Behavior Changes & Tough Decisions

Cathy's anger towards Gayle has progressed from pointing at him to slugging him on the shoulder. On Sunday night we were all sitting around visiting with Pete & Barb and family... Cathy came out of her room again mad at Gayle. We tried to redirect her by bringing up PT Cruisers... for some reason Cathy does not like PT cruisers & we can usually tease her about getting one & she will laugh... but it didn't work that night. She laughed... but she still kept slugging him on the shoulder. He was sitting on the couch surrounded by family & friends and she would walk over and slug him. He firmly said, "Cathy, stop that, it's starting to hurt." At one point she grabbed the hair on his head & pulled his head back and kept her grip... there he was looking up at the ceiling while she held his hair... I think I saw his face turn from white to red to purple... but he kept his cool. Brad went over to stop her & directed her back to bed. We all laughed nervously... stunned.

Earlier that weekend she unpacked Gayle's work travel bag & burned his Carhartt jeans!! I don't know whether she did it on purpose or on accident... I would like to think it was an accident, but with her anger towards him... I am not so sure. She washed clothes & turned alot of things pink this week also. She took pictures off the walls and shoved them into drawers. She completely cleared off her bedroom dresser & took all the clothes out of the drawers... stacking the clothes along the walls in their room?? I wish I knew what she was thinking. She was constantly rummaging through drawers, papers on the counter, cupboards... rearranging & moving things. Whenever she saw Gayle with a Cigar in his mouth she got angry... he usually smokes a Cigar when he is working outside... shoveling snow, working in the yard, etc...

Brad & I came back to Iowa Christmas day for Christmas with my family... & Brad headed back to work that evening. Cathy stayed with Gayle because she had a follow up appt. in LaCrosse Wednesday. (The appointment went fairly well & the procedure that was done is helping things.) I talked to Gayle on the phone Tuesday night & she was going through papers again. While I was talking to him she was slugging his shoulder... I told him to tell her I said to please stop. He told her & she stopped temporarily. When they pulled out of LaCrosse to head back to Iowa she kept pointing back home. He was talking to me on the phone & said he had to go because she was upset. They got here at around 2 o'clock & he headed back home because he had appointments today related to her future care. He called last night when he got home because he was concerned about her behavior. He doesn't want her with us or around the kids if she is angry. But once he left she improved. She has not hit at us or yelled directly at us. If that happens... we will no longer be able to take care of her.

Since Thanksgiving things seem to be spiraling downhill so quickly! She seems to change day by day instead of month by month. Tonight she was trying to tell me something but all she could do was point away & say, "Actually, on fire." She can't seem to communicate at all anymore. Maybe less than a handful of times during the day you can get her to say yes or no. And sometimes she will surprise you with a sentence... but not much. It is usually, "I fed Rudy today" or "I took a shower downstairs". Toby stopped by for a few minutes today & she hugged him up a bit. His Dog is staying with us while they are here in Iowa for a few days staying with Tracy's parents. Maggie, Toby's Dog, used to LOVE Cathy & spending time with her because Cathy used to SPOIL dogs! But this trip she has stayed in our entry most of the time. Cathy tends to pull the dogs around by the collar now & is rough with them... something she never would have done before. Even Misty distanced herself from Cathy when we were up there over Christmas. We noticed that she would stay out in the living room with us when Cathy went to bed, instead of going with her. I wonder if they have doggy therapy available??

So now... the decision no one wanted to even think about making... is coming up sooner than we thought. Discussion has begun about Nursing Home care. Gayle is getting his financial paperwork & Medical paperwork in order... something he had hoped to put off for much longer than this. The home up in Wisconsin has openings & they have a very nice facility set up for Alzheimers care. I called here & they have never taken someone under 60 before... they are still discussing that possibility & she would be 2nd on the list here. I can't speak for Toby & Ryan about how they feel... but I know that Brad will probably fight tooth & nail to keep her with us as long as he can. He is very emotional about this. (I wish we knew what she would have wanted... & then we wouldn't be facing this decision with such heartache!)

I have mixed emotions. I don't want to see her in a home quite yet. She still knows us, she still laughs & smiles with us, she still hugs & kisses us, she knows more than she is able to show us. But... her anger & frustration is beginning to make me uncomfortable around the kids. If it was just Brad & I we could handle it for as long as it takes. But... with the kids... we have to draw the line at some point. It just isn't a line we want to draw. How do you make a decision like that??

All the time the kids & I spent with her over that past year helping didn't seem that hard. But up until the past 3 months we only did it sporadically, a few days or weeks here & there. It was much easier to help take care of her over short periods of time & then get a break for a while until the next time. But as fast as she is progressing now & caring for her basically 24/7 for the past 3 months... it is hard. And I Love being a nurse. But it is the hardest thing I have ever done! It is hard to imagine. I thought I knew what Gayle was going through... but now that we are living it... I realize that I had no idea how hard the past year had been for him.

Aunt Charlene is coming on the 31st & staying until the 9th of January. She is planning on keeping Cathy up in Wisconsin with her... but I am going to tell her if things get to tough they can stay with us. (I know she can handle it... but I am not sure it is a good idea to have her around Gayle... although he plans on traveling for work most of the time) Just having her support around would be as much help as anything! I am truly looking forward to time with my family again. Time with the kids & the freedom to go and do what we want to do. But yet I feel guilty about looking forward to time without her.

