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)

Friday, October 19, 2007

Thank Goodness for Family!

It is amazing how she can remember things in the past. Tonight Cathy, Lisa, Silissa, & I were sitting around the dining room table. Cathy was eating a pizza I had just made for her and we were just enjoying her company. We told a few stories about when the boys were little & then I told a story Brad had once told me... I can't say the whole story on here... but let me just say it involves bunkbeds next to his parents room & a knocking sound on the wall... Cathy spit her pizza & pop across the table (almost a whole piece of pizza) & burst out laughing! She laughed so hard with a huge smile on her face... we were all laughing hysterically!!

I had volunteered to work today... Ryan & Gretchen had planned on watching Cathy but Ryan couldn't due to his job. So luckily Aunt Lisa & Silissa were up here and they spent the day with Cathy & Mia. I don't know who was harder to watch... Cathy or Mia! Lisa said Mia talked non stop the entire day! Thanks Aunt Lisa & Silissa for giving up your "baby" time to help us out!! Thank Goodness for Family!

I don't think I will be volunteering to help out at work for now... I wish I could because they are SO short staffed... but it is hard for me to juggle kids, work, & Cathy when Brad is out of town. I need a routine for us all & working throws it off... I forget things... real important things...

So... I am going to start working on a routine or daily schedule. This could be interesting...

1 comment:

Lisa Handly-Stewart said...

I want to thank Beth and Brad for allowing us to stay this week, its not like they don't have a full plate all ready but they always open the door for my family. It was a nice day spent with Cathy, the many times I heard her laugh-I am very thankful she still has her laugh it is very contagious. I do admit when she woke Silissa up with house on fire and Silissa came running into my room and I said that is one of her words Silissa was in shock. Then there are the times like now when there are tears running down my face thinking of all my memories of my favorite SIL who was also my partner in crime during my teenage summers in Wisconsin. I worry about my brother he seems lost and I so wish I could fix it for him. Cathy is always on fast forward be it a movie or life. When she does something she tries to hurry through it. It is very hard to watch a movie on fast forward (as Cathy does)I can not imagine what she is thinking or feeling. I will try to come to Iowa and help as I can (since I have a new grandbaby there)to give a break and to spend as much time as I can while the laughter is still here.
Love Aunt Lisa