Moving Day & Day 2

Last night I was exhausted & didn't update the blog... Thanks to everyone for the calls & well wishes yesterday & today!

MOVING DAY ~

Cathy, Brad, & I loaded the car up yesterday and headed up to Wisconsin. We soon realized the reason that she was so willing to go with us was that she thought we were going to Rochester to see her Mayo Doctor. She kept saying "63", the road you turn onto off of I-90, and "Dr. Boeve"... Brad & I just looked at each other thinking, "this is going to be a fun day!" Just as we passed the off ramp for 63 and she gave me a confused & angry look our van died... ??? our 6 month old van died for the first time just a few feet from missing the exit Cathy wanted us to take - what are the chances of that happening??!! I coasted to the side of the Interstate & Brad took the wheel, the van restarted & off we went. She seemed to have forgotten about it... UNTIL....

We switched driver's at the gas station in town, I didn't want her mad at Brad for pulling into the nursing home, I would rather have her mad at me. The minute I started to turn in she knew exactly where we were going. She was angry, yelling, "Actually, On Fire!", & pointing to turn around. Luckily Aunt Charlene was here from Colorado and had picked up McDonalds, she was waiting in the main lobby for us. We pulled up & Cathy was upset... but then confused seeing Charlene standing at the main door. I truly think the only way we got her out of the van was because Charlene was there! Cathy was angry & confused, she looked from me to Brad to Charlene. Then she started walking towards Charlene & she got her inside by telling her we were going to eat McDonalds there... she just followed her in... with a confused look on her face. The social worker met us in the lobby & took us down 3 halls (a bit of a maze... but that will make it harder for Cathy to sneak out) to the special care unit. She lead us to her room (freshly painted & very nice... Thanks to the staff that came in & did that on Saturday!!!) and.... then it began.

Cathy was upset, I don't blame her, I would have been confused & extremely upset if it was me. Moving into the nursing home you have known since you were a child... yet knowing you are only 53... her biggest fear! With this awful disease she knows just enough still to understand what is going on... but not enough to reason with her. The staff was prepared for us... it seemed that they had someone there representing every department. While Cathy yelled, slammed her picture book down, punched her picture book, paced around, elbowed Brad trying to get out of the room, gave us dirty looks, yelled some more, whacked me on the head with her name bracelet, etc... the staff remained calm (THEY WERE AMAZING!). They filled out some admit forms, her dislikes & likes for activities and meals, meds, etc... They brought in a hamper of laundry for her to fold, I honestly didn't think she would, in fact I pictured her tossing it on the floor in anger... but... she started folding! It was the perfect thing for her, she folded fast & slammed things down hard once they were folded, it distracted her and kept her busy so we could talk. Her friend Barb S. came and after that everything just became a blur to me... I don't honestly remember what happened next. At some point the social worker recommended we leave and wait in the lobby, giving her a chance to settle down & see how she would adjust. This was the HARDEST part of the whole day. Watching Brad sneak out of his Mom's room without saying Good Bye and without being able to give her a hug. HEART WRENCHING! He made it out with Barb, then me, then Charlene... & then we waited.

I could tell the staff was nervous, I honestly don't blame them... they don't know her yet & they don't know how kind she truly is. They don't know that she wouldn't hurt a flea on purpose. All they saw was an angry person being very aggressive. Luckily we know a few people who work there. Shelly (John's wife) works there & just seeing her smile helped so much!!! Having Barb there was also a big comfort!

So we waited... they came down a few times & told us she was beginning to settle down. They let her out of her room & she circled the main area and walked towards the only door out... the nurse blocked it and said no... & she didn't fight her, she kept walking. (PHEW!) After a while we finally felt comfortable enough to come home.

I called at around 8 last night to see how she was doing... the nurse said she came out and ate supper with the other residents & then headed back to her room. She was just doing her own thing in her room, most likely opening & closing the curtain, rearranging things on the table, any little thing to keep her busy. They brought her a snack & she seemed to be settling in.

Last night was the most miserable, heart wrenching, painful night of my life up to this point. Emotions were running high. Watching Brad was the hardest part of all. He felt so alone. Having your Mom look at you & feel as if you were letting her down... I can't imagine that pain. He wanted his brothers with him. Toby was there for support by phone when we got home... I can only imagine how hard it was on him also... being so far away & not able to come home to help.

Having Aunt Charlene here was like having an Angel here with us. We couldn't have gotten through it without her. We would have, but it would have been even harder. She flies home tomorrow morning & we cannot express our Gratitude to her in words. Only say "THANK YOU from the bottom of our hearts!!"

Gayle couldn't be there either... Cathy is still SO ANGRY with him. We don't know exactly why & she hasn't ever been able to explain it to us. (Her anger with him started after she lost her communication skills.) We couldn't risk him angering her more. And staying away yesterday & in the future is going to be hard for him also. Hopefully at some point her anger will dissipate & he will be able to visit. Time will tell.

A HUGE THANKS to my parents. Our kiddos are staying with them this week. They are feeding our dog, running errands for us, & caring for the kids. Just knowing they are supporting takes a huge load off our shoulders so we can focus on Cathy. Also Thanks to Angie for watching Chase tonight for Scouts. Thanks to Lynn for caring for the kiddos & picking Mia up from Pre School. And Thanks to Barb H. for bringing us supper last night, it was so nice to not have to worry about it!

