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, November 30, 2008

Thanksgiving Week 08

Gayle & Toby took Cathy out for a drive last Sunday... they stopped in a nearby town to watch Brad's train at a crossing. Below are a few pictures Toby took... Cathy on the drive, Brad's train headed for the crossing, Cathy laughing when she saw Brad, Brad waving to his Mom, & Gayle holding Cathy back (she was going to walk up to the train).








We had a fun week with family! Cathy was the best I have seen her in a while, I think having family here to visit perked her up quite a bit!!

We didn't get to visit as much as we all had hoped... having 9 kiddos in the house plus adults, we ended up with a round of Strep Throat, Miserable Colds, & Stomach Flu!!! Uffda!! But we all got the chance to spend a little bit of time with her.

Her Sister Nina was here from Georgia for 5 days & Niece Nicole was visiting from Utah as well. Rhonda & Larry were up the first half of the week. And Jean is always in & out... plus she came out to play cards with us in the evening.

Ryan & his family came in while we were visiting on Friday. Cathy had the whole TV room full of family! In the past she has not interacted well with their kids, their youngest was born after Cathy was sick & their oldest was born when we think she was having symptoms already. They are not familiar to her. But that day she smiled & tried to pick her grandson up. She also tried to kiss him on the cheek... she still cannot pucker, so her mouth is just open. It was a good moment... to see her with him. I noticed he looked up at her a few times & just stared... he had a curious look in his eye. To me it was almost as if he knew who she was... who knows what little kids comprehend?

Toby got to spend time with her alone & with his family. His wife Tracy had to perform "build a bear" surgery again... his voice was worn out & they had to replace the voice box again! She LOVES her bear!!

I remember Cathy always calling me after Thanksgiving week (anyone else who has talked to Cathy on the phone will understand this...) & she would tell me what she was doing: washing sheets, making beds, vacuuming, dusting, sweeping up dog hair, etc. I always would think, "why does she tell me this??!!" But now... I get it. After everyone had left we stayed another day... and I was: washing sheets, making beds, etc... trying to help Gayle. Wow... having family visit is alot of work! And being an adult during the Holidays sucks!! I want to be a kid again... play games, eat pie, & build forts!

The kiddos & I stopped in today with Gayle on our way out of town. She hadn't eaten lunch so Gayle fed her 2 pudding packs while we watched the Packers on TV. (We won't mention how bad the Packers played... only that Brett Favre & the Jets are doing well!!) Mia wiped her Grandma's mouth with her bib after she finished each pack... it was sad to watch the roles reversed. It was hard to watch Gayle feed her today as well... he is so caring with her, if she only truly could see that. Every woman wants to see that side of her husband, but... not in this way.

Monday, November 24, 2008

Annual Hunting/Turkey Day Week

Well... the Annual Family Deer Hunting/Turkey Day week has begun! Cathy's house is filled with the sound of kids laughing (sometimes crying), dogs barking, snack munching, cards playing, men joking, etc... Only one thing is missing this year... Cathy!!

It is such a strange feeling... sitting here in the house this week... knowing she is sitting in the nursing home down the road. Feeling guilty enjoying the time with family & friends, but mostly sadness that she is not here with us.

Brad went along with Toby on Saturday to see their Mom. Toby was prepared for the changes... I can't speak for him... but when we asked how it went he said he noticed how much weaker she was. He feels like she knew it was him, she brought him the build a bear he made her & squeezed it's hand.

We will all take turns visiting her this week. Lots of family & friends are in town from North Dakota, Iowa, Georgia, & Utah!

Wednesday, November 19, 2008

Sleepy...

Note from Jean on 11/18/08:

Hi Beth and Family:
Well, it's finally winter here I think?
Cold, Cold and Cold... All we need
now is snow, one thing I can look
forward to, is having to put up with
that for about one month, and then
Florida here we come.....................
The last two mornings I've stopped
to see Cathy, which is about 9:30
or maybe 10.00A.M. she is in bed,
the nurses tell me she doesn't
want to get up and eat, but I guess
she's eating lunch, mostly the sweet things, I still take her down
to the dining room when I can, and
today she had yogurt and pudding.
had a difficult time with both,,,,
Went back to her room and sat
a while, then she walked out of her
room to the other TV...So I said,
see you tomorrow and she smiled
and looked away......I have to wonder what she's thinking as we
leave..... Excited to see all of you this week-end....JEAN

______________________

Brad sent me a picture this morning... it was of his Mom sleeping in bed... it was about 10am.

He said she briefly looked up at him when he walked in. She was still in her PJ's and had the shades pulled & lights off and was snuggled up in her bed. Her room door was open & she would look over every time the main unit doors would open (her room is the first door inside the unit). So he pulled up a chair and sat with her. Scratching her head like she did when he was a little & rubbing her shoulders. He stayed with her for about 45 minutes... just being there.

Monday, November 17, 2008

This morning...

Brad called me this morning after visiting his Mom at around 10. He said she was having a good day, she smelled nice & had just had a shower. She was sitting in her room staring at the "Play" screen of a movie... so he pushed Play and sat down with her. He stayed awhile rubbing her back & holding her hand.

Then Jean just called me & said, "Oh Beth, she is having a rough morning..." Jean had been there at breakfast time & Cathy wouldn't eat. The nurses had said she had been up all night. Her eyes were glassy and she was not smiling. Jean tried to feed her and she just pushed it away.

