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)

Monday, December 17, 2007

Happy to be Home!

Just a quick post about today...

This morning I woke up to find Cathy's suitcase & things sitting by the front door... she was ready to head up North! But... along with those things was a garbage bag & a box full of: an afghan, random picture frames from throughout our house, a half empty bottle of hand soap from our kitchen sink, the cork board from behind our computer with photos & notes still tacked on, rolls of paper towels, Kleenex boxes, shampoo, dishtowels from the kitchen drawer, my Christmas cards that I have received from family & friends, some knick knacks that were on shelves throughout the house, the kids Christmas stockings (that were hung up), etc... ???? Lots of things from around our house. I think she was packing us all up to move, it was just strange pulling things out of the bag. I felt like Mary Poppins pulling things out that just didn't seem to fit! I had to laugh... I knew she was excited to go home. But I wish I knew what was going on in her mind when she packed these things... I can't seem to find the connections between any of the items... totally random.

The drive up went well. Cathy was very happy & bubbly today. We made it to Lacrosse & met with her Dr. for the in office procedure. It went very well. Cathy seems comfortable with everything. Before the appointment she seemed nervous & her BP was elevated slightly from the last visit. She also kept saying, "no cut" and "surgery, on fire" while shaking her head no. I don't think she wanted surgery & I am so Thankful that we choose this option after weighing all the pros & cons. The Physician & his nurse were so Wonderful! They were patient, caring, & helpful! I am so impressed with that clinic! Even the receptionist was helpful when I called this morning! (Our hometown Family Practice is always that way & we are also Thankful for that... but sometimes seeing a Specialist things are more impersonal & you feel rushed & unimportant.) I was so impressed with how well they handled her Dementia! The Dr. explained how I can help her with things in the future... I won't go into details. I didn't tell him I was a nurse because with my past experience it seems like you don't get as thorough of instructions if they know... sometimes they assume you should know, & you don't always... ask me about College Health or Tuberculosis & I can tell you alot, but other areas I am not as fresh on... one thing I Love about nursing is that you are always learning!

After the appointment we headed home & went to Jean's for supper. Thank You Jean for making a Delicious supper for us & saving us the time/energy tonight!! It was very much appreciated. After eating Cathy stayed a short while but started getting restless & was ready to come home... mostly to Misty. I had called Gayle earlier today & warned him that she has been very restless & to "cathy proof" the house again. He was able to hide keys & some of his paperwork before we got there. However... she got to the laundry room & washed clothes tonight... leaving most of his towels pink now after washing them with her new red sweatshirt. Oops...

I better get to bed... we are headed to Mayo in the morning. Jean is going along to sit with Cathy during her 2 MRI's. Only 2 people can go into the Dr. appointments, so Gayle & I will be doing that. I have asked Toby & Ryan to email me with their questions... basically most of us are wanting to know the genetics... (I wish Toby could be there because he is the one who will understand this the most. I am going to have to take notes!)

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