Day 8 - Halos, Sundowning, and A Giving Tree

Have I mentioned my husband, Peter, whose halo is glowing more brightly each and every day?  Here he is building a wheelchair ramp for Myrtle to make things easier on us.  Our front door entry is very hard to navigate with a wheelchair.
Myrtle usually yells at me, "Am I on some boardwalk amusement ride?!"
"Sorry, mom, it's a big step, mom, what can I say?"

That's a kind and loving man, alright.    Lucky me :c)

The new ramp leads to my front door, which is now a revolving door for people of all kinds - home care aids, social workers, nurses, chaplains, and hospice workers.  This is a world of people with whom I have never before had an opportunity to interact.  Their small kindnesses for my mother and the depth of understanding they have all revealed in their words and deeds ... it is profoundly moving.

These good souls who walk in and out of my days with Myrtle - they bring with them a wisdom and a preference for simple comforts and gentle words.  I am always in a race against the clock, striving for efficient use of each hour in the day; it is the way I've always been.  But these sensible souls simply do not operate this way.  The language of hospice workers and nurses is not the same as my own.  It is a language inflected with tranquility.   I have much to learn from them.

It feels a little lonely when they leave for the next customer/patient. I wonder how Myrtle experiences these comings and goings.  She receives every visitor with sheer delight.  She needs no detailed explanations for their presence.  She states their names clearly, after being introduced, and she pats the chair next to hers, eager for the company....for a little 'sit-down'.

And sitting down with Myrt is very pleasant. Until the sun goes down. Then everything changes.

Sundowning is a terribly sad symptom of dementia.  Later in the day, cognitive function declines steeply.  In Myrtle's case, she takes up residence in the late 1930's and early 1940's.  When Myrtle was young, her mother died and her father disappeared for a period of time after.  She relives this as though it is happening in the present.  Each night she weeps asking if I think her mother is in heaven and if she will be able to find her father.  All I can do is hold her and assure her that her mom is watching over her and that her father is well.  These nightly episodes don't seem to be stored anywhere; they are utterly gone the next day, which I count as no small mercy.

Yet, there is a joyful side of not remembering certain things, I learned.   Each day I walk mom up my driveway in her wheelchair.  On our property, we have a sprinkling of exquisite dogwood trees, which are now in bloom.  White and pink.  Everyday she looks at these lovely trees and she gasps in delight, "Oh, look, look!  Those beautiful trees, do you see them?  Oooohhhhh, what a perfect tree, just look at that pink!"

She is eternally stunned by the beauty of these trees experiencing them anew each day.  Imagine that.  Being able to look upon the beauty of nature over and over and over again yet each time see it  as though you are seeing it for the first time.  Wow.  That's a different kind of Giving Tree, I guess.  One from which Myrtle takes the same gift every day.

Day 5 -- Clogged Toilets, Denture Battles and a Deck of Cards

Raising four kids equips a person for going toe-to-toe with the fiercely irrational toddler and  I thought this skill would be completely transferable to coping with the untenable stubbornness of a dementia patient.  Not so.

The toddler usually has a method to his madness and in some fundamental way, the toddler is right to try to win a battle of wills and to try to do things that he is not yet capable of doing.  This is how he learns.  This is how he eventually takes possession of himself.   Moms and dads know this and give the toddler a little slack.

With dementia, the panorama of skills lost and skills intact is both uneven and unstable, so that one cannot afford to guess.  When she says she can stand up....maybe she can, maybe she can't.   When she acts as though she has heard me....maybe she has, maybe she has not.  Bathroom trips are arduous for both of us.  It involves heavy lifting and she is at her physical limits throughout.   These take 20-30 minutes each time.   I repeat things many times.  I point to trash cans and point to hygiene products and explain what our septic tank cannot handle.   I do not take my eyes off her.  Yet, somehow, someway something got into that ceramic bowl which did not belong there.  My long suffering husband is looking for a plumber on a Sunday as I type this.

On the other hand, she told me curtly when she moved in 5 days ago that she did NOT need the Depends. Well, she has been using Depends for over a year.  So I ignored her brusque broadcast that first day.  I ignored it the second day. But, doggonit she was absolutely right.   By her third day here, I stopped the use of Depends and she has not had any accidents whatsoever....nor even come close.   She was right and I am chastened.  It is so important to listen to her, I learned.   Dementia is a full frontal assault on her dignity and if that can be preserved for a while longer, it is a good good thing.  

