The songs trigger memories and conversation.

“Gosh, if I had a nickel for every time my girlfriends and I danced to this song.”

I’ve been through the desert on a horse with no name….I always thought their sound was just so pleasing to the ears.”

I know even this small bit of stimulation is good for her, and it is enjoyable to see.

A few months ago, I joined her for a Sunday afternoon of Christmas Carols at the care facility where she lives.

We sat amid a crowd of residents – many with dementia, and sea of walkers and wheelchairs,

Maybe I’ve watched too many Fa-la-la-la-Lifetime and Hallmark movies, but I swear Mike the piano player looked exactly like Kris Kringle in street clothes.

His repertoire included all the classics. He was delightful!

Occasionally, he stopped singing and let the group finish a line of a song.

The residents knew all the lyrics to every song.

I smiled as I looked around the room, and saw the heads bopping back and forth and the toes tapping in rhythm with the music.

No one was restless, agitated, or sitting in a dull, detached state.

The residents were relaxed and engaged with Mike and his performance.

It was fascinating to watch.

Somehow, the music magically melted through the fog of dementia.

I was so moved by what I was witnessing that I got a little teary.

Instead of looking sort of stone-faced as she had the previous day, Mom was animated.

She happily smiled at my phone so I could snap a pic.

Christmas Caroling Lois Anne loves a selfie

Christmas Caroling
Even Lois Anne loves a selfie!

The memory of that afternoon is a treasure.

A few days ago, my friend Terri, emailed me about a news story she had seen featuring Music & Memory – Muncie

This new program was started by a group of freshman at Ball State University. It is affiliated with Music & Memory, a national non-profit 501c3 organization, but the BSU students believe they are the first college-based group.

The mission of Music & Memory – Muncie is to bring iPods with personalized playlists to the elderly, especially those suffering with dementia and Alzheimer’s.

They recognize that personalized music can enhance the quality of life for these nursing home residents with cognitive disorders.

This is a brilliant and beautiful program. I remember the soundtrack of my college years. These college freshman are just beginning to compile theirs. I love their awareness that these older folks had a soundtrack to their lives, too.

By speaking to a resident’s family, they learn what genre and artists the resident likes.

With this simple idea they’re delivering more than just music.

They’re sparking happy memories.

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They share friendship, love and compassion.

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With the use of splitters, the students listen to the music through their own set of headphones.

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Because music sounds best when shared, doesn’t it?

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What an amazing way to enrich and humanize an isolated, nursing home existence.

M&M 2

 

M&M 1

 

When I read about their work and looked at the heartwarming photos, I was again moved to tears.

I was also filled with some Hoosier pride.

These college freshman are a great example of making the world a better place, by beginning in your own “backyard.”

They’re using their time and talents, employing a little bit of technology, but more importantly – a whole lotta heart.

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If this “strikes a chord” with you, like it did with me, and you are interested in supporting this wonderful program, there are a few ways you can help:

  1. Visit their gofundme page and make a quick donation. Super easy and every little bit helps!
  2. Have you or your kids upgraded to a new iPod? Do you have a gently-used iPod (preferably an iPod shuffle) sitting around the house? They’ll take it!
  3. Grab an iTunes gift card the next time you’re at the grocery store. They’re always right there in the checkout area. Then instead of buying Candy Crush lives – boost some more interesting and real lives.

iTunes cards or gently used iPods can be mailed to:

Music and Memory – Muncie
c/o TCOM Dept.
Ball State University
Muncie, IN 47306 

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I hope you’ll consider helping these remarkable BSU students with their inspirational program.

Visit their website or Facebook page to learn more about their work.

In an email to me, Tyler Sparkman, President of Music & Memory – Muncie wrote:

It has become an absolute joy and life changing experience working with these residents. Not only have we gone in and helped change the lives of the elderly by sharing these personal iPod mixes, but the elderly have also changed our lives! 

Well, that is music to my ears.

Clearly, no matter what genre of music they load on those iPods, these students ROCK!

 

 

The Gift Of The Moment

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IMG_5465Next month, I will be attending the Erma Bombeck Writers’ Workshop.

This is very cool for me because I have always enjoyed Erma’s writing. It is often heartwarming, always pure comic genius, and timeless. Long before I could relate my personal life experiences to her writing, I thought she was hilarious.

At the age of 50, I have a greater appreciation for her insight and her use of  humor to celebrate the ups, and cope with the downs, of life. Life is short, but some days sure seem long. The ability to see the funny in everyday life is a gift.

