Christmas Party

Saturday we joined Cathy at the Nursing Home's Christmas Party. Cathy was all dressed up for the Party wearing the 'light up' reindeer shirt Aunt Charlene bought her when she was visiting last week & a Santa hat. The nursing home really went all out & it was truly Wonderful! They had a food table with snacks, cheese (this is Wisconsin), & even shrimp! A chocolate fountain with lots of goodies to dip in... the kids ate tons of chocolate covered strawberries! And they even served Wine!! (Thanks to Pete for getting us refills!) The staff kept joking with us that we were the 'Party' table. Jean & John, Pete & Barb, Gayle & Cathy, Brad, the kiddos, & I. Honestly it was hard to eat all those goodies with Cathy watching... a few times she reached out for my glass of wine or one of the kids chocolate snacks. And I had to redirect her to her "thickened chocolate milk" & "yogurt"!!! (I fed her the yogurt and she did fairly well, but the milk just ran right back out her mouth...) I looked at Barb & said, "Do you think we could let her dip her finger into the chocolate?" And she said, "Why not?" So... we let her dip her finger into the leftover chocolate from one of the kids strawberries, and she seemed to enjoy it. And Jean snuck her a few small drops of her wine.

They had presents under the tree for the residents to unwrap. Cathy got a cute blue nightgown with teddy bears on it. We also brought along a few small gifts for her, I had given Brad a small canvas picture of him with his Mom... he decided he would like her to have it so we wrapped it up for her. She picked it up a few times, but then when she would go to put it back on the easel she didn't have the strength to put it back up. (It is very lightweight & only about 5x5 inches) One time she actually stood up from the chair & still had a hard time trying to set the picture on the easel. She has gotten so weak... and that is so hard to watch.

Before the party Gayle took Cathy over to Ryan's place for his daughter's birthday party. They had planned her party without realizing it was the same time as Cathy's. Ryan & his family were able to come by after the party... but by then Cathy was ready to head back to her room. She was worn out. Like she does so often now, she pulled back the covers on her bed to lay down for a bit. When Brad was there a week or so ago they raised the head of her bed up for her... she was laying down & hitting her head on the headboard. And if you sit with her long enough as she rests, she will close her eyes, & you can hear the sound of her breathing... rough & rattly... not a good sign.

It's hard to say whether or not Cathy understood what was going on. Does she realize that it is Christmas? Did she think the party was for her? Does she feel sad knowing what she is missing? Does she see the sadness in our eyes? At times she would smile & make a sound similar to that of a laugh. But at other times she would have that blank "FTD" stare. A few times people she knew would walk by our table and say "Hello Cathy", and she would always give them a big smile as if she knew them.... and she may. Her chin always seems to raise up as she smiles, almost as if her body language is trying to show she knows them... since she is unable to communicate with words.

It was a nice Party... but bittersweet. (Although I am Very Thankful to the Nursing Home for giving everyone such a Wonderful Party!!!!) It is hard to see her like this, and each time it is harder, so hard to comprehend. I keep thinking back to last year & I am so Thankful we Celebrated Christmas in Wisconsin with her! This year she doesn't have the strength to unwrap a gift... the gifts we gave her were in paper bags & I even had to help her with that. As you sit with her you can hear her breathing, she seems to choke on her own saliva at times... as she does this she opens her mouth & tries to cough... but does not even have the strength cough. When she opens her mouth you can see how dry & rough her tongue looks & how her saliva is thick & frothy looking. None of these are good signs & we know that these things are inevitable with this disease... but I pray that she will not suffer with this... not this way, she has suffered enough.

Cathy may not have strength or good health this CHRISTmas season. But the one thing she does have is Family & Friends that Love her! It is so evident. With this she is Truly Blessed!!

Photos

A few pictures from Aunt Charlene's visit...
Aunt Charlene & Cathy, the 3 girls, Cathy & Jean

Girl's Day Out!!

Note from Jean about Cathy's "Girl's Day Out!!"

Hi Beth and Brad
Yesterday we had a girls day out
with Cathy, Barb S. Charlene, cathy and myself, went for a short
ride and then to Wal Mart, we didn't know how Cathy would do
there, but she was wonderful, she
would pick up a few things, look
them over and put right back on the shelf.. Charlene wanted to buy
her a Christmas outfit... Barb S.
went off with Cathy and we did our
thing, Charlene found the brightest
red velour pants and top with a
reindeer shirt with a blinking red
reindeer nose on it. Cathy will
absolutely love it. I have taken home to wash and dry,,, so will take it over for Cathy to wear when it gets closer to Christmas,
even when we were at the check-out she would look at all the gum
and candy but did not touch it at
all... Then we all went back to the
home and listened to someone
sing Christmas Carols. Had a
really fun day...I think Cathy did
recognize Charlene, there was a
sparkle in her eyes and a lot of
vocal noise when she first seen
her, But then back to her TV....
Sure is fun having Charlene here
in town... Wish she lived closer.
Today is Friday and a special day
for Bingo, guess where Cathy and
I will be??? Love to all, JEAN

Note from Jean

Note on Monday, 12/8/08

Hi Beth and family:
Haven't written much lately about
Cathy as it seems to be one day
good one day not so good,,,, Today being Bingo day, we went
down to the main dining room where Bingo takes place, but she
wasn't too interested in it today, like I said, I love Bingo and tried my hardest to get Cathy to stay
put, but she insisted on going around to all the tables and trying
to erase everyone's cards, not a
good thing to do....then she took
off in the kitchen area and we had
a very hard time controlling her,
so I said Cathy, if your going to be
naughty we'll just go back to your
room, she looked at me and smiled!!!! so we went back to her
room, and she pulled her curtains
shut, took off her shoes and then
crawled into bed, before she covered her head with the sheet,
she waved good-bye to me,, Guess it was time to go....You
don't know from one minute to the
next what she's going to do... most
of the time, I just go with the flow..
I love her dearly and Cathy can do
what she wants to and when she
wants to!!!! I'll visit again tomorrow and it will be a new day!!!!!!!! Love to all JEAN

____________________

Brad didn't make it over on Tuesday (his only day off this week) because we had a snowstorm. Instead he stayed home & played in our 8-10 inches of snow! :) The kids had a "snow day" from school... so they were glad to have Daddy home! He has some vacation days next week, so hoping to go spend some time with Mom & take her a Santa Hat! :)

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.