When it comes to her full dentures, I have to argue with her every night.  She does not want to take them out.  A problem with her lower gums makes it imperative that they come out nightly for cleansing and soaking but she is intransigent on this point.  Dentures cannot be removed from the unwilling mouth, I learned.  She only agrees to remove them when I promise her that I will take mine out, too.   I do not wear dentures, but she doesn't seem to grasp this.  My teenage sons laugh out loud at this nightly ritual.

PLAYING  CARDS  WITH  JAMES

Back to the odd mix of skills lost/skills intact -- my 14 year old found a deck of cards and asked Myrtle to pay a game of War.  "Don't worry mom, I'll let Grandmom win," he said to me, magnanimously.   Not only did Myrtle stay fully engaged through the entire game, she caught him making a mistake twice and she completely demolished him. Not kidding.  She can still play cards but after the card game, when I walked her wheelchair up the hill of my long driveway (in NJ), she pointed into the woods at a dense grouping of pine trees and oddly enough she "saw" the house she grew up in.   "Oh, there's my old home on Umbria Street," she reports, sharply.  (She grew up in the Manayunk section of Philadelphia, which is many miles away.)

"That's wonderful, mom!"  I replied, peeking under her sun hat to see her face.
Her eyes were closed but a smile remained there....

Day 3 - Who's Bed Is This?

The daily landscape with Myrtle is jagged.  Hour by hour there are dicey variations in her perception of reality.  My responses have to be fluid and in sync with her mood or she gets agitated or worse, weepy.  The rough patches in conversation last night went something like this:

Myrt:  (in her most demanding impatient voice) Why am I  here?  Where is this?  Who's bed is this?

Me:  That's your bed mom and you are in my home in NJ.

Myrt:  Oh, no, no, no, this place isn't safe.  You should be afraid.  There is a large monster outside.        Take me home.  This is not my bed!  shouting now

Me:   I'm gonna take care of you mom.  This is your home now.

Myrt:   My father is waiting for me at my apartment.  He's there now.  I have to go now.  She tries to get up, not remembering that she cannot walk and seems stunned that she's unable to stand up.

Me:   After giving her meds to calm her down and settling her into bed: Mom, I hope you sleep tight, I love you.

Myrt:   I just had a baby, a beautiful baby boy,  you should see all the hair he has.

We took a walk in the rain this morning and it was rather fun for us both.  She laughed at the drizzle on her sneakers.   That was a highlight.

I ordered a garment rack so I'd have a place to hang her clothes in this dining-room-turned-bedroom. Today, I unboxed it on the floor next to her, to assemble it nearby, while she watched cartoons. She looked at the many labeled parts laid out on the floor and shook her head, stating flatly:  "You need a man for that.  You'll never put that thing together."   This was all I needed to hear.   I was gonna assemble that dang garment rack if it was the last thing I did this day.   And I did assemble it.   When a few parts fell off when I moved it, she laughed gleefully.

Her clothes are hanging neatly on this lopsided rack and Peter rolled his eyes when he saw it.  Why didn't you wait till I got home?  Gah!

Move-In Day

I am one of five.  For the past few weeks all of us have been scrambling to find a place for mom.  A nice place. A place she can afford.  This we could not find.

She is in hospice.  Non-ambulatory and eternally confused and isolated by her progressing dementia, she is in a special category.  One that drives up the cost of care dramatically.

So.  I emptied my dining room.  It is now Myrtle's bedroom and although it has unhinged my home life, I have this unique privilege ... I get to be her mom.   It won't be forever, I know.   I am very thankful to have an understanding husband and two very cool teenage sons.

That is my brother Brian in the corner.  Myrt likes the view.  She saw a deer today!

She loves the dog, Holly.   That dog stayed close to Myrtle all day, bless her heart.

Myrtle asked many times today if she could return to the planet Earth.  "I'd like to go back there, I think."   She mumbled it one more time as I was tucking her in, and I thought about the last words in The Great Gatsby:    It eluded us then, but that’s no matter—tomorrow we will run faster, stretch out our arms farther. . . . And then one fine morning—
So we beat on, boats against the current, borne back ceaselessly into the past.

I guess we all exhaust ourselves pursuing a goal that moves ever farther away.  The future.  We row forward toward a future but the current draws us backward to our past.  Strangely, I feel like I have a foot in both worlds.

That was day 1.