Even Erma’s views on the subject of humor were insightful. Some of her more famous quotes about the importance of humor are:

If you can’t make it better, you can laugh at it.

He who laughs….last.

When humor goes, there goes civilization.

I have a sentimental attachment to her writing, because it reminds me of my Mom. When I was growing up, one of us would often ask the other, “Did you read Erma today?” Together, we laughed about her column, read her books and watched her segments on Good Morning America.

During the summer, we also tuned in at 9:00 a.m. to watch The Phil Donahue Show together. Oh, the education a teen could gain from The Phil Donahue Show back then. It was THE source for information, because he covered all the thought-provoking and juicy topics.

So, Phil and Erma are forever linked together in my mind. Not only because they are former neighbors who had a mutual admiration and affection for each other, but because they were involved in a sort of 1970’s Midwestern love triangle with my mom and me. Nothin’ weird here, this was a triangle of appreciation and adoration.

erma phil diagram

We enjoyed Phil, and we loved Erma. Erma and Phil loved and adored each other.

In light of this, it is especially cool for me that Phil Donahue will be the keynote speaker at the The Erma Bombeck Writers’ Workshop.

During a visit to my hometown over the holidays, I decided to tell my Mom that I had gotten into the workshop. The former version of my Mom would have been so tickled about this. I knew the current version of my Mom, with advanced dementia, would not fully grasp what I was saying. I also knew she would have absolutely no memory of the conversation, just a minute later.

Despite being the subject of a few blog posts, including Sweetie Pie and She’s Such A Doll; she knows nothing about my blog, and has never read a single post.

So, as silly as it may be, I still wanted to share this news with her, and just enjoy the moment. 

One afternoon I sat in her room, reading the Christmas cards she had received. Some included photos or letters. (For anyone who continues to remember nursing home residents with greeting cards, may God Bless you for this kindness.) We passed the cards, photos, and notes back and forth. She was able to fondly recall at least a small detail about each friend or family member.

She was “tracking” fairly well, so I decided to share my news with her. As we chatted, she was lying on her side, atop her bed, like a teenage girl. Her elbow bent, her head propped up in her hand.

“Mom, do you remember reading Erma Bombeck?”

“Oh GAWD, yes. She’s SO funny!”

“Well, do you remember my friend, Terri?”

“Well, of course. How is she?”

I went on to explain in very simple terms, with no details, that Terri and I would both be attending the Erma Bombeck Writers’ Workshop in Dayton, Ohio.

I never even got to the part about Phil Donahue.

My Mom sat up, and said, “Really? You’re kidding?”

Wow! Had I really picked the perfect lucid moment?

Then she said, “We should call Grandma! She loves Erma, too!  She’ll go with us!”

Chatting with dementia, the trickster, is sort of what I imagine doing improvisational comedy is like: you never know which direction your partner will go next. You need to be on your toes, open to anything, think quickly, and just go with it.

We both smiled at the idea.

It was a lovely moment.

I went with it.

“Sure, that’s a great idea, Mom!”

As she slowly counted off on her right hand, she said “That’s 1, 2, 3, 4, 5 of us.”

Yep. Me, Terri, Mom, Grandma….and Erma gettin’ away for the weekend.

Of course, only three of us are actually alive, and only two of us are registered for the workshop.

Yet in some way, I feel like all five us will in fact be there.

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Laughter rises out of tragedy when you need it the most, and rewards you for your courage.

– Erma Bombeck

Bingo, sex and the city Style

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I recently saw a news segment about Bingo returning to popularity, and dare I say…hipness. The footage featured social clubs and lodges hosting BYOB, traditional Bingo tournaments. Hipsters were seated at long banquet tables with wine and beer bottles in the center. Bars hosting pop culture themed Bingo nights draw enthusiastic crowds ready to enjoy the old-fashioned game.

Nostalgia never goes out of style. Amid our ever changing, tech-crazed world, I think there is sort of a soothing quality to Bingo. It is rhythmic: listening for the call, scanning your card, marking the number, exhaling.

I was surprised to discover I was actually on the cutting edge of a trend, however with a bit of a twist.

Every Thursday afternoon at 2:00, Bingo is played at the health center where my Mother lives. A gentleman named Dave arrives to volunteer as the Bingo caller, and his girlfriend Rita helps players who need a little assistance. Dave and Rita are a great team, and add to the fun. The average age of the players is at least 80, and many have Alzheimer’s or some form of dementia.