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!

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.

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.

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!

"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

note from Jean today

Jean called me while she was visiting Cathy today... not a good day... she let me say Hello... I said, "Hi Cathy. I Love You." She made a few loud noises/somewhat of a laugh & passed the phone back to Jean. Here is the note Jean sent me today:
__________________________

Not so good today, Cathy could
barely swallow the jello I was
feeding her, she had to struggle
with every little bite.......No very
happy either, she does seem to
like the Lands End slippers i
brought her Sunday. but those are
even hard for her to get on.... I
just don't know I going to
happen in the next month, maybe
week, I wish with all my heart I
could help her....Thank god for
nurses and family...Looking
forward to seeing Brad tomorrow.
I told Cathy that Brad was coming
to visit, she always smiles when
I tell her that. I love watching her
face when she sees Brad coming
down the hallway...She knows you
well I think... Love Jean

a few notes, pics, & thoughts...

I am going to post a few notes from Jean, one from Rhonda, & some pictures from the past 2 weekends. 2 weekends ago we were able to go over as a family, Brad had worked a job in the rail yard all week so he was given the weekend off! (rare occasion!!) And this past weekend the kiddos & I went over. Rhonda & Larry were up as well... the kids Love being there when they are up... they miss having Grandma at the house... & having Rhonda there helps a bit!! When I told Mia we were heading over after we picked Chase up from school on Friday she said, "No! My butt hurts when I have to sit that long in the van!" And then I told her Rhonda & Larry were going to be there and she jumped up & down and shouted, "Oh Yeah!"

On Saturday Rhonda watched the kids for a while so I could go over alone to visit... it is nice to get to spend time alone with her... she does so much better. Jean came at the same time with some new clothes for her... and I brought a few of her old clothes/jacket from home. We got there at lunch time so Jean headed out & let me stay to help feed her. It was the first time I had fed her an entire meal... I had helped with snacks & watched her eat... but not stayed. She can still feed herself but is messy, too fast, & gets too much on her spoon. The kitchen gives her a baby spoon (so less is on it & that helps... but she can still pile it on!), she also gets pureed & thickened foods. She let me feed her about 90% of her meal... but grabbed the spoon a few times when I was too slow or she wanted more sweet stuff and less veggie! (I don't blame her... pureed green stuff didn't look too hot... apple stuff looked & smelled much better!) It was also nice to sit with the staff as they helped the others eat. It is such a strange feeling knowing that they know her much better than I do now... I am Thankful for them... yet sad that I am out of touch with her day to day life. They know what she likes & how she likes it. They can tell me how she has been doing, what her new habits are, how she is changing.

After eating we went back to her room & I put in a DVD of old cartoons... she sat with me for a bit. I gave her a couple photos Toby & Tracy had sent to her. She seemed excited to get them but just quickly touched them and put them aside. I picked them back up a few times & tried to point out who all her grandkids were (Toby has 4 kiddos now!) But she seemed to only focus on Toby, Tracy, & their oldest daughter who is 8... and then she would look away. I am not sure if it is too much info at once or if she just doesn't have that connection with the youngest 3 because of her illness?

The kids & I stopped on Sunday together on our way out of town... Mia had gotten her a Green Bay packers shirt for her build a bear (dog) that we had given her. She smiled & laughed when we got there... but shortly after she lost interest in us & went to the main TV room... sat down & started laughing at cartoons on TV. I was sad for them... yet they seem to be getting used to it.


This week we are babysitting Ryan's lil man... he is 18 months old... they took his big sister to Disney World (poor Brad, I have been begging him to go and now he has to listen to me beg some more... but I know as long as Mom is still with us, all Brad's trips will be to her, & that is ok) so we are staying home this weekend. I am not sure I am up to traveling with 3 kids to Grandpa's house. The kids & I are heading to Iowa on Wednesday for a long weekend (no school Thurs/Fri here)... so we plan on stopping through & spending one night at Grandpa's house. Brad & I have been feeding our nephew gerber snacks & wondered... hmmmm... I wonder if Mom could snack on any of these??? They seem to dissolve well?? So I might sneak a few in with me for her Wednesday night/Thursday morning while we are there. I know she misses her snacks! But we have to be VERY careful about it.

Rhonda & Jean both wrote notes about the Doctor appointment they took Cathy to last Friday. I will attach them below. I think Cathy really enjoyed spending some time with her friends... I am glad she had that moment of happiness. Girl Time. However... after the appointment all of our hearts sank a bit. The doctor said she is in her Final Stages... but it could go on like this for a year... no way of knowing. I worry about Gayle the most... going everyday... exhausting... emotionally & physically. He was able to go out to Colorado a few weeks ago (we doggy babysat for Misty that week!) and visit with Aunt Charlene. I am glad Aunt Charlene was able to get him out there, she is someone he can talk to, someone who knows & loves Cathy, and someone who understands loss & grief - Uncle Bill died a few years ago, and had a long struggle with his heart. Gayle truly enjoyed his much needed vacation... and you could tell when he came to pick up Misty that he was somewhat rejuvenated... he was laughing & teasing again!!! It was great to hear that. But... the stress of it all has weighed him down again. I am sure he would not want to hear me saying that, he is tough & strong and does not want any of us to worry... but no one is superman.

Ok... it is late & I am rambling... so here are a few pics from the past few weeks. The Beautiful Lady by the popcorn machine is Shelly (the activities lady at the NH who keeps Cathy smiling & wife of John, family friend since he was a lil man!), the kids say she makes the best popcorn ever!!! Cathy tried to sneak some... but we got her jello & pudding instead.

Brad helping his Mom eat her snack - pudding & thickened chocolate milk (I know she would wish for coffee & cookies)

Walking on the trail behind the NH... she always has to stop & get doggy bags... even though we have no dog with us most of the time! :) I think I have a ton of them in my car!!

