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, September 19, 2007

New Bedrooms

Location: Iowa
In the past when Grandma Cathy visited she always stayed in our downstairs bedroom. But after much debate we decided it would be best to make a room for her on the ground level. (Not knowing what to expect in the future with her health & wanting her to be in a familiar room.) We have 3 bedrooms on the ground level. One is ours, one is our daughter's, & one is our son's.
Our kiddos have been asking for bunkbeds now for ages... now they have got the chance. Grandpa Larry came out & helped me bunk together the beds I shared with my little brother years ago. Daddy & Grandpa (with a little bit of help from me) painted over the pink walls making them bright blue & green for a Scooby Doo theme. We then moved the bunkbeds & the kids into their new room. (Which is making bedtime a long long long process... hopefully we will soon adjust to this!)

The now available 3rd room is for Grandma Cathy. Brad spent a whole day choosing paint & painting the room for her. He wanted her to feel at home here... so he decided on a Cranberry colored room (since Cranberries are grown near her home in Wisconsin). He has taken this task to heart, thinking of every detail trying to make his Mom feel at home. We traded our son's car bed for a full sized bed we got from Ryan, Brad's younger brother. Brad got a new bed-in-a-bag for the room that matches the wall. (If you know Cathy, you will know that she is a huge fan of the bed-in-a-bag... many a Christmas she has asked for a new set. Just last year her kids went together & got her a new set. ~ And yet, as another reminder of this disease, when asked what she wanted for her birthday last April, the answer was: a bed-in-a-bag.)

Now... we will see if she is comfortable in the new "guest" room. (fingers crossed)

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