Christmas Eve

Reflecting back on Christmas Eve Brad & I realized that it was the only evening while we were up in Wisconsin that Cathy did not get mad at Gayle (more on that later). It is hard to say how much she truly understood. But she did seem to be happy & kept wanting to pass out presents before it was time. Once she started opening all of her presents she smiled & laughed. At one point she opened a birdhouse from Gayle... she then went to put her shoes on, she was going to take it right outside & hang it up! She was like a child opening her presents, wanting to play with what she opened right away.



We played our usual White Elephant game & she opened her first present but then handed it to Gayle & started picking up the wrapping paper. She ran around picking up paper, boxes, & trash from opened presents & then went directly outside to burn everything. It was great to see her helping instead of going directly to bed.

Thanks to Barb for helping cook all the goodies... especially the bacon wrapped smokies... Yum! And Thanks to Everyone who helped Cathy enjoy her Christmas in Wisconsin! We had lots of visitors from Saturday - Tuesday & lots of Christmas goodies brought over from friends!!

Since we got home Cathy has been very proud of her gifts. She especially Loves a Sweatshirt Toby & Tracy gave her that has all 8 of her Grandkids on it. She will point at her sweatshirt & laugh and smile.

It's Snowing

It looks as if there is a soft blanket of snow on the ground outside... it is Beautiful. The snow is falling straight down... quietly... peacefully. I now understand what Brad is always talking about. A Wisconsin Christmas. If we were in Iowa right now... the snow would be blowing & cold. It somehow feels different up here. Maybe it is just the magic of the season.

We made it up here late last night, Ryan & family made it up this afternoon, and Toby & family got here just a few hours ago. So... here we are... all together for Christmas. The Christmas tree is the only light in the house right now, other than the glow of the computer screen. Besides candle light service at church, having the glow of the Christmas tree is one of my favorite memories of Christmas. I can hear kids footsteps upstairs (that should be in bed), I just let the dogs out to play in the snow, & the fireplace is crackling.

Cathy went to bed before Toby got here... so I am sure she will be up bright & early in the morning. This morning she was up at 4 am when Brad got up to check his status on the railroad boards, Brad stayed up with her while she attempted again to make Bacon for him. He has noticed just in the week since he saw her at our house that her speech is changing. It is harder for her everyday.

I want to say a BIG THANK YOU to Barb & Barb for staying with Cathy on Thursday & Friday. It was a much needed break for our family (especially when getting ready for the Holidays!) & it was so helpful to Gayle. Tonight Barb & Gary came up for supper and she said things went well on Thursday. I haven't talked to Barb (& Pete) about how things went on Friday, but Gayle said she felt things went ok. Jean & John stopped by again this afternoon for a quick visit.

Getting back to the interesting things... I will start with the Worst. Gayle's Birthday was yesterday... I called him yesterday to wish him a Happy Birthday & he told me I would never believe what Cathy had done. Let me start this by telling everyone how big of animal Lovers Cathy & Gayle are! They are the type of people that treat their animals like their children. The last 2 dogs they lost (Misty & Tiffany) and our yellow lab that Cathy took care of the last few months of his life (Bud) were all cremated. They had them in the house, high up on a shelf, deciding what would be the best thing to do with them. Well... Cathy, unlike her self completely, dumped them! Yes, I said dumped them! Gayle tried to ask her where & all she could do was point and say, "on fire." He was devastated... the only worse thing I can think of her doing is burning the house down... and on his Birthday! Urgh... We all know that Cathy would NEVER have done this in the past, that is what makes it SO HARD to deal with. Gayle just threw his hands up in the air... he is spent.

Today Brad & I noticed some "black dirt" along the stones in front of the house. I didn't think anything of it, because Iowa has black dirt everywhere. But, Brad looked closely & said, "I think this is it!" In Wisconsin the dirt is more like sand/clay. And it was on top of the layer of snow. Phew.... It may not be exactly where they wanted them... but at least they were not put in the trash, flushed down the toilet, or burned in the burn barrel... up until last night we had no idea. Gayle & Brad are so relieved to know that they are still close to home. (I know all you animal lovers out there can appreciate this)

She is still so restless all day. She is constantly taking things out of cupboards & moving things around. I don't like saying I miss the movie days... but it was much easier to keep an eye on her when she was in one place.

Gayle is meeting with someone from the care center up here in January. He is also working with a Lawyer/Accountant about finances. After the incident with the dogs... it was almost like his last straw... he just doesn't know how much longer he can be alone with her. I still feel like we are doing ok at home and we would like to help for as long as we can. (We just need to continue to keep a close eye on our kiddos & their relationship with Cathy) We just don't know what 2008 holds in store for us... but no one does. We can only hope for the best & take it one day at a time. Enjoying the little things.

A few more Mayo highlights:
While we were in Rochester we got Cathy's hair cut & highlighted (the Beautician was AMAZING with her, patient, & understanding. She said they are used to getting patients from Mayo clinic), we also went out to eat a few times. On Tuesday night we went to Macaroni Grill. We ordered a house bottle of wine to share... & Cathy kept filling her glass up... after 4 glasses we had to hide the bottle from her, she would just laugh & try to sneak it back. Jean tried to trick her by pouring water in her glass, she just poured it into her water glass, there was no fooling her! It is not like Cathy to drink that much... but I think I would in the current situation too. (However, it is not a good idea with her medication) I also had to cut up Cathy's meat for her, she started choking on it (because she had 5 pieces in her mouth at once & she doesn't chew like she should). I think I am going to have to get a cookbook for softer foods... I read about one on the FTD support group site I think, this is now on my to do list.




Staying at a hotel with her was interesting also. We should have taken bells to hang on the door like I do at home. Jean & I were across the hall from her and she was knocking on our door, she had slipped out of her room & was coming over to see us. Luckily Jean heard her. She wanted my keys... so she could pack the vehicles up. Uffda. Just like home but in an unfamiliar surrounding.

