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)

Tuesday, January 22, 2008

Part 3 - Nursing Home

I like the word Care Center better...

I talked to Gayle today & the paperwork is rolling. I have phone calls to make tomorrow to get the H&P and PPOC faxed. I have spent lots of time on my support group forum, talking to family & friends, & praying about this. And I have finally come to Peace with this decision. It is time. Time for her & time for us.

Since talking to Gayle on Friday night I have been able to feel a huge weight lift off my shoulders. I finally have patience, I am laughing with her & the kids again, & I don't have a terrible knot in my stomach anymore. (Or... it could just be from drinking lots of Riesling & singing Karoake at Mom's night Saturday... Thanks Brad for watching the family so I could finally get out again!!)

If the paperwork goes as planned...?!?... then she will be moving in next week. I know that this will be extremely difficult. I have NO IDEA how we are going to handle this yet. Part of me is excited to have my family/house back, part of me is devasted to see her move away, & the rest of me is numb to it all. I don't think any words can express the emotions of it all... you can only know it if you have been through it. I know some of you understand, & I hope the rest of you never have to.

I talked to Chase a little bit about it tonight. We talked about how it is a place like where his friend Tom lived (a family friend we used to visit often here in town) & that we can go visit her in her new & 'Safe' home. The first thing chase said was, "Mom, we have to tell them Grandma likes Pizza!"

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