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)

Sunday, August 3, 2008

Church

So many changes have happened this past month... to be quite honest I haven't had the heart to post anything. I will try to post a few things about the past month when I get home later this week. For now I just wanted to share this with you all. This week the kids & I came over to stay. Gayle had to be out of town a few days for work & the county fair is in town. Cathy can see the fair from her window & we were all worried about how she would handle all the commotion going on outside. So between Jean, Barb S., the kids & I... we all did our best to help out this week... by taking her out for ice cream, walking her through the fairgrounds, taking her to church, or just outside for a walk. So far... things have gone much better than expected... all that worrying for nothing!! I think we all were a bit more concerned because a week ago she was more agitated... hit her nurse with her hairbrush! But... a few changes in her meds & she seems to be 'mellow' again. mostly.

Here is what I wanted to share:
Gayle & I took Cathy to Church this morning... not just the weekly service at the home... but actually out to her Church in the country. Today she was laughing & smiling! Such a good mood! She seemed happy to be going! It was the happiest I have seen her in a few months actually. (Thanks to Rhonda & Larry for watching my kiddos while we went! They were up here from Iowa for the weekend to see Cathy & spend some time with Gayle) And for the first time in a long time I actually listened to the sermon & was touched. What I honestly love most about church is the music. And I usually spend most of the time during the sermon reading the bulletin & gazing at the stained glass windows (I was never a good student!). But today he told a story & I want to share it with you. ~ He talked about a man who lost his only son in a car accident. This man was so angry with God. After months of grief he finally went to his pastor & asked him, "Why does God let us suffer this way? Why did God take my only son from me?? He was so young & had so much of his future ahead of him?" He expected the pastor to have an answer... but he just listened at first. (I honestly expected him to say, "There is a reason for everything" or "God has a plan" I quite honestly hate those answers & get upset when people say that to us about Cathy or whenever you hear it when someone else is grieving.) But he didn't. Instead he said that the pastor told this man "God understands your grief and he is there for you. For he lost his only son as well. You are not alone." *Lightbulb* Wow, I had never thought about it that way. God too has grieved. God to understands. God is ALWAYS with you.

It is so easy to be angry. But Cathy was so happy to be in Church. In fact, when Gayle, Jean, & Barb take her to church at the home they say Cathy usually cries. Something inside her is touched by it.

Lately whenever I see the word "HOPE" I tend to walk the other way. When Cathy was first diagnosed it was a word that I found comfort in. I bought a few signs & things that said "Hope" on them & put them around our house. But as the past few months have brought nothing but sadness & further decline... the word has lost it's magic to me. Until today... the sermon touched me, Cathy's happiness touched me, & I have hope again.