Thoughts of Cathy

I can't sleep tonight... so here I am at the computer. Brad took a new job yesterday with the railroad in Wisconsin. This will put us much closer to Cathy & we are excited about that. (although I am VERY SAD to be leaving my family behind. We are not moving only to be close to Cathy, it is just a bonus for us. Brad had actually applied for this job 2 years ago.)

Tonight Brad & I sat here remembering when Cathy & Gayle moved back up to Wisconsin almost 5 years ago. How sad we were when they moved away. How busy Cathy was packing to move home to her Beloved Wisconsin. How Excited she was to be going home. How we felt 'why does she seem to not care that she is leaving us'? 'Why does she want to get away so badly?' And after they moved how odd it seemed that she didn't call everyday. How she seemed to distance herself from all of us. Brad & I called her instead, we traveled up to Wisconsin numerous times & invited ourselves up as much as we could. But we were sad & feeling that she didn't miss us as much as we thought she would. She seemed to have distanced herself from all 3 of her boys... which was not at all Cathy's normal behavior. Looking back... we can see that it was probably related to the FTD. We wonder if she knew that something was wrong with her?

Sometimes I wonder if she ever had those moments that you see in the movies... getting lost driving home, going to the grocery store and not remembering where things were, forgetting important dates & names, etc... I wonder if she was scared & didn't tell us.

We also thought about how Excited Cathy would have been that we are moving up North. And how Excited she would have been that Ryan & his family are up there as well! She always wanted to be back up North with her family!!! And we thought about how she would have driven right down & started packing us up. She was always busy & a fast mover!! She would have had us packed & organized lickity split!

We can't wait to go tell her we are moving to Wisconsin... but will she really be able to feel the emotion of excitement anymore? Will she just stare & look back at her TV? Will she smile & give us a big hug? I hope that even the slightest bit of her is able to recognize that. Her boys are up North with her. That she is Home.

Updates from Friends & Family

Ryan sent us some pictures from Easter. Ryan & Gretchen had taken their kiddos to see the Easter Bunny & they had the most adorable painted bunny faces! They went to visit Grandma on Saturday afterwards & took a cute bunny cake to her. I am attaching a picture they took of Cathy that day while they were visiting. In this first picture she has a 'blank' look, part of the FTD, but I thought it was cute because her bear is in her jacket!




JEAN on 3/25
*We've had some real positive days with Cathy... today we went down to the
main activity room, and had a nice manicure, pretty pink nails!!!! then we went to the ice cream sundae making in the main dining room...
Cathy is getting to be more sociable everyday, it is helping to
get her out of her little space... I enjoy being with her.... Red sweater is all cleaned and packed away for the summer!!!!
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JEAN on 3/23
*well today Cathy, Ryan and I had our first outing at Wal-Mart...and it
went great, for about a week now Cathy brings out this gift card she
has had in her pocket from Nina for Easter, I know Cathy has been
wanting to spend it!!! So today,after talking to Gayle, Ryan and the nurse on duty, they all said go for it.... Cathy really enjoyed it, she
might of put a few extra things in the cart,that we picked out and put
back, coffee,hair coloring etc. but over all it went very well. We picked out 4 new tops, (summer) the red sweater has to retire for the summer) 2 pairs of sweat pants, which she already is wearing. even got new undies!!!!!
It was kind of fun spending some one else's money.... just kidding,,,,
But needless to say, the gift card is spent!!!... I have taken it upon
myself to take home all her winter clothes, and will wash and return
them to Gayle to store for the summer... I also have her Packer
Jacket, you know how hard that was for me to pick up (VIKING FAN)..... But a good day, happy she was.... Hope everyone had a good Easter..... We did....
Love to All ;Jean
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BARB S on 3/23
*Happy Easter to all, Pete and I went to see your mom last night and took her some Easter treats. She took care of those in a hurry. Pete told her to tell me refill please and she did and just laughed. She was in a great mood. Ryan and family had taken her a bunny cake up earlier in the day and got some pictures. i stayed away from the home for about a week because we had been sick and didn't want to give her anything. Ryan told me your dad is sick now. Everyone is really getting hit with the stomach flu and the respiratory in this area. Hopefully your mom won't get it. Hope your families are staying healthy. Take care and love to you all! Barb
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JEAN on 3/22
*Cathy has had some real good days, I've been taking her outside weather permitting, and also we go down to the main dining room , yesterday we played
bingo, she won twice, she was one happy camper!!!!!She didn't want to leave when we were through,,, I got a copy of their activity calendar, and I will try and
do some of these things with her, she needs to be busy.....I'm hoping I can take her for a ride in the country soon, if family and everyone agrees that this is ok.... I
really don't see a problem... I try to stop at least twice aday... the nurses think she seems happier being a little bit busy... have a great day...Love to all. Jean

