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)

Thursday, January 17, 2008

An "Off" day!

Today was... an "Off" day! I felt like I had a shadow following me everywhere today! When I was working at the computer she sat in the dining room and watched me, sometimes standing behind me reading random words. At one point she walked past me and lightly hit me on the arm.? (I don't think she likes it when I am on the computer) When I worked on laundry she stood behind me. When I folded clothes she kept pacing from the living room to where I was folding... just watching. When I sorted papers she stood & watched me and kept picking them up and shuffling them around... ARGH! This morning I woke up to our old coffee pot (that was in storage in the basement) in the kitchen ready to brew coffee... while our new coffee pot was unplugged and sitting at the end of the counter. It was VERY cold here in Iowa last night & I had brought our outside dog into the garage into his kennel... when I went out to let him out a 7am she had fed him in his kennel with one of my new pampered chef bowls, which he had since chewed up. Even when I went to the bathroom I had to lock the door, she would come and try to open the door. She also had packed up everything & put it by the front door again. Everytime I sat my cell phone down she would take off with it and plug it in.

Tonight... at 6 she headed downstairs and changed into her Pajamas. She then came up and got Misty and pulled her by the collar downstairs. When I went and checked on her she was in the bedroom downstairs going to bed????!!!! She hasn't slept in our downstairs bedroom since August! I knocked on the door (she had locked it) & she opened it. I asked her, "Cathy, Why are you sleeping down here?" (I knew she couldn't answer... but I just needed to say it) "Come sleep upstairs in your room." She shook her head no while mumbling, "actually, on fire." All day she had been saying, "Wisconsin". I asked her if she wanted to go to Wisconsin and she shook her head yes.
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Yesterday I talked to Dr. Loepfe's nurse about Cathy's meds. (Gayle filled her Seroquel and for half of the month it cost $250!) We really weren't sure that the Seroquel had made that much of a difference, we hadn't noticed any obvious changes with it. The Trazadone increase seemed to have helped the most. So... last night we decreased the Seroquel from 4 pills to 3, maybe that is what threw her off today. Hmmm...

So... sorry for the venting post. I guess I feel a little Bonkers today! Hopefully tomorrow will be a better day.

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