Post 7 - I want "J"


My mom and grandma are both affected with this gene (more on my Nanny in a later post) and by some ironic cruelty, they began their descent the same time.   They were alone together.  Loved ones afflicted by FTD can see, listen, and feel the free world but cannot express their thoughts and feelings freely.  Family members and friends can visit, but communication will continue to decrease over time.  Summer and Fall of 2008 Mom and Nanny could still go out on their own and by the same time the next year, someone needed to be by their side to help with the simple task of walking.  Driving had long been out of the question.   If you are the afflicted one, family eventually starts to act as though you are not around, talking about things they normally would not talk about in front of you.

Family and friends still visit but they begin to just sit or not pay direct attention to you. If there is communication, it is a one-sided conversation because within a few years you will lose all ability to speak and communicate.  You lose concept of time; there is no difference between a day and month anymore.  Your days begin to repeat themselves; sitting, sleeping, and watching TV.  If you’re lucky, you can do puzzles or cook until that goes too.  Soon your family completes all tasks for you like: when you go to the restroom, eat, sleep, drink, what you wear, and when bath.  Your family misses you more and more everyday even though you might be five feet away.  When the ability to speak is completely gone, your husband or daughter  may hang on to things like their out of date cell phone in fear of losing that last voicemail of you on it that they listen to daily just to hear your voice.
Over the course of that first year – Dec 2007 to Dec 2008 Mom (and Nanny ) went from  a woman who had problems with a few words but still an all-star nurse and parent to 5 to a person who had to leave the job she loved, forgot how to spell words like “love” and “cereal” (even when she was looking at the word), lost her driver’s license, and unable to cook for herself without supervision.  Two years later, at the end of 2009, she will require someone there daily  to show her how to bath, wash her hair, and prepare food for her.  Child gates will be put up to block off stairs, locks will be changed to keep her from escaping (literally) and wandering the neighborhood.  Toaster ovens and microwaves unplugged, oven knobs removed to prevent fires as she randomly walks the house and turns them on.  Then the Depends  and incontinence will come…lack of depth perception and the fear of walking on dark mats, escalators, icy steps… she will cling to my dad like she never has before; a child in a crowded place, uncertain of her surroundings.  Swallowing will become difficult and the family will learn all about “ThickIt” and Ensure, pureeing food, handicapping the bathroom…the list goes on.

Over the next few posts, we will tell you a few stories – and some quite funny—of “instances” or snap shots of a day in the life with my mom over the years.  We’ve had some good laughs and cries and now that we have given you the background in more variations than you probably cared to hear, we want to share with you some samples of the day to day and take you through the years. 
Thanks again for listening….

(Begin Post 7 :  Fall 2008 – “I want ‘J’  )

“I want J”
Diagnosis or no diagnosis, one thing is always true – tomorrow will come whether you want it to or not.

Once mom was officially diagnosed that August, it took away any hope of her returning to work in the Fall.  As a nurse, she was now a liability if anything happened.  My mom was given a few months of medical leave and then would have to retire. 
I recall trying to tell her to see this as an early retirement – an opportunity to learn those hobbies she always meant to try, to focus on her for once instead of others.  But my mom knew the real reason she wasn’t working.

I’ll never forget coming home from work in late August (I was still living at home for another month or two before I had to go back to Baltimore) and finding her sitting on the corner of the couch, head propped up with the back of her left hand as she leaned onto the arm rest, feet curled up beside her, and just looking down at the carpet, her eyes blank.

“What’s wrong Mom?”
She shrugged her right shoulder and shook her head.  It was obvious she was doing everything she could to hold back the tears.
“Mom, what’s wrong?”  I ask again.  “What did you do today?”
“Nothing, I cant. [pause as she tries to find the words] I nothing…[pause] to do.”
And the tears came for both of us as I sat down next to her….

Our family had to regroup. 

First, even though there was nothing a medical doctor could do in terms of treatment (there was absolutely nothing to even slow the disease down) at the present moment, mom will eventually progress and we needed a doctor to monitor her and help our family cope with the changes.  Eventually, mom’s physical health will begin to deteriorate as well, so we needed a doctor.  Dr. “diagnosis Mary through a 6 sentence letter” had moved out of state to another hospital (See POST 5: The Beginning—Part  III of III- Confirmation to learn all about that fiasco). 

Second, and as that particular afternoon in August clearly demonstrated, Mom was still lucid and aware of what was happening– her mental health was the number one priority.  As my uncle said in a conversation to me, “she needs to still get up every morning and have a purpose in life.  Her needs will change every day and everyone needs to be fluid and ready to adjust.  Anything that can keep her feeling independent without putting her or others in harm’s way should be considered.”

Third, routine.  As my mom progressed, routine will become more and more important and so the sooner we got her into one, the better it will be in the long run.

Adam (my brother) and I ended up joining the same online support group for FTD/PPA caregivers/family.  Joining this group was the best decision I made.  I remember my first email to the group – introducing myself and giving a brief background on my mom and her current state.  I asked if they had any advice on what my mom could do to stay busy. Her children were all now young adults and out of the house.  She could no longer work.  What can she do all day long?  My inbox was instantly flooded with emails full of advice and comfort.

Legal and financial advice: “Get a will, living will, power of attorney, medical power of attorney, etc. in order ASAP.  Do not wait and your mom may still be able to present her wishes before the disease takes that ability away from her.”