So... I/We are looking forward to the next few days together as a family! Merry Christmas to you all! Wishing you many Happy Memories this year also!

Mayo Update

I am VERY tired so this is just a quick summary... I will get to more later. Basically it was a quick, busy, & amazing visit! Dr. Boeve & his staff are MAGNIFICENT! We found out the name of the "bad guy" causing all of Cathy's problems... TDP 43. (Toby is the Genetics guy... most of that info goes over my head, but it is extremely interesting.) We met another family who has 2 daughters suffering from this disease... diagnosed at 31 & 37!!! We also heard of a family with a son who is 27!!! It really puts things into perspective.

Dr. Boeve suggested that we could increase her Seroquel dosage... so we are steadily going to do that, hoping for help with her restlessness & sleep. We are also going to meet with a Speech Therapist at Mayo when we go back on January 10th.

Sites to check out with info on Genetics & FTD:

www.genetests.org
(Search for FTDP-17)

www.ftd-picks.org/?p=diseases/ftdp17
(I use this site alot & there is TONS of info on here. Read the AFTD newsletter from November 2007, it is linked on this site... Dr. Boeve has an article on the front page.)

www.pubmed.org
(I usually use medlineplus or webmd, I honestly hadn't heard of this one... but he uses it the most & says that a year ago there was only around 20 articles & now there are 3x that amount.)

Gayle & Jean took Cathy back home to Wisconsin and I headed back here to Iowa. (I stopped in Austin & Mason City to finish my Christmas shopping! It was SO wonderful to be alone shopping for a change!) We are going to head back up to Wisconsin on Saturday for Christmas. Barb (& Gary)is going to spend the day with her tomorrow & another friend Barb(&Pete) is going to spend time with her Friday while Gayle works. I am sure Jean will check in on her also.

Thanks Jean for going along! She sat with Cathy during both of her MRI's & it made a world of a difference! We also took Cathy to get her hair cut & colored last night... it was fun & she was so Happy!!!

Side note: I have a guess as to why Cathy is so mad at Gayle. I noticed a few times yesterday & today that she points at him when he is eating & once she said, "Diabetes, On Fire!" ... I bet she is made because he isn't eating well now that she isn't taking care of him??!! It all started the night we went down to Barb & Gary's for supper and he stayed up at the house, when we came home he was sitting on the couch eating & she got upset that night. Hmmm.... maybe?

Happy to be Home!

Just a quick post about today...

This morning I woke up to find Cathy's suitcase & things sitting by the front door... she was ready to head up North! But... along with those things was a garbage bag & a box full of: an afghan, random picture frames from throughout our house, a half empty bottle of hand soap from our kitchen sink, the cork board from behind our computer with photos & notes still tacked on, rolls of paper towels, Kleenex boxes, shampoo, dishtowels from the kitchen drawer, my Christmas cards that I have received from family & friends, some knick knacks that were on shelves throughout the house, the kids Christmas stockings (that were hung up), etc... ???? Lots of things from around our house. I think she was packing us all up to move, it was just strange pulling things out of the bag. I felt like Mary Poppins pulling things out that just didn't seem to fit! I had to laugh... I knew she was excited to go home. But I wish I knew what was going on in her mind when she packed these things... I can't seem to find the connections between any of the items... totally random.

The drive up went well. Cathy was very happy & bubbly today. We made it to Lacrosse & met with her Dr. for the in office procedure. It went very well. Cathy seems comfortable with everything. Before the appointment she seemed nervous & her BP was elevated slightly from the last visit. She also kept saying, "no cut" and "surgery, on fire" while shaking her head no. I don't think she wanted surgery & I am so Thankful that we choose this option after weighing all the pros & cons. The Physician & his nurse were so Wonderful! They were patient, caring, & helpful! I am so impressed with that clinic! Even the receptionist was helpful when I called this morning! (Our hometown Family Practice is always that way & we are also Thankful for that... but sometimes seeing a Specialist things are more impersonal & you feel rushed & unimportant.) I was so impressed with how well they handled her Dementia! The Dr. explained how I can help her with things in the future... I won't go into details. I didn't tell him I was a nurse because with my past experience it seems like you don't get as thorough of instructions if they know... sometimes they assume you should know, & you don't always... ask me about College Health or Tuberculosis & I can tell you alot, but other areas I am not as fresh on... one thing I Love about nursing is that you are always learning!

After the appointment we headed home & went to Jean's for supper. Thank You Jean for making a Delicious supper for us & saving us the time/energy tonight!! It was very much appreciated. After eating Cathy stayed a short while but started getting restless & was ready to come home... mostly to Misty. I had called Gayle earlier today & warned him that she has been very restless & to "cathy proof" the house again. He was able to hide keys & some of his paperwork before we got there. However... she got to the laundry room & washed clothes tonight... leaving most of his towels pink now after washing them with her new red sweatshirt. Oops...

I better get to bed... we are headed to Mayo in the morning. Jean is going along to sit with Cathy during her 2 MRI's. Only 2 people can go into the Dr. appointments, so Gayle & I will be doing that. I have asked Toby & Ryan to email me with their questions... basically most of us are wanting to know the genetics... (I wish Toby could be there because he is the one who will understand this the most. I am going to have to take notes!)

Really... we are nice neighbors!!

So... today I had a little bit of a meltdown. It didn't last long. I just shut myself in the bathroom for about 5 minutes & called a friend (Thanks Ang!)...