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DAY 2 ~

We made it through the night with no calls from the nursing home. (PHEW!) I called in after breakfast time and they said she was doing "WELL!" It was like night & day!!!! She was PLEASANT & SMILING!! We had told them how much she loved her morning coffee so they brewed her a pot & she had coffee, ate breakfast with them, did an activity (made a necklace!), and was adjusting well. HALLELUJAH! We were finally able to relax a bit... yet still too nervous to relax too much... but HOPEFUL that things would continue to improve.

At around 1 they called & said we could come and visit. (Originally we had discussed with them not visiting, hoping that would help her adjust. It was SO HARD to not go see her, yet we knew that it was for the best.) She had been starting to get anxious & restless... UH OH... and Gabe, one of the social workers, asked her if she wanted to see her son & she had said Yes. So we excitedly, nervously, & hopefully went in for a visit. Gayle had bought her a new TV yesterday so we took that in along with a bunch of her favorite DVD's, so more clothes, her robe, Diet Coke, 3 musketeers, her favorite gum, etc... Brad headed down first while I waited to give them her clothes for labeling. He said when she saw him coming through the double doors she bolted out & headed straight towards him... setting off the alarm. She was so excited to see him & the new TV! Once I got down to her room she was so HAPPY! She was in her nightgown (not dressed but comfortable) and showing off her new TV.

It was almost like she had forgotten about yesterday & she had been there for days. She kept pointing at her arm & saying "Shot" and smiling. I realized that she had gotten her TB test & she had thought it was the shot she had been hoping for from Dr. Boeve, the #9 shot she had talked about for the past year. The shot that she thought was going to make her better. I acted excited for her & explained it to Brad. We went with it. She was happy. (it is hard knowing that's not what she really got, but just knowing it gives her hope... it is worth it)

Brad & I stayed about 3 hours. We were still on guard and waiting for her to get upset. But she never did. The look in her eyes was relaxed & happy. She was giving us kisses and hugs. I sat next to her on the bed and she would lean over and laugh & kiss my cheek. She patted my knee. She gave Brad hugs & kissed his cheek. It just wiped the stress right out of him. He was smiling again. Cathy said Chase a few times & I told her I would bring the kids up in a week or so. I told her they were in school and she just smiled & shook her head yes.

Her friend Barb S. stopped in again. And we took that opportunity to leave. We gave her hugs & said see you tomorrow. And she was okay with us leaving!! Wow, what a difference. Being able to hug her good bye was so wonderful. We would like to take Misty in for a visit. And I am hoping the other residents will like seeing her dog also.

Here are a few pictures I took on my cell phone today... One of her smiling & one of her bed with her Build-A-Bear in it.





I am hoping tomorrow will go as well as today. If it does I will actually be able to go home & feel safe about leaving her here. Finally be able to take a deep breath. And Brad will be able to head back to work without the weight of guilt as heavy on his shoulders. Knowing his Mom is doing ok & in a safe place.

Weekend at home

Just a quick weekend overview.

Brad was home all weekend. He talked with his supervisor & union representatives and finally got his April Vacation moved to single days that he can take starting today. HALLELUJAH! Thankfully he is going to be able to be up there this week.

Cathy's Niece Nicole drove all the way from Salt Lake City yesterday. She spent the day with us today... she took Cathy out for a walk & took Cathy to Wal-Mart shopping. Cathy did really well... she was laughing and very receptive with her. You could see the connection was still there.



Rhonda & Larry stopped by this morning, they brought Cathy an angel, orange candy, & some photos from their trip to Colorado. Cathy was so proud of the angel... she kept showing it to everyone today.

Yesterday Brad was looking out in the backyard & pointed some deer out to Cathy that were across the river. She got excited and said, "Gun." And started to go find one. He just started laughing & said, "Mom, it's not hunting season!"

I pulled up the Classic Rock section of my itunes again tonight... & we danced around the kitchen. Imagine this: Cathy, Nicole, Mia, & I... rockin to Black Betty & Steve Miller. She laughs, smiles, & shakes her butt to the music... Good Moments to remember!

It was a really good day today... and then... we discussed ways of breaking the news of going to the care center to her again. (in all honesty, how are you supposed to handle this??? does anyone know?? do you prepare her... do you just spring it on her... how do you respect her feelings???) So... I "doctored" the care center's pamphlet with information on Pick's Disease & how they "care" for people with this disease and put her Doctors picture on it... since we know that she trusts him. We had hoped that would help... but... when she saw it tonight... it didn't. She just can't seem to put the 2 together. She understands enough to be upset... but not enough to be able to reason with her. (ARGH!) So after she saw the pamphlet she started getting angry again, shaking her fists, yelling "Actually, On Fire!", & slamming her bedroom door.

I was talking to Toby on the phone... he is out in the DC area for Air Force TDY... & he heard her yelling. I know it was hard for him, being so far away & helpless. He has been very supportive to us this week.

I packed the kiddos up tonight for spending the week with my parents. They heard Grandma yelling before we left... on the way to town we talked about it. I asked them if they have any questions or worries. Mia just said, "Grandma is mad at Daddy, but not at me" and Chase said, "Grandma's Brain is sick Mia, but we can't get it from her." I think they understand as much as they can. But I can tell that it is getting harder on them also. I am glad for the chance for them to spend a week at my parents house.

Aunt Charlene flew in to Wisconsin this weekend also. She will be meeting us at the care center tomorrow. (big sigh) I hope it goes better than I am expecting. Cuz... I just don't know what our Plan B will be.
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Below are some pictures from our week. Grandma in her new outfit with the kiddos. Cathy trying to help me with the laundry (we went through an entire container of Tide HE in 10 days... for 110 loads!). Cathy's stuff out by our van... I had the van locked & it sat out there all day. (sometimes being carried back in... but then right back out)

Trial Period...

