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)

Tuesday, May 27, 2008

Memorial Day weekend

We took Cathy out to the cemetary on Memorial Day to put out flowers. When Mia & I stopped to pick her up she wanted to take along the artifical flower arragement Gayle had given her (the one she had been watering & we all had been secretly dumping the water out of!!). We met Gayle, Chase, & Gary at the church cemetary. Cathy placed her flowers on her Dad's headstone. Rhonda & I had picked up some artifical flowers earlier that week & Cathy tried to help me put them together... once we had them together she put one next to her Dad (her Mom is buried in California) & one next to her Grandparents. Afterwards Mia & I took her for Ice Cream and thought we would stop by the park. Cathy only lasted about 5 minutes at the park and was ready to go. So we headed back to the NH. Mia wanted to stay & watch the Little Mermaid (we had taken that movie when we moved Cathy in thinking the grandkids could watch it when they visit... & Cathy actually has it on alot of the time herself) Grandma Cathy let Mia lay down in her chair & watch the movie. I was surprised that we were making it through the whole movie... but just as I thought that she turned it off just before it was over (when Arial watches her prince sail away to marry the Sea Witch... yes, I have seen this movie alot!). Mia was upset... she still doesnt completely grasp Grandmas disease & stomped over with her hands on her hips telling Grandma to put the movie back in. Cathy just blankly looked at her & tapped her on the head.

I noticed while we were up in Wisconsin that she packs her things up less... which Jean had also told me about. A few times she would try to give me her hanging clothes again & I would say, "Cathy, if you send those home with me you will be walking around here naked!" And she would laugh & laugh and then put them back in her closet. Having her TV bolted down also helps. She loves to show you the cards she has gotten. So to whoever in the family may be reading this... please send cards!! She loves it when the mail cart comes around!!!! Aunt Charlene sends her the cutest cards with animals on them that she Loves. Tracy had sent her a card with pictures of the kids which she always shows us. And Nina sends lots of cards also.

Saturday, May 24, 2008

Boat Ride

Today we brought Cathy out to the campground for the afternoon. Hansen's are up from Iowa along with the kiddos & I. Gayle picked her up before lunch & we all headed to the Lake. We ate lunch at the lake... Sloppy Joes didn't go over so well... we finally took the meat off the bun and she was able to eat that a little better. But she did very well with the Pistachio salad - 4 helpings!!! (This was always a staple at her dinner table!)

While we were unpacking she wandered around the campsite a bit. The campground was always one of her favorite places to be. I have heard many stories over the years about when they camped out all summer with the boys & all the fun times they had at this very same campground. When they moved back up here to Wisconsin 5 years ago she was excited to get back to the campground in the summer. They put their name on the waiting list for a site along the water. In the meantime they did bring the camper up a few times to other sites & the kiddos and I came up to camp with them. The first stop was always to the ice cream shop at the campground office. (which we of course went to today... we got her cotton candy ice cream in a bowl) 2 years ago they finally got a site along the water... but by then Cathy was starting to show signs of this disease... Pick's.

Gayle bought a new used pontoon boat this summer. And he took us all out for a ride. In the past Cathy was always the one to stay 'on shore' with the camper when we went out on the lake... in fact, in all the years that I have been around I don't remember seeing her on the lake much at all. She can't swim (& had a bad memory as a child about the water) & she preferred to stay off the water. So I was surprised today when she got on the boat with us & enjoyed the ride!!! She smiled & laughed when Grandpa was letting the kids drive, especially when Mia wanted to go faster. (I was thinking back to how anxious she was being in the Colorado mountains on vacation 2 years ago... and now her fears seem to have vanished!!! This disease is so perplexing!!!!)