Today started off really well. This morning was our Christmas Concert at church. (While I was getting the kids dressed Cathy made herself breakfast... a salad?!? When we came out she was eating a lettuce salad in a cereal bowl.) Rhonda graciously offered to come sit with Cathy this morning so I could focus on the kids & my Sunday school class and not worry about Cathy. The concert went well & it was a fun morning. A special Thanks to Tammy for her wonderful gift of friendship!! Today she gave me a card that said exactly what I needed to hear! "... there are times when helping hands can grow weary... May the Lord renew and refresh you..." (I am looking at these words right now... & they are so calming & refreshing!)

After church I came home & picked up Cath and we headed out for lunch. We met up with my parents, Grandma, and my Aunt & Uncle from KC. Cathy did very well at lunch today! I was pleasantly surprised!! All except for when the kids asked her what she was getting Grandpa Gayle for Christmas... & she said, "Dog Poop!" ~This is kind of an inside story... At Thanksgiving Aunt Gretchen was teasing Chase about giving him dog poop for Christmas. And basically Cathy is mad at Gayle, for whatever reason, we can't seem to figure it out exactly/but we have our ideas... she shopped with me for the grandkids & her boys but didn't want to get Gayle anything. In an effort to make her smile, because whenever you talk about Gayle she gets upset, I said, "how about a lump of coal?" and she laughed & laughed. Then I said, "How about dog poop?" And she laughed even harder... now she says it all the time. Oops... at least she is laughing. (Gayle, if you are reading this, I promise not to let her wrap up dog poop for you! Do you trust me? LOL)

My Dad offered to take the kiddos with him for the afternoon so I could get some work done at home. (The kids love 'bumming' around with Grandpa!) I was so excited to have some time to get a few things done around the house today. Yesterday I watched my niece & nephew for 12 hours so Brad's brother could go to a family funeral out of state. (Sad story... they really needed to be there, it put my life into perspective) Luckily Brad was home yesterday... 4 kids & Grandma got interesting, I was afraid to leave my 8 month old nephew alone with Cathy because she was constantly trying to help... but not always safely. At least she was interacting well & he was smothered with kisses on his forehead all day! So all & all it was a good day for Cathy yesterday.

Tomorrow we are headed to Wisconsin for Cathy's appointment in LaCrosse & then we are off to Mayo Clinic for 4 appointments/2 MRI's on Tuesday & Wednesday. When I get back from those my brother is coming for 11 days & my house is SO NOT ready for company! ( I am guessing that is how everyone is feeling about now with the Holidays coming!) And I am so excited to see my lil brother & meet his girlfriend!!!

So... back to today! I got home & started working around the house... but, Cathy was like a shadow. Everywhere I went, she went. She would pick up things I just organized & move them around, open drawers & put things back in other drawers, unloading the DIRTY dishes (which I hope I found all of them in the cupboards, this happens alot), open boxes and take things out, she even opened up my purse & started looking inside it... she was trying to help but it was making things worse. I thought... ok, I will dust/windex instead... nope... she once again tried to help but used a HUGE handful of papertowels & wasted them, used windex on the wood & endust on the TV screen... URGH. I lost my cool for a second & said something like, "Cathy, stop, you can't use that many papertowels!! We have gone through 8 boxes of kleenex this week, 12 rolls of papertowels, 2/3rds of our trash bags, & who knows how many rolls of toilet paper!!! We can't afford for you to be using so much! You need to conserve!!" (I felt like my Grandma telling me to only use 2 pieces of toilet paper!) I knew that she didn't understand, that she was only trying to help, & that it was useless to say anything. URGH I was frustrated with myself for getting upset. So... I took a deep breath & thought, I will take a break & finish after everyone goes to bed. I sat down at the computer to check mail... & there she was again looking over my shoulder... reading random words on the computer screen. She would walk in & out of the kitchen (where our computer is) & stand behind me. Just stand looking over my shoulder. Ok, I will try something else... I walked back to the bedroom to fold laundry & I heard the front door. I walked back out to the kitchen & looked out the window. UH OH THIS ISN'T GOOD! The person who was up looking at our neighbors house, that is for sale, was stopped in the driveway outside our house with his window rolled down.... & Cathy was shaking her fist at him & saying something! (OH CRAP!) I ran to head out the door to talk to him but by the time I got outside he was driving away & she was saying, "Get Out, On Fire!" over & over again and shaking her fist. My shoulders fell & I didn't know whether to Cry or Laugh!?!?! (I think I am going to have to call the realtor in the morning... Any ideas??) Really... we are nice neighbors!!!

*I think that having her old house next door sometimes confuses her... I can't put my finger on it exactly but today she was in a good mood most of the day... except for when people drive by the house. She points up there & gets upset for a short while, but then is laughing & happy again. Her mood can be like a roller coaster some days.

This is when I headed to the bathroom... I just needed a few minutes. So, I called a friend. And then called Brad... who was somewhere on a train (he always misses the fun stuff!). The whole time I was on the phone I could hear her pacing the house. Opening doors, closing doors, walking around, walking into my bedroom, walking out, while saying the same things over & over again. She wasn't angry... just restless.

After just a few minutes I felt better. I decided to sit down & watch a Christmas movie with her. (Elf... how can you not cheer up when watching that movie) That put me back into good spirits again. Sometimes you just need a few minutes to clear your head.

And so now... here I am, everyone is in bed. The dishwasher is running, loads of laundry are tumbling away, the bills are spread out on the counter, & the suitcases are half packed for the kids going to my Mom's while we head up North.

Misty!!!

