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

Bird Watching and Dementia: A Beautiful Idea

Teaching a child not to step on a caterpillar is as valuable to the child as it is to the caterpillar.  ~ Bradley Millar

My mother loves all animals.  As I watched my mother and father take in strays, rescue and care for injured or abandoned wildlife, and stop to assist various creatures off the roads, I saw kindness and compassion — this might be their greatest gift to me.

We once herded a mother duck and her ducklings, (to include stopping traffic),  three blocks to the nearby creek after she apparently lost her way.

Mom loves birds too, Robins especially.  There was a Robin who built a nest over the downspout on the house every year, and during the sweltering months of summer, mom would set out water for that “poor panting momma.”

Now my children are animal lovers.  They were raised to watch bugs and spiders rather than kill them, and to know they are the stewards of all creatures — especially when help is needed.

When I saw this video, I immediately thought of my mom and how much she would enjoy this bird program for people with dementia.

There’s a large bird feeder right outside the picture window where Mom spends a lot of her time.  Here she is filling the feeder with bird seed.

Finally, I couldn’t write about my mother’s love of animals and birds without including this heart-warming video of people coming together to make sure a mother duck and her ducklings made it safely to water.  Given the opportunity, my mother would no doubt be one of these helpers.

“Until one has loved an animal, a part of one’s soul remains unawakened.”  ~  Anatole France

Namaste,

Joanne

It Is What It Is: Pat Summitt – Accepting Reality, Finding Peace.

My brother-in-law shared this inspirational video of Pat Summitt, who recently retired as Head Coach of the Tennessee Lady Vols, due to her diagnosis of early-onset Alzheimer’s disease.  Now I’m not a basketball fan, and I don’t know much about Pat Summit other than what I’ve just learned, but I like her.

As you’ll see in the video, anyone who has the words “It Is What It Is” hung over their fireplace must be a straightforward, non-complaining, acceptor of reality kind of person.

I want to be like that.  I strive to be like that.

“It Is What It Is” is a common saying with a big message.  Simply put, I think it means “I accept reality.”  Accepting reality can mean anything from accepting the traffic jam you’re in to accepting a job lay-off, or even accepting an Alzheimer’s diagnosis like Pat Summitt.  But I want to take it a step further and say “It Is What It Is” can also mean agreeing with reality.  Agreeing with and embracing reality, and even loving reality — or “Loving What Is” as Byron Katie, one of my favorite authors writes about when she says: “I am a lover of what is, not because I’m a spiritual person, but because it hurts when I argue with reality.”

The reality is life is hard, things don’t always go our way, and people get sick and die every day.   Arguing with reality adds more pain to an already difficult circumstance.  Accepting, embracing, and even loving reality leads to a path of less suffering and more peace.

It is what it is.

I have an art print that says this on my wall at home.  It spoke to me while I was shopping a couple of months ago, I impulsively bought it, and it’s been tucked away and not hung up ever since.   After learning about Pat Summitt, her brave acceptance of her Alzheimer’s disease, and that she lives by these words, I finally hung it up today.  It will be my daily reminder to accept and LOVE WHAT IS — because what else is there?

Calgary Couple Rises Above Early-Onset Dementia

I stumbled across this short video of a dear couple in Canada who are living with early-onset dementia.  The husband was diagnosed in 2008, and his wife is his caregiver.  The wife’s gentle spirit is so beautiful.  And the two of them together make me feel like I’m witnessing love of the highest order.

Mom Update: February 2013

Mom and the beloved resident cat Kylee.

There are no mistakes, no coincidences.  All events are blessings, given to us to learn from.  ~   Elisabeth Kubler-Ross

“I think your mom has about a year,” is all I remember from my first visit with mom last week.  I didn’t get a chance to ask questions until our Care Meeting on Wednesday, but by then, I could see why my mom’s Caregiver would say this.

The first thing I noticed is mom’s diminished level of engagement.  She’s lost and far away, and has an emptiness to her eyes that I’ve not seen before.   And for the first time since mom’s diagnosis, I’ve thought to myself, “my mom is brain dead.”

