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)

Saturday, February 14, 2009

Thank You's & Poem

I am not sure where to start... this week has been a blur. I want to let you all know that we plan on leaving this site up... as a remembrance to Cathy & to help those who are just beginning their journey with this disease, to maybe give them somewhat of an idea what they are facing & how to get through it.

Toby & I will also be posting new information on here in the future. And I would also like to post what Toby read at his Mom's funeral... some great Memories of Cathy!! That enabled us to all smile & laugh in the midst of tears.

I want to say a HUGE THANK YOU to all our family & friends for their support over the past week. Having the house full of people was so HEALING for us all. A few nights Uncle Roger played his guitar... and a few of us sang along (what happens in Wisconsin... stays in Wisconsin!), it lightened the mood & Cathy always Loved music & dancing! Thank You to everyone who brought food over, sent flowers/plants, sent cards & memorials, sent their thoughts & prayers through email, etc... A Special Thank You to Rev. Thoreson, the ladies of Little Norway Lutheran Church, & Dave the Organist. Also a huge Thanks to Buswell Funeral Home... they were ahead of us each step of the way & helped make things go smoothly amongst all the emotions involved!

Also Special Thanks to Sue & Bill... for traveling the miles to be with us Monday, having their support meant a lot to us. We did not ask to be on this journey together... but having someone who 'knows' what you are going through & understands the depth of it all speaks volumes to our hearts. They are truly an amazing family & our thoughts and prayers continue to be with them as well.

In Gayle's words: "It is difficult to find the words to express our feelings on the great job of the staff at Pine View Care Center. These people care & love their patients. It's not just a job, rather something they love to do. As a family we made many good friends that we will always remember."

And from me: Thanks to the staff that were with me on Thursday during Cathy's passing. As a nurse I have been with patients as they pass... but never with someone I Love, I had no idea how difficult it would be. Words cannot express what it meant to have all of you around me & Cathy. Thanks to the CNA's, the Nurses, & Shelly... for rubbing my shoulders as I tried to hold back tears letting Cathy go.

Friday morning I woke up & went out on the front deck to get my morning coffee... diet coke... and as I reached for it I was overwhelmed by the Sunrise. It was so Beautiful & just over the treetops... yellows, oranges, blues... it seemed to embrace me in warmth... & it felt so refreshing, like taking in a big breath of fresh air. I felt almost as if it were a sign from Cathy. - And then later on that day Gayle said to us... "This may sound strange to you, but this morning the sunrise was so beautiful & reflecting off all the mirrors on the cars." He felt it too! I do believe it was a sign from her. How Amazing! (Some of you may think... you guys are losing it... I know our emotions are wide open this week, but I know some of you have felt those moments too after losing someone you Love.)

Below I am going to post a poem Cathy wrote. Our son Chase, age 8, read this poem at her Funeral Monday. I actually tried to talk him out of it, thinking he could not get up in front of a church full of sad people to read it, but he finally said to me, "Mom, I am not going to change my mind. I am doing this for Grandma." And he did. My heart was soaring in the midst of sadness. We were so Proud of him & we know Grandma would be too!


OF ICE AND MEN

From young men dressed in orange, black and white.
They transform to giant athletes skating with might.
All sizes and shapes, goalies, forwards and defense.
They skate and shoot, no challenge too intense.
Checking and hitting the boards with a crash,
Sticks reaching, swinging. Oh, no! There’s a slash!
A player goes down, soon a whistle blows,
Their player, our player, no one knows.
All stomachs are tight, hard to stand the suspense,
With help, the player rises and skates to the bench.
Everyone claps and cheers with relief all is OK.
No matter which side, it may be your player some day.
As the game goes on, the shouting gets fierce,
Parents and friends wonder, can they ever hear us?
Win or Lose, when all is done,They shake hands and skate off, friends everyone

~written by Cathy Handly

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