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 16, 2009

Wishing she were here...

Today I found myself wishing for Grandma Cathy again... one of those moments that I know that if she were here she would be 'here for us'.

Our 9 year old son is home sick today & we are 'stuck' in our camper (our current home while we are waiting to move into our permanent home in 5 weeks) trying to not spread germs around. Hoping he doesn't have H1N1... pushing fluids & giving him Tylenol. We just moved here last weekend, as we are buying the house Brad grew up in - the house Cathy & Gayle built and lived in until they moved to Iowa. I can't leave the kiddos & run to the store for Tylenol and 7up. I can't call Brad because he is over at our old house packing up (where I should be, but I am home with a sick kiddo). And if Cathy were here I wouldn't even have to ask, she would have already been at my door with a bag full of things we would need. She was like that, always taking care of the ones she loved. I miss that unconditional Love. I am sad that my kids will not enjoy that from her. I am sad I didn't appreciate it when we had it, until it was too late...

As I sat here this afternoon feeling sad thinking of Cathy my phone rang... it was Barb H., Cathy's friend since elementary school, she was asking if we needed anything! It was as if Cathy heard my thoughts & sent Barb for her.

As I stroked my sons hair back tonight I thought of all the times Cathy helped me care for him as a baby. How she helped me through long nights of ear infections & took turns walking the floor with me the night before his surgery.

And then I went back to the memory of the day she died, how I stroked her hair back, the way she did for our son Chase. The way I saw her stroke Brad's hair when he would sit on her couch after a long days work. I even remember seeing her stroke Ryan's hair the same way.

I stroked her hair that day once she settled into the chair, I sat next to her wiping the sweat from her forehead & stroking her hair back. Whispering in her ear... I remember everything that happened between Cathy & I that day. Every look she gave me. Everything I said to her. Everything around us was a blur... people were in & out of the room. It was like a scene from a movie when the main subject is on normal speed but the objects around them are a blur. I did for her what she would have done for her boys, her grandchildren...

I miss that unconditional love our children would have gotten from her today. That Grandma that was not scared of germs, that would have walked right in the door & sat down next to her grandson and stroked his hair & told him that she Loved him.

My Mom would do the same thing... she is just 4 hours away... I am so Thankful we are now closer to her. That our children still have a Grandma. But today we were here in Black River Falls... Cathy's home & she is not here.
Tonight I find myself wishing for Cathy again... one of those moments that I know that if she were here she would be 'here for us'!