Advice on day to day activities:  “Puzzles, putting photo albums together, gardening, house chores as long as she is physically able, sewing, walking/running- any kind of physical activity, volunteer work in the community or at the church, visits from family and friends…speech therapy (more on this later)…” the list went on and I was so grateful. 

I even received advice for the caretakers:  “Take care of yourself.  The caregiving to PPA/dementia is a marathon.”

I will forever be grateful for what this group prepared me for.

And so, on that particular afternoon, and after a very long hug, I got pen and paper and my mom and I put together a list.  It was not easy.  By now she was already struggling to understand what I was saying and having even more troubles formulating a response.
“Let’s list all the things you like to do and then every night we’ll go over that list and thats what you’ll work on the next day.”


To be honest, I knew what I wanted to put on the list, but I wanted to make sure she understood what we were doing, and more importantly, I wanted her to feel part of this, that what was decided was her decision.  My uncle’s words echoed in my mind again Let her be as independent as she is able to be.

“Ok, so we have laundry, dishes, mowing the lawn, putting photo albums together, going to the grocery store…what else?” I ask
“Um…”  Mom’s voice was tentative, each word chosen carefully.
“Maybe…sewing?  Or…Qu—quilting?”
“That’s a great idea.  You can finish the tree skirt you had started for Adam and then make one for Tina as a wedding present.”
She even smiled. 

And so for the next week, things seemed to improve.  Dad and I would still let her make dinner and just discreetly supervise – careful to make her feel that she was cable of doing it on her own.  Dad would wake Mom up before he went to work and make sure she got herself breakfast and reminded her of the list on the kitchen counter we had put together the night before.  I started to come home to mom in the dining room instead of on the couch, working on the sewing machine and in good spirits.  It may sound trivial, but a scene like this made my throat tighten with emotion. 

Then one afternoon, I walk in and she is clearly stuck on a thought.  She tries to tell me about her day but nothing is coming out.

Finally she says, “I need J.”  You need what??
“Hm,” I say.  “What is J?”
“J.  I need J”  I can see this going to be a productive conversation.
“Maybe spell it for me.”  I hand her paper and a pen.

Mom picks up the pen.  The determination in her eyes is fierce.  She absolutely knows what she wants, the word just isn’t coming. I’m also relieved to see that throughout this exercise she is genuinely in good spirits.  I note this and make sure to keep the tone positive and to not get frustrated.  I’ve noticed this is surprisingly easier than I expected it to be.  And for Dad too – we have commented on how our fuse is infinite when it comes to Mom.  We know it’s not her that is getting caught up but the disease. 

I looked down and watch mom spell out what she wants.  She holds it up.


“J!” She exclaims.

Oh boy.

I slap my hands together and take a breath, “OK! Let’s play charades!  Now, what is a different word to describe what you need?”

She thinks for a moment.  

“Go. Store.  J”
“Ok so you need to get something at the store that starts with a J.”
“Grocery store? Do we need Jelly?”

She shakes her head.
 “What the heck else starts with a J??”  I laugh. 
“No, no.  J. 

With her index finger, she repeatedly makes a “J” in the air and looks at me with absolute conviction.  It’s as if she’s saying “Duh! J. Why are you not getting it?”

“J, right. Pretty sure we got that much established,” I say with a smile.  “Can you show me something in the house that will help?  Show me what you need.”

She taps her index finger repeatedly onto the paper with the J.  

"No, show me something else, something in the house-- an object."

A light bulb goes off.  Mom disappears down the hall and comes back holding a small square.  She sets it down in front of me, grinning from ear to ear and says, “J!!!!” as she pats the square.

I look down and now a light bulb goes off in my head.  It’s a square piece of fabric.

“Ohhhhhhhh….you need to go to Joann Fabrics and get more fabric for the quilts!  You’re out of cloth! You need to go to “J”—to Joann Fabrics!”

“Yes! Yes!”  

You would think I had just solved the million dollar puzzle, we were that excited.

"Ok, let’s get shoes on you, and we’ll go.”

And off to Joann Fabrics we went. 

Christina's Bridal Shower 2008 - Christina with Tree skirt Mom made her

If you noticed in that little tale, mom said “yes” when I asked if what needed was at the grocery store.  That’s the tricky part of PPA.  Yes doesn’t always mean yes, and no doesn’t always mean no.  So when asking someone a question, you can’t close in on  it quite yet.  You need to stay on your heels and be ready to change direction at any moment.  At this point, anyone seeing mom on the street would not think anything wrong.  And though her ability to speak for more than a few sentences was lost, if asked the right question, she could still answer simple questions, and say it with conviction.  But if you asked the wrong question, or phrased it in a way she did not understand, or did not use enough visuals, her answer would still be with conviction, just maybe not the answer you wanted—even if you had asked her if pigs fly, her answer could be with complete confidence whether she said “yes” or “no.”
Christina and Mom with the tree skirt

But today was a success.  Even PPA/FTD can’t take that away.  We went to Joann Fabrics and got more than enough material for mom to finish Adam and Christina’s tree skirts.  Mom gave Christina the tree skirt as a shower gift the following month.

A few months later, on Christmas day, mom gave everyone their “special” gift last, as she always did.  This year, Dad had to help her pick most of them out.  When she handed me mine, it was a tree skirt.  
Mom, Roth (Christina's husband), and Dad (Dan)

Mom and I (Betsy) Christmas 2008

She had made one for me too and kept it a surprise.

That was Mom for you.  Always giving, always thinking of others, even when she couldn’t get anything out except “J.”

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