Our Families Journey Caring for a Mom with FTLD-MND

It is important to know as you read this journal that this was Cathy's life post diagnosis...

To know Cathy Truly you must know that she was: a Wife, Mother of 3 boys, Grandmother of 9, Sister, Niece, Aunt, Daughter, and Friend.

Our families journey began with Cathy's diagnosis the week of Thanksgiving 2006, Cathy was 52. Her original diagnosis was Pick's Disease/FTD. Looking back her symptoms most likely began 3-5 years before diagnosis. Most of the Doctors have told us that from onset of symptoms to death... the average timeframe is 4-7 years. (sigh) In the end her brain autopsy showed Frontotemporal Lobar Degeneration with Motor Neuron Disease FTLD-MND. (Basically... Frontal Lobe Dementia with Lou Gehrig's Disease)

Sunday, February 15, 2009

Toby's Speech

Good afternoon. On behalf of the family I would like to take just a couple of minutes to speak to you about what type of person my mom was. It was this Friday when a lifelong friend called and said “man your mom was tough…I mean, what other mom liked snakes, loved to coon hunt, and could pull-start a three wheeler?” For me that is where my grief began the transition to a celebration of life. For the first time in a while I began to think more about the good times than worry about what was ahead.
There were some key traits that defined Mom. First of all she really was tough… and fun. Conversations with friends and family reminded me of stories that reinforced how strong she really was. Like the time she was coon hunting on Hawk island. After miles of walking and a fun-filled night of coon hunting with her my dad it was time for the return trip across the river in the pickup. What they didn’t know is that the dam had opened a gate causing the current to strengthen and the truck became stuck in the middle of the river. To make matters worse the water was now rising and was coming in the doors of the truck. With temperatures well below freezing, they knew they had to get to shore quickly so they waded to shore with Cathy piggy back on Gayle. After a second trip back to the truck to retrieve the dog who was not about to swim when it could be carried, dad went for a tow truck. A while later he showed up with Tubby Kreuger. Tubby looked at the truck, half submerged in the middle of the river, and then at my mom and dad shivering on the shore and said “Well I ain’t going out there… and she ain’t going out there so I guess it is you.” And off Dad waded into the icy water with tow cable in hand. They arrived home half frozen and in need of a hot bath. Now some of you may say “what is the big deal? Sure she may have gotten a little bit wet and cold but what makes that so special?” Well the part that I left out was that she was 8 months pregnant at the time! Today people might say that kind behavior was reckless but I say it was that same toughness that helped turn her boys into men.
Another story I remember is when we one about a simple trip to the grocery store. Mom was driving and on the return trip we always wet up the hill by the old bottling plant and some how the kids in the back seat always encouraged her to go a little faster than she should up the double humps on the hill. Well this time dad was with and riding in the passenger seat of the rusted out Toyota. I think she was a little reluctant to go as fast as usual so us kids in the back seat gave her a little extra encouragement by yelling “hit the gas mom!”. That in combination of the “don’t you dare look” from dad must have been enough to cause her to push her foot down a harder than usual and we hit that hill like she was driving a dune buggy in the Mojave Desert. On the first hump the kids screamed for joy causing the gas pedal to stay to the floor. On the second hump I’m pretty sure we caught air…maybe a little too much air…and the back part of the passenger seat my dad was glued to fell through the floorboards of the car. Pure joy for us kids but I’m note sure dad said a word the whole way home.
I will also never forget the time we got a wood splitter and she through a fit. “Why do we need one of those when I can split wood just as fast at that thing?” I think dad was a little perplexed but also amused so he proposed a “split off” with the log splitter and she graciously accepted the challenge. When the contest ended, the wood on the ground indicated it was a draw, but victory was in her eyes because while she was red in the face and dripping with sweat…she did not lose to a machine. The other reason I think mom won is because I remember splitting a whole lot of wood by hand after that day…wishing we had a wood splitter.
There was also the time she picked the kids up from the movie in our 56 Chevy. We begged her to “peal rubber” and she did only to see the flashing lights of the patrol car in the rear view mirror. Imagine the surprise of the officer to find a mom with 3 kids in the back seat. She simple rolled down the window and with an angelic grin said “sorry officer…the throttle stuck”. The officer simply said “tone it down Cathy”.
Yes she could be wild at times but as I remember the crazy things mom would do I also remember her most redeeming qualities…her kindness and generosity. Anyone who knew her could tell you a story of how she helped them in some way. I witnessed it countless times and she never expected anything in return. If someone was in distress she was there. If someone needed something that she could provide, it was theirs.
Like many of us, she was an imperfect person in an imperfect world. She was a Wife, Mother, Grandmother, Daughter, Aunt, Sister, and dear friend. She will live in the memories of all that met her and be forever immortalized by the lives of her grand children and future generations.
And finally, on behalf of the family, I would like to thank some of the special people that have shared the last couple years with us. The wonderful, caring staff at Pine View, the many friends and family that came to visit and care for her, and all those who have offered their prayers and condolences. One good thing that has come from this tragedy is the reaffirmation of the goodness in people. Thank you very much and god bless.

5 comments:

DeeDee said...

What a wonderful speech, wonderfully written, and very moving. Thanks for posting it, and praying for you guys. It means alot to read what you are going through. DeeDee in Texas

Paige Handly said...

Great speech dad. I miss Grandma to. may she rest in peace.

Paige Handly said...

Great speech dad. I miss Grandma to. may she rest in peace.

Anonymous said...

Great speech. I miss grandma to. May she rest in peace.

Beth said...

It was a Wonderful Speech, made us all Smile! Love You Paige!!