Misty! Mistyyyy! Mistyyyyyyy! - This is what I woke up to at 12:30 last night/this morning. Cathy was up & looking out or living room window. She walked right past me & down to our front door... & despite me saying, "Cathy, Misty is in Wisconsin, that is a Deer outside. Cathy, don't let our dog out!" ... she opened the front door yelling again & letting our dog out to chase the deer. URGH. (We live out in the country along the river so we always have deer around) Luckily the kiddos slept through the whole event.

My Dad came out last night to sit with Cathy & the kids, Brad was working on our broken snowplow in the garage, so I could go to my work Christmas Party. (It was SO NICE to get out & see everyone!) But since I was out she didn't get her medicine before going to bed... she was restless last night. I guess I hadn't realized how much the Trazadone was helping her sleep... until I was reminded by her. She also was saying "eggs" & brewing a pot of coffee. So tonight I took the handles off our gas stove & hid them. I should have done this sooner... Now, hopefully I won't remember where I hid them!

It has been an eventful week again. You just never know what is going to happen next. Yesterday while I was getting Mia dressed Cathy poured some cereal for the kids. (She still tries to help out when she can) She also got Mia's antibiotics (for strep) out of the fridge & poured some... but it was not into her medicine cup... it was sitting on the counter next to her cereal bowl in... an earplug container. Yes, one of Brad's earplug containers from work. (Since he is a locomotive engineer he gets a pair to wear each trip) ??? She also handed me Mia's schoolbag (Mia is in Pre-School on Tues & Thurs... no school Wed.) & I noticed it was VERY full. I opened it up and she had put in 2 pairs of Pajamas & about 10 pairs of underwear..???? We had to LAUGH. She was trying to help.



Food: It is getting harder to cook for her. Her favorite things to eat right now are: Cereal, Pizza, McDonalds Dbl Cheeseburgers, & Chocolate! I bought grapefruit, oranges, & apples... but she fed the apples to the dogs and won't touch the rest. It is like she is a kid again with a sweet tooth. She isn't over eating like she was this past spring/summer... but she munches alot & doesn't eat the fruits & veggies with meals. You can't turn your back on her when you have food cooking. You almost have to stand guard! One night Brad made Lasagna & before it was done he walked back in the room and she had some dished up. I was baking chicken one night & she kept walking around with a plate... I had to literally stand in front of the oven until it was done. She doesn't take the time to let food cool off & she won't blow on it either... it is hard to hide it from her until it is done because she paces in & out of the kitchen. She also starts the coffee pot & pours a cup before it is done or fills both the inside & the pot with water and it overflows. URGH! Patience... we are learning lots & lots of patience.

Since we got home from her appointment she has spent more time in her room. She goes in & out all day. I am not sure what the reason is for this. She is not watching movies as often & her attention span seems shorter. I have actually gotten to watch a few "real" tv programs & the kids have watched some Christmas Specials! S

She also put her 2 poinsettias together in one pot... I have been dumping water out of them on a daily basis... she is over watering them immensely, but at least she is trying to take care of them. I am NOT a plant person. I could kill a cactus. I used to admire how well Cathy took care of her plants. The poor lil guys are in trouble here!

Today we headed in to town to pick up the kids at Pre-School. On the way in she was waving randomly at people & smiling... she has been doing this quite often lately. But once we were in town & stopped at the 4 way stop she shook her fist & said, "Actually, on Fire!" towards a guy at the stop across from us. I immediately lowered her fist & said, "Cathy, you have to be nice, we don't know that guy. We have no reason to be mad at him! And we don't want him to be mad at us." Luckily we live in Iowa & not LA... or we might have had someone chasing us down!!!

Today our friend Val stopped over. Cathy sat down at the table with us for a while. It was nice to have company! We also ran into Kerry, a friend of Brad's since high school, at the grocery store. He came over and said "Hi" to her. As we were driving home she was all Smiles! She just kept saying, "Kerry, Brad, said Hi!"

Tonight was Chase's Christmas concert at school. About 10 minutes before it was time to go she came out in her Pajamas! Uh Oh... (All I could think of is... Brad is out of town, this always happens when he is gone!) I asked her to please get dressed so we could go to Chase's concert. She just looked at me & shrugged her shoulders. Chase walked over & gave her a hug and said, "Grandma, don't you want to come see me sing?" (He is such an AMAZING kid!!) She smiled & went and got dressed. PHEW! Crisis diverted.

Luckily when we are in public she doesn't chant/talk as loudly. As we sat at the concert she kept saying the same things: Actually, on fire. Everafter, on fire. Get a life, on fire. She says these things ALL DAY LONG at home OVER & OVER. It is getting much worse now that she can't communicate. She chants more... every once in a while you get a short sentence or new word, but it is less & less each day. However, she will repeat what you say. So, hopefully, everyone around us didn't notice much. I know I shouldn't be ashamed or embarrassed. But it is hard when you can't explain her behavior to others. You just want to say, "Please, she is sick, this isn't the real her, she would be so sad to know how she is acting, please be understanding!"

~~~~~

Medical Decision: After lots of thought... lots of talking... & some online research... Toby & I both are swaying towards the quick & easier option of helping her. We just feel like if we choose surgery so many things could go wrong... she could be confused more, scared, hurting & we don't know where or why since she can't communicate, recovery could take longer, infection risks, etc. And we also don't know how much time Cathy has left with us... as fast as things are changing she could very likely be bedridden or in a nursing home in a few months. (I hate the thought of that!) Do we really want to make one of her last months possibly painful?? UFFDA!

Toby is planning on talking to Brad & Ryan before he makes his Decision. We have both talked to Gayle already. We all feel the same way... we don't know if there is a right answer. We just all have to agree to make the best choice with the facts we have... & mostly agree that whatever decision we make we don't go back on it later. We can't let this pull us apart as a family!

