The Vanishing

The strangest thing about the death of my mother is the vanishing.  That a person can be on this earth one minute and gone the next, seems like a cruel magic trick that I’m still trying to figure out.  As I reflect on her disappearance, I realize the slight of hand happened years ago and the vanishing was just the grand finale.

Dementia is a terminal brain disease.

I knew this but I didn’t know it.  Terminal is just a word I used to add weight and truth to mom’s disease because you’d be surprised at how many people don’t know this.  So I said it to help raise awareness and educate, and to help me say out loud in a euphemistic way — my mother is dying.

I thought I was prepared, even ready for my mother’s death.  But it was the concept of her death I was ready for, not the real thing.  In the beginning, “has dementia, will die” was loud and clear in my subconscious, then towards the end my concept was that death would be a kindness that couldn’t come soon enough.

But vanishing from the face of the earth?

It may have helped if I had replaced the word die with vanish and had been saying things like “my mother is vanishing from dementia,” or “my mother is receiving hospice care and could vanish in three to six months.”

A friend warned me about this.  She said “you may think you’re ready, but when your mom dies it will feel like you’ve been hit by a truck.”   I believed her, but “hit by a truck” was another abstract concept.  Another friend said the death of a parent is a “ground-shifting sadness.”  This rings true as I try to find my footing on this new and  shaky ground.

My mother vanished last month.

I’m sad, but I’ll be okay —  I’m just a little surprised at the size of the truck.

~  Joanne

An Invitation To Walk, Raise Money, and Help End Alzheimer’s

Racing Alzheimer’s has a Team and needs Team Members!
Save the date and join me for the
2013 Shenandoah Valley Walk to End Alzheimer’s!

 

Event Details

The Alzheimer’s Association Walk to End Alzheimer’s® is the nation’s largest event to raise awareness and funds for Alzheimer’s care, support and research.

WHEN:  Saturday, September 28th (Rain or Shine)
Check-in 8:30 am     |     Program 9:30 am     |     Walk 10:00 am

WHERE:  The Willows at Meadow Branch
1881 Harvest Drive    |    Winchester, VA  22601

WHAT:  Choose between a 1 mile or a 3 mile walk option.  Start line will be at the facility and walking will be mainly on walking paths and sidewalks.  Walk routes to be determined.

HOW:  Click Here, go to Register, then Join A Team, find Racing Alzheimer’s.

This is the first time I’ve created a team like this and I’m very excited about it!  I have a very achievable goal of recruiting 10 walkers and raising $1,000.  This is a great way to raise funds and awareness while having fun.  And if you have personal experience with dementia, this is an opportunity to join together and DO SOMETHING!

Please let me know if you have any trouble registering or have questions about this Event.

I hope you can join us!

     ~  Joanne

Mom’s Remembrance

An image I'll treasure, taken four days before she left.

It’s been a very long two weeks, but I am back home in Virginia and wanted to post something for friends and family since my mother’s passing on July 6th.

The service, mom’s “Celebration of Life” was a beautiful tribute to a life well lived.  There were flowers and hymns, prayers and poems, a slideshow, scripture, and two solos with guitar by my mom’s Musical Therapist who had been singing for her since April.

We took care to make mom’s service and reception her own.  We had blue linens, bouquets, and big blue hydrangea’s to honor her favorite color.  We had The Carpenters, Barbara Streisand, and Neil Diamond to honor her favorite songs.  We also included “The Animal Prayer” by Albert Schweitzer in her service to honor her love of animals.

I must say — mom’s service was beautiful.

It should also be noted that the people in my parent’s church came together as a supportive and hard working community to help make my mother’s service and reception successful and memorable — a huge thank you goes out to Living Spirit United Methodist Church.

With my brother and sister’s blessing, I gave the “Family Remembrance” and said out loud who my mother was, which I felt was important.  But even as I say this, I’m sure I didn’t capture all that she was.  And if you’re reading this and are anticipating the loss of a loved one, might I suggest you start thinking about what you want to say now and begin writing some things down?   Because it’s hard enough to write about a loved one who’s gone, but even harder when in the chaotic midst of funeral planning.

So I cheated.  I took something I wrote on my blog last year titled “Mom: A Brief Biography” and I tweaked it a bit.  It was a relief having something in hand, but if I could re-wind the clock, I would have written a remembrance for my mom a year ago when there was more time to get it right.  But hindsight is like that, almost everything is like that.  We live, we learn.

But still, I don’t think I could have ever gotten it “right.”  I mean, what words would I use to convey all that my mother was?  How would I have described her?  I couldn’t, I didn’t, so this will have to do.