Snowball Fight! FRESH AIR!!!!

Jean called me on Wednesday. She had gotten permission from Gabe (social worker) to take Cathy outside. It was her first breath of fresh air since she moved in (that we know of)!! Jean, Cathy, & Gabe went outside and they even had a snowball fight! She said Cathy pointed towards her home but didn't try to take off... and she was ready to go in when they did. I am so glad she was able to get out a bit. Still a bit nervous about it, you just don't know how she will react from day to day, but I am hoping to get her out. She Loves Harry Potter movies & I promised her I would take her to the next one when it comes out... we will see...

And Thanks again to Jean for fixing "Build A Bear" again! Toby had to send yet another voice box! She had worn it out again!!!

Tuesday had been a bad day for Cathy. Gayle called after talking with the home. She was slamming her door & showing aggressive behaviors again more often than not. She also cut her alarm bracelet off again. So... they called her Specialist & got permission to up her meds just a bit. (I am glad they did this... I was thinking they should have done it a month ago... but it is their call. They don't want to drug her up... but I think just a bit of an increase is good & I had talked to her Specialist about it when we moved her in)

Hopefully the med increase will help things. Hopefully she will have more good days than bad. It is hard for me to write all the facts in the blog since I am not there... and the staff is Wonderful at the home but I am sure they prefer to tell us the good stories & not the bad! I am still VERY Thankful for the staff & their care. And Very Thankful for all her visitors!!

Cathy may not be able to show her appreciation... but I know she is Thankful & feels Loved. After all, that is all she wants. To Be Loved.

Weekend Visit

Last weekend (14th-17th) our family went up North to visit Grandma... over the river & through the woods to the nursing home we go... (just doesn't have as good of a ring to it does it?)

The kids were so excited to see Grandma & Grandpa! We arrived late Friday night (past Grandma's bedtime) so we just went straight to Grandpa's house. Saturday morning Brad, Mia, & I went to visit Grandma while Chase spent the day with Grandpa. Jean was helping Cathy with a puzzle when we arrived. She was happy to see us & gave us hugs... but Saturday was probably the hardest visit as of yet for us. She was much more distant & her speech was quiet & mumbled, even more than the last visit. I did call Aunt Charlene & let Cathy talk (listen) to her... Cathy mumbled a few things & then just listened for a short bit before passing the phone back to me. I could tell she was happy to talk to Aunt Charlene but she just cannot express it as well now. Once again she had her things packed up & Brad just started hanging them back up for her. (she didn't seem to get upset with him) We left when it was time for lunch. While we were there we ran into Shelly & visited with her also. (It is nice to know that someone we know is close to Cathy most days. Shelly always has a smile on her face & helps boost us with her positive comments!) We did find out that Cathy has been plugging the toilet with TP... she just stuffs it full... not when going to the bathroom, just randomly.?? Brad also took her a Calendar with photos of Labs on it. I wrote in Birthdays & Anniversaries for her... she tried to help me but had the wrong dates for some of them.