Well... Brad, Cathy, & I drove home this afternoon through a snowstorm in Minnesota after a long day! Brad drove 45 mph most of the trip & Cathy actually slept through part of it, it was a long morning for her also. (We actually passed Ryan & his family, they were heading up to Wisconsin for the weekend and we were heading home. Cathy waved across the interstate)

The minute we pulled into the lane at the Care Center she knew... she started shaking her head no & pointing to go back out. I don't exactly remember how we got her inside... but we did. Luckily when we walked in the door her friend Barb S. was in the lobby (HUGE THANK YOU TO BARB!!! She was such a support & life saver today!!) The meeting seemed to start off fairly well. Cathy brought in her notebook & was showing the social worker pictures of her family & Misty. But when she realized he was filling out paperwork about her & he started to talk about her room... things went bad quick. She showed her anger towards Gayle, shouted loudly, shook her fist, & slammed her notebook on the table and her lap. (I almost broke down crying... I am sure my shoulders visibly slumped & I let out a big sigh) We tried redirecting her & it only helped short term. Honestly, after all the emotions of the day, I don't remember exactly what happened or what was said. At 2 different times she got up and walked out of the conference room, I let Brad go get her since she listens to him so well. You could see the nervous looks in the eyes of the nurse & social worker. And the nurse started saying how they have to look out for their other residents. We tried to explain that all of her anger is towards Gayle at this point & that we feel she is safe towards others. How loving & caring she is.

Luckily Barb was there so she sat with Cathy while they gave Brad & I a tour of the building. At this point we had a chance to talk to the social worker more about the disease, the behaviors, & her. I kept asking for a chance... just a few days to try it out. He said he would call us after they discussed it. I truly thought they were going to say NO. But they called & offered us a 3 day trial... similar to respite care. So on Monday we go in for that. sigh. (I really think that the social worker opened up his heart... because the nurse seemed nervous... I am SO THANKFUL for whatever happened!)

We got back to the house & she was upset. When Gayle came home a few minutes later she was VERY angry with him... angrier than I have ever seen her. (I can only imagine how she is feeling inside right now, & can understand her anger because she cannot understand what is going on.) Brad & I both had to get in front of her and keep her away from Gayle. At one point we were all trying to explain to her that we loved her, we were only doing what we felt was the best, that she had to trust us, etc... Gayle broke down. Brad & I broke down. She just kept glaring & yelling at us. We all wanted so badly for her to understand... to understand that it is not safe for her at home anymore, that the care center is the safest place & if she shows anger she can't stay there... that if she can't stay there that things could be even worse. At the care center more family & friends can visit, her dog can visit, & we can take her out if things are going ok. But she just can't comprehend that anymore...

Brad sat down in front of her & talked to her for quite some time. He worked his magic & she settled down. Basically... he told her this, "Mom, Dr. Boeve (her Mayo Dr. that she trusts) wants you to go there, they are going to try and help us, they are going to help us fight this disease. Will you help us try?" She agreed and settled down. SHE EVEN WENT OVER & KISSED GAYLE ON THE CHEEK!! AMAZING!! (which brought us all to tears again!)

So... hopefully Monday she will still agree with this plan. Aunt Charlene is flying in from Colorado to be here. Cousin Nikki is on her way from SLC to visit this weekend. Jean is flying home from her Florida Winter for a week to help out. And I know some other friends & family will also help out as the days pass.

I am emotionally spent... I feel like all the bones are gone from my body & I could just melt to the floor. Brad just fell asleep on the couch while the kiddos are watching a movie. So... Good night everyone.

FRUSTRATED!

So... Brad, Cathy, & I are headed up to Wisconsin in about 15 minutes. She has an interview in the morning at the Care Center. I am a bit (more like alot) frustrated because the past 3 days I have made over 15 phone calls to 3 different Dr. offices, calls to the care center, a few faxes, & calls to family and friends. We were under the assumption that once the paperwork was recieved they would take 30 minutes to review it and then call us to let us know if she was accepted. But... they called this afternoon (after dealing with them a month & telling them it was Pick's Disease) to say they needed to interview her. They were not sure if they could handle her disease..... URGH! This would have been nice to know before we did all the paperwork & put all the Dr. offices through all the forms. (Thanks to all the nurses & Docs who helped us out! They were so nice & helpful!!)

I am afraid the interview won't go well. She knows the place & the minute we turn in the lane she will not be happy.

And... if they do accept her she can't move in tomorrow. We have to go back up next week to move her in.

So... I just needed to vent this out. I can't imagine how an 80 year old spouse deals with all of these loop holes!!!! I am having a hard enough time with it all.

Thanks!

I wanted to quickly way THANK YOU to a few people who have helped me get through these past few days... which in turn helps me have patience & understanding with Cathy, giving me strength

Thanks to:

Rhonda for stopping & calling & emailing & all the yummy snacks!
Jean for calling & caring... even from Florida!
Charlene for calling & always being willing to help... We are Thinking of You!
Tracy for listening again & again & again
Toby for listening & understanding
Mom for helping with Cathy and the kids & listening
Grandma Gladys for great advice
Angie for being such an Amazing friend!
Marty for checking in & being a protective & Loving Uncle
Nicole for listening & offering help
Jennifer - for calling tonight & giving me the best advice, talking to someone who knows exactly what we are going through is priceless! (We met her at Mayo... her younger brother has FTD! Yes... you can get it as young as 17, 26, 32...)
Gayle for being there exactly when I needed you & for understanding.
FTD support forum - my new worldwide friends that have given advice & support
Roxanne - for caring for our dog since Christmas! So she is in a safe home!!!!
And to all the family & friends who call, send emails, cards, & prayers.