~~~~~

Tonight after the kids bath's I went to get Mia's PJ's... I opened her underwear drawer & it was empty...!... Oh, yeah... backpack! I opened her backpack & inside was all of her underwear & 2 pairs of PJ's. I had forgotten to empty it... oops.

Does anyone need Christmas cookies?? I have to stop eating them! Since I am home with Cathy I am snacking, snacking, & snacking some more! Comfort Food...

Decisions

Well... Cathy & I made it to LaCrosse and back today... 8 hours on the road. On the way through Minnesota I was surfing for a radio channel... Cathy does not like Country... but she started jammin to Rock-n-Roll. She was bopping her head & waving her arms to "Black Betty" & "Sweet Child of Mine".

We met up with Gayle at the Clinic. Cathy seemed really comfortable in the Doctor's Office today. I was very impressed with the Specialist she saw today! He was very patient with her, tried his best to communicate with her and get correct answers, & treated her with respect. He also was very knowledgeable & went through her choices of treatment. Now... it's decision time. Tentatively we have an appointment scheduled for next Monday & the following Wednesday. If we choose this option we will have her problem "fixed" before the new year! The other option, which if it would have been a year ago I think would have been the best choice... but now with her dementia, maybe not... would have to be scheduled in January. Toby is willing to take time off work to come down & take care of her if we choose option #2 since it will involve a hospital stay & recovery time. - Tomorrow I am going to put a call in to her Geriatric Specialist to get his opinion & also talk to a few people who have been through something similar. - Toby & I were talking tonight... we wish we knew exactly how she felt, we wish she would have put down her feelings before we got to this point of "poor communication." I have asked her a few different ways tonight... & each answer is different.

*Note to all healthy people reading this: PLEASE legally put down your wishes for your family... just in case!!!

On the ride home tonight she was very emotional. (No anger lately... HOORAY!) She started repeating "36 years" and crying... then it was "Misty" and crying. This lasted for about a half an hour... 1 Kleenex box later she seemed to be settled down. I kept reaching over and holding her hand, she would squeeze my hand & pat it. But when I would ask what was wrong all she could do was keep repeating the same words. Communication is getting so much harder. I don't think I realized how much harder until at the Dr. today. Whenever he would ask her to do something she would repeat him instead of doing it... I tried to help, but she would just repeat me & giggle.

So next week may be full of more road trips again... but it will be worth it if it means she is feeling better... I just hope we make the right decision. I am actually Thankful that the weight of that does not fall completely on me. Toby's medical background helps immensely! Ultimately... it is up to Gayle & the boys.



I took these pictures of the bluffs in LaCrosse along the Mississippi River today. (I know... I shouldn't drive & take pictures) See the icicles from the Springs! I Love this drive! It was so hard to drive the 4 hours there & not stay and enjoy Wisconsin for a while!

On the Road again...

Well... in about an hour we are headed to LaCrosse again. I am hoping to make it home tonight after the appointment... but the weather doesn't look good here... freezing rain & snow on the way again. Urgh.

The logistics are the tricky part again. We are taking Misty with us & Gayle is going to meet us there. Lizzie is staying home & if I get stranded in Wisconsin my parents are going to take care of her (they are really not big dog people... so Thanks Mom & Dad!). The kids are going to be with my parents again since Brad is working. And lots of friends have offered to help out if we need them! Thank You Everyone!!

I know that it may seem ridculous that I am driving all the way to Wisconsin for this... But if you were living with Cathy day in & day out worrying about this issue... you would drive that far too! If it were a healthy adult... things would be different. But due to Cathy's illness... she is confused, constantly pointing at that area (which is a subject I don't want to discuss yet with the kids), & her showering/toileting is not the same... I won't go in to details.

It has been a LONG week... Calgon take me away!

Medical Issues

Once Again... it has been an interesting few days. Yesterday Cathy came to me stating, "pregnant" and tapping on her stomach. I am sure the look on my face said it all... Pregnant? I quickly reassured her that she was not pregnant... & I tried to guess what she meant by that. I asked her all sorts of questions & only got yes and no answers. She smiled and went on with the rest of the day. And I felt helpless because I couldn't figure it out. At around 4:45 she finally showed me what she meant... I guess I should be thankful that she is comfortable coming to me. And I am also glad that I am a nurse & I am comfortable dealing with medical issues. Needless to say... for Cathy's privacy, I won't go into details. But I quickly called the clinic. I was given some helpful advice & was able to help Cathy for the short term... mainly I was able to prevent a trip to the E.R. (I can only imagine what that would have been like... I hope I don't have to know anytime soon) This also explains alot of her behavior over the past few months...

Today I took Cathy back into the clinic here in town... we got the OK for a referral & now we are waiting... This is where things get FRUSTRATING! The specialist's office called & said they couldn't get us in for 5 weeks... 5 WEEKS!!! Do they understand what it will be like taking care of her with this issue for that long... how hard it is going to be for her??? I am a nurse at a clinic, so I understand how difficult scheduling can be... but on the patient side now I am frustrated... this seems to me like something that can't wait... mostly because of her Pick's & the confusion it is causing... & how she cannot take care of things like a healthy adult could. So... I called the clinic up in LaCrosse and they can get us in Monday... MONDAY! ????? But... now I have to decide if I really want to travel 5 hours to take her back & forth to the Dr. for this issue... how will it effect the kids & our family since I don't know exactly what the plan of care is going to be yet. I put another call in to our local clinic... just to double check & see if they feel I should try and get her seen earlier. Maybe I am making a mountain out of a molehill.?? We will see tomorrow. I feel like we have spent most of this week at our clinic.... between this issue, Cathy's Physical, & strep throat. I am so Thankful to them all, they are always so helpful! But I am sure they are getting tired of seeing my number show up on their phones...

