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, February 19, 2008

Highlights from the past week

Hello Everyone! Sorry it has been awhile since I have posted... I wanted to Highlight a few of the things that have happened over the past week.

CARE CONFERENCE
Brad & I went up for the 14 day care conference on the 14th along with Gayle. We met with the staff & department heads to discuss how things are going with Cathy. And the news is "GOOD"!!!!! She is settling in well, getting along great with the staff, & seems quite content. We also found out that the 'trial' period is over and she is now officially a resident! All & all it was a good meeting and we were very pleased.

GAYLES FIRST VISIT
Brad & I visited Cathy after lunch on the 14th and Brad asked his Mom, "Mom, would you like Dad to come visit and bring Misty with him?" And she shook her head yes. So... that night the 4 of us visited... and it went surprisingly well! Yes, I was a bit nervous (more like alot nervous!) about going so soon... but Brad was confident it would go well... & he was right, it went well! (I normally hate it when Brad is right & I am wrong... but in this case I was thrilled!) When we got there she was already in bed which may have helped. And when we left she gave Gayle a kiss!! HALLELUJAH!!!!!

TOBY'S VISIT
Toby was able to make it up for a long weekend! He had a busy weekend spending time with his Mom, driving down to the Dells to fix the Build-A-Bear that she LOVES (we found out that the build-a-bears voicebox lasts for around 1000 pushes... and Cathy's lasted about 2 months... obviously she pushes it alot!! She LOVES it!), visiting with family and friends, & spending more time with his Mom. I was so excited for Cathy! I knew she was looking forward to seeing Toby!!

RYAN'S MOVE
Ryan & his family moved up to Wisconsin this past Friday. Brad & I actually passed them with their moving van on the Interstate... we were on our way home to Iowa & they were heading to their new home up north. We are happy that she is going to have one of her boys close.

SPEECH
We are noticing that she is speaking less... talking quieter... having a harder time getting words out... mumbling a bit. Quite simply... it is sad.

OVERALL
It is comforting knowing that things are going well! She is doing better than expected transitioning into the NH... but as we had hoped. We are so RELIEVED that Gayle is able to visit now!!! We miss seeing her everyday, being around her, her warm hugs, her sweet kisses on the cheek, her pats on the knee, & many more things... But, we can't just pick up our lives & head North, even though we both want to. It is more than difficult to see how fast she is changing and watch the Cathy we Love slowly fade away...

We are Thankful again for all her Wonderful friends & family who are visiting daily! I will continue to post what I know from a distance...

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