Barb & Pete have a campsite just a few spots down and they spent part of the afternoon visiting around the 'campfire' with us. I say 'campfire' because we didn't have a fire going. But we were all sitting around it in our lawn chairs... it was in the sun & today the weather was a bit chilly with the wind coming off the lake. It was quite funny because at some point Cathy gathered some kindling & put it in the fire ring. And then a bit later she added a few pieces of wood... and then later another. I am not 100% sure she realized the fire was not lit... I am pretty sure... but it was interesting... I am thinking that she just was being her 'old' self & taking care of us all... keeping the fire stoked.

We took her back at around 4:30... it was probably about 2 hours to much for her... she was very tired out & rubbing at her knees. Towards the end she seemed to get even more confused... it was a long day for her. As we left her at the NH she kissed my cheek & paused. At first I thought, 'what a long kiss', and then I realized she never made the 'pucker' sound. (You know when you go to give someone a kiss on the cheek & you make a smacking sound.) She just pressed her lips to my cheek and held them... almost as if she was too tired to finish or couldn't make her muscles do it. ?? I put my hands to where she had touched my cheek with her lips, closed my eyes, & thought "Oh this disease just plain sucks!!"

It was a nice day to be at the Lake with her. It won't ever be the same... but at least we were able to be with her & take her somewhere she Loves.

Monday, May 19, 2008

Brad's Visit - Note from Jean

Brad stopped in to see his Mom today on his day off, the drive takes him about 2 hours. As usual he was greeted with laughing, teary eyes, hugs, & a big kiss. It's hard for him to talk about it... mostly he said, "I don't really have much for the blog. Basically it's just hard. But good to see her." At some point today he was introduced to Arnie, another resident in Cathy's unit (someone he already knows but, it's the Dementia unit, so Arnie was really being introduced to Brad again), & Arnie said, "Nice to meet you Brad Pitt. I have heard that name before, it's nice to meet you Brad Pitt." Brad called me to say, "Did you know you are married to Brad Pitt??!!" (Lucky me!) After about an hour & a half she gave him his coat, handed him his pop, zipped up his coat for him & opened the door. As he was walking out he ran into our family friend Shelly who works in activities there. She told Brad, it's Bingo time, that's why your Mom is ready for you to go! That made him feel a bit better! :)
_______________________________

Hi Beth
Just to let you know that we did
not go for our golf cart ride as
planned, it was cancelled due to
bad weather,rain mostly....But
we did play bingo today and drink
coffee... everything seems to be
going ok...Will write more later.. I
guess I just missed Brad when he
was there...Maybe next time....
Can't wait for all of you to be in
Black River.........Jean

Wednesday, May 14, 2008

Mother's Day Gift


I took this picture of Cathy today in her new shirt!! It is a gift from Toby & family for Mother's Day! SHE LOVES IT!!! It has all 3 of her boys families ironed on it. Gayle had brought the shirt into her earlier that morning & he said she was so happy that she cried & immediately put it on!


My Dad & I stopped in to see her after lunch today as we passed through town. (My Dad rode with me to Wisconsin to look at a house Brad & I are buying... I wanted his opinion on it & ideas for remodeling before we signed on the dotted line) My Dad hadn't seen her since she lived in Iowa with us... since January. Here are a few things he noticed : she was excited to see us (which she is when anyone comes to visit), that she no longer speaks but did try to mumble quietly a few times with no luck, that she used her hands to try to communicate a few things with us, she showed me a card she had 4 different times - either she had forgotten she had shown me or she wanted me to see it again for some reason??, how proud she is of her pictures and how she would point to people in pictures when you talked about them, & she had her things packed up (as usual) & acted as if she wanted to leave with us. (My Dad's mother, my grandmother, had Alzheimer's the last few years of her life so he understands that disease all to well... but he noticed how Pick's is similar to Alzheimer's yet so completely different.)


Cathy worked for my Dad a few different times when she lived in Iowa. One of the best things she did while working for him was to create relationships with some of the elderly people who lived in his Condos. She would help clean for them & in turn spend time visiting with them, run small errands for them, & help them with little things around their homes. They enjoyed her company and she enjoyed helping them.