Jean also took her for a walk down to see the birdcage (a lot of nursing homes have them... you may have seen one before?). On the way down Jean stopped to visit with someone & Cathy took off... she found her in the public restroom by the nurses station with the door locked. She finally had to go get the key and get her out. Cathy started to walk out of the restroom with her pants at her ankles!!! Oh... she would be horrified if she knew what this disease has done to her!!

She can change now from hour to hour, it used to be day to day. I don't think I will tell Brad I talked to Jean... I will let him go to work thinking his Mom is having a good day... My guess is that getting a shower between visitors perked her up a bit.

I wonder how she will be when Toby comes this weekend... he has not seen her since this Summer. I hope he gets a few moments with her when she is having a good day.

Sunday, November 16, 2008

a few notes & thoughts...

Note from Jean on 11/16/08:

Hi Everyone!!!
Spent some time with Cathy this
afternoon, as did Gayle... The care center was having a Packer
Party, Bar-B-Que pork sandwiches and popcorn, dessert,
and root beer floats, plus ice-
cream!!! what a treat for all......
Cathy tried ice-cream, but found it
a bit hard to swallow, maybe too
cold ??? I think it's alot like jello
for her, it melts before she can
get it swallowed... anyway the game was won by the Packers, she had her packer t-shirt on and
green and gold beads from her
many wins at bingo......she was
happy and smiley today... tried to
escape a couple times from the
dining room , but we rescued her
each time.... Sure is a cold,cloudy
day here... Beth you need to come
over so I can play cards with you,
or better yet we can all play UNO!
see you soon?? Jean

___________________________
Note from Jean on 11/11/08:


Hi Beth
Just catching up on all my E-mails,
etc. I had a good bingo yesterday
with Cathy, I still want to believe
Cathy knows us, when her nurse
said its bingo day, Cathy smiled,
went in her room and started to
take off her top, as I always make
her change before we go down to
bingo.... I think she knows Brad
also, it just depends on the time of
day.....When we were ready to
leave from bingo, Gayle came in,
and Cathy immediately went back
to sit down for awhile with him....
yes, she is failing rapidly, but she
sure is trying her hardest to hold
on.....I'm so glad Brad is in town
now for a few weeks???? and goes everyday before work to see
her,,,the nurses have told me Cathy has more family and friends
visiting her than any other resident
there... They think its wonderful..
So whether we think she knows us
or not, we should and I will continue to visit, and some days
are very, very hard for us, but
think about how Cathy must feel...
Shes quite the gal....Love Jean

____________________

Brad heard about a job opening over by his parents... it is a temporary job covering while a guy is off with an injury. He put in for it & got it! So he has been staying over with his Dad & visiting his Mom almost everyday before work. The first day was rough for him... Cathy was having a few bad days and he felt like she didn't know him. But after that day (post below) he says things have improved some... she seems happy to see him when he comes now. It just depends on the day, time of day, etc... I am glad that he has this opportunity to spend some time with his Dad & also see his Mom more often.

The Annual Family Week/Deer Season starts this Friday! The kiddos & I are heading over after school Friday, Toby & family are coming, Rhonda & Larry, and maybe a few other family members. It is always a fun week... yet the traditions have changed now that Cathy is sick. But we are all excited to get together!

Monday, November 10, 2008

"Well, mark this day down on the calendar. It's the first day she didn't know who I was." - Brad

The kids & I stopped by before Halloween to visit Grandma on our way to Iowa for the weekend. When we walked in she came right over to both kids and gave them a quick hug. She glanced at me and then walked into her room. We didn't stay long & she was restless. As we were leaving both kids gave her a hug. They both leaned in towards her & reached back to put her arms around them... Just as Chase did it he then tried to rest his head on her shoulder, and she almost immediately she pushed away. I saw the look on his face... sadness. It just broke my heart! I know he understands that Grandma is sick, but he still longs for those small moments of Love from her. And they are now few if any. Should I continue taking them?? They want to go, but it is just so hard...??..??..??..??

Brad called me last week while he was visiting her, I could tell by the tone in his voice that it wasn't good. He was just sitting in her room, without her. He said, "Well, mark this day down on the calendar. It's the first day she didn't know who I was." He was also heartbroken. Usually she is all smiles when he walks in. But not that day. She just looked up at him & then back at the TV. (in the main TV area) He sat down next to her & she paid no attention to him. So he got up & headed to her room hoping she would follow, as she usually does, but she didn't. After I talked to him he went back out & she took his hand. But it just wasn't the same. Every day is different, but the small moments we hope for are getting few & far between.


Note from Jean 11/4/08:
________________________
Hi Beth
Good to see you and the kidlets
the other night,,,, Halloween was so much fun at the care center,,,,
Barb S. and I dressed up in masks
and costumes to help Cathy and the other residents pass out candy to about 200 kids...........
It had to of been 100degrees in
the main dining room, of course I
couldn't take off my mask as I
didn't want anyone to see how
awful I looked... Cathy just sort of
watched and wasn't quite sure
what was going on, but she sat
with us over an hour, Gayle also
was there, no he didn't dress for
the occasion, but it was fun,,,,,,,
Not sure who had more fun?
Cathy, Me or Barb S. I still try
and visit Cathy at least once a day. Yesterday we played bingo,
yes she won again.... she has
enough necklaces to start a jewel
ry store...... She doesn't even try
to take candy off the cart with
prizes on anymore.... Very vocal
at times during bingo, not sure if
she is sick of playing or just wants
to get going....I'm on my way over
there shortly, I worked the election
polls this morning....Will write more
later,,,,,,,,,,,,,,,,,,,,,,Jean