Above - going down the long hall for snacktime

Below - Mia trying to comb Grandma's hair & Chase showing her the new

Packers shirt for her Build a Bear (dog)

Here are a the notes from Jean & Rhonda~

Friday 10/24 from Jean:

Hi Beth and family
just an update on my last few visits
with cathy, things are changing
quite rapidly... She doesn't seem
to care whether I'm there or not...
walks out of the room more often
than usual... Maybe it's because
I have tried going to see her every
other day instead of everyday,
I'm trying to get her used to the
fact that I will be gone from Dec.
20th until early March???? The
nurses say she knows I will come
as often as I can, so its' not a big
deal for her???? I brought her new pajamas with Gayle's money. also I had several new
pairs of lounging suits I gave her,
she no longer likes to struggle
with trying to zip and button her
jeans,,,Also tennis shoes are too
hard for her to put on, I ordered
her a pair of clogs or slippers
from lands end, I think if they fit,
she will do fine with them, It's
been harder for me to take her
down to the dining room also,
she's getting so vocal, and I don't
understand why the other residents get annoyed at that???? I will spend more time
back in her unit on a more private one on one.. The staff
are just wonderful with Cathy,
what would we do without them??? I see Barb S. quite often
when I'm there,,,,Cathy has some
good friends and family,,,,I'll be
going with Gayle and Cathy to her next Doctors Oct. 30th in
LaCrosse,,,, Will keep you posted on that visit when time
comes..........Love Jean
__________________________

Here is a note from Rhonda to add to Jean's note below:

Beth,

Jean and I had a good time taking Cathy to the doctor in Lacrosse on Friday. It was like a girls out morning.

I told Cathy that if she liked to go shopping we could go shopping and then she could have us paged from customer service. Cathy hated to go shopping with Barb Hoyer and I. She would get what she wanted, pay for it and then have us paged to let us know that she was ready to go. Cathy laughed so hard when I said that to her.

Cathy had lots of smiles on the way, once in awhile she would throw in a frown. I’m not sure if that was disapproval of something we were talking about or what. When we reached the clinic she knew the way. We had to stop her from going all the way into the doctor’s office. We had to tell her that she had to wait her turn. She would smile and then waited. I was amazed that she led the way in and then out of the clinic. There is more than what we think going on in her head. She is amazing. Three weeks ago I was sure that she didn’t even remember me. Friday was a totally different story. It made me feel much better that she seemed happy and that she was having a good time with Jean and I.

Have a good day,
Rhonda

________________________

Note from Jean about 10/17 appt.:

Hi Beth and Brad:
Just a little note on Cathys Dr.
appt. last Friday Oct.17th.........
Gayle ended up getting a bad cold.
so Rhonda and I took her & she was not a problem at all, she
showed Rhonda and I the way
back to her doctors office... she
did everything she was suppose
to do for the nurse and doctor,,,
They drew a picture of a box and
then another box inside of that one, Cathy was suppose to draw
the same, first of all she couldn't
hold the pen right at all, so they put
the pen in her hand and she studied it for a second and instead
of drawing the box she wrote box
several times inside the box that
they drew... Then she was asked
to sign her name, after several
tries, she did write her full name.
She couldn't write anyone else's
name this time.... The Doctor said
she probably understands more
than what we think.in other words
be a little careful what and who we
talk about, she remembers for a
very short time, sort of like when
us ladies talk to our husbands!!!!
They don't listen..... Her weight
has stabilized some what... Until
she can't swallow the thickened
food she now is on, she won't
be a candidate for Hospice,, after
the Dr. explained that hospice is
there more for the swallowing and
eating habits, not to care for pers
onnal care... I do understand, but
we just wanted what was best for
Cathy... The doctor said Cathy is
entering final stages of picks, but
could go on for another year????
I feel so for the family,especially
Gayle having to watch her like
this. Also it was mentioned that
Cathy will be easier to handle as
she gets weaker, I didn't quite
understand that.. I think he was
talking about the staff at the NH.

So long for now JEAN...

What It's Like Losing My Mind

I wanted to share this with you... an inside look at FTD. It was posted on the FTD support forum that I am a member of. I asked Tracy for her permission to share it with Cathy's family & friends... and she was honored to be of any help. She is an Amazing Woman & Wonderful Mom. She is 43 and has FTD. Here is her note:

~What It's Like Losing My Mind~

As I now find myself in the middle stages of FTD or whatever type of dementia this is, I find myself losing my mind on a daily basis, sometimes only hours at a time. What is it like for this to happen to a person that use to be extremely independent, organized, active, extremely on top of and ahead of everything in her life? It is shear frustration. Frustration that I say things and within just minutes later, I have no clue what I said and am so determined that I was right and stand my ground. I find that everyone is in agreeance that I was wrong after all. Does it really matter that I was wrong? In some cases it is of utmost importance and in some cases it really doesn't matter. I find myself becoming more compulsive I think would be the term. I have a check list of things that I do daily and I find myself checking it four, five, six times a day, maybe more! I find myself taking a break in the middle of chores and sitting down to take a break and taking a nap, sometimes a 2-3 hour nap at a time. I wake up and its time for my son to come home from school, so I scramble around to make it look like I accomplished my goals for the day as I don't want him to know my shortcomings as they appear to be coming faster lately.

People wonder if I am progressing how can I sit and write this stuff as I am writing to you? Sometimes it takes hours, even days and thank God for spell check. If I mess up at this point I really don't care as I know you all will understand. It is very disturbing to say the least knowing that all of this is happening before your very ears and eyes. What can I do to fix it? Sometimes I feel like there is a hidden camera and someone will pop out and say this was just a joke, only there is no end to this joke. If I say things wrong or don't remember what I said, I really don't what to be told I made a mistake or spoke out of turn, what difference will it make? I won't remember anyway. Why tell me what we talked about earlier in the day? Why ask me about our plans? Just go ahead and I may ask questions but I will follow and whatever happens, happens.

I may ramble but at least I am still communicating so please don't shut me out. Don't quit talking to me because I don't remember or I forget. I still need to hear your voice and feel your touch as my senses are still intact. Though I may appear to be lost at times or confused for a brief moment, give me time and I will come back at least for now. Losing my mind is a complete nightmare, one that I never wake up from. A nightmare that haunts my loved ones with pain having to watch me forget pieces of my life day by day. I have been told by many that I am their hero on this journey of dementia but I am no hero, I am just a person losing my mind one day at a time trying to hold on until I no longer remember what was and what is. A person wondering when I will wake up in another world much deeper than the hole I have been sinking in the last couple of years. It is then that I will have lost my mind.