*The next week is going to be so hard for Cathy. I hope & pray you will all keep her in your thoughts & prayers. I hope that it will go smoother than I expect it to... And I hope she knows how much we LOVE her!

Part 3 - Nursing Home

I like the word Care Center better...

I talked to Gayle today & the paperwork is rolling. I have phone calls to make tomorrow to get the H&P and PPOC faxed. I have spent lots of time on my support group forum, talking to family & friends, & praying about this. And I have finally come to Peace with this decision. It is time. Time for her & time for us.

Since talking to Gayle on Friday night I have been able to feel a huge weight lift off my shoulders. I finally have patience, I am laughing with her & the kids again, & I don't have a terrible knot in my stomach anymore. (Or... it could just be from drinking lots of Riesling & singing Karoake at Mom's night Saturday... Thanks Brad for watching the family so I could finally get out again!!)

If the paperwork goes as planned...?!?... then she will be moving in next week. I know that this will be extremely difficult. I have NO IDEA how we are going to handle this yet. Part of me is excited to have my family/house back, part of me is devasted to see her move away, & the rest of me is numb to it all. I don't think any words can express the emotions of it all... you can only know it if you have been through it. I know some of you understand, & I hope the rest of you never have to.

I talked to Chase a little bit about it tonight. We talked about how it is a place like where his friend Tom lived (a family friend we used to visit often here in town) & that we can go visit her in her new & 'Safe' home. The first thing chase said was, "Mom, we have to tell them Grandma likes Pizza!"

Part 2 - Safety

Saturday & Sunday were Awful! They have honestly become a complete blurr to me. What I mostly remember is that she started getting angry with Brad. Yelling at home the way she yells at Gayle. He said to me, "If she is yelling at me like this, and I have shown her nothing but Love, I am now worried that you & the kids could be next." FINALLY... he is starting to see the big changes. (Saturday night was Mom's night out for me... the first one in MONTHS! Just before I left Brad gave me a hug & said, "I'm Sorry." I know he is hurting & probably still upset with me... but just those 2 words helped me see that he is beginning to see what I see.)

On Sunday morning when Brad got up he found her outside our front door! Stuck outside in the -10 degree weather! We have no idea how long she had been outside!! She was standing at our north door, pushing the buttons on our automatic lock... it was going beep beep beep beep, she was saying, "Come Alive, On Fire!" over and over again, & shaking the door knob. When just around the corner... only 4 feet away was our main door that was unlocked! She couldn't even think to try it. She was not wearing gloves or a hat, only a coat. Her fingers & ears were freezing!

Rhonda came over Sunday morning while I was at Sunday School... when she first came Cathy was doing ok. But Brad said she quickly began to get upset again & Rhonda witnessed her anger also. We had friends over and they were helping make breakfast in the kitchen... that seems to be what might have set it off.

When I got home we were standing around talking and I looked over to see her with a lighter... she was holding it to one of our battery operated tealight candles... trying to light it!!!!! It was melted! I grabbed it from her and said, "No!" She just started laughing & tried to take it back and do it again. She had absolutely no clue what was wrong.

So last night I thought, I will sleep on the couch so I hear her get up. But luckily Brad only went to work from 4-11pm so he was back home again. We tied some bells to the child gate in the kitchen... thinking that would wake us up if she got up. NOPE! When I got up with the kids this morning the gate was open, her foot prints were out in the snow from the north door to the garbage & back, & she was sitting in the living room in the dark with 2 cups of coffee (she seems to usually have at least 2-3 cups around the house plus a few waters). The TV was off & when I tried to turn it on it was messed up again. URGH. Gayle has spent hours on the phone with his Cable provider fixing his remote over the past year.

So... tonight I will be on the couch. If I even sleep.

Part 1 - The Breaking Point

Well... Friday was the day... the day that I finally decided I had reached my point of "exhaustion, frustration, no return." Imagine this: the game on Price is Right where the mountain guy is climbing up the mountain while they play a yodeling song in the background. Each time he passes a number it is like moments that have happened to us since Thanksgiving... and then... he reaches the top... & you know he is about to fall off the cliff. That is where I was Thursday & Friday.

After picking the kids up from School Friday we came home. Mia was dancing to her "Bella Dancerella" DVD and waving her Princess wand around and Cathy started yelling at her, "Actually, On Fire!" She yelled it twice while pointing her hand at her... her voice was so full of anger & almost hate (like when she has been yelling at Gayle in the past). And that was it. I snapped (for the first time throughout her whole illness with her), like a momma bear protecting her cub. I went right over & got in her face. I pointed my finger right at her face and I honestly don't remember exactly what I said other than, "This is my house & I am not going to let you treat my child that way!" I knew deep down inside that Cathy would never yell at Mia that way in her right mind & I knew that she wasn't understanding a bloody thing I was yelling at her... but I needed to do it, I needed to let it out. (Yes, for those of you that know me, I yelled like my Father)

As I was yelling I saw the look on her face & quickly turned what I was saying into, "I Love You" I pointed from me to her over & over again, repeating those same 3 words. And then I added the "But" if you are going to get angry like this... I can't allow you to stay with us. I have to put my kids first! There... I said it. The kids were just staring at me... Chase said, "Mom?" I was shaking & I realized that I had reached the point of no return. The point I didn't think I would reach this soon. UFFDA!

