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, March 12, 2009

"She is Gone" ~ Poem

Every once in a while I find myself on the FTD support forum site online... I go there when I miss Cathy & just need to be in the company of people who 'understand'. I read this poem on the site tonight & wanted to share it with you:

“She is Gone”

You can shed tears that she is gone
Or you can smile because she has lived

You can close your eyes and pray that she will come back
Or you can open your eyes and see all that she has left

Your heart can be empty because you can’t see her
Or you can be full of love that you shared

You can turn your back on tomorrow and live yesterday
Or you can be happy for tomorrow because of yesterday

You can remember her only that she is gone
Or you can cherish her memory and let it live on

You can cry and close your mind, be empty and turn you back
Or you can do what she would want: smile, open your eyes, love and go on.

~Short poem by David Harkins of Silloth, Cumbria in the United Kingdom
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We are taking things day by day, moment by moment. At times I feel so strong... and then at other times I feel so weak. After focusing so much of our lives the past few years on Cathy it is hard to know how to move forward with her gone... spending most of our free time going to see her, knowing that Brad's focus was always on his Mom, always worrying about what was ahead for her. It is almost an overwhelming feeling of freedom (don't get me wrong by saying freedom I mean: freedom from feeling sad, freedom from worrying, freedom to do something other than care for her - her disease took so much from her & all of us).

I was at the Dr. the other day & Mia whispered to me, "Mom, can I tell her about Grandma." I said yes. Mia told her, "My Grandma died." The Dr. said to Mia, "Do you know where she is now?" Mia said, "Her soul is in heaven, but her body is in the ground at the church." (That whole concept took a while for Mia to understand... Brad tried explaining it all to her, it was good to hear she is beginning to understand it all now) The Dr. then said to her, "Do you know that means her soul is in Heaven with a new body, and she is dancing & walking around again now." Mia said, "Yep, she is an Angel." *sigh*

Brad & I watched the movie, "Nights of Rodanthe" last Saturday night. I had read the book & knew the ending... but I still cried & cried. I started crying because of the movie & then it turned into crying for Cathy & then it turned into remembering how the last time I cried that hard was when I was with Cathy when she died. And then all those visuals came rushing back to me... the ones I had finally been able to put away. *sigh* Crying is so healing...

Just before Cathy passed away a friend shared this blog with me (link below). I prayed for this little girls recovery & then I headed off to be with Cathy that Thursday she passed away. After coming home over a week later I got on my home computer again & wanted to check the link again, see how this precious little girl was doing. And I was shocked & saddened to see she had also passed away, just after Cathy did!! My heart was broken for her family. And yet through it all I was completely OVERWHELMED by their FAITH, Amazed by their strength & courage, and touched by how many lives they were touching. I want to share their journey with all of you. Reading their journey has given me a renewed strength. I can only imagine the loss of a child... our greatest fear. It touched me seeing how her Father made a list of all the firsts they celebrated with their baby girl. To help them see how blessed they were to spend that time with her.

http://themcclenahans.blogspot.com/

I have began a book about Grandma for our kids, I am making it on Shutterfly.com. Filled with pictures & memories for them to cherish. Chase sleeps with 3 of Grandma's stuffed animals & Mia keeps wrapping up in Grandma's afghan from the home. At times I have snuggled up in it as well... and faintly I can still smell her, smell is such a powerful thing, it makes me smile & I hug it tight with my eyes closed. A hug... almost.

1 comment:

Nichelle said...

OH, Beth and family..as I am reading your last post...tears roll down my face, many because I know you all miss her so much and life has changed again for all of you. But also happy tears knowing through this the kids see true faith in our heavenly father, they "know" where grandma is and that she is ok. That the wonders of heaven surround her and she will timelessly wait for them.
I am here if you need me sister...praying for you daily.