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)

Friday, September 28, 2007

Last day of work

Today was my last day at ISU. I will still be covering some vacations for people in the next few months, but only a few days a month. They had a Party for me complete with Taco Bar & desserts! I was such a surreal feeling. I have worked at ISU for 8 years now & helped plan these parties... but to be for you is different. They also gave me an "extremely" generous going away gift... I don't feel right taking it, since I hope to someday go back to work. We will see how it all plays out.

I will miss being a nurse, I will miss adult conversation, & I will miss my friends at work. I am leaving them at a bad time, they are short staffed & we have changed to electronic charting... so it is pretty crazy somedays! I have the guilty feeling tugging at me. But they have all been so supportive & understanding on why I made this decision.

Saturday, September 22, 2007

Words part 3

Everafter... (started sometime this summer) I think this is from a movie she watches with Drew Barrymore, I happen to really like this movie, but I now have it memorized.

Come Alive... (started sometime in the last month) I am not sure where this came from. Anybody know?? Maybe from a movie. I worry it is because she is thinking about the illness. I hope that is not where it is from. In early August we were sitting around the dining room table visiting. Cathy walked from her bedroom, past us, & then to the living room. As she walked she mumbled, "my life is in danger". I tried to go over and ask her what she meant, what was wrong. But she just looked at me and said, "#9." #9 is the shot she is holding out hope for. The shot that was discussed with the Mayo Dr. possibly? I wasn't at that Doctor visit. But I believe they discussed an experimental shot that may have been ready by August of '07, something to hopefully slow or stop the progress of this disease. As far as I know now, it is not available or she no longer qualifies for it. It was not mentioned at her appointment in July.

It is bittersweet... It is good for her to have hope, even if it may never come. Hope is just as strong as medicine!

And once again... she does not seem to be in any pain. I have asked her from time to time, and her answer is always, "No."

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)

Saturday, September 15, 2007

Friends

Cathy is Blessed with many good friends!
I wanted to take a few moments to Thank them for all they have done this past year.

Barb - You have been her friend since grade school. She was so excited to move back to Wisconsin & be close to you again. Thank You for your continued support in everyway!

Rhonda - An Iowa neighbor who is now a lifelong family friend. Thank You for your patience & care with Cathy! You have spent time with her, taken her out for ice cream, taken her shopping, cleaned her home, watched movies (over & over) with her at home. Thank You!

Jean - Your life is so busy, yet you still make time for a friend! Thank You for taking her out for coffee, keeping her company while Gayle is out of town, & keeping her plants alive while she is in Iowa with us! You are Truly a Wonderful friend!

Tuesday, September 4, 2007

Foods

Chase helping Grandma with Chocolate Chip Cookies - 2002



While reading this... Please remember Cathy would never have eaten this way... these changes are caused by the Disease she is suffering from.

Her eating habits have changed. She used to buy healthier foods. I don't remember her having any snacks around accept for the cookies she made for us. She made AWESOME chocolate chip cookies & oatmeal raisin. She would make chocolate chip for Ryan, Oatmeal Raisin for Toby, & Oatmeal without Raisin for Brad. Soft, chewy, thick... I can smell them fresh from the oven... Yummy!

She would hide them from me & Ryan. :) She made them for us, but she would only bring out a bag at a time and keep the rest in the freezer. Always telling me I needed to watch what I ate. That used to make me so angry... now I would Love to hear her say that again.

Anything she sees that has sugar in it... goes in her mouth. Fast, in big amounts, & without chewing! She will shove it in & swallow. She would be embarrassed to know that now. A box of oreos gone in 2 days, a box of ice cream drumsticks gone in 2 days, & Ryan said she ate almost a whole cake overnight while staying at their house.

At a meal she will fill her plate, eat standing in the kitchen, & be back on the couch in front of a movie before any of us have sat down at the table. We used to always eat family style at the table. Not anymore.

I think about how it must be for Gayle in the evenings. He used to come home to a nice supper or a plate waiting for him in the fridge to heat up. Now... he has to fend for himself or check to make sure what she made is safe to eat. Cathy always took care of the house (kids, dogs, home) while Gayle worked. Now he is doing both jobs.

One evening when the kids & I were in Wisconsin this summer I made one of her favorite chicken dishes. All of the sudden I noticed Chase, our son, was laughing... but nervously. I looked over & she was choking. Her cheeks were stuffed like a chipmunks. Just as I got up to do the Heimlich on her she coughed it out - it looked like a handful of cut up chicken pieces. I walked her over to the sink because she was still coughing. She began to settle down & took a drink of water. Before I realized it she went back over and ate the pork chops pieces she had just coughed up. Needless to say... I didn't finish my chicken.