You can take that literally, because Alzheimer’s is another word for a dying brain.

The last time I visited in September, mom could be directed to do things on her own.  Now she needs help with everything — eating, dressing, undressing, escorting to the bathroom, hygiene, toileting.  Everything.

Mom is going down fast.  That’s what they tell me, and that’s what I see.

Mom’s Caregiver thinks she has something other than or in addition to Alzheimer’s disease.  After spending time with other residents in mom’s Home with Alzheimer’s, I can see what she means.  While one woman colors in a coloring book, mom doesn’t understand that she needs to pick up the crayon to color.  Another 94-year-old woman with advanced Alzheimer’s uses complete sentences, and is highly engaged.  Not true for mom.

I recently shared my New Year Resolutions for my mom which is more of a list of things to do before it’s too late.  But it’s already too late for some things on the list like traveling to her home town which would be too much.   But maybe when the weather is warmer, we can do the easy things like walk barefoot along a lake shore or watch clouds overhead.

Mom has rounded a corner and I believe I have too. 

I’m less frantic, more realistic, and more at peace.  If it’s true that mom has a year, then there’s nothing left to do now but enjoy her — and make sure she’s loved and gets good care.

Mom & Dad at her Home ~ I love moments like these.

Gratitude: A Prayer Meditation

I’m going home for a week on Saturday, and I’m preparing for my trip by selecting two pair of shoes that will go with six different outfits and plow through slush and snow.

I’m also mentally preparing for the changes in my mom that are sure to be evident, and for my ability to join her in “Alzheimer’s World” where nothing makes sense, but where I need to go to truly be with her.

I’m grateful for this time, and on Valentine’s Day, wanted to share a gratitude poem that I love.

Gratitude:  A Prayer Meditation

Source of All Blessings
I am Grateful
for My life
for the Blessings
of
My breath
the beating of My heart

Source of All Blessings
I am Grateful
for Beloved Ones who
share life with me
those in our world beside me
and those in worlds beyond my knowing

Source of All Blessings
I am Grateful
to share life with our Human Family
Jewish, Christian, Muslem, Buddhist, Hindu, Sikh
May we walk gently upon our Earth

Source of All Blessings
I am Grateful
to be one with All Creation
the flight of birdwings
the swirling of blueshoals oceans deep
the runnings of wilderness creatures
the sway of forests green

Source of All Blessing
I am Grateful
to be part of the spiraling
of all space and time
beyond my imagination
Yes and again Yes I am grateful
to always be here
where else could I go?
For all this and more
I am Grateful

                                         ~   Rabbi Warren Stone

Minneapolis Bound: February 2013

Next Saturday I fly from the cold state of Virginia to the freezing cold state of Minnesota.  With one friend going to Puerto Rico this month and another on a Caribbean Cruise, I can’t help but wonder if I have it backwards by heading north.  But this is what it’s come to — my airline ticket money is saved for home, and heading south while tempting, just wouldn’t feel right.

There isn’t a big To-Do list this time, my plan is to mostly chill and spend time with my family.

But if you read “Racing Alzheimer’s: Mom’s New Year Resolutions” recently, you know that there is a list — it’s just not my list.  I hope to knock some things off mom’s list by doing what we can that doesn’t require warmer weather.  I know require is a relative term, but this Minnesota girl has become a cold weather wuss since leaving over 20 years ago.  I mean, there’s really no reason to be outside when it’s below 40 degrees.

A warm coat, chap-stick, and mom’s list — let’s do this.

Hopefully I’ll be able to smell spring in the air when I return.

Bon Voyage!

~  Joanne

FUN FACT: It's so cold in Minneapolis, there's a Skyway System of enclosed pedestrian footbridges that connect buildings in Downtown Minneapolis enabling people to walk in a climate-controlled environment. The extensive Skyway system is renowned as the largest continuous system in the world. http://en.wikipedia.org/wiki/Minneapolis_Skyway_System