Tracy

Tracy (Younghope)
FTD, 43 years old
Young Hope The Broken Road

__________________

Note from Jean today:

Hi Beth and Family:
I have been gone for 6 days from seeing
Cathy, (out of town) and I do believe she knew it.. I spent
two full hours there and still had a hard time
leaving, every time I would get ready to leave,
she would close her door or go get the journal
that we write in, just to detain me I'm sure....
We also went down to dining room for music
which she seems to enjoy, the staff and I put
on a show today, we did the chicken dance for
the residents!!!! there was no video taping
allowed....Cathy laughed so hard, not sure if
that's good or bad....Very vocal again, and on
the move....Tomorrow I will go with Gayle and
Cathy to her doctors appt. in LaCrosse, anxious to see what happens there???????
Will write more when we get home tomorrow.
Say Hi to all.......Love Jean

FTD YouTube Video

I found this short YouTube Video tonight on FTD. It is very helpful to explain the basics from a caregiver's perspective. If you have a chance please check it out.




Sorry... you may need to pause my music player in the lower right hand column so you can listen to the video. If the link does not show up here is the cut & paste version:

http://www.youtube.com/watch?v=dP4PoUkVy0U&feature=user

Photos... good memories

Cathy with Maggie (Toby's lab, now the oldest of all our dogs) & Bud (Our lab whom Cathy cared for his last year of life). Bud was teaching Maggie how to beg...
Gayle & Cathy visiting Toby in Colorado
Young Cathy. (I bet she would have Loved Sarah Palin!!) The pic is orange around the corners from surviving the fire they had in the late 70's.
Cathy & Misty as a pup (Thanksgiving 4 years ago)
Ryan, Brad, Gayle (Tiffany), Cathy, (Dusty), & Toby... about 9 years ago
Cathy Grillin... she Loved to Cook! Mmmmm I miss her meals & choc chip cookies!!
Cathy, me, & Brad at a Packers game (Exhibition game in Toronto)
Cathy planting flowers with Chase at her home in Iowa
Just a few pictures that make me smile...

Note from Jean

Hi Everyone:

Rainy, gloomy day here....
Today I called the home to ask
if I could bring Cathy a Chocolate
Shake or malt from Culvers, and
they said by all means, she would
probably enjoy that, and enjoy she
did!!!!!! She said umm with every
bite, I could hardly feed it fast
enough for her... When it started
getting too thin, I went in the kitchen and the staff has a thickener that they add to it... We
finished every last bit... Anyway,
while I'm spoon feeding her, my
thoughts go back to when she use
to spoon feed my Scott. Never did
I think this would turn around........
Supposedly we aren't given more
than what we can cope with, but
I'm tempted to question the lord on
this,,,Why, oh why Cathy.....It's so
sad and hard to see her go down
hill like this...... yet always a smile
on her face when anyone comes
to visit... I will not doubt that she
knows all of us... Maybe because
we show how much we love and
care for her....I'll be there for her
as long as it takes....Love Jean

Inspiring Quotes

I used to think Quotes were overrated... but now I seem to find comfort & strength in them. Here are a few I really Love.

* "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain!"
(Thanks Jodie! Friend)

* "We cannot change the cards we are dealt, just how we play the hand."
-Randy Pausch
(Thanks Brenda! Friend & classmate of ours from Iowa)

* "You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face... Do the thing you think you cannot do."
Eleanor Roosevelt
(Kathy... Wonderful Wife & Caregiver on the ftdsupportforum)

* "The best and most beautiful things in the world cannot be seen, nor touched ... but are felt in the heart." - Helen Keller

Hospice... still waiting & Tough Decisions

Still no definite news about Hospice. It is wonderful having 'connections' in town... Barb & her daughter Jackie know who to call to get help in the community... so now we just are waiting to see if it gets approved. If not... at least we know we tried! And we will try again & again until she gets it!!

Brad got to his Mom's around lunchtime Tuesday... Jean was there helping to feed Cath & he took over. He said she did really well when he helped her... small and spaced out bites helps her so much!! He went out for lunch with Jean & Barb and that cheered him up a bit. Just to talk to people who understand what is going on... instead of having to explain it... spending time with people who care for her. (He passed up an opportunity to go fishing on Lake Michigan with friends Tuesday... I can't remember the last time he spent a day having fun!! But truly... spending time with his Mom while he still can, and visiting with her friends was where he wanted to be!!) He tried to stay and spend time with his Mom... but he said to me, "It is so hard to sit there and look at her... having a one way conversation... wondering if she knows me..." He was comforted by hearing that when she looks at her photo book she is still able to point out who her boys are. When asked which one is Brad... she will point at Brad, which one is Toby... she will point at Toby, which one is Ryan... she will point at Ryan!!! She may not be able to express it... but she still knows!!

Brad then headed over to his parents place to work on a few things for his Dad... cutting down some dead trees & chopping up wood on their land (he smelled like an oak tree when he got home!!). Ryan (younger brother) came out for a while and helped him... Brad was so glad to have had that time with Ryan... they haven't had much time together & he really needed that. They are both dealing with Cathy's illness in their own way... but they both Love their Mom dearly... and they need each other.

He has also talked to Toby (older brother) on the phone regularly. Toby is trying hard to find some time to come back for a weekend. Between his Air Force schedule, their home business, 4 kids, & a 7+ hour drive back... it is difficult for him to find time! We know he wants to be here & that this is hard for him... Cathy is used to him being a long distance away & was always proud of what he was doing. It is hard when they ask us how she is doing... how fast is she changing... how much longer do you think we have with her? It is so hard to say. We don't want to rush him home if the time isn't close... we don't want to hurry him home to see how much she has gone downhill... but yet we dont want to say maybe 6 months and then it only be 1 month and he doesn't make it back before then. I am so Thankful Cathy has her build-a-bear. They still sit on her bed right next to her pillow... even though most everything else is usually put away. She can hear his voice by squeezing the bears hand... Priceless!

