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)

Thursday, July 30, 2009

Do not stand at my grave and weep



Grieving is so complex & one cannot predict how you will find your way through that journey. I truly feel I am at a place of healing now. I am able to look back & smile. I am at peace knowing we did all we could do.

I had a dream about Cath this week... I have woke up seeing her face many times since the day she passed, but it has been memories of that day, & I have struggled with that. But this time was different, this time she looked like her old self. She was smiling at me & she gave me a big hug. She said something to me about going home, but I cannot remember the exact words now. I just remember the feeling... feeling Loved by her, feeling her arms around my shoulders, seeing her smile... I am so Thankful for that dream.

Sadly our family is still struggling... so I will continue to Pray for healing for everyone. I will continue to Pray for everyone to respect the other & how they are grieving, to not rush anyone one way or the other, to let time heal, to be understanding, & to not let our grief turn to anger against one another. You really do not realize just how much a MOM holds a family together... until she is not here to do so.

Special Thank You to all of Cathy's family & friends for their support over the past few months. Many have been there for us to just listen while we struggle through our grief... not taking sides or pushing us one way or the other. Just being there. We hope that we can return the favor someday. Love & Friendship are such a powerful thing! Even in the midst of grief we feel Blessed!