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, May 20, 2009

Memorial Service - "Circle of Life"

Last Saturday Gayle, Jean, Barb, Brad, & I attended the "Circle of Life" Memorial Service. It is a ecumenical service and is held annually to remember loved ones who died throughout the past year. It is Sponsored & Planned by Black River Memorial Hospital, Interfaith Volunteer Caregivers, & the Local Nursing Homes.

It was a Beautiful Service and the Program included Reading/Poetry, Music, reading of the names of those who have died & giving of roses to family/friends, photo slideshow, & a candlelight song. Many tears were shed as we saw Cathy's photo flash across the screen & as we heard the bell ring after her name was read.

I have to honestly admit at one point during the service I was thinking, "No, I don't want this sadness to overwhelm me again. I don't want these feelings to be creeping back up inside me again." I had a fleeting thought of getting up and running out of the room. I had been looking forward to the service, as a way to remember Cathy & put some closure on my feelings. But I was not prepared for the sadness again or to see everyone else still grieving. I recognized the sadness this time & was able to let go of it. Unlike the weeks after Cathy's passing when I let it take complete hold on my heart.

After my Grandmother passed away this month I realized that I was just plain tired of feeling sad. I had been feeling sad since the day Cathy was diagnosed with this disease. And I let it suck me in... deeper and deeper. I don't want to miss anymore joys in life. And I realize that I cannot move forward carrying the past with me. So I am holding on to all of the things about Cathy & my Grandma that make me smile... and I am going through that door to the future. I have finally realized it doesnt mean that I am forgetting them or dishonoring them. I know they both would want us all to be happy.

This Memorial Day weekend we will be camping in the campgrounds that hold so many memories for Brad growing up. Memories of his Mom & of his childhood. I hope to create those same type of memories for our children, memories of fun & happy times. I can't help but wonder how happy Cathy would have been, camping with her family & her grandchildren at the Lake. (Thankfully our kids have a few memories of being there with Grandma... especially getting Ice Cream at the campground store!) But this time as I think of Cathy I am not going to let my heart be overwhelmed with sadness, I am going to Smile. Smile because she Loved us. Smile because we Loved her. And Smile because I have HOPE for the future again!

Only those who avoid Love can avoid grief. The point is to learn from grief and remain vulnerable to Love.
--John Brantner

Friday, May 8, 2009

God's Gift of Time

we all need a time to grieve-
quiet time for reflection
to sift through memories
and come to grips
with what has happened.

we all need a time for tears,
not for the one who is now
at peace in heaven,
but for ourselves as we realize
that things will never be the same.

we all need a time to just "be",
when we can open ourselves to God
and let the reassurance
of His everlasting love
start to heal our broken hearts.


~I read this today on a Hallmark sympathy card... and it struck a chord in me... it is exactly how I have been feeling. Brad & I were both feeling we were finally beginning to heal from losing Cathy and then this week my Grandmother passed away suddenly (yes, she was 91, but she was still cooking and cleaning and had traveled up to visit us 4 times in the past year!! She even rode on the snowmobile with Brad this winter! At any age it is difficult losing someone you Love.)

My heart is breaking once again for our children... losing 2 Grandma's in 3 months. We lost Cathy slowly and painfully... and we were expecting it, yet we still were not ready to let her go. And we lost Grandma Gladys quickly and peacefully... yet we are still not ready to let her go. They were friends. Grandma helped with Cathy when she lived with us in Iowa. She sat with her when I needed to run an errand or go to a school event. And I Imagine Cathy greeting Grandma Gladys into the doorway to Heaven with a big hug & a smile.