Dave, Mom and Rita

Dave, Mom and Rita

On the Thursday afternoons that I am fortunate to be in my hometown, playing Bingo has become one of my favorite things to do with my Mom. It is good mental and social stimulation for her, and it is pure fun to be with this crowd.

This past December, I convinced my niece Sarah, an elementary school teacher enjoying her Christmas break, to join my sister and me for Bingo with Grandma. I’m sure she thought I was over-selling it, but she was a good sport and came along. The four of us settled in at a table, for our multi-generational girls’ day out.

Even before the first game began, we had somehow morphed into the sex and the city girls. There we sat: middle-aged Carrie and Charlotte, professional 30-something Miranda, and of course 82-year old Samantha. Each of us had 2 Bingo cards and a margarine container full of Tiddly Winks to use as markers.

The television characters Carrie, Charlotte, Miranda and Samantha all lacked self-control in at least one area (men, food, drinking, clothing, purses and shoes) at some point during the series.  The Carrie, Charlotte, Miranda and Samantha seated at the Bingo table lacked self-control in stifling laughter.

Dave began his witty Bingo calling, custom-tailored for his geriatric audience.

B..4…B..4…Not after…..but….B…4

Each number was repeated several times, while the players intently searched their two cards. Invariably, no matter how many times Dave repeated the call, at least one player asked, “What was it again?”

BINGO!! Charlotte handily won the Grand Prize for the 1st game. The Grand Prize box was passed to her. She carefully perused the assortment, which included lovely scented soaps, lotions and other gifty personal items. “Oooh!” she said as she dug to the bottom and proudly revealed her pick.

“Really? Seriously? A pack of Band-Aids?” Miranda said. She could hardly contain herself, laughing at Charlotte’s ridiculously nerdy pick.

I..22…I..2..2…Our ballerina’s…..Tutu….I22

BINGO!! Carrie won the 2nd prize in the first game, and thoughtfully chose a small box of Junior Mints:  a prize to share with the table. True to the lore of Junior Mints, in the process of struggling to open the tightly glued little box, a waxy chocolate disc was launched into orbit. Miranda chased it as it bounced across the room.

B…12….B…12….Everybody’s favorite vitamin….B…12

Miranda, an experienced Bingo caller for the kids at school, thought she knew all the “Bingo Lingo.”  The funny B12 call caught her off guard. Her self-control was crumbling.

Samantha was especially spunky, sparring with Dave and trading jabs, both with great amusement and affection.

Her uninhibited sense of humor was also on fire. You know Samantha, the innocent mention of a word like “balls” can result in a zinger.

The rest of the girls were stifling nervous giggles.

A player at a nearby table, impaired from an unknown ailment, spoke with a squeak that sounded remarkably like a cat saying, “Mew, mew, mew.” The unspoken fear among the girls was that Samantha would grow annoyed with the “mewing” and say so, or heaven forbid, imitate it!

O…66….O…66…Get your kicks…… on Route 66……..O…66

This call is magical, because while dementia may erase decades of memories, song lyrics are easily recalled.

Dave started off by loudly saying,  “Flagstaff, Arizona”

From the a table in the other corner of the room came, “Don’t forget Winona”

Another resident added, “Kingman, Barstow”

Finally, “San Bernardino”

Eager to join in the fun, Carrie chimed in: “Winslow, Arizona” before realizing that she had the wrong song, artist and decade.

There was no need for Carrie to be embarrassed. The beauty of this group is the acceptance of cognitive shortcomings and forgetfulness. Anything goes, and most everything goes unnoticed, including a loud, unmistakable fart.

Maturity and self-control were fading quickly.

Rule-following, competitive Charlotte regrouped and focused on her game. It paid off. She had one Bingo after another. However, Carrie FORBID her from declaring them, and stealing a win and a prize from a resident.  It was killing Charlotte. It was killing Dave, too. He repeatedly strolled by, checking Charlotte’s card saying, “If you’ve got it, just call it.”

Each of Charlotte’s undeclared Bingos made the game drag on… and…on. The Grand Finale, the “cover all” round was complete, just as Happy Hour was beginning in the adjoining sunroom.

Woohoo! The party was on the move!  Samantha led the way.

Girls’ day was stretching into girls’ night.

In addition to the selection of beer and wine offered, Mai Tais were being served.  This Happy Hour lacked cosmos and a cheese plate, but no one cared. There was lively conversation, and there were cheese curls!

The girls partied on, until 5:00…… p.m. that is, when suddenly without warning, and without saying “Goodbye” Samantha stood up, walked out of the sunroom, and sauntered down the long hallway.

