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)

Sunday, June 10, 2007

A Typical Day

A Typical Day for Cathy Before & After.Before:  She was usually in bed by 9pm and up bright & early making coffee, walking the dogs, cleaning around the house, & getting ready for the day.  If you ask Brad & Ryan about what it was like living at home during college they both might tell you how she would come in & vacuum their rooms bright and early.  Yes, she would vacuum around the bed while they slept.  Or how you would be woken up by the sound of clanging pots & pans as she emptied & reloaded the dishwasher.  Cathy was not much at watching TV.  She would have it on & keep us all alert about the weather.  ~  One of my first signs that something was wrong was in the Spring of 2006.  The kids & I had been up for a visit to Wisconsin and we were headed home.  She would always check the weather and tell us if we should travel or not.  She told me it was fine to drive home that afternoon.  But when I got to Winona, Minnesota the Tornado Sirens were going off.  I called Brad on my Cell Phone & he said there were Tornadoes from Iowa to Minnesota... my entire route home with my 2 kids in the car!!  We turned around & spent another night in Wisconsin.  This would never have happened before.On a normal day she would water her flowers, work in the garden, check on her bird feeders, visit with friends, send out a few cards to family, vacuum up dog hair at least twice a day in the house, & so on.  She was always in the know about what was going on.  And when Brad & I build our house in 2001 she sometimes knew more about the details than I did.  I was always amazed at how she could remember things that I couldn't.  However at the time... I was always irritated that she was "advising" me on how to run our lives.  Now I would give anything for that advice again.  She would cook balanced meals & have them ready for Gayle.  She also fed Brad, Chase, & I on many occasions.  Ryan would stop by while driving through for work for a snack.  Brad would even take his lunch hours at her house.  A staple at her house was always cottage cheese with diced onions & pistachio salad. 

After:  Now her sleep schedule is more random.  Sometimes she will stay up until 1 am watching a movie.  While other nights she will head to bed by 7 pm.  She is still usually up bright and early.  Making breakfast for Gayle... although now it is not always completely edible.  She has been known to start the Bacon cooking and leave to walk the dog or take a shower. She also sets her oatmeal out the night before, with the milk in it. (After all of us hounding her about how unhealthy it is she started hiding it in the microwave.)

And then she is on the couch. Mindlessly staring at a TV. Somedays it is the same DVD over and over again. Somedays it is the Disney Channel & DVD's. She cannot read anymore. She does walk the dogs randomly. She is constantly letting the dogs in and out of the house. They love to chase squirrels & birds by the birdfeeders in front of the house. Earlier this summer she would knock loudly on the window & laugh as they chased the squirrels around. Now she just laughs. But when she lets the dogs in she does not remember to wipe their feet. So the house is covered with doggie tracks. At our house it is very frustrating because we have light tan carpet & off white linoleum! At her house the carpet is burber & it at least blends in more. We are constantly fighting that battle to clean.

Now the housework is up to Gayle. And what Man enjoys housework? Cathy has done it for their entire marriage.

Another thing that is strange is all the outdates on food. This is also something she would not have done. When she goes to the store she always buys the same things. And now when you open a cupboard you see 10 of one thing & nothing of the rest. She also is drinking lots & lots of soda now unlike in the past.

No comments: