Battle Lost. War--Undecided

3 November 2013

Written by Christina 

~I initially wrote this after speaking with my grandfather and uncle, and they informed me that Nanny was not doing well that day. Later that evening we lost her. She left peacefully and with her passing comes the peace of knowing she is whole again.

This blog post is dedicated to our grandmother whose unparalleled patience, unending kindness and limitless love has shaped and guided us throughout the years. ~

Margaret Mary Flanagan (Marge/Nanny)

June 13^th, 1928  - November 3^rd, 2013 

Survived by her husband, sister, brother, son, daughter in law, son in law, 7 grandchildren and 5 great grandchildren. 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Battle Lost. War--Undecided

There is no fighting dementia, you can accept it, deny it, ignore it but once you get it. You lose. We just heard from our uncle and grandfather that our Nanny's health is failing. There is only so much that a person can take.

The challenge in this FTD (frontotemporal dementia) is that you just don't have to take it once. You have to take it over and over again.

Baba (Nanny’s grandmother)

Nan Marcin (Nanny’s mother)

Uncle Steve (Nanny’s younger brother)

Mom

Now, Nanny

Nanny and Grandpop were there for Nan Marcin and then again for Uncle Steve.

Grandpop, Uncle John, Aunt Debi, Dad and all of our generation has pulled together to support Nanny and Mom through their dementia.

My first memories of this ill-fated disease are with Mom's Uncle Steve. My last visit to Uncle Steve was etched in my ten year old mind. Dementia scared me then. I couldn't understand how someone could go from a person in pictures to what seemed like a living skeleton. Mom told us he could hear us but couldn't talk. He was so important to her. She used to tell us stories. After Uncle Steve passed I can remember thinking about how dementia ran in family and that I might get it.

As we grew up the dementia demon quieted down.

We lived a normal life full of soccer games, vacations and school. Dementia struck again as my father's mom Nana Hall aged. It seemed like normal aging. We lost her to a stroke in 2004 before the real signs of dementia set in.  I honestly thought we were in the clear for a while, losing people tears me apart and naive me thought I was safe.

2008 came with double diagnoses for Mom and Nanny.

2013 dementia took mom and she is whole again.

As the year comes to an end I don't know what to hope for. I understand that dementia will take Nanny's last breath; I also know that last breath will give her new life.

Dementia steals so much from each person it touches. It takes your imagined future and warps it. People you expected to stand next to you watch from across the room. Dementia takes what only death can give back. Each time that death gives life back to an affected person it stirs the reality that with our hereditary autosomal dominant gene that it will strike another that I love (Please see the first post for more details here).

This road that my brother, sisters and I walk is a sea of unknowns. Three of us have at least one child. Dementia is not stopping any of us from living our lives. It just pokes at us and reminds us that it may subside but unless the odds are in our favour we will, like Nanny and Grandpop, watch dementia steal more loved ones right before our eyes.

I do not know what my future holds. I do know that dementia will not take the memories of my grandmother's constant smile, cool, comforting hands (literally they were always cold but or unrelenting love for her family and faith. Nanny you will always be remembered in this way. 

If there is a silver lining to having a dominant, genetic form of this dementia, it is the Bluefield Project. 

They are a dedicated research team based out of UCSF, and their ability to support and educate about FTD is hope.  Their commitment is beginning to pay off, and clinical trials are on the horizon.  Please consider a donation and fight for a prevention of dementia.  Your donations go directly to research. 

FLASHBACK POST – Halloween, the early years.

(written through Betsy’s POV)

Tough guy, Henry

How my mom took five children trick or treating and kept track of us all – in the dark, running from house to house, high on sugar and adrenaline- amazes me to this day.

My mom would usually stay on the street and let us go up to the houses on our own.  I can still hear her voice, orchestrating our every move.  “Three houses.  After you get to the house with the red door, you come straight back and check in…”  We all take off…

“Adam! WALK, Do. Not. Run.”  Her command conjures imaginary strings that pull at the 10 year old boy and he comes to a fast halt followed by a slow, struggled walk – similar to a dog on leash that is desperate to take off again.   

“.... And say thank you!”

The streets, crowded with kids and adults, but it was always easy to find mom – She was infamous for adorning tacky Halloween attire.  Her trademark was the flashing pumpkins head band.  The small bright orange pumpkins, blinking in turn, contrasting with the blackness of the sky, and affixed to the headband by 4 inch antennas – giving the illusion that they were “floating” above her head was always easy to spot. 

One particular Halloween –  we were all toddlers to elementary school- it was exceptionally cold and snowy. 

My parents were considering not letting us trick or treat at all that year.  I cant even begin to imagine dealing with 5 small children after telling them they cant go trick or treating. 

Apparently, my mom could not either. 

So she ordered us all to go put on our snow suits, boots, gloves, hats, and scarves.  Meanwhile she went into the kitchen and met us back in the living room, holding 5 white garbage bags.  One for each child.  She painted 5 faces white and out the door we went (Dad stayed behind and gave out candy).   

A family of ghosts was born!

Mary Margaret saves the day again!

…

That was circa 1990...ish.

Twenty three years later, we are all grown up now.  Megan, Adam and Christina all took their 2 and 3 year olds out trick or treating this year.

I Facetimed with Tina right before she took Emma and Lily out. 

Emma (3 yrs old) was Bell from Beauty and the Beast and Lily (2 yrs old) was Izzy from Jack and the Pirates.

Even though they live in Arizona; Flagstaff, AZ is in the mountains and it’s already freezing there at night.  So both children were required to also wear turtle necks and long johns under their costume.  Tina was a bumble bee. She backs away from the camera so I can see her whole outfit.  She is wearing antennas with little yellow pom poms balls on the end.  My mind instantly flashes back to 20 years ago and her yellow pom poms are suddenly orange pumpkins.  

I smile to myself. Tina reminds me so much of Mom sometimes.  All of my siblings do.

“Ok, we gotta go.  Emmagene and Lily – say goodbye to Aunt Betsy.”

“Bye Aunt Betsy!!!”

Tina: “Say I love you”

“Love you!”  They squeak in their high pitched toddler voices as they rush to the door.   They are soooo excited, I can’t help but grin from ear to ear.  Christina ends the call and my screen goes blank.

It's the little things in life that make you laugh, smile and cry - sometimes all at once. 

Adam and Elly's son - Henry - 23 months - The Construction worker!

Cookie Monster is all smiles this year!  ...Megan and Chris's 2 yr old, Josh

Christina and Roth's girls - Lily and Emmagene (2 and 3) - aka "Izzy "and "Bell"

And finally.....our newest family member....

Margaret Flanagan Hall  ("Finn")- Born 10/22/2013 and named after my mom and Nanny:
(Mom- Mary Margaret Hall; Nanny: Margaret Mary Flanagan).  
Adam and Elly's little one slept through Halloween this year  :)