Chase & Grandpa went that afternoon and took Misty (dog) along. Chase was happy to see her but got nervous when she choked on her candy bar. He talked about it on & off all week. (We have gotten into the habit of always taking her a diet coke & a 3 musketeers, sometimes red licorice or gum also. But she shoves it right in her mouth... so we have buy smaller ones now)

Later that evening Chase said to me, "Mom, my throat hurts." UH OH We had just gotten the kids over a case of the Flu & thought we were recovering! I checked his temp & it was 101.8. All I could think was... "Oh no! He just went to visit Grandma sick!" So I called the local nurse line & they told me they have an urgent clinic 10-6 on the weekends. So Sunday morning I took the kids to the Urgent Clinic & Chase tested positive for Strep Throat. Mia also was not feeling well that morning so the Doc gave us meds for both of them. They were both VERY disappointed because they wouldn't be able to go see Grandma that day.

I went after lunch & spent a few hours with Cathy. When I got there she was walking out of the nurses area with a diet coke. She laughed & said, "Beth... on fire!" I got a big hug & we went to her room to watch "The Little Mermaid" again. (I had taken the little mermaid in when we moved her in thinking the Grandkids could watch it when visiting... but it seems to be one of her favorites too) Her things were once again laying on her bed packed up & ready to go somewhere. I just let them be. I had brought her an Easter card & basket from the kids. She put on a pair of bunny ears they had given her & laughed. For the next hour we just sat & watched a movie. Every once in a while she would look over at me & smile, walk to the door & look out, or reorganize her things on the bed. A few times she would change the movie & one time she kept trying to take a DVD out & there wasn't one in... it took a few minutes to get her straight with that. But the visit seemed to go well. It is SO MUCH easier to visit with her one on one! I think any more than one person & she seems to have a harder time. Just as I was getting ready to go she unplugged the TV & wrapped the cord around it. I said, "Cathy, Brad is bringing you Pizza tonight, you will want the TV to watch with him." And she plugged it back in. We also called Rhonda quick so she could say Hello. I mostly sat and talked to her, telling her things & asking her yes and no questions. Most of the time her answers were relevent... it is just hard to know how much she comprehends.



That evening Brad took her up Pizza Hut pizza. (and replenished her diet coke supply) His visit went fairly well but as soon as they were done eating she turned her bed down & kept handing him his coat. I think he was disappointed. He really wanted to spend some time with her & she was ready for him to go.

Ryan was up to the house a few times while we were there & the kids were excited to see him again. They kept asking for Cousin Laney! They love to play with her. But Laney was sick & by Saturday night so were they.

So... It was good to see Cathy, but hard yet again to see her declining so quickly. I sat there thinking, she is still full of energy & seems so bored & restless. She doesn't seem to want to get involved with all the group activites. When I was there Sunday a group of singers came & she would walk out & take a peek at them, smile, & come back in the room. I went out once thinking she would stay with me & watch them, but she headed back to her room. (Note to all groups who sing at nursing homes: don't sing sad songs!! They were singing a song that the chorus went like this, "you left me alone, alone, alone. You said you wouldn't leave me." What were they thinking??? I am Thankful that people are willing to come in & entertain but they chose the wrong song for a group of people who feel left alone!!!!)

THANKS!

I wanted to say a HUGE THANK YOU to the D.O.N. at Cathy's home. What she did for Cathy yesterday (I won't go into details for Cathy's privacy) prevented us from having to take her out of the home & to her Doc's office. (we are not quite ready to take her out yet... for fear of how it will go). We are Thankful & Relieved that she was willing to help her.

THANK YOU!!!

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I spoke with Jean this morning, she was visiting Cathy & painting her nails. I also spoke with Gayle a few times this week & she seems to be pretty Mellow when he is there. (more distant each time, but not angry). The home has him signing in & out each time he visits now... to see if her anger throughout the day is in any way related to his visits. ?? Hopefully not, we will see. When I spoke with the nurses this week they said she is doing ok, still on & off, but helping others in her unit & showing care to them. It still remains hard not knowing... But we are Thankful to those who keep us posted & visit her throughout the week!

