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, December 10, 2007

Decisions

Well... Cathy & I made it to LaCrosse and back today... 8 hours on the road. On the way through Minnesota I was surfing for a radio channel... Cathy does not like Country... but she started jammin to Rock-n-Roll. She was bopping her head & waving her arms to "Black Betty" & "Sweet Child of Mine".

We met up with Gayle at the Clinic. Cathy seemed really comfortable in the Doctor's Office today. I was very impressed with the Specialist she saw today! He was very patient with her, tried his best to communicate with her and get correct answers, & treated her with respect. He also was very knowledgeable & went through her choices of treatment. Now... it's decision time. Tentatively we have an appointment scheduled for next Monday & the following Wednesday. If we choose this option we will have her problem "fixed" before the new year! The other option, which if it would have been a year ago I think would have been the best choice... but now with her dementia, maybe not... would have to be scheduled in January. Toby is willing to take time off work to come down & take care of her if we choose option #2 since it will involve a hospital stay & recovery time. - Tomorrow I am going to put a call in to her Geriatric Specialist to get his opinion & also talk to a few people who have been through something similar. - Toby & I were talking tonight... we wish we knew exactly how she felt, we wish she would have put down her feelings before we got to this point of "poor communication." I have asked her a few different ways tonight... & each answer is different.

*Note to all healthy people reading this: PLEASE legally put down your wishes for your family... just in case!!!

On the ride home tonight she was very emotional. (No anger lately... HOORAY!) She started repeating "36 years" and crying... then it was "Misty" and crying. This lasted for about a half an hour... 1 Kleenex box later she seemed to be settled down. I kept reaching over and holding her hand, she would squeeze my hand & pat it. But when I would ask what was wrong all she could do was keep repeating the same words. Communication is getting so much harder. I don't think I realized how much harder until at the Dr. today. Whenever he would ask her to do something she would repeat him instead of doing it... I tried to help, but she would just repeat me & giggle.

So next week may be full of more road trips again... but it will be worth it if it means she is feeling better... I just hope we make the right decision. I am actually Thankful that the weight of that does not fall completely on me. Toby's medical background helps immensely! Ultimately... it is up to Gayle & the boys.



I took these pictures of the bluffs in LaCrosse along the Mississippi River today. (I know... I shouldn't drive & take pictures) See the icicles from the Springs! I Love this drive! It was so hard to drive the 4 hours there & not stay and enjoy Wisconsin for a while!

1 comment:

Anonymous said...

Beth, praying for you and the right decisions to be made. Happy Holidays! Hugs from Cedar Falls, Alicia