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, January 27, 2008

Weekend at home

Just a quick weekend overview.

Brad was home all weekend. He talked with his supervisor & union representatives and finally got his April Vacation moved to single days that he can take starting today. HALLELUJAH! Thankfully he is going to be able to be up there this week.

Cathy's Niece Nicole drove all the way from Salt Lake City yesterday. She spent the day with us today... she took Cathy out for a walk & took Cathy to Wal-Mart shopping. Cathy did really well... she was laughing and very receptive with her. You could see the connection was still there.



Rhonda & Larry stopped by this morning, they brought Cathy an angel, orange candy, & some photos from their trip to Colorado. Cathy was so proud of the angel... she kept showing it to everyone today.

Yesterday Brad was looking out in the backyard & pointed some deer out to Cathy that were across the river. She got excited and said, "Gun." And started to go find one. He just started laughing & said, "Mom, it's not hunting season!"

I pulled up the Classic Rock section of my itunes again tonight... & we danced around the kitchen. Imagine this: Cathy, Nicole, Mia, & I... rockin to Black Betty & Steve Miller. She laughs, smiles, & shakes her butt to the music... Good Moments to remember!

It was a really good day today... and then... we discussed ways of breaking the news of going to the care center to her again. (in all honesty, how are you supposed to handle this??? does anyone know?? do you prepare her... do you just spring it on her... how do you respect her feelings???) So... I "doctored" the care center's pamphlet with information on Pick's Disease & how they "care" for people with this disease and put her Doctors picture on it... since we know that she trusts him. We had hoped that would help... but... when she saw it tonight... it didn't. She just can't seem to put the 2 together. She understands enough to be upset... but not enough to be able to reason with her. (ARGH!) So after she saw the pamphlet she started getting angry again, shaking her fists, yelling "Actually, On Fire!", & slamming her bedroom door.

I was talking to Toby on the phone... he is out in the DC area for Air Force TDY... & he heard her yelling. I know it was hard for him, being so far away & helpless. He has been very supportive to us this week.

I packed the kiddos up tonight for spending the week with my parents. They heard Grandma yelling before we left... on the way to town we talked about it. I asked them if they have any questions or worries. Mia just said, "Grandma is mad at Daddy, but not at me" and Chase said, "Grandma's Brain is sick Mia, but we can't get it from her." I think they understand as much as they can. But I can tell that it is getting harder on them also. I am glad for the chance for them to spend a week at my parents house.

Aunt Charlene flew in to Wisconsin this weekend also. She will be meeting us at the care center tomorrow. (big sigh) I hope it goes better than I am expecting. Cuz... I just don't know what our Plan B will be.
___________________________________________________

Below are some pictures from our week. Grandma in her new outfit with the kiddos. Cathy trying to help me with the laundry (we went through an entire container of Tide HE in 10 days... for 110 loads!). Cathy's stuff out by our van... I had the van locked & it sat out there all day. (sometimes being carried back in... but then right back out)





1 comment:

Anonymous said...

Beth, I know I've said this before, but I really hope you know how truly grateful I am for all that you have done for Cathy and sacrificed of your own life to make hers a happier one. What a blessing you are to our family! I know that for as long as you have been in our family Cathy has been like a second mom to you just like she has always been for me. Brad is very lucky to have you as his life long partner and he knows that. I know for a fact. He may not always know the best way to show you, but, as his cousin I am possitive.
Times right now are very confusing and emotional for everyone, but at the same time we all know that this is the best decision for safety and life matters. It will be hard for you at times I know, because knowing you, you will probably go over and over this decision thinking of any other possible ways that you could of handled this, so when you do, just know that you did do the right thing and you did a great deed by "caring for Cathy" for as long as you did. I love you Beth, and I know God will bless you for your wonderful acts of kindness, generosity, and love that you've provided for my dearest Aunt Cathy! With all my love and gratitude, Thankyou from the bottom of my heart!!!
Your loving cousin, Nicole