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 2 - Safety

Saturday & Sunday were Awful! They have honestly become a complete blurr to me. What I mostly remember is that she started getting angry with Brad. Yelling at home the way she yells at Gayle. He said to me, "If she is yelling at me like this, and I have shown her nothing but Love, I am now worried that you & the kids could be next." FINALLY... he is starting to see the big changes. (Saturday night was Mom's night out for me... the first one in MONTHS! Just before I left Brad gave me a hug & said, "I'm Sorry." I know he is hurting & probably still upset with me... but just those 2 words helped me see that he is beginning to see what I see.)

On Sunday morning when Brad got up he found her outside our front door! Stuck outside in the -10 degree weather! We have no idea how long she had been outside!! She was standing at our north door, pushing the buttons on our automatic lock... it was going beep beep beep beep, she was saying, "Come Alive, On Fire!" over and over again, & shaking the door knob. When just around the corner... only 4 feet away was our main door that was unlocked! She couldn't even think to try it. She was not wearing gloves or a hat, only a coat. Her fingers & ears were freezing!

Rhonda came over Sunday morning while I was at Sunday School... when she first came Cathy was doing ok. But Brad said she quickly began to get upset again & Rhonda witnessed her anger also. We had friends over and they were helping make breakfast in the kitchen... that seems to be what might have set it off.

When I got home we were standing around talking and I looked over to see her with a lighter... she was holding it to one of our battery operated tealight candles... trying to light it!!!!! It was melted! I grabbed it from her and said, "No!" She just started laughing & tried to take it back and do it again. She had absolutely no clue what was wrong.

So last night I thought, I will sleep on the couch so I hear her get up. But luckily Brad only went to work from 4-11pm so he was back home again. We tied some bells to the child gate in the kitchen... thinking that would wake us up if she got up. NOPE! When I got up with the kids this morning the gate was open, her foot prints were out in the snow from the north door to the garbage & back, & she was sitting in the living room in the dark with 2 cups of coffee (she seems to usually have at least 2-3 cups around the house plus a few waters). The TV was off & when I tried to turn it on it was messed up again. URGH. Gayle has spent hours on the phone with his Cable provider fixing his remote over the past year.

So... tonight I will be on the couch. If I even sleep.

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