******************************

A REMEMBRANCE     ~   by Joanne Leonardis, Ruth’s daughter

My mother, Ruth Joanne Hall was born 1937 in Wadena, Minnesota.  She was the oldest of three children and in many ways had an idyllic childhood — she was a Girl Scout, had a paper route, played the piano, sang in the church choir and yes, she even wore bobby socks and poodle skirts.

She graduated from high school in 1955, then moved to Minneapolis to attend the Minnesota School of Business and receive her secretarial degree.  She learned shorthand, dictation and other “cutting edge” office duties and then worked at IBM for five years where she was like a “Mad Men” secretary with cat-eye glasses.

Mom met my father during this time, they married in 1960 and my sister Marilyn soon came along in 1962.  I followed in less than a year, and my brother John came three years later.  Mom stayed home with her children, but her secretary training would prove beneficial as she ran our household like a business and balanced the checkbook down to the penny every month.

Our childhood was rich with activities like traveling throughout the country, camping, fishing, family bike rides, sledding and drive-in movies.

Later, with the three of us grown and mostly out of the house, mom went back to work. She had about 20 years or so to rediscover herself, travel, and spend time with her grandchildren before her Alzheimer’s diagnosis came around 2005 when she was just 68.

The long and slow descent into the fog of Alzheimer’s has been her journey for the last 8 or 9 years now.  And we have all said a thousand good-byes during this time.  In the beginning we said good-bye to simple remembering, like what we talked about yesterday, or how to make a meal.  Then we said good-bye to things like getting a call just to say hello, birthday cards, and even knowing our names. Finally, we said good-bye to most everything that resembled our mom.

But this is not what we’ll remember.  Instead of focusing on what Alzheimer’s took, we choose to remember what mom kept.

Mom kept her joy.  She never once complained even though she knew what was happening to her.  In the very beginning of her disease, I tentatively asked her – “do you know that you have what grandma had?” And she replied, “yes, but I can’t do anything about it, so I may as well be happy.”

Mom kept her friendliness.  Strangers were friends she hadn’t met yet.  This could be a bit awkward at times, but really, it was a great lesson – we are all here together, we are all friends.

Mom kept her sense of humor.  She was playful and silly right up to the end.

Mom kept her love and tenderness.  I can’t tell you how many people have shared that mom was “the best hugger.”  That’s just what she did.  She wasn’t afraid to reach out and touch people.  My mother wasn’t afraid to love.

Mom lost just about everything, but she kept her heart.  She may not have known your name, but her heart knew you, and her heart loved you.

Mom showed us that in the end, all that’s left, all that matters — is love.

Some things mom loved are:

Fishing

Softball

Texas Blue Bonnets

Raisins

Garage Sales

Animals

The Mormon Tabernacle Choir

Recycling

Picking raspberries off the vine

Parades

The color blue

Bacon

Hanging clothes on the line

Walking to run her errands

The Carpenters

Clouds in the sky

Minnehaha Falls

Friends

Family

And YOU

If you are so moved, memorials may be made to:

Alzheimer’s Research Center
640 Jackson Street
St. Paul, MN  55101


CLICK HERE to learn more about the Alzheimer’s Research Center.

***  Also, if you are so inclined to share this post, I ask that you copy the link that’s in your browser and paste it in the email you are sending out so the recipient will be directed to this website.   Thank you.   ~  Joanne

Mom Update: Her Final Goodbye

My mother’s long goodbye came to an end on Saturday, July 6th at 12:26pm.

Thank you for all your love and support.

RUTH JOANNE NELSON
September 11th, 1937 — July 6th, 2013

**********

 A Celebration of Life
Thursday July 11th at 11:00 am
Living Spirit United Methodist Church
4501 Bloomington Ave. So.
Minneapolis, MN  55407

Mom Update: June 2013

Grandma seemed to understand that these two young people were "somebody special." Jake (22) and Jordan (20) enjoyed visiting with their grandmother. (How about those shorts?! Yeah, they're gone now.)

What I remember the most from my recent visit with my mother is how she looked.  She has a look to her that’s difficult to describe, but which I’ll never forget.  It’s a shuffling, stooped look combined with an ashen complexion and empty eyes that I can best describe in one word — GONE.

Does that sound awful?  I don’t mean it to.  Is there a better word to describe my mother?  I’m sure there is, but I like this word right now.  Gone baby, gone.

Tying shoes, zipping up, getting dressed, gone.  Bathing, toileting, hygiene, gone.  Conversation, comprehension, self-determination, gone.