So... Luckily Gayle was on his way to our house & I knew he would be here any minute. I went into our bathroom & called my Sister-In-Law/Friend since we were in Pre-School... I told her what had happened, I cried, & I told her I knew that I was at that point. She understood.

Gayle & I sat up that night and discussed it. I told him I was disappointed in myself. I truly thought I could do this longer. But... I just can't. For my kids, for myself, & for so many reasons. My good intentions of helping... were at their wits end. He completely understood. He has been there. He knew that I would tell him when I reached the same point also. And I had.

But... Brad is a different story. His reaction to me was not the same. I won't go into details on here. Afterall, it is his Mom. I have no idea how I would feel if this was my Mom dying of this awful disease.

I talked to Toby & he planned to have a family meeting - which was over the phone talking to everyone one at a time. He understood... He doesn't want to see her in the nursing home either, but we all know it is the next step. And he doesn't want her here if things are not safe here. He is supportive & easy to talk to as usual. Thank You Toby!

An "Off" day!

Today was... an "Off" day! I felt like I had a shadow following me everywhere today! When I was working at the computer she sat in the dining room and watched me, sometimes standing behind me reading random words. At one point she walked past me and lightly hit me on the arm.? (I don't think she likes it when I am on the computer) When I worked on laundry she stood behind me. When I folded clothes she kept pacing from the living room to where I was folding... just watching. When I sorted papers she stood & watched me and kept picking them up and shuffling them around... ARGH! This morning I woke up to our old coffee pot (that was in storage in the basement) in the kitchen ready to brew coffee... while our new coffee pot was unplugged and sitting at the end of the counter. It was VERY cold here in Iowa last night & I had brought our outside dog into the garage into his kennel... when I went out to let him out a 7am she had fed him in his kennel with one of my new pampered chef bowls, which he had since chewed up. Even when I went to the bathroom I had to lock the door, she would come and try to open the door. She also had packed up everything & put it by the front door again. Everytime I sat my cell phone down she would take off with it and plug it in.

Tonight... at 6 she headed downstairs and changed into her Pajamas. She then came up and got Misty and pulled her by the collar downstairs. When I went and checked on her she was in the bedroom downstairs going to bed????!!!! She hasn't slept in our downstairs bedroom since August! I knocked on the door (she had locked it) & she opened it. I asked her, "Cathy, Why are you sleeping down here?" (I knew she couldn't answer... but I just needed to say it) "Come sleep upstairs in your room." She shook her head no while mumbling, "actually, on fire." All day she had been saying, "Wisconsin". I asked her if she wanted to go to Wisconsin and she shook her head yes.
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Yesterday I talked to Dr. Loepfe's nurse about Cathy's meds. (Gayle filled her Seroquel and for half of the month it cost $250!) We really weren't sure that the Seroquel had made that much of a difference, we hadn't noticed any obvious changes with it. The Trazadone increase seemed to have helped the most. So... last night we decreased the Seroquel from 4 pills to 3, maybe that is what threw her off today. Hmmm...

So... sorry for the venting post. I guess I feel a little Bonkers today! Hopefully tomorrow will be a better day.

Aphasia & other updates

On Monday Cathy & I headed back up to Mayo again for a Speech Therapy appointment. I have to be honest with you... I really thought it was going to be a waste of our time & I wasn't exactly thrilled about driving back up again so soon. But... we went. And I am now so Thankful that we did. The Speech Consultant that we saw was absolutely WONDERFUL! She was so patient & understanding with Cathy. She has a history of working with patients with FTD and she was very knowledgeable about our situation. (It is always nice not to have to explain Cathy's illness to someone. You almost feel like you need to hand out a 3 page information packet.) She explained that Cathy was suffering from Aphasia, a word I had heard before but was not completely familiar with. *Aphasia is: the impaired ability to comprehend or express language in its written or spoken form.* I watched as she gave Cathy a series of tests. It was so interesting to me & helped me to better understand why Cathy has such a hard time communicating with us now.

These are some of the tests: She was able to read single words without a problem... but she was unable to read complete sentences. She was able to recognize about 2/3 of the pictures in a picture book, but when she showed a picture of something happening she was not able to say what it was, she was only able to point out certain items in the picture. (Example: kids sneaking cookies out of a cookie jar, she could only say cookie, but could not say what was happening) She could write her name, she could write simple words, but not complex words or sentences. When she was asked to tell something about herself she could only look away. But when she was asked about something she liked she was able to say, "Dog." She was able to point out shapes & colors but unable to do tasks such as, "put the purple circle on the green square." She was able to follow simple instructions when spoken with few words but unable to follow complex instructions or read instructions. Many more tests were done... these are just ones that stood out to me.

I asked her about sign language & she said that would not work for Cathy due to the areas of the brain her FTD is affecting. She recommended we put together a picture book (I had started one a few months ago... but never finished it, but I am working on it now). She also said to keep what we say to her in the simplest of terms, using only a few words. She said she may only be hearing 2 of the words you say in each sentence. For example if I say, "Cathy, I think it is time for you to go take a shower now." She may only hear, "think & time." So I should just say, "Cathy, it's shower time." And the key to all of the communication is our gestures. We need to be using as many as we can. And of course... Body Language is very important.

Brad & I had already been doing alot of this. But it was good to hear her say it & it just reinforces that we need to keep working on it.