Wish I could have stayed longer visiting but we had to get home to the kiddos & Dad had the itch to get the fields ready for planting. So we headed home. Happy to have stopped but with heavy hearts.

Note from Jean

Hi Everyone:
Went to church services with Cathy again today, actually they
have services every Wednesday,so I do try and get there for that...Cathy has gotten
real comfortable with the Pastor,
she sometimes brings him a song
book when we enter the room....
I also noticed today that she turned to the right page of our book several times....usually she
doesn't seem to have any idea what page or song we are singing.....Afterwards we went for
pie and coffee, yum, yum!!!!
I picked lemon pie for Cathy, I
thought it would be easiest for her
to swallow,, still had a hard time....
She wanted seconds, but we went
outside for a nice long walk instead.... When we got close to
where Barb S. works, she pointed
and mumbled something... She also pointed toward the highway 54....Wonder if she was thinking
about home????She had a new T
shirt on, and was she ever proud
of that. pictures of her family and
grandkids....Great idea !!!!Anyway
when it was time for me to go, she
went and got the book for me to
write in...What a gal....The nurses
\in her unit said she is pleasant
and smiling most of the time.....
I'll see her tomorrow,, Cathy's
family need not worry about her
abit, she is well taken care of..
and loved by all..... Jean

Monday, May 12, 2008

Note from Jean

Hi Everyone:
Just a quick note on my visit to
Cathy today... I was gone for a long week-end, so Cathy was
excited to see me!!! So that's what
I want to think,,, she hugged me, kissed me, so happy, held hands
with me all the way down to the
dining room...Yes. BINGO, and
yes we did win, sometimes we
might cheat a little, not on purpose
of course... then outside for a little
walk, it was going on 3:00 and I had to pick girls up at school, Cathy went with, we then went to
the animal shelter, and she loves
the dogs there, she especially
is partial to a small chocolate lab.
they let her hold and walk and play
with it as long as she wants,, I
think Barb S. has taken her there
as she knows where and what to
do...Good day was had by all of
us... My granddaughters, who are
11 and 10 years old, love being
with Cathy, they remember her at
our house many times....Take
care and will write again after
next weeks golf cart trail ride for
Cathy.... Love Jean

Thursday, May 8, 2008

Note From Barb

Hi everyone, Just got home from Pine View. When I went over there, Jean and your mom were just coming outside. Perfect timing because Jean had to leave so Cathy and I went for a walk over to the animal shelter. She went right for a cute chocolate lab, she also enjoyed the baby kittens. Then she wanted to go for a ride so we went in the country. Coming back she spotted Dave working, rolled down her window and said his name so he came over and talked to her. On Tues. we enjoyed sing along and birthday cake and ice cream for May birthdays. Then we went for a walk outside it was so nice. She got pretty winded though. That evening I checked in on her again because it was stormy and last week Jean said she was alittle uneasy with storm warnings. She was fine and ready for bed. Sunday Gayle brought her out to Hatfield and she came right over with big hugs for Pete and I. Then Gayle and I went for a walk around the campground with her. Hope the weather is nice Sunday so she can come out to Hatfield with Ryan and family and your dad. Love to you all. Barb

Monday, May 5, 2008

Note from Jean

Just a short note to all,, Visited
Cathy on Friday,took her to the
church services there..She seems
to enjoy listening to people singing.
After the half hour service we go
down to the main dining room for
coffee.... Cathy is choking more and more often now, must be very
careful what and how much to let
her have... She smiles at everyone and is so happy looking... I think she enjoys going
out for a dairy queen also, I sure
do!!! Missed playing bingo today
Monday, but will make up for it
tomorrow.....On May 19th, I have
Cathy signed up to go for a golf
cart ride on the beautiful Foundation trail with the Lions Club... John will be her driver, they
do this twice a year for folks who
otherwise wouldn't get out to do
this... I know she will enjoy the ride. Am signing off for now.
Love Jean