Caring for someone with FTD

I wanted to share this post below to all those out there that are caregivers, LO (loved one's), and friends. This post was on the support forum I am a member of, & with her permission I am sharing this on our blog. The words struck a chord deep inside for me & I wanted you to feel it as well. It is on caring for a LO with FTD (frontal lobe dementia)
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~In situations like this, the caregiver has to develop the ability to perservere in the face of everything and everyone around them -- often times the only source of reinforcement the caregiver receives is the well of strength inside them that they can draw from, the voice that says "I know this is the right thing to do!" " I know what is going on." "I know my loved one is ill." And the caregiver acts in the face of a reality that reinforces a completely opposite point of view - where their actions are not supported, and in fact the person that they have looked to for support and an alliance in times of need is the person that is undermining their very efforts. The caregiver's spouse, parent or child (the person that is ill) is unable to participate in these efforts to improve the situation at hand, to take care of the illness, or to protect the family (especially your children!)

This requires a superhuman strength and courage that few recognize. To endure the wrath of a loved one that fights every step a caregiver makes out of love. To "accept" the suspicion, anxiety and paranoia a loved one feels for a caregiver who is acting on a loved one's needs for their very best interest. To offer care to a loved one without the expectation, but with the hope of care in return. To feel the betrayal, the disappointment, the hurt, and to get up the next day and keep going.

Taking the keys, arranging doctor visits, finding day care providers, managing day to day.....that well of confidence is so elusive. It will grow over time. It will shrink and return. Hopefully you can hold on to it. I try to!

In the beginning, I tried to decide what kind of person I wanted to be - for myself and for my husband, and then said I would try to make decisions based on that. You are a strong mother, and you are making good decisions for yourself, your family and your husband based on that. It's not easy, and you won't always know what to do, but you can hold fast to that at the end of the day. And that's something.

Michelle
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Caring for someone with FTD is such a heart wrenching struggle. When you cannot discuss the disease with your LO, when you cannot plan for the future care of your LO with their assistance, facing their anger when you make decisions for them, facing their sadness when they do not understand you are doing all that you can do, the list goes on... Having the online support group has been a wonderful place for me. I have met people throughout the world caring for their LO's. Canada, Australia, Italy, New Zealand, UK, & all over the US. We all have one thing in common... caring for our Loved One & how that affects our lives. I have met so many AMAZING & LOVING people whom I pray for every night.

It seems every day someone new joins our support group. It is so sad, to know that other families are just beginning this journey with us. I am Thankful they have found the support... but sad they had to find us.

Grandma...

Our son Chase was feeling sad this past weekend because he was sick & not able to go see Grandma Cathy in Wisconsin. On Saturday Grandpa called us while he was visiting Grandma at the nursing home & passed the phone to Cathy. It may not have been the best conversation in the world, since Cathy repeats everything, but to Chase it meant SO MUCH! I watched him as he talked to her & he had this huge smile on his face, his eyes were lit up, & I had tears in my eyes (in fact I am crying as I type this note... such a special moment for him!) After the call I asked him what Grandma said & this is what he said:

Chase: Are you watching a movie?
Grandma: Movie, on fire.
Chase: I'm sick today.
Grandma: Sick, on fire.
Chase: I will come see you when I get better.
Grandma: Actually, on fire.
Chase: I Love You Grandma.
Grandma: Love You, on fire.

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Next week is spring break for us. I am SO HOPING we can make it up to spend some time with her. We are all missing her so much.

alarm bracelet

I talked to Gayle & Jean this week... Gayle said she had a few good days where she seemed more relaxed. She also cut her alarm bracelet off again.... the nurse said they were going to search her room again looking for whatever she is using to do that. (she is still sneaky!) Our guess is that she is irritated by it more than anything, it is on her ankle & she seems to be frustrated when it gets in the way of her socks. Even when it is cut off she doesn't make an effort to leave (at least that we know of...), so I wonder if we could just get her an ID necklace or wrist bracelet instead, or maybe have her wear it on her wrist? Just thinking out loud...