I suppose I could get sentimental and tell you how she’s here too.  How she always says my name at some point during my week long visits.  How she isn’t looking at me when she says it, but releases it like a butterfly to the wind for me to gently catch.  And that she probably doesn’t know why she says it, but she does — because something remembers, and that means part of her is still here.

Hugging, smiling, humor, here.  Walking, talking, helping, here. Laughing, loving, saying my name, here.

She’s here and she’s gone all at the same time, and I see one or the other depending on the moment, my perspective, and even my mood.   She can be hard to find, and sometimes seeing my mother as gone is easier than finding her here.

* * * * * * * * * * *

Here’s a quick report from my mom’s hospice nurse yesterday:

They are still trying to move mom’s sleep cycle.  She was previously sleeping from 7pm to about 3am, which is bad enough, but now she sleeps from 6pm to 1 to 3am, which isn’t good.  Mom needs more help eating, and she looks like she’s lost more weight.  (Weigh-in next week.) She is still walking, but is not as steady on her feet.  These are the things we are watching — sleep, eating, weight, walking.

The good news is that mom appears comfortable and at ease.  There is no distress in her face or demeanor and she is still able to smile and be happy.  This is amazing to me and such a testament to the power of a positive spirit.

I like to think my mom's heart knew her grandchildren. She was clearly happy to see them, she was a little emotional, and she had a lot of hugs to give.

Out of respect for my mother, I will never post pictures of the “gone” woman that I described.  She looks pretty good in her pictures, which is one of the reasons Alzheimer’s can be so invisible.

Mom Update: May 2013

Mom listening to a Music Therapist sing some of her favorite songs. This was a beautiful and very emotional moment.

Many of you know my mom has advanced dementia, had a major seizure in April, and has been receiving hospice care ever since.   Hospice has been trying to reduce her restlessness and bring more sleep and calm into mom’s life.  It’s been a trying time during this hit or miss process of adjusting meds, and if you saw Dear Assisted Living Home, you’ll know it’s also been a frustrating time.  That’s why three weeks ago, I decided to move my mom in with me where I could take care of her one on one along with Hospice services here.

And then I changed my mind.  It was a decision based purely on emotion.   A reaction to distress — my mom’s and my own.

When our daughter was five years old, she had something stuck in her throat that allowed her to breathe and talk but caused her to panic and pace the house in obvious distress.  We tried everything to get it out including calling the doctor who said if she can breathe and talk, she’s probably fine.  Her panicked pacing went on for about an hour, when she jumped up on our bed all flushed and bothered, stood there with arms outstretched and fists clenched, and yelled in desperation, “SOMEBODY DO SOMETHING!!!”  I brought her to the ER, and four hours later, with my daughter asleep in my arms, the doctor said she probably got a toothbrush bristle stuck in her throat which seemed to have worked it’s way out.

“Somebody do something!” is said to this day in our home and it always makes us smile.  But my point is, this is how I felt about my mom.  She’s progressing quickly, she’s agitated, her caregivers are agitated and I jumped on the bed and yelled “SOMEBODY DO SOMETHING!!!”  Mom needs her family, her daughter, we need to bring her home with us!  We need to do something!

Since I left Minneapolis a month ago, mom has become completely incontinent of bowel and bladder.  She is no longer able to feed herself, and is having more difficulty swallowing.  Walking is the only activity mom can do on her own, but she’s losing this too and a wheelchair is in her near future.

The window to move mom came and went, and I missed it.  Her dementia moved so slow the first eight years or so that I wasn’t prepared for her recent rapid decline.  Mom needs total care now and to remain in familiar surroundings — she won’t be going anywhere.  But we’ll be going to see her.  My two children and I are traveling to MN soon because Jake will be working there this summer and we wanted to make a road trip out of it.

I adore this picture of mom and my nephew, mom's grandson -- Javier. Javie visited from Texas in April and mom was smitten with him from the start, apparently thinking he was a love interest.

Graduation Celebration Procrastination

We just returned from a week long trip to California to attend our son’s college graduation and participate in “the great dorm clean-up.”  Don’t misunderstand, it was a joyous occasion — but one that included the ever present sense of a mountain to climb against a ticking clock.

The week, from my point of view.

Thursday
Arrive!  Meet Jake!  Learn he needs to be vacated by Monday at 8am!
Visit dorm, resist heart attack, dismiss any notion this will be a vacation.
Feel sense of panic and an unseen freight train quickly approaching.
Try to help.
Hear Jake say he has it “under control” and will “take care of it later.”
Go to hotel, fall into bed, dream of son being buried alive in dirty clothes.

