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, October 22, 2007

Coloring

Gayle was down for the weekend again. When he left Sunday with Misty Cathy seemed confused for a hour or so. Within 10 minutes after he left she found the dog bowl we were using to feed Misty, it is ours, but I think she thought he forgot it here. Here is what happened next: I heard the front door open & looked out the window. She walked out into the middle of our driveway and looked towards the road. She just stood there looking back & forth while holding the dish in one hand and gesturing her other hand... it seemed to be saying: What do I do, how do I get this bowl to Gayle? Which way did he go? Then she started walking towards their old house again next door, I called to Brad because I thought she might be going up there. But she stopped about halfway and looked down at the rocks in the driveway. She then walked back to our garage and got a screwdriver, carried the bowl & the screwdriver back to that spot in the driveway, used the screwdriver to pick the rock out, & then stood there looking at it. Looked around a little bit more and came back to the garage and put the screwdriver away. Brad went out to talk to her and tried to take the bowl. She took it back and set it on the bench outside our front door. It is still sitting on the bench tonight... possibly waiting for Gayle?? I am not exactly sure what she was thinking/feeling? And the rock has me confused? But after that she seemed to fall back into her routine again.

Today & tomorrow I am working... I asked Ryan if they could come down here and sit with her. He came down this morning and picked her up. We decided since I am working 2 days she would spend the night down there. Brad & I talked to them both today and she seems restless there. Gretchen said she kept going outside and she was worried she might walk away. I thought maybe she was looking for Ryan or Gayle? I told her about what Aunt Charlene had said. She had told me that Cathy's Grandma (Charlene's Mom) liked to color with the kids, so I thought maybe they could try that. Gretchen called back later and said it was working! She was sitting still and seemed calm while she colored with Laney. Coloring... Sigh.... relief.

Tonight we are missing her... feeling guilty... Brad was making spaghetti & I walked over and said, "I miss her, I am worried about her, I feel guilty that we are moving her around and confusing her..." He said, "I know, me too." It was like our child was spending the night at a friends house... I hope her night is going well.

1 comment:

RHandly said...

Beth

We received your card today and what a great way to share with family and friends. Reading through all your stories and events is truly a touching and eye opening experience! We have wanted to call you several times but knew you had your hands full and never knew when Brad was working or sleeping so didn't want to intrude...now that I have your cell # I will give you a call. I'm not great at keeping up with emails and all that with being on the computer all day for work...but will definately be on this site. You have a heart of gold and are mighter than I...makes me wish I were closer to help you with all that you are tackling. Tell Cathy, Brad and the kids high and I will give you a call later in the week.

Love
BABE & RAYNA