This afternoon I took Cathy to the Mall to get a new pair of shoes. On the way in she pointed at a sweatshirt with cardinals on it. And on the way out she walked into the store & pointed at it again. So... I bought it for her. She wore it tonight & it already has coffee stains and oreo cookie crumbles on it... We drove around alot today. Picked up Mia & friends from Pre-School, came home for lunch, back to town for the Dr. appointment, and then around town for an hour waiting for the kids to get out of school... they got out an hour early today due to a snowstorm. (Cathy really enjoys dropping off & picking up all the kids.) Randomly she would wave at people in their cars/trucks... sometimes we knew them, but usually not. She even waved at the lady working in the paper store at the mall... the lady waved & smiled... but you could see the look on her face, "do I know them??"

Most of today she seemed relaxed and surprisingly she is handling the medical issue very well. She trusts the people at our clinic here in town & that helps so much. The only time today she got angry was when she thought she saw Gayle's truck drive by. It was a truck similar to his with the Railroad sign on it... but it wasn't him. She instantly started the finger pointing & angry words again. It took Brad talking to her & about an hour to calm her down again.

When we were at the Pharmacy today she picked up some Christmas cards... so I bought them for her. (She cannot make change... I don't think she has been able to since the end of Spring. She also is unable to write checks anymore.) Gayle & I already talked about using Sendoutcards to send their Christmas card this year... we did that last night. But I thought, it wouldn't hurt to let her send some more out. When we got home she wrote the first one out to her sister Nina. Then she got out my Rolodex and looked up Nina's address. She pulled out a card for my cousin Joe who has an LA address... She wrote his address on Nina's card... as far as I know Nina has never lived in California & she currently lives in Georgia. Brad was watching her do this & I think it even shocked him that such a simple task was too hard for her. She just wasn't able to make the connections.

On a good note... the Trazodone seems to be helping her sleep. I don't hear her getting up all night long again, a few times, but not every 5 minutes like before.

36 Years

Well... today was Cathy & Gayle's 36th Wedding Anniversary. And unfortunately Cathy is still angry at Gayle. (Fortunately for us, she is only angry at him & not all of us) This morning Gayle asked her if she would like to go out to eat tonight or drive around & look at Christmas lights. All she could do was point at him & say the same things over & over again. So... shaking his head & shrugging his shoulders he left for work & we left for her annual Physical appt. Before we left I checked my email & there was a note from Rhonda. I had Cathy come over to read it... it said Happy Anniversary! She smiled & said, "36 years... I was married for 36 years."

Cathy has always really liked her Dr. here in Iowa. So there was no issues of her not wanting to go today, in fact I think she looks forward to it. But she wasn't in the best of moods today. Not as many laughs & smiles. However... it could be because she also is sick like me. Dr. Carlson put her on abx to help. And after talking to her today I finally feel comfort in starting her on the meds again. So I decided to try the Trazodone & Seroquel both again tonight. Maybe the Seroquel will help with all her anger with Gayle... if not, at least we can say we tried something. And hopefully the Trazodone will help her sleep & not be so restless at night.

The hard part is how much her speech & communication have declined the past few months. She used to be able to answer your questions so you would know what she wanted. Not anymore... it becomes a guessing game everyday. Guessing what she wants to eat, how she is feeling, what she wants to do... etc. I was never very good at playing Charades... & now that seems to be what we do all day. I have made a small picture book with Pictures of family members, foods, & a few other things that she can point to. This helps.

After her appt. today we headed to the Pharmacy to fill her rx. While we were waiting she pushed the cart straight to the toy section. She wanted to Christmas shop for the Grandkids! Gayle had already given us all money to go pick out something to put under the tree... but I thought, I will let her pick out something for each one for under $5. So, for 20 minutes we shopped, she laughed, she smiled, (I called Tracy for advice on what to get the kids). A few times I had to put things back that cost too much... but she did real well! It was exciting to see her do that! It was like the Christmas Spirit was in us & I was finally excited for Christmas this year!!! However... in the middle of shopping we had to find the restroom (as usual), she couldn't remember where it was & I had to redirect her a few times, I felt almost like a mouse in a maze trying to reach the cheese (restroom)... she lived here & shopped here for many years, even working here for a short while... & she couldn't find the restroom. We also made quick stop at Sam's Club to pick up more essentials... that seem to disappear quickly now... Toilet Paper, Kleenex, & Paper Towels. Cathy also grabbed a huge bag of M&M's... I let her keep them. :)

On the way home we stopped by the local floral shop. We had gotten a call that Cathy had a delivery, so due to the ice in our drive we went to pick it up. Cathy was so excited! She even temporarily forgot she was mad at Gayle & bought him a card! In the parking lot she wrote on it, "Happy Anniversary!" & on the envelope she wrote "Gayle & Cathy". The Poinsettia was from Jean & John! It is Lovely!