I should tell you about how our morning went before the appointment. I want to start out by saying how "Happy" Cathy has been since she came back to us last Thursday. I have to admit on Thursday night Brad & I had a big heart to heart. I was feeling very overwhelmed, worried, nervous, & scared. I was mostly worried about when I have to say to Brad, "I think it is time... time to move her into a home." From Thanksgiving until last week she had been more agitated, frustrated, & restless. And each day was getting harder & harder. I don't know exactly what has changed to make her Happier again... if it is just the stages of her disease, if the medicine is helping, if having Charlene visit helped, if no longer having our dog here is helping her, or what it is... but I am beyond words Thankful & Relieved... for the moment. I hope it lasts. It is so wonderful to see her smiling & laughing again. Even though she is deteriorating in other ways, it helps us deal with those changes when she is pleasant.

So... yesterday morning I knew we needed to get her in the shower. (The day before she washed her hair in our kitchen sink without shampoo.) Brad & I both tried getting her down there with no luck. Finally Brad went into her room & helped her pick out clean clothes (since she was only planning on changing her undies & had been wearing the same sweater for 2 days). She headed downstairs & came back up in her clean underclothes, no shirt, & unshowered. Almost like when a little kid says they have brushed their teeth but all they did was run their toothbrush under the water & you know it. (not that I ever did that as a kid!) So I ended up having to walk her downstairs to the bathroom (for some reason she still prefers to shower downstairs instead of the bathroom next to her room upstairs). I had to turn the water on, check the temperature (she was going to jump in before checking it), tell her to get her hair wet (she put shampoo in before getting it wet), tell her to rinse (she was turning the water off after only putting her head in the water for maybe 2 seconds & still full of suds)... long story short... it took alot of me telling her what to do... I almost felt like I needed to give her the shower... but I was not sure how she would feel about that. Afterall she was at least letting me stand in there to help her. Once again, being a nurse has helped me be prepared for these situations. I am now realizing I will need to be in the bathroom with her everytime she showers.

This week we have tried to find things to keep her entertained. Since she no longer sits & watches the television. She is almost like a ping pong ball... constantly moving about the house. She has rearranged things in our home, sorted through any papers I leave out, taken all the photos off the wall in her room again, put all the picture frames face down in the dresser again, fought with the coffee maker again (she forgets to plug it in & is impatient with waiting for it to brew), she goes from the chair to the window to the chair to the window to the kitchen to the bathroom to the chair to the kitchen to the.... etc all day long. UFFDA. It makes me tired watching her. I will lay laundry out for her, but she no longer helps me fold it... she has only once since she got back. She no longer does the dishes, she may come over & put one plate away or rinse out her coffee cup but that is it. When we brought groceries home she put the milk & soda away and left everything else out... we did find Taco seasoning in the freezer that I had bought last week. She did however vacuum the steps yesterday!! She also will grab the broom & dustpan about 10 times a day and walk around the kitchen/dining room and sweep up a few crumbs and then put it back. She used to always be so busy & constantly keeping everything clean... We have tried to do puzzles but she puts the pieces in wrong & gives up quickly. I brought out this game Chase got for Christmas where you shoot ducks, kinda like a carnival game, she loves it!



On our drives to & forth she has been reading roadsigns to me again & pointing at the speedometer... I only go a few miles over honestly! :) She also points out deer everywhere. My friend Angie recently called her the "Deer Whisperer"... it made me laugh hysterically... it is true. She almost senses them. She can be in bed & come running out the the living room window at 10 pm to point out a deer. Or see them along the road when I don't even notice them.

I want to say Thanks to Ryan for coming over to our house yesterday to watch Mia & be here when Chase got home from school. Brad ended up being home most of the day... his railroad job is so unpredictable!! But it was also nice for the 2 brothers to have some time together.

Thanks also to Rhonda for coming over Sunday while the kiddos & I went to church. Cathy really enjoys her visits & she brought her donuts!! Rhonda emailed this to me about Sunday:
"Sunday as we were watching the movie Cathy pointed at her sweater and said “Cardinals”. I told her that was a very pretty sweater and asked her if she got it for Christmas. She told me yes. Then I asked her who gave that to you for Christmas and she said Toby and Tracy. I told her that was very nice. She sat there for another couple of minutes and then stood up and went to the center of the room and stood like a model and showed off her sweater. She was smiling. It was so special! She is so proud of that sweater. It makes me smile every time I think of it."

One more thing (this is a long post...I should be in bed already!) Gayle stopped tonight on his way to KC for work. He dropped off Misty and more meds for Cathy. (One of her meds cost $250 just for this month!!) Cathy was already in bed & we didn't wake her up, now that she is on Trazadone it seems to really disorient her if we disturb her. The kids really enjoyed seeing Grandpa for a bit. He will be back through in a few days and spend more time then. We talked about medications, insurance, attorneys, etc... Wow. I am stressed with the caregiving part of her illness... but I am SO thankful I am not having to deal with the paperwork part. I don't know if I could handle all of it.

FTD Clinic Day ~ Mayo

Today from 9-2 we had the "FTD Clinic Day" at Mayo in Rochester. It was the First ever of it's kind! Dr. Boeve & his team planned this day for patients, families, & caregivers of those with FTD (Frontotemporal Dementia). Our group today consisted of 4 families, all dealing with different stages of the disease. For all of us it was the first time we had met another family struggling with the same disease... so that in itself was so Helpful! It meant so much to meet with people who are experiencing the same feelings you are & truly understand what you are going through!! They plan on having monthly meetings from now on & I am hopeful that we will be able to return. I am hopeful that Toby & Ryan will be able to come & experience this as well! It will also be nice to meet up with the families we met today & possibly meet new families along the way.