Tracy (Toby's wife & my friend since age 4!) has been a huge support for me. We talk as friends & family. Over the past few years I feel like I have drove her crazy talking through my emotions about this... caring for cathy. And only up until recently has she switched from listening & supporting... to asking questions... she said it is starting to hit her more now as well. I am so Thankful that she has listened to me... I am sure at times thinking... lets talk about something else. I have dealt with this disease on the frontline while helping take care of her (& I know if Tracy lived closer she would have jumped in & helped as well!!) & for me I am grieving through the process. But I worry that for them... living 7+ hours away & being unable to see her as often... she is maybe just beginning. (She has gone through a pregnancy & baby #4 throughout this time... her main focus was her kids... as it should be) I think of their eldest child... who is only 10 days younger than Chase. They are the 2 grandkids that will remember the most about Grandma... & that will remember her before she was sick. She is an Amazing girl... so tender hearted & loving... I am not sure I want her to see Grandma now since I see the hurt in Chase's eyes when he sees her... yet, when I ask Chase he still wants to go... so maybe she should spend time with her again?.?. If only we knew what was the right thing to do.

I was in 4th grade when my Grandfather passed away... I remember the night & I remember being so angry with my parents for not taking me with them to the hospital... I remember sitting with the babysitter & staring at the clock. Now as an adult... I understand why they made that choice. But I still wish I could have had one last hug from him. I remember visiting him in the hospital while he was sick (being snuck in since the policy was no kids... Thanks a million to that nurse!). But I honestly don't remember what he looked like then. My memories of him are of him sitting in his recliner... with his Bible next to his chair & a book about WW2... asking me to untie his shoes & laughing his boisterous laugh. I hope Chase looks back on Cathy & mostly remembers the good times as well.

Tough Decisions

(It is hard to think about these things... but it will be much easier when the time comes to have the decisions in place.)

Gayle had some tough days last week. As Dad... he tries his best to not worry everyone & be the Rock... but things are getting harder every day. And just with the mention of Hospice... the reality of it all is starting to really sink in. He has had to start thinking about the inevitable... visiting with the funeral home... the church & cemetery... When we were there last weekend he handed me a pamphlet about the funeral home. He said that they mentioned to him that on the day of/when it is time to make the decisions, that all 3 boys are represented by themselves or by their wives... so they all have a chance to voice their feelings... such as what they want to happen... paul bearers, music, etc... It is hard to make these decisions. Brad & Toby talked about it a bit. Brad tried to talk to Ryan... but Ryan just doesn't seem ready to talk about it yet. Everyone deals with these things differently & in their own time.

I have a CD of pictures made & ready to send to Toby... so he can put together a video of some kind if he is up to it... he is much more computer savvy than I am. (Gayle mentioned putting one of these together... & since I am closer I scanned pictures I found at the house... but I feel like it should be Toby putting it all together) I stayed up until 3 am the other night listening to music. Music seems to help me deal with things... a good cry & is good medicine for me. Songs like the ones I have playing on the blog... and many others that I have on my ipod. Everyone has their own coping devices.

Below I am going to attach a picture I took on Sunday of the kids with Cathy... walking around the NH. And also an email I received from Jean today.

Note from Jean:

Hi Brad.Beth,Mia and Chase
We have finished winterizing our
pool, what a job that was!!!! Took
a couple hours to visit Cathy this
afternoon, in fact ,Mon. Tues,Wed
and Thursday this week, I feel she
needs us more than ever right now, The last two days I've spent
with her she has wanted me to feed her, she puts the spoon in
front of me and leans toward me
with her mouth open, she seems to eat better when we feed her small bites little at a time, today
Shelly told me they are not giving
her liquids,unless they thicken
them, I didn't know they could do
that with every kind of liquid you
could possibly think of.... The
chocolate milk was thick like Jello.
Very, very, VOCAL today....We
played wheel of fortune and she
seems to enjoy just being around
people.. Barb S. is so good about
visiting Cathy as much as I do, and I know she has a job also.....
Enjoyed having Brad around us on
Tuesday. Cathy gets a big smile
on her face when she sees him
coming down the hallway.....I'm
thinking about taking Cathy to our
homecoming parade Friday,,,,I
should see if someone can come
with me probably???? Hope all is
going well for you all....Love Jean

Visiting Cathy ~ Hospice

This past weekend the kiddos & I headed over to spend the weekend at Grandpa & Grandma's. Rhonda & Larry were up for the weekend also and a friend of ours came along as well. I was hoping to get to spend some time alone with Cathy this trip... since usually I have the kiddos with me & that is becoming more and more difficult. Mia just does not understand & Chase seems so sad... although when we have discussed it he still wants to visit Grandma.

Before we headed over Rhonda called me... it had been a few weeks since she had seen Cathy and the changes overwhelmed her. As she spoke to me she was in tears telling me about how weak Cathy is. She was unable to lift the hangers of clothes into her closet. The skin on her hands is so thin now... as if she is an old lady. It is so hard to see her this way.

On Saturday Rhonda watched the kiddos for me so I could spend more time with Cathy. When I got there she was in the main TV room watching I Love Lucy and laughing. She looked at me & looked back at the TV... no reaction. (my heart sank... I was prepared for this... but how can you really prepare for her not knowing who you are?!?!) I knelt down beside her & rubbed her back. She looked at me again. I took my glasses off & said, "Cath, it's me, Beth. Do I look better without these silly glasses?" And she smiled, stood up, took my hand & walked me to her room. I put in a DVD for us to watch (she is now mostly unable to use her TV, she cannot remember how to work it, & has had to have help many times getting DVDs jammed out of the slot. She crams up to 6 DVDs in the single slot)... Pride & Prejudice... of which we have watched together many times the past 3 years!! I slid a chair over next to her recliner and just sat with her for about a half hour. She rubbed at her hands. I noticed how thin her skin was as well. I asked her if she was in pain anywhere & she shook her head no... but then she rubbed at her knuckles. Her hands looked so frail, and her joints looked swollen... maybe her arthritis is bothering her? I took her hand and massaged it a bit. She just looked at me sometimes with a blank look and sometimes with a smile. It is as if she snaps in & out of knowing who I am. Maybe she doesn't know me at all. I feel as if for a few split seconds she does... such a guessing game. It is so frustrating she cannot speak to us... it takes me back to when our kids were babies & unable to tell us what was wrong.

