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, December 16, 2007

Really... we are nice neighbors!!

So... today I had a little bit of a meltdown. It didn't last long. I just shut myself in the bathroom for about 5 minutes & called a friend (Thanks Ang!)...

Today started off really well. This morning was our Christmas Concert at church. (While I was getting the kids dressed Cathy made herself breakfast... a salad?!? When we came out she was eating a lettuce salad in a cereal bowl.) Rhonda graciously offered to come sit with Cathy this morning so I could focus on the kids & my Sunday school class and not worry about Cathy. The concert went well & it was a fun morning. A special Thanks to Tammy for her wonderful gift of friendship!! Today she gave me a card that said exactly what I needed to hear! "... there are times when helping hands can grow weary... May the Lord renew and refresh you..." (I am looking at these words right now... & they are so calming & refreshing!)

After church I came home & picked up Cath and we headed out for lunch. We met up with my parents, Grandma, and my Aunt & Uncle from KC. Cathy did very well at lunch today! I was pleasantly surprised!! All except for when the kids asked her what she was getting Grandpa Gayle for Christmas... & she said, "Dog Poop!" ~This is kind of an inside story... At Thanksgiving Aunt Gretchen was teasing Chase about giving him dog poop for Christmas. And basically Cathy is mad at Gayle, for whatever reason, we can't seem to figure it out exactly/but we have our ideas... she shopped with me for the grandkids & her boys but didn't want to get Gayle anything. In an effort to make her smile, because whenever you talk about Gayle she gets upset, I said, "how about a lump of coal?" and she laughed & laughed. Then I said, "How about dog poop?" And she laughed even harder... now she says it all the time. Oops... at least she is laughing. (Gayle, if you are reading this, I promise not to let her wrap up dog poop for you! Do you trust me? LOL)

My Dad offered to take the kiddos with him for the afternoon so I could get some work done at home. (The kids love 'bumming' around with Grandpa!) I was so excited to have some time to get a few things done around the house today. Yesterday I watched my niece & nephew for 12 hours so Brad's brother could go to a family funeral out of state. (Sad story... they really needed to be there, it put my life into perspective) Luckily Brad was home yesterday... 4 kids & Grandma got interesting, I was afraid to leave my 8 month old nephew alone with Cathy because she was constantly trying to help... but not always safely. At least she was interacting well & he was smothered with kisses on his forehead all day! So all & all it was a good day for Cathy yesterday.

Tomorrow we are headed to Wisconsin for Cathy's appointment in LaCrosse & then we are off to Mayo Clinic for 4 appointments/2 MRI's on Tuesday & Wednesday. When I get back from those my brother is coming for 11 days & my house is SO NOT ready for company! ( I am guessing that is how everyone is feeling about now with the Holidays coming!) And I am so excited to see my lil brother & meet his girlfriend!!!

So... back to today! I got home & started working around the house... but, Cathy was like a shadow. Everywhere I went, she went. She would pick up things I just organized & move them around, open drawers & put things back in other drawers, unloading the DIRTY dishes (which I hope I found all of them in the cupboards, this happens alot), open boxes and take things out, she even opened up my purse & started looking inside it... she was trying to help but it was making things worse. I thought... ok, I will dust/windex instead... nope... she once again tried to help but used a HUGE handful of papertowels & wasted them, used windex on the wood & endust on the TV screen... URGH. I lost my cool for a second & said something like, "Cathy, stop, you can't use that many papertowels!! We have gone through 8 boxes of kleenex this week, 12 rolls of papertowels, 2/3rds of our trash bags, & who knows how many rolls of toilet paper!!! We can't afford for you to be using so much! You need to conserve!!" (I felt like my Grandma telling me to only use 2 pieces of toilet paper!) I knew that she didn't understand, that she was only trying to help, & that it was useless to say anything. URGH I was frustrated with myself for getting upset. So... I took a deep breath & thought, I will take a break & finish after everyone goes to bed. I sat down at the computer to check mail... & there she was again looking over my shoulder... reading random words on the computer screen. She would walk in & out of the kitchen (where our computer is) & stand behind me. Just stand looking over my shoulder. Ok, I will try something else... I walked back to the bedroom to fold laundry & I heard the front door. I walked back out to the kitchen & looked out the window. UH OH THIS ISN'T GOOD! The person who was up looking at our neighbors house, that is for sale, was stopped in the driveway outside our house with his window rolled down.... & Cathy was shaking her fist at him & saying something! (OH CRAP!) I ran to head out the door to talk to him but by the time I got outside he was driving away & she was saying, "Get Out, On Fire!" over & over again and shaking her fist. My shoulders fell & I didn't know whether to Cry or Laugh!?!?! (I think I am going to have to call the realtor in the morning... Any ideas??) Really... we are nice neighbors!!!

*I think that having her old house next door sometimes confuses her... I can't put my finger on it exactly but today she was in a good mood most of the day... except for when people drive by the house. She points up there & gets upset for a short while, but then is laughing & happy again. Her mood can be like a roller coaster some days.

This is when I headed to the bathroom... I just needed a few minutes. So, I called a friend. And then called Brad... who was somewhere on a train (he always misses the fun stuff!). The whole time I was on the phone I could hear her pacing the house. Opening doors, closing doors, walking around, walking into my bedroom, walking out, while saying the same things over & over again. She wasn't angry... just restless.

After just a few minutes I felt better. I decided to sit down & watch a Christmas movie with her. (Elf... how can you not cheer up when watching that movie) That put me back into good spirits again. Sometimes you just need a few minutes to clear your head.

And so now... here I am, everyone is in bed. The dishwasher is running, loads of laundry are tumbling away, the bills are spread out on the counter, & the suitcases are half packed for the kids going to my Mom's while we head up North.

1 comment:

DeeDee said...

I am reading this blog, and all I can think is how much I can relate to what you are saying. My mother follows us around exactly like that, and it can be so hard to put into words. I feel like my Mom is at this 'stage' of your mother-in-law's point, Dec 2007. thanks for writing this blog and for openly sharing your experiences with us.