Here was the general overview of our day: Welcome, Family introductions & discussion, resources & support for families, reviewing behavior changes & challenges in FTD, Video on caregiving (at this time they took the patients for a short activity), FTD medical presentation by Dr. Boeve, & question and answer time.

I wish we would have had this available when Cathy was first diagnosed! It went over almost all of the questions & struggles we have had over the past year! I am so thankful that this is now available for families & I hope that they continue to offer this clinic!

What was Truly the most Amazing thing today was meeting the families. I wish we would have had more time to sit & visit with them. With respect for those families I won't go in to details about their situations. I will say that one patient was a husband/father/grandfather who was brilliant, witty, & humorous, one was a young man in his late 20's (YES, 20's) & the struggles and emotions that his family is facing brought me to tears, & the other was a woman in possibly her 60's. It brought our lives & our situation into perspective.

This thought may seem strange to you... but I am going to put it down... I remember feeling uncomfortable & awkward around friends when they had a Loved one with an illness. You always wonder what you should say or shouldn't say. You always feel so much for them yet know you don't know exactly how they are feeling. And I thought today going to this meeting I would finally be able to understand what other's are feeling & be comfortable talking with them. Yet... I found myself thinking, "I can't imagine how they are feeling!" Every situation is so different. One of the nurses today said, "When you meet someone with FTD, you have met one person with FTD." Every patient & every case is so different, yes we all had similarities... but our paths are all different. People often say to us, "We are so sorry for you." And I am usually thinking, "It could be so much worse, other families have it worse." I don't let myself feel the.... "Yes, this really does Suck!" You don't want sympathy I guess, just understanding.

After the meeting today Cathy came back home with us. This morning she was agitated with Gayle, which we are becoming accustomed to. Once we got into the clinic however she did very well & didn't show any aggressive/angry behavior! (sigh of relief) And on the ride home she was smiling, laughing, & rocking to the radio with me again. Once we got home she seemed comfortable & happy. She hugged up the kiddos & gave them kisses and big smiles as usual. I am disappointed I didn't get to see Aunt Charlene - she headed to her Granddaughters home for a few days & is then headed back home!!! Hopefully we can plan a trip out to Denver to see her someday soon! We can't Thank her enough for all the help she has given Cathy & us!

Special Thanks to Dr. Boeve & his staff! He is Truly Amazing... he is able to simplify things so we can better understand, he treats us like human beings & takes time with us, he truly makes you feel that he cares about your situation & I was so impressed at how he makes such good eye contact with the patients. And thanks to Angie for being such a great leader today! It was a Blessing for us families & I hope that they are able to continue this program!

Update from Cherie & Nursing Home paperwork

I spoke with Aunt Charlene tonight on the phone. It is hard to get ahold of her. Gayle has the home phone roll directly over to his Cell phone... since so many times when Cathy was home she would answer & mix up messages, confuse telemarketers, & who knows what else happened... And Charlene's cell phone doesn't have very good reception in Wisconsin.

We talked for quite awhile, here is a quick update on how things are going: The medication change seems to be helping, she is less agitated (still a few fist shaking episodes with Gayle, but not as many) and seems to be a bit less restless. She has the munchies again & is eating lots & lots of cereal and snacks. She is sitting some in front of the TV but now watching TV episodes, no more DVD's. She will still randomly just "jump up" and go do something quickly. She does still tend to wander around looking as if she is wanting to do something or find something... but not sure what. She has been up a few nights at 1 am & a few nights at 3:30 am - Charlene is able to get her to go back to sleep. Strangely she has been sleeping on the couch a few times with her dog, Misty. Misty usually goes to bed with her at night... but hasn't been lately (poor dog, I know that she knows something is wrong), so Gayle said that Cathy has just moved out to the couch to sleep by her instead of dragging her by the collar off to bed like she did at Thanksgiving & Christmas.

Charlene & I talked about moving her to a Nursing Home. She feels that the time is getting closer also. She can see how much she has changed since her last visit in August. Her main concern is "Safety"... for Cathy, & everyone around her.

Gayle has gotten the paperwork in order for the Nursing Home & it is good for 30 days. However he did say that now that he knows what to do it should be easier to reapply if needed. Since Brad & I are still not 100% ready to move her to the home. We have had MANY talks about it. This is his main concern, "I don't want my Mom to hate me when she dies." It breaks my heart to hear him say that! I know that she knows how much he Loves her!

Brad & I would both prefer to have her closer to us in a home... here in Iowa, somewhere that we could go see her everyday. But... paperwork & $$$ puts her in Wisconsin. We know that she has friends that will visit her. Gayle is there, but with the recent anger towards him it will be hard for him to go visit her unless it improves... if it improves. It is so hard to think about her being there & us not being able to visit her. Inevitably we will be driving up ALOT once we get to that point I am sure. URGH... I have already put 12,000 miles on my Van since July!

So... we will see how things go when she comes back to us Thursday night. Take it day by day again.

I am worried about Gayle... as usual. He would hate it if he knew that. He is trying to be the strong Father figure. But I know it has been hard for him to make all of these decisions, watch her progress so quickly, feel the anger she has towards him, worry about $$$ issues, etc... I hope that he is taking care of himself & I pray that his health holds up strong through all of this! Charlene watched him with her this week, she also sees him trying to talk to her, trying to do what is best. If she only knew that he was doing the best he knows how... she would not be so upset with him.