I talked to her... I told her about our kids, our new home, Brad's job, Toby's family, Ryan's family... I tried to talk in short and simple sentences. Hoping that maybe she would catch a few things about what I was saying. (It is so hard to share our joys with her... when she cannot share them with us. For Example: Toby's youngest son just began to pull himself up on his own... he told me this & said how hard it is to not be able to share the joy of it with her.) Then she reached out for my hand and laid it palm up on her armrest. She spread my fingers apart and placed her hand on top of mine and just looked at me. I slid her fingers in between mine and held her hand. She smiled. (My heart broke again... once again wondering what was going through her mind at that very moment)

We sat for awhile longer and then she began walking in & out of the bathroom. (Each time she would get out of her recliner she would sway a bit... catch her balance) She would walk in to the bathroom, stop next to the trash can, face the wall, stare down at her feet, & then walk back out... not turning the light on. Hmmm??? guessing games again??? She did this a handful of times & I thought, 'maybe she needs to go to the bathroom?' So I got up and followed her in, turned the light on, & helped her. She laughed at me, sat down, & went 'potty' (sorry, I have little kids) for quite a long time. She did not have the strength to pull up her pants... so I had to help her with this as well. I thought... 'ok, she did, now it will stop.' But it didn't... she continued to go in & out.

I stayed about an hour and then Jean came with her sister for a visit. Jean was just as puzzled as I was about the 'in & out'. Maybe she was pretending to weigh herself? Maybe it is another one of her repetition things... Jean & Shelly said at Bingo she always covers all the numbers right away, but always uncovers 'O71' if it is on the card!!??!! We didn't figure it out. Then it was lunch time and she was off to lunch. I was thankful for having that alone time with her. Time to just be around her... even though it is difficult.

Sunday on our way out of town the kids & I stopped for a visit. Barb S. was walking Cathy down the hall when we got there. She wanted to go outside... headed for my van... I had the doors locked and she tried to get in and just looked at us. I felt bad that I didn't have time to take her for a ride... we needed to get home before dark, plus with the 2 kids it is hard to take her out now. With the help of Barb we redirected her and ended up going for a walk around the building. (She had already gone for a walk with Gayle, Rhonda, Larry, & Misty (her dog) earlier that day and gotten tired out... but she was off again!) She held the kids hands on & off. When the walk was over she went back to my van again... once again we had to redirect her to get her inside. Once back to her room we stayed a short while and then it was time for supper. When I have the kids with it is hard to make a 'speedy' exit... which is required in order to keep her from following you out. At one point she headed through her unit doors again, setting off the alarm again, & I had to physically block her & attempt to say something that would make her turn back around. It is getting harder to know what to say since I am not around her as much now... but what I said worked "Cath, I have to get the kids home for school tomorrow, & you need to eat supper. Lets go to the table to eat." She went from a cross look on her face & pushing me away to a big smile & laugh... spun around and headed to the table. (She changes so fast!) Barb & I rounded the kids up and headed out quicker this time.

Chase keeps saying to me, "Mom, Grandma tried to kiss me, but like you guys said her lips didn't move. But I know she Loves me!"

It was nice to have some time to visit with Rhonda, Jean, & Barb this weekend. I talked to Barb about the Hospice issue. We have all mentioned to Gayle about having Hospice come in. When he mentioned it at the home they said, "It would be a duplication of services." What?!?! To me Hospice would support the family, relieve the family & friends because they would know someone is available to visit her & help with cares. Plus the staff at the home is great... but they do not have the time to 1 on 1 with her! I didn't understand their view! But I didn't push it at the time. After going to Mayo with Gayle 2 weeks ago he rethought it... it was discussed at the meeting. He has been trying to get her Hospice now but hitting Brick walls again as usual with this disease!! The Dr. in LaCrosse says she doesn't need it yet?? What??? (He hasn't seen her in a long time... he wanted a swallowing study... I might just have to call the office... but I don't want to step out of my bounds. However I have met him a few times & I think he would understand.) And Dr. Boeve says she does! YES! But Hospice is unfamiliar with her disease and not wanting to help out. (What?! Can Hospice turn someone down?? As a nurse I cannot imagine telling someone No!! You just research the disease & become familiar!) And the Dr. in town doesn't want to get int he middle.... ARGH! Gayle has to feel so beat down by all of this! I mentioned what I knew of the situation to Barb & she agreed with me... Cathy deserves Hospice!!! She deserves to have all the care she can get! Things are changing so fast now!

So... tomorrow Brad will be heading over on his 1 day off a week. He is meeting up with Barb & they are going to see what they can do. You would think with how fast Cathy is going downhill she would be a Hospice candidate... swallowing problems, balance problems, incontinence problems beginning, etc... I am hoping that my next update to the Blog is good news... Hospice says Yes... Hopefully!

August - September ~ Tough Times

I have been putting off posting... well, now for over a month. Cathy has rapidly been going downhill & it is quite frankly hard to post about it... each visit is harder & it is difficult to find any humor in any situation/something to make you smile as you think of her.
____________________________________________________
Here is an email I received from Jean this week:

Hi Beth, Brad and family
Haven't E-mailed you in awhile,
just got back from my daily visit
with my buddy Cathy, It sure is
getting harder and harder to visit
with Cathy, she's gone down hill
fast this past two weeks, lost more
weight, needs to have pants that
she can pull up with elastic waist
band, doesn't have the strength
to snap or hook jeans.... very, very
vocal also, I'm thinking she's having a hard time just swallowing
her own saliva???? I did take her
for a walk and then when I thought
she would like a car ride, she walked back into the building, first
time she's did that....But I will continue to visit and help when I
can... Love to all....Jean
_________________________________________________________________

I have not seen her now for over 2 weeks. Gayle & I went to a caregivers conference at Mayo last Thursday. (I am mostly keeping up to date on these things for Brad & the kids at this point... I want to stay involved... in the know about this disease) On my way home I didn't stop to see her as I drove through because I was beginning to feel sick. I struggled with not stopping as I drove past... but felt that was the last thing she needed right now, getting sick. And to be quite honest... I don't feel that she knows who is or isn't visiting at this point. (so I don't feel as guilty not stopping... I don't have the feeling of 'letting her down' or thinking of her feeling sad because we have not came to visit) I know she is in a safe place & getting good care. We were there when she needed us... and now she just needs to be safe. It helps knowing that she has 2 Amazing 'Angels' close by... Jean & Barb S... they both visit her often in their free time and are a comfort beyond words to her & us. Gayle still visits daily (unless he is on the road for work) & we know that Ryan is close by & stops in when he can. The nurses are Wonderful, especially Angie! And Shelly, in activities, is Amazing with her as well... keeping her as involved as she can & caring for her!

