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