Yippee!

I just wanted to share the best 2 Christmas presents I got this year... both related to Cathy.

First: My friend Lynn came home for the Holidays and brought me the best gift ever!! Can you guess what it was???....??? PAPER TOWELS! (Since mine keep mysteriously disappearing since Cathy moved in!) Yippee! :)



Second: When we were up at Mayo before Christmas I lost my van keys... luckily I had the extra set with me. I couldn't figure out where in the world I would have lost them... I called everywhere we ate, the hotel, Mayo, etc... No Luck. Jean had mentioned that Cathy had came in our room that morning while I was in the shower & she searched through my things, I guessed that she was looking for my keys to load her stuff in the van, but I didn't think she had found them... later that day was when I noticed they were missing. I should have known where they were... but I had forgotten Cathy had looked for them. So, I had to come home & tell Brad I lost a set of van keys... he was not a happy camper, after all automatic lock keys are expensive to replace. ~ And then yesterday morning I got a call from Cathy again (call #3 this week) and all she said was, "I found your van keys." I was thinking, could it be true??? I think I might have excitedly screamed Thank You in the phone & she laughed. I asked her if I could talk to Charlene & she couldn't seem to understand that again... but eventually Charlene took the phone & said, "Yep, Cathy found a set of keys in her jacket but I think they are Gayle's." My shoulders dropped... Bummer. I asked, "What does the key chain look like?" Charlene described them & they were mine!! YIPPEE!!!!!!! I know this sounds quite simple & ridiculous! But if you have ever lost your keys... maybe you will understand!

Aunt Charlene is visiting again!

Aunt Charlene came from Colorado to spend some time with Cathy again. She flew in on Sunday & is staying until the 9th. (We are so Thankful for her help!) Gayle came & picked Cathy up here Sunday at noon. She was so excited to see Charlene, at 8 am she put her coat & sunglasses on and paced from window to window until Gayle came. The surprising thing when he came was that she left her suitcase & things in her room (she normally has them waiting by the door or already packed into one of our vehicles) ... she headed straight out to the van and got in. I brought her in to finish lunch... she just ate one bite and threw the rest in the trash & headed back out again. I stopped her and carried her bags to her. She grabbed one of her bags and put it back in the room & then headed back towards the van again. ??? She had a blank look on her face... I am not sure what she was thinking. I explained that she was going home for a week & Charlene was visiting. She just looked at me... I am pretty sure that all these back & forth trips are confusing her a bit.

When Gayle came she was angry at him again. He called on the drive and said she had settled down once they were on the road. I called later that night & he said that she was angry at him again. Charlene had to try & help settle her down to go to bed. It took them 2 hours even after her Trazadone to get her to sleep... usually she is asleep within a half an hour. Charlene even layed down with her... but she would pop back up & start the same old routine again.

I have talked to Charlene everyday this week... Cathy is still very restless. She is going through things, opening cupboards, emptying cupboards, burning things (Charlene thinks she has burned some clothes again)... I mentioned to hide the matches - but she keeps finding them. On Tuesday & Wednesday morning Cathy called me from her cell phone... this was VERY surprising. Over the past few months she has forgotten how to use it. She will push numbers and just look at it, I will take it from her and see numbers like this: 81421. I know that once in the past 6 months she has called Brad & Toby. But I am not sure how she did it, but she did. All she could say was, "Beth." I talked to her a few minutes telling her what we had been up to. Once I handed the phone to Brad to talk to her, he started out by asking her questions... but she can't answer & gets frustrated... he quickly tried to think of another thing to say. (It is hard to talk on the phone to someone who can't talk back) I then tried to say, "Can I talk to Charlene?" But she couldn't seem to understand that either time... eventually Charlene would see that she was on the phone & get on to talk to me.

Last week I put a call in to Dr. Loepfe's office (he was on vacation, I talked to his nurse & she said he would call when he returned) ... hopefully he will have some ideas on medicine changes that may help... however, we know that not much can. He called back Wednesday afternoon. He mentioned a few changes that we are going to try, he also felt we should keep Gayle & Cathy apart, & we discussed the fact that we have been getting things in order for the nursing home - so when it is time we have options readily available. Even though we know that there is not much he can for this Disease, it is comforting to know that he is available to us for advice & support.

Charlene said that things were going fairly well yesterday. Gayle was heading out of town for work & going to be gone most of the time now. She noticed that Cathy seemed less upset after he left. However, as the day goes by she gets more restless... Charlene mentioned Sun downers. Jean was stopping by again last night to visit. Gary had been up to say Hello & give her the message to call me regarding Dr. Loepfe's call. So Charlene plans on implementing the medicine change today.

So... I have to admit that the past few days has been Wonderful for our family. Brad has been home studying for work, he has 2 tests this week to renew his Engineer's License at work. So we have spent alot of time together as a family. We even got Brad out to the movies last night! I have been able to work on a few things at home that are hard to get done when Cathy is around. The kiddos & I have enjoyed playing games they got from Christmas & just hanging out together. I feel guilty saying that I am enjoying our break. But I truly am enjoying it.

I head up to Mayo on the 10th to meet Gayle & Cathy for the research group appointment. And then she will come home with us. After that... I don't think we will do much traveling back & forth anymore. She is progressing so quickly & it seems to confuse her even more. Plus with her anger towards Gayle... it's just not a good idea. I have a feeling our next trip to Wisconsin will be her move to the nursing home... I am not excited for that. And I am hopeful that we can help put it off a bit longer. Time will tell.