I have kept a sticky note in my purse the past month... hoping to add little things to it to put in the blog. One funny story that jumps out at me is when Brad & I took the kids over 2 weeks ago. We were walking out of the home & headed to our van, the kids ran ahead of us & bent down to pick some wild flowers (they had done this the week before & given them to grandma... however they didn't notice she threw them directly into the trash), as we walked by them Cathy tapped Mia on the butt! Mia was stunned & Cathy just shook her head 'no' at Mia and kept walking towards the van. Brad & I just looked at each other & laughed... not alot of those moments any more. One tiny moment that passed where she was still being a 'grandma' & telling Mia not to pick the flowers... or at least that is what it felt like. It made me long for her... long for the Grandma my kids are missing. That day we got ice cream again & then stopped by the house... she fed the birds & sat on the porch with us for a few minutes & then was ready to go back.

Gayle, Brad, & Ryan's family went to the home a week ago for a 'family day'. Brad said it was a bit of a challenge to have her there. She is now in such a routine of wanting to be in the main dining area every day at 2 (coffee or bingo time) that she kept wanting to go in & finally did... sat at the table & waited for her snack & coffee... even though no one else was in there. Cathy's snacks are now applesauce & pudding. She still wants the cookies... you have to keep an eye on her or she will sneak one... and then she is coughing/choking. Meal Time is beyond difficult for the staff... we are told that she is constantly choking & difficult to feed... Gayle was in for a meal last Sunday and said it was so difficult to watch. She is even choking on her own spit.

She still sneaks out of the building... well, the alarms go off... but she is FAST! And they find her trying to get into people's cars or actually in someones car!! One man found her in his truck parked outside... seat belted in ready to go... luckily she didn't attempt to drive away since he had left his keys in the car. ~ Don't get me wrong on this... we are not upset with the staff that she gets out... they are doing their best! Understaffed as usual in the nursing home field & her unit is not a lockdown unit, only alarms... and they have long hallways & not alot of extra help to go chasing her down over & over again. That would be my one wish for that unit... a door that locks with a pass code!!! Instead of just an alarm!! It would give us peace of mind & give the staff much needed rest... plus prevent any accidents from occurring.

Gayle & Ryan have taken her to a few 'Music in the Park' events in town. Which have presented to be a challenge in themselves. We have not been to one with her, so it is hard for me to say how they are.

Family/Care Givers Conference at Mayo: It was a great meeting that would have helped us out tremendously 2 years ago. But, unfortunately most of what was covered we have already experienced in the past 2 years with Cathy. We had to 'learn on our feet' & create our own path... but luckily for the newly diagnosed at Mayo... they now have a bit of a 'light' to guide their way. (HUGE Thanks to Dr. Boeve & his staff for all they are doing to help families in the future!!!!) We did learn a bit about some tough issues: Hospice & Autopsy. Gayle is hoping to get Hospice in soon to help with Cathy. Autopsy... basically (in my unscientific words) from what we gathered if the autopsy shows Pick's disease then the boys have a 50% chance of inheriting the genetic 'problem' that causes FTD... if not, 20% chance of having the same type of signs/symptoms Cathy has. However, Cathy signed her forms stating NO autopsy... but keep in mind she signed these 'after' she was diagnosed with Pick's Disease & not before... is this really what 'Cathy' would have wanted?? Or was it a decision based on the fact that she didn't really think she was sick & felt someone was 'out to get her'?? This is a prime example of why EVERYONE should have their living will, advance directives, etc... done now!!! So their loved ones know their wishes & don't have to struggle with them... wondering... wishing... but knowing it is what they wanted.

We also learned at Mayo that the person with FTD differs from a person with Alzheimer's in the fact that they remember people much much longer, if not the entire time. They may forget names, they may not interact with people in a way that expressed knowledge of them, but they feel the connection with people they are familiar with... even though they do not show it/express it the same way they used to. We have all been struggling with this the past few weeks. Does she still know us? Does she really... or does she react this way when anyone comes to visit?? It is especially hard now that she does not speak. She is still VERY vocal... but just with sounds. ( In fact, it is difficult to take her out because she is increasingly making more noise & louder noise! Upsetting others... especially at Bingo!) When I visit I go back & forth about it... at times during the visit she seems to know me... but then she will just randomly walk out & not come back, I will find her sitting at the dining table. It makes it easier... knowing that she is not sitting there waiting for visitors... but yet do we really know how she is feeling??? If she is feeling anything??? If she is sad or capable of hurt??? ARGH!!! You could go round and round and round... She seems to connect with Chase & our nephew. But not with Mia & our niece... is this because they are boys & remind her of her own boys when they were young?? Or is it because she cared for Chase when he was a baby??

Jean told me this story the other day about a visit she had with Cathy. It was right after her diagnosis & Cathy had told Jean something the Dr. had said to her: at some point she may be running down the streets naked without a care in the world about it. Cathy had told Jean this would not be her, she was too modest to let that happen! Yet... recently Cathy has been found taking clothes off in front of visitors (much to their discomfort!), standing in the dining area in her jeans & a bra... Cathy would be horrified by this. And Thankfully she is not aware, it is one of the only gifts this disease has given her... the ability to not realize at this point what she is doing. Or at least it seems this way.

I know there is much more going on in her day to day life that I do not know... the ones taking care of her now know her better these days... but I am Thankful for that. I want to still hold on to the memories of her... and not just this disease. I don't want to be a caregiver anymore... but a daughter in law. Making the decision to put her in the home was difficult... & the worst day of our lives up until this point. But... as Dr. Boeve told us at the Mayo meeting... you are able to be a loved one again (a wife, husband, son, daughter) once they are in a care facility. You are able to take off the hat of being the caregiver & put back on the hat of being the loved one. You have given them the gift of caring for them. And now you are able to have peace with that... comfort in knowing that for a little while... you did your best... and now you can just be. Be a loved one.

Photos

Below I am adding a few pics of Cathy... they are from my Cell Phone (Lately I tend to forget my digital camera when I need it!) so they are very small. But if you can make them out one is of Brad & Cathy sitting on the porch at the house in September, the kids playing Bingo with Grandma in July, & Mia watching Grandma add birdseed to her feeders in August.



