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, January 22, 2008

Part 1 - The Breaking Point

Well... Friday was the day... the day that I finally decided I had reached my point of "exhaustion, frustration, no return." Imagine this: the game on Price is Right where the mountain guy is climbing up the mountain while they play a yodeling song in the background. Each time he passes a number it is like moments that have happened to us since Thanksgiving... and then... he reaches the top... & you know he is about to fall off the cliff. That is where I was Thursday & Friday.

After picking the kids up from School Friday we came home. Mia was dancing to her "Bella Dancerella" DVD and waving her Princess wand around and Cathy started yelling at her, "Actually, On Fire!" She yelled it twice while pointing her hand at her... her voice was so full of anger & almost hate (like when she has been yelling at Gayle in the past). And that was it. I snapped (for the first time throughout her whole illness with her), like a momma bear protecting her cub. I went right over & got in her face. I pointed my finger right at her face and I honestly don't remember exactly what I said other than, "This is my house & I am not going to let you treat my child that way!" I knew deep down inside that Cathy would never yell at Mia that way in her right mind & I knew that she wasn't understanding a bloody thing I was yelling at her... but I needed to do it, I needed to let it out. (Yes, for those of you that know me, I yelled like my Father)

As I was yelling I saw the look on her face & quickly turned what I was saying into, "I Love You" I pointed from me to her over & over again, repeating those same 3 words. And then I added the "But" if you are going to get angry like this... I can't allow you to stay with us. I have to put my kids first! There... I said it. The kids were just staring at me... Chase said, "Mom?" I was shaking & I realized that I had reached the point of no return. The point I didn't think I would reach this soon. UFFDA!

So... Luckily Gayle was on his way to our house & I knew he would be here any minute. I went into our bathroom & called my Sister-In-Law/Friend since we were in Pre-School... I told her what had happened, I cried, & I told her I knew that I was at that point. She understood.

Gayle & I sat up that night and discussed it. I told him I was disappointed in myself. I truly thought I could do this longer. But... I just can't. For my kids, for myself, & for so many reasons. My good intentions of helping... were at their wits end. He completely understood. He has been there. He knew that I would tell him when I reached the same point also. And I had.

But... Brad is a different story. His reaction to me was not the same. I won't go into details on here. Afterall, it is his Mom. I have no idea how I would feel if this was my Mom dying of this awful disease.

I talked to Toby & he planned to have a family meeting - which was over the phone talking to everyone one at a time. He understood... He doesn't want to see her in the nursing home either, but we all know it is the next step. And he doesn't want her here if things are not safe here. He is supportive & easy to talk to as usual. Thank You Toby!

No comments: