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)

Tuesday, February 5, 2013

4 years today

We Love You Mom We Miss You Grandma Wishing Heaven had visiting hours today...

Thursday, June 10, 2010


On Memorial day weekend our Peonies bloomed... BEAUTIFUL! And they have a VERY Special meaning to us... because they were Peonies that Cathy planted. 8 months after Cathy passed away we (Brad & I) bought the home that Brad grew up in... that Cathy & Gayle built in 1976 when Brad was 1. Words cannot express how special it is to us... living in the home that Cathy Loved... we feel close to her here & that is comforting to us.

Life continues on... time passes... but the LOVE never fades!! Today Brad & I are struggling with some potentially bad news & I am wishing Cathy was here to comfort Brad. I can tell you that yesterday I felt her presence & I know she is watching over us & I DO BELIEVE IN MIRACLES!!!

Sharing some photos of Cathy's Peonies with you. Chase took 2 out to Grandma last weekend & we noticed a special visitor moved the pennies into the shape of a cross. The kids take a penny & leave a penny for Grandma each time we visit. (A tradition we learned from Aunt Sherry... I still need to look at the history behind this) The were so Amazed this Spring when the snow melted that some of their pennies were still there!! It is something... some connection they can have with Grandma.

Monday, March 8, 2010

One Year - Balloon Release

Gayle bought a huge helium balloon that said "Love" & brought over a permanent marker. We wrote "I Love Yous" & signed our names on the balloon. And then on the afternoon of February 5th, the 1 year anniversary of Cathy's passing, we met at the cemetery & released the balloon.

We all stood there & watched it as it floated away up into the sky... up to the heavens. (Amazingly even in the cold Wisconsin weather it was still able to fly away)

Brad had been there earlier with a rose. And Ryan & his daughter brought some out as well.

We watched as our 2 kiddos & Ryan's daughter explored through the cemetery in their snow boots... children are so innocent & their coping skills are so sweet sometimes. As we were driving home Mia said to me, "Mom, wouldn't it be awesome if we had a big swing & we could just keep swinging until we reached high enough to say Hi to Grandma & maybe even give her a hug?!" And Chase said, "Mom, do you think the balloon has reached Grandma yet? I bet she really likes it." It was then that I realized that our children truly believed that balloon was reaching Grandma in Heaven. *sigh* I just LOVE being a Mom!!

I thought of these things that Cathy missed this past year:
*The birth of another beautiful grandson, Ryan's 3rd child.
*Brad & I buying and moving into his childhood home. The home that Cathy & Gayle built when Brad was 1 and raised their kiddos in for many years before moving to Iowa.
*Watching 3 of her 9 Grandchildren go to school here in her hometown... Cathy had always hoped her 3 boys would come back here. And now 2/3 are here!
*School concerts, sporting events, dance recitals, and activities with her Grand kids.
*Laughing with her many AMAZING Friends.
*Watching Aunt Cherie rollerskate for the 1st time in many years, at the same rink that now 4 generations of Cathy's family have skated at.
*The little things like me calling her for a recipe, getting mail with grandkids drawings inside, planting her garden, camping at the lake, walking Misty (her dog) around the land that she loved, cutting up apples for Misty to snack on, etc...

We find comfort in the Happy memories. We are able to look back now & smile. And I find myself looking up & smiling as well.

We also hung this frame in our living room, I Love what it says, "Those who touch our Lives, Live in our Hearts Forever"

Thursday, February 4, 2010

One Year...

Tonight our kids gave Brad his Birthday cards & on the back of Brad's card Chase drew this:

Grandma Cathy waving to Daddy from Heaven.

I cannot find the words to fully explain the feeling that overwhelmed me when I saw it... that feeling that tugs at your heart/soul.

Tears in all of our eyes.

Tomorrow may be harder than I had thought...