(Note: I have no pics of Cathy with her other Grandkids on the blog... as someone asked me about it. This is not because I only want pics on here with our kids... but because both of my sis-in-laws have asked me to keep their kids pictures off the blog... & as a Mom I am respecting their wishes.)

Church

So many changes have happened this past month... to be quite honest I haven't had the heart to post anything. I will try to post a few things about the past month when I get home later this week. For now I just wanted to share this with you all. This week the kids & I came over to stay. Gayle had to be out of town a few days for work & the county fair is in town. Cathy can see the fair from her window & we were all worried about how she would handle all the commotion going on outside. So between Jean, Barb S., the kids & I... we all did our best to help out this week... by taking her out for ice cream, walking her through the fairgrounds, taking her to church, or just outside for a walk. So far... things have gone much better than expected... all that worrying for nothing!! I think we all were a bit more concerned because a week ago she was more agitated... hit her nurse with her hairbrush! But... a few changes in her meds & she seems to be 'mellow' again. mostly.

Here is what I wanted to share:
Gayle & I took Cathy to Church this morning... not just the weekly service at the home... but actually out to her Church in the country. Today she was laughing & smiling! Such a good mood! She seemed happy to be going! It was the happiest I have seen her in a few months actually. (Thanks to Rhonda & Larry for watching my kiddos while we went! They were up here from Iowa for the weekend to see Cathy & spend some time with Gayle) And for the first time in a long time I actually listened to the sermon & was touched. What I honestly love most about church is the music. And I usually spend most of the time during the sermon reading the bulletin & gazing at the stained glass windows (I was never a good student!). But today he told a story & I want to share it with you. ~ He talked about a man who lost his only son in a car accident. This man was so angry with God. After months of grief he finally went to his pastor & asked him, "Why does God let us suffer this way? Why did God take my only son from me?? He was so young & had so much of his future ahead of him?" He expected the pastor to have an answer... but he just listened at first. (I honestly expected him to say, "There is a reason for everything" or "God has a plan" I quite honestly hate those answers & get upset when people say that to us about Cathy or whenever you hear it when someone else is grieving.) But he didn't. Instead he said that the pastor told this man "God understands your grief and he is there for you. For he lost his only son as well. You are not alone." *Lightbulb* Wow, I had never thought about it that way. God too has grieved. God to understands. God is ALWAYS with you.

It is so easy to be angry. But Cathy was so happy to be in Church. In fact, when Gayle, Jean, & Barb take her to church at the home they say Cathy usually cries. Something inside her is touched by it.

Lately whenever I see the word "HOPE" I tend to walk the other way. When Cathy was first diagnosed it was a word that I found comfort in. I bought a few signs & things that said "Hope" on them & put them around our house. But as the past few months have brought nothing but sadness & further decline... the word has lost it's magic to me. Until today... the sermon touched me, Cathy's happiness touched me, & I have hope again.

More Changes & Note from Jean

I headed up to Wisconsin last week to help Brad get our new home ready. (painting etc..) I stopped to see Cathy on Sunday night & then again on my way back through on Friday morning... it is a little bit out of the way to stop & see Cathy... but I can't imagine not making the trip. On Sunday night she was in bed... it was only 7:30. She smiled at me from under the covers... but she had that glassy eyed look. For the first time I thought to myself, "I am not sure she knows who I am??" She greets everyone with a smile & I remember how my Grandma was when she started forgetting me... you think they know you by the smile... but then you see them greet everyone that way & realize they do not know who you are. But then again, it may be the medicine. Her meds have been increased because of her increased agitation. She has been sneaking outside & at one point 2 weeks ago she attempted to get into a van in the parking lot... and then when the staff was trying to bring her in she took off towards the fair grounds (just next door to the NH). I have no idea how often the staff has to chase her outside... I know they are not staffed for that & that has made us all uneasy. We don't like the idea of increasing her meds... but we know with this disease that it is necessary for her safety & the safety of others. (catch 22) She also continues to have problems with choking... they switched her to a pureed diet last week & she HATED it!!!! (I am sure it doesn't look very appetizing!) I have talked to a few of the nurses (Who once again are... AMAZING!!!) & they share the same concerns that we do... I am sure they don't tell us everything that happens... but we know the basics. When I stopped through on Friday I brought her some pistachio salad I had made for her (one of her favorites) & some puffed popcorn & Cheetos (idea from one of the nurses). I thought these things might be safe for her to have to snack on... since she can no longer have candy bars, cookies, or twizzlers & she Loves to snack!!

I talk to Gayle & Jean quite a bit... you can hear it in both of their voices... things are tough & not getting any better. On one hand she is in good care at the NH and things could be much worse as far as her not settling in there... but on the other hand, the issues with her choking & the 'numbness' from the meds make things harder. Uffda. As Gayle said to me this week, "The last year and a half has been hard... but the next 6 months looks like it is going to be even harder." *sigh*

Toby & family will be visiting this week from North Dakota... I am sad that it is this week, with her declining, but I am hopeful that having them around may perk her up a bit..??..

The kiddos & I are moving out of my parents & up to Gayle's this week also.... until our house is ready to move into. I am hoping to help him a bit with things.

When I was visiting her Friday she had less things packed up again & she also had a coloring of a horse hanging about her bed. I had thought that maybe Toby or Ryan's daughter had colored it for her & was impressed that it was still hanging on the wall! But when the nurse came in she said that Cathy had colored it! (Oh how I wish that she could talk to us again... it is so hard picking up her signals & pointing.)



___________________________
Hi Beth and family, Thanks for the
update on your new address and
phone numbers... Your going to be
one busy person this summer..
Happy your coming to town
for awhile, we'll have a swim party
when you and the little ones get
settled in...I'll be going to visit Cathy in a minute, but nothing new
to report on her... Gayle brought
Cathy over for a bit yesterday, but
she doesn't want to sit very long...
I've been taking her applesauce or
something similar to that as her
treat, no more candy, in fact the
nurses are saying the same... she
chokes so easily now, even on
liquids... I haven't even been taking her to the DQ, I let Gayle do
that...Like I said before life is not
fair......Have a safe trip to Wisconsin..
Jean