Once we got home she went straight to the wrapping paper, scissors, & tape. Once she gets something in her mind there is usually no stopping her without an argument, so it was useless to try & talk her in to waiting until we got back. She started wrapping... I had to go get the kids from school & luckily Brad had just gotten home from work so he tried to help. She was wrapping so fast that she started trying to wrap 2 presents in one, she kept writing the wrong names on the presents (but at least she was writing!), & she had tape everywhere! When I got home from picking the kids up she had the presents all ready to go. But... she also had brought her suitcase & things out again. Uffda. She had Misty's dogfood & bag in the back of Brad's truck, her bag of movies & suitcase by the front door, & Brad said he had been carrying things up and she kept carrying them back down. Here we go again.

When Gayle got home we decided we would go out to eat & then drive and look at Christmas lights together. He also brought her home a Poinsettia (She LOVES them & was happy to have 2!) He had a few things to do so he sat down at the dining room table to work on them before we left. Brad & I were in the room and Cathy kept pointing & raising her voice at him again. At one point she grabbed the roll of wrapping paper and swung it, almost hitting at him, but she hit it on the table next to him... !!! We all tried calming her down. Gayle finally said, "Cathy, I am doing all I can to help. I am working hard & trying to get you the best doctors and care I can. I am doing all I know how." For a little while that seemed to help.

We went out for supper & she was pretty quiet. Randomly saying her words as usual, that is why we picked a noisy restaurant. I handed our waitress one of the cards I had gotten off the ftdsupport site. They say, "My Mom has an illness, which causes memory loss and confusion. Please understand any unusual behavior. Thank you for your patience." (A HUGE THANKS to Jeff... I don't know him, but the website he has put together has everything we have been looking for!! The link is listed at the bottom of the blog.) On the way out of the store she was looking at a Christmas sweatshirt so Gayle bought it for her.

We drove through the Christmas Lights in Des Moines, Jolly Holiday Lights, it was amazing & temporarily takes your mind off of things. The kids Loved them & Cathy enjoyed them as well... while eating her candy canes.

When we got home I made the mistake of turning on the TV... the Victoria's Secret Fashion Show was on tonight. Oops.... this set her off again! She went straight to bed, but then continued coming out every 5 minutes to point & say, "Actually, on Fire!" at Gayle & Brad (Since Brad was also watching these Women on TV!). I tried to explain to her that it was ok... but to no avail. Finally the boys changed the channel... they seemed to be a bit disappointed about it... poor Gayle & Brad. After that Brad went in & sat with her for a while. She didn't come out again.

Movies this past week: The Christmas Card, Eragon, anything on the Hallmark Channel or the Family Channel

Thanks to Everyone who sent a card, called, &/or contacted us in some way about their Anniversary today! It was great to hear from everyone! It was a tough day... a happy day at times ... yet a sad day.

Adventures with Mouthwash...

Yesterday Cathy had another good day. (Hallelujah!) My Mom came out & sat with her while the kiddos and I went to Sunday School/Church. Mom said they made Hot Chocolate together... however Cathy only heated hers up for 15 seconds, so it was more like lukewarm Chocolate. Brad got home from work before we got back. So the kiddos & I were able to go spend a few hours at my parents house while Brad was home with his Mom. It is such a nice break to get out of the house... I feel guilty... but the kids & I both need it at times. (I am so Thankful that my family is close & that my Mom is also a nurse & has a tender loving heart!!)

Cathy's cold seemed better yesterday, she wasn't coughing and using as much Kleenex. Gayle came at about 8:30 last night with Misty. Cathy had been in bed since 7:30 so I knocked on her door (it was locked, I might have to start using the tip I read on the Hoffman site about rubber bands) to let her know they were here. She came out smiling & laughing... like a kid on Christmas morning! She was SO HAPPY they were here. She hugged up Misty & later in the night she gave Gayle a hug & a kiss on the cheek!

When she went to bed she started coughing again. So I got her some NyQuil. She came out to take it & Brad and Gayle were talking in the living room... whatever Brad said made her laugh... (NOT good when there is something in her mouth!) She then spit the NyQuil across the kitchen... it was all over her, her hands, her face, her pj's, and the kitchen floor. She just kept laughing. Good thing I have a strong stomach to clean these messes up... both the guys hid out in the living room. (Chickens!)

This morning she was coughing a bit again... & I have been sick all weekend with a sore throat. I called & made an appointment for myself today, Cathy has her yearly physical appointment tomorrow so I thought we would have her checked out then. I tested positive for Strep Throat... Uffda! So that explains why I have been so tired & achy... I was trying to blame it on my flu shot. (Thanks Christy for giving me one Friday... no bruising at all... you are Awesome!!)

Tonight Cathy's mood flipped quickly again. She looked at Gayle and shook her finger again... (here it comes...) "Actually, On Fire!" (Sigh... I was hoping the anger had passed.) Neither of us could figure out why she was mad. I asked her with no relief. I even got her paper & a pen... all she could do was draw a circle on the paper. She answered once spelling the word "A.S.S.". Too which our 7 year old son came in the room (perfect timing) and said, "Mom, that is a bad word!" I hurriedly got the kids off to another part of the house to play while we tried to figure her anger out again. We had planned on going out for supper... but she wasn't going. She sat down in the chair in front of her movie, put a blanket on her lap and said, "No." So... Gayle took the kiddos out for supper while Cathy & I stayed home. (Grandpa Gayle is getting braver! I called Brad & he couldn't believe his Dad had taken the kids out without me!)

While they were gone I again gave her a piece of paper & pen. I wrote out, "I am mad at Gayle because..." leaving it for her to finish. After some time I went back over & she had re-written exactly what I had wrote... no answer. I sat down and had the heart to heart talk with her again. She just waved her hands. I asked if she wanted me to stop talking & she said, "No" & smiled. She patted my shoulder.

Gayle brought her