The kids & I were planning on going up this weekend but Chase has a fever & sore throat... urgh. We are bummed to stay home but he needs to rest & Grandma doesn't need to get sick. I missed a call from Jean this morning... she was visiting with Cathy & called from her room.

I was also looking through pictures tonight & came across this picture... I think Toby took it at Christmas. It made me smile so I thought I would share it with you! :) She loves to watch the birds, squirrels, & deer outside.

Paying the Price

Poor Chase... he had to pay the price for Mom taking care of Grandma Cathy. The principal at his elementary school called me and said he had 3 tardies over the year & needed to stay after school until 4 one day for detention! (he is in 1st grade!) She gave me the 3 dates and they were all days that he had spent the night with my parents because I was either in Minnesota or Wisconsin taking Grandma Cathy to the doctor! (My Mom isn't very good at being on time... a trait that I have unfortunately inherited)

I argued with the Principal saying I didn't want him to be in trouble & feel it was because his Grandma is sick... but she said the rules are the rules. Urgh. So, my Mom sat in detention with him. She felt SO TERRIBLE since it was her fault. They sat in the office and read books together after school. (I am not sure how the school felt about her staying) When the principal came out she even said to Chase, "This won't happen again will it." -DUH!- ARGH!!!! Hello... have some sympathy for the poor kid, his Grandmother is dying for heaven's sake!!!! Luckily Brad didn't go in to talk to her... he was pretty upset.

I am trying to see this from the school's point of view. I know that they have to follow the rules. But I wish they could have made an exception in this case.

But from Chase's point of view... he was staying late because his Grandma is sick. (Mom is gone because Grandma is sick & Grandma Joyce got him to school late becuase he was staying with her) Tough lesson for him.

Quick Update

Once again it has been a while since I have posted... I have been working at ISU and I am not used to a full time schedule again! :)

Brad was up in Wisconsin last Wednesday & Thursday... He spent a few hours each day with his Mom. (I will have him type a note up this week... if he is ever home long enough to do it.) He was also able to visit with the Director of Nursing and the Social Worker about her 'rough days' the past week. He was glad to get to spend some time with her & I also talked to her on the phone.

I spoke with the DON today and we discussed her recent behavior, medication, & info from her Dr. in LaCrosse. She says that Cathy is doing better... still packing her things up daily & still angry at times... but not as aggressive. (She had an incident this past week, we don't know specific details... but it sounds like she got angry with a nurse when she was trying to put her alarm bracelet back on her ankle & pushed her... the nurse was injured in the fall. (!!) When Brad was up there he found 5 pairs of fingernail clippers in her purse! We are sure that she either had them hidden from home or has found them around the home... so we are guessing that is how she got her bracelet off in the first place.) We all know that she will continue to have these good & bad days... it is just a part of this disease. What we hope for is less of the bad days, and that the staff is comfortable dealing with them when they occur. (She also spilled hot coffee on her arm & got a burn... she snuck into the room the coffee was in, the staff had been trying to prevent her from getting hurt... she is SO fast!! It is impossible to be able to watch her at all times so we are not surprised this happened.)

We continue to be SO HAPPY that Gayle is able to visit. Often he takes Misty with him as well. He did say that many times she has things packed up & her coat on... it is very hard to leave her when she is ready to go home. The other night he was able to get her to put her clothes away by telling her they might get wrinkled in the bag.

Note From Jean 3/3

Note From Jean -
Have gone to see Cathy everyday
since I've been back (Saturday) Today (Monday) John and I both stopped for just a minute, was she excited to see John, lots of kisses, then she looked at all that facial hair and started laughing so hard!!!! John said maybe he should shave it off!!!! After school today I asked Whitney and Taylor if they would like to see where Cathy lives, and they did, she hugged, kissed them so much, I didn't think she remembered them that well,but they were excited for Cathy to see her so happy. first time ever she acted like we shouldn't leave..we stayed a good
half hour or so..A very good day for her.. I feel so good when I see that she's happy... Hugs and kisses to all of you....Jean