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)

Monday, February 2, 2009

Cold...

Cathy woke up with a cold early today. She is full of phlegm and unable to cough it up. I was surprised because last evening Gayle & I took Misty (her dog) in to see her during the SuperBowl and she seemed to be doing better. They had tried cutting milk products from her diet & I was hopeful that was causing all the extra phlegm. But now even breathing is difficult for her & exhausting... Chase & I went in to visit her at noon, leaving Mia in the car with my Grandma (Brad had called to heads me up that she was not doing well today at all... and maybe not to take the kids in... but Chase wanted to see her). She was sitting in the TV room when we walked in & looked at us with a half grin. She didn't smile again while we were there... except for when Chase said in her ear, "This is our secret Grandma... but you are the Best Grandma I've ever had!" Her smile came slowly & she raised her chin up... as she smiled a thick bubble formed between her lips...

When she started to gag on her phlegm she would sit upright and make sounds... I would put my hand on her back. She would then lean back and grab for my hand. Just looking at me with a blank stare. As if piercing a thought into my soul... I can't tell you what she is thinking/feeling... I wish I could. It is such a helpless feeling.

Just before we left Chase & I held her hands to say a short prayer with her out loud. As we got up to leave she followed us & wanted to go with us. She walked slowly & seemed so tired today. She was unable to push the door open so she leaned her back against it and it only opened a slight bit... but enough to set off the alarm... the aide came and took her to the dinner table & we walked down the long hall... that we have walked so many times before... but this time with even heavier hearts. For the first time ever since we moved her in I did not want to leave. I just wanted to sit there and hold her hand. Or know that someone was going to be with her and hold her hand.

See note from Barb today below... It sounds like they have started her on Abx and changed a few meds to hopefully help with the phlegm... they are also suctioning her & have been since Wednesday.

1 comment:

Kimberly said...

Aww..Bless Chase's heart..what a sweet thing for him to say and have Cathy show some reaction in such a sweet way. You're all in our thoughts!