Friday
Go to Bookstore.  Give college more money.
Meet Jake with thoughts of garbage bags and haz-mat suits swirling in my head.
Try to help.
Advised by son with four years of high-priced problem solving skills that dorm room can wait.
Tour Pasadena, hike a canyon, eat a two-pound burrito.
Pick up Jake’s newly tuned-up mountain bike from bike shop.
Pick-up large bike box to ship other (road) bike which still needs to be dismantled and packed.
(The road bike will fly home with us, the mountain bike will fly home later with Jake.)
Tick tock.

Jordan and her calm brother on our Pasadena hike.

Saturday
Allowed to help in dorm room, make small dent.
Attend graduation luncheon while Jake’s $900 mountain bike is stolen from his vacant suite.
Jake looks for bike and makes unproductive police report.
Take advantage of Jake’s unfortunate distraction, make BIG dent.
Wonder where I went wrong as I’m engulfed in piles of dirty clothes and 4 months of grime.
Commiserate with other speechless parents drowning in their own son’s sea of procrastination.
Realize my son is “normal,” stop blaming myself, join “parents of messy sons club.”
Do five loads of laundry.  Husband dismantles and packs road bike. Dorm room is half done.
Dinner out with Jake’s friends and their families.  Reservations for 48!
Tick-tock.

Sunday
Greet father-in-law and brother-in-law who arrive from NY.
Meet Jake for brunch in Dining Hall.  Give college more money.
Resist asking about dorm room progress.
Commencement at 1:30.
Ugly cry.
Photos.
Good-byes.
Family dinner.
Increase son’s net worth.
Goodnight and good luck to Jake who will spend his last night packing.
Go to hotel, fall into bed.
Receive text, Jake requests assistance between 7:30 – 8:00 in the morning.
Realize the job requires zero emotion and reckless abandon.  I cannot go.

Monday
Husband goes to dorm, I go to Starbucks.  I enjoy my first ever Caramel Dolce Latte with my daughter, we leisurely sit by the pool, and I realize:
1.  It’s my first relaxing moment since we arrived on Thursday.
2.  I am to blame for my stress.  I mismanaged the blurry line between helping and letting go.
3.  I have serious issues with letting go.
4.  I finally understand the obsession with Starbucks.

Jake packed up and moved out on time, and my husband returned unscathed.  We drove to San Diego to visit family and celebrate two more college graduations with a homemade Italian feast.  We toured San Diego, sat on the beach, ate the best Mexican food EVER, and traveled 14 hours to arrive home at midnight on Wednesday.

To close, my son may be messy, and he certainly procrastinates, but I couldn’t be prouder of him.  He focused where it counted — on his coursework.  Jake went to a demanding school, he worked harder than he’s ever worked, and in four years he walked out with a degree in physics.  For that, among other things, I am very proud and grateful.

  CONGRATULATIONS JACOB!!!

Jacob Leonardis ~ Harvey Mudd College ~ Physics

Dear Assisted Living Home

Mom picking rocks on Leech Lake, MN 2007.

When you told me the other day how my mom is showing signs of agitation, that she resists re-direction, gets into everything, and that she sometimes makes fists and gives dirty looks, I was really thinking —

And your point is . . . ?

Mom has a brain disease.  She has advanced dementia, Alzheimer’s or something that is suffocating her brain and making her behave erratically in the process.   Mood swings, agitation, and a departure from reality are expected.

Please be patient and kind with her.

Instead of complaining, tell me how you are accommodating my mother’s advancing disease.  Because when you tell me she’s making a fist — I hear that she’s frustrated, and that YOU need to slow down and be patient with her.

Please meet her where she’s at.

When you told me that she broke the night light in her room, I was thinking that it shouldn’t have been there and that she’s lucky she didn’t cut herself.  I remember going into homes that weren’t childproof with my very young children and feeling like I was surrounded by time bombs.  The glass vase on the coffee table?  BOOM!  The beautiful floor lamp?  CRASH!   You should know by now that my mother is like a 5’3″ “toddler” who gets into things.

Please safeguard your valuables and childproof your surroundings.

When you complain about my mom, it feels like daycare complaining that my toddler broke a crayon or ripped a page in a coloring book.  Which probably explains the puzzled look on my face and why I don’t apologize.

Please stop complaining!

The toddler can’t help it and neither can my mom.

Signed,

Daughter Bear

Mom & Dad, Brother John, and my foursome in 2009.