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)

Wednesday, March 26, 2008

Updates from Friends & Family

Ryan sent us some pictures from Easter. Ryan & Gretchen had taken their kiddos to see the Easter Bunny & they had the most adorable painted bunny faces! They went to visit Grandma on Saturday afterwards & took a cute bunny cake to her. I am attaching a picture they took of Cathy that day while they were visiting. In this first picture she has a 'blank' look, part of the FTD, but I thought it was cute because her bear is in her jacket!




JEAN on 3/25
*We've had some real positive days with Cathy... today we went down to the
main activity room, and had a nice manicure, pretty pink nails!!!! then we went to the ice cream sundae making in the main dining room...
Cathy is getting to be more sociable everyday, it is helping to
get her out of her little space... I enjoy being with her.... Red sweater is all cleaned and packed away for the summer!!!!
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JEAN on 3/23
*well today Cathy, Ryan and I had our first outing at Wal-Mart...and it
went great, for about a week now Cathy brings out this gift card she
has had in her pocket from Nina for Easter, I know Cathy has been
wanting to spend it!!! So today,after talking to Gayle, Ryan and the nurse on duty, they all said go for it.... Cathy really enjoyed it, she
might of put a few extra things in the cart,that we picked out and put
back, coffee,hair coloring etc. but over all it went very well. We picked out 4 new tops, (summer) the red sweater has to retire for the summer) 2 pairs of sweat pants, which she already is wearing. even got new undies!!!!!
It was kind of fun spending some one else's money.... just kidding,,,,
But needless to say, the gift card is spent!!!... I have taken it upon
myself to take home all her winter clothes, and will wash and return
them to Gayle to store for the summer... I also have her Packer
Jacket, you know how hard that was for me to pick up (VIKING FAN)..... But a good day, happy she was.... Hope everyone had a good Easter..... We did....
Love to All ;Jean
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BARB S on 3/23
*Happy Easter to all, Pete and I went to see your mom last night and took her some Easter treats. She took care of those in a hurry. Pete told her to tell me refill please and she did and just laughed. She was in a great mood. Ryan and family had taken her a bunny cake up earlier in the day and got some pictures. i stayed away from the home for about a week because we had been sick and didn't want to give her anything. Ryan told me your dad is sick now. Everyone is really getting hit with the stomach flu and the respiratory in this area. Hopefully your mom won't get it. Hope your families are staying healthy. Take care and love to you all! Barb
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JEAN on 3/22
*Cathy has had some real good days, I've been taking her outside weather permitting, and also we go down to the main dining room , yesterday we played
bingo, she won twice, she was one happy camper!!!!!She didn't want to leave when we were through,,, I got a copy of their activity calendar, and I will try and
do some of these things with her, she needs to be busy.....I'm hoping I can take her for a ride in the country soon, if family and everyone agrees that this is ok.... I
really don't see a problem... I try to stop at least twice aday... the nurses think she seems happier being a little bit busy... have a great day...Love to all. Jean

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