Samantha had enjoyed enough time with the girls. It was time for dinner, and  BINGO!…. yes, there was a fella she was hoping to run into.

Girl Talk

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The earthly world lost a special soul this week. She was loved as a sister, as a Mother by five children and as a Grandma to thirteen grandchildren.  She was Aunt Jan to me, and I was also blessed to have her as my Godmother.

I loved her as well, and I also thought she was just such a neat person. When I was growing up,  it seemed most of the Moms that I knew were reading paperback novels.  Aunt Jan was reading non-fiction. Today with the convenience of Google, we forget that a few decades ago, finding answers and learning about any topic required actual reading; committing to reading an entire book. Imagine! Aunt Jan was a modern woman; always reading something interesting. Many of these selections she shared with my Mom. They could be books on psychology or books that would probably have been found in the “self-improvement” section. Not that either of them needed improving, I think they just enjoyed the enlightenment. After all, this was the era of Phil Donahue!

One reason I thought Aunt Jan was cool, was because I was an animal lover, and she was really the only adult, I knew (other than my parents who were selective animal lovers) who seemed to like animals. Her family had both cats and a dog. Several times when she stopped to see my Mom, she couldn’t stay long, because she had the dog out in the car. These days,  people take their dogs everywhere with them, but back then – not so much. How especially endearing that this always perfectly-dressed-from-head-to-toe  woman loved  snort-y, smush-faced boxers!

She would never believe it, but she was a fashion role model for me. During the early 80’s “Color Me Beautiful” craze, Aunt Jan had her colors “done.” I’m not sure if she was a Spring or a Summer, but she found she looked best in pastels. Not old lady pastels, but elegant ice-y pastels and light neutrals, often worn monochromatically.  She was a beautiful example that you should skip the trends and wear what looks best on you. To this day, when I am shopping and I see something in those colors, I think:  that is an Aunt Jan color. 

The thing I will remember most fondly about my Aunt Jan is the friendship she and my Mom shared. It developed after they married brothers; brothers who who were  the two oldest boys in a family of five children. In old home movie footage, filmed when my Mom and my Aunt Jan were girls in their early twenties, they are  leaning against a dining room wall, laughing together. The laughing continued whenever they were together for almost six decades. They can be seen standing together in candid photos, and standing next to each other in posed group shots.

They shared a special connection in a large family. They each had five children, and they shared the same silly sense of humor. I could always tell when my Mom was talking to Aunt Jan on the telephone.  I loved to hear my Mom hang up the phone and say, “Aunt Jan will be stopping by  in a little bit.” It meant a fun visit was in store. Perhaps they wanted time alone for adult girl talk. Too bad. By the time I was a teenager, I wasn’t missing a minute of it. I loved to listen in on their interesting conversations. They were funny together, and Aunt Jan had the most distinctive, quiet, adorable little giggle.

In the last couple of years,  I shared in their final visits together. My Mom was in the fog of dementia and Aunt Jan was in the advanced stages of Alzheimer’s. I was there, but finally, I didn’t horn in on their girl talk. During our first visit, Aunt Jan was completely focused on my Mom and seemed to hang on her every word. My Mom was suddenly alive, animated and full of conversation. She was able to recall all sorts of memories, and told the stories of their lives to Aunt Jan. Several times, in response to my Mom’s “Remember when we….” Aunt Jan would say a quiet “yes” followed by a faint whisper of that same adorable giggle. Throughout the entire visit, their hands remained clasped together.

After visiting Aunt Jan, my Mom would say, “Gosh, it was just so good to see her. I have really missed her. She and I have had so much fun together over the years.”

It was an unexpected and incredible gift for me to watch these two sisters-in-law and girlfriends connect in a way that can’t be logically explained. I know Aunt Jan didn’t actually recognize my Mom, and my Mom didn’t  fully recognize what was going on with Aunt Jan. But the changes that had taken place in their minds didn’t matter. They had decades of history together, and I believe there was recognition in their  hearts and connection in their souls. I am so thankful I was able to witness it. The memory of that girl talk is a treasure.

While it is comforting to know Aunt Jan is no longer suffering, it certainly doesn’t make it any easier to lose her. She will be missed. In a few days, I know her life will be beautifully celebrated by the loving family she created. How fitting that this will happen during Thanksgiving Week, when we count our blessings.  She was a blessing to many.

She is in now in God’s care. She is reunited in Heaven with her parents and  Jim, her husband of 50 years. She is free of Alzheimer’s.  Those are joyous thoughts.

I also have faith that her giggle is fully restored, and that makes me smile.