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, June 22, 2007

Words

Location: Iowa
Cathy gets stuck on words. They change from time to time. It is difficult watching her struggle... it seems as if she knows what she wants to say. (Like when you are talking to someone & the a word escapes your mind & you say "it is on the tip of my tongue".) She will stop mid sentence and just blurt out, "Actually." She may say the word Actually 100 times a day or more. Sometimes she will just walk around and repeat it over & over. Othertimes it is at the end of a sentence. She also waves her hands in the air as she says it. Almost as if she is saying, "you know what I mean... it's not really actually... but that is what is coming out". And then she will laugh. She laughs and smiles. Laughing at herself, laughing with us... So we smile & laugh with her.

I didn't realize how often I use the word "actually" until now! Everytime I say it I think of her. Do you suppose she got it from me? No. I think everyone says it often, we just don't realize it. Our 3 year old daughter says it too. She will put click her tongue, like she is saying something really important, and say, "actually, I am thirsty." or "actually, I think we should play a game." After talking with my sister-in-law we realized that all of our kids use this word.

My friend Angie has been up to Wisconsin with us the past 2 summers. After this trip she & I cannot say the word actually to each other without laughing. If anyone is actually reading this blog, I dare you to see how often you use it. Actually.

Actually.

Sunday, June 10, 2007

T-Ball



Chase was playing T-Ball while Cathy was here a few times this summer. This is a picture of Brad & his Mom watching the game. She actually (there is that word again) did really well at the game. She didn't pace around, she either sat in a lawnchair or stood with Brad & watched the whole game without asking to leave. It was a great moment for us all!

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.

Saturday, June 9, 2007

Little Norway Lutheran Church

Aunt Charlene, Cathy, the kids, & I went to church Sunday at Little Norway. I think it is so Great that Cathy has interest in going to Church again! They were members here when they lived in Wisconsin & Aunt Charlene's Confirmation photo is still in the basement of the Church. Once Cathy & Gayle moved to Iowa they stopped going to Church for one reason or another. Cathy's father Noble is buried there & her Grandma as well. Brad & I have stopped and left flowers before. We have taken the kids to show them also & Chase and I even got a tour of the Church one day when we stopped.

Even when Cathy lived in Iowa I remember a framed picture hanging in their home of Jesus. The picture is now hanging in the dining room in Wisconsin. I also remember the Lord's Prayer hanging in the kitchen in Iowa. I know that Jesus is a part of her life. Over the summer we have talked about him a few times.

That is one memory I have of my Grandma Ruby before she died. The last night I saw her I stopped in late at the nursing home. She was already in bed with the bedrail up but she was still awake. I leaned over the rail & took her hands. We said good night prayers together. My aunt also tells about how she never forgot who Jesus was. She forgot who we were & would often call me her sister Olga or Agnes. But she always knew who Jesus was!

Friday, June 8, 2007

Aunt Charlene

Chase with Cathy Smiling in the background



Aunt Charlene was here for a visit the end of May. The kids & I made it up for part of the time. We got Grandma Cathy to the park in town! She interacted with them so well! She pushed Mia on the swings, watched Chase cross the monkey bars, & even got on the teeter totter with Charlene!! We all laughed & enjoyed ourselves. It was a Great Day!! ~ We have been to the park with her before... but she does not usually want to stay long. She seems to have such a sense of urgency to just get things done quickly and head home. Home is where she seems to be the most at ease.

Aunt Charlene is an Amazing Woman!! She has had her struggles over the past few years, yet she maintains a positive attitude, loving character, & contagious smile and laughter! She is so much fun to be around. One afternoon we were sitting around the dining room table talking. Somehow the subject of family came up & we talked about the good 'ol days for a while. It was interesting to hear the stories again. Cathy was able to recollect a few things I had never heard before. Cathy had a hard life growing up... I won't get into that here. But one thing I have to say for her is that she never used it as a crutch. So many people blame life on their childhood & she never did. In fact, I don't remember her ever complaining about how rough life was as a child. She rose above it & was a good Mom to her 3 boys.

Charlene tried to renew Cathy's interest in her Garden... but to no avail. The Garden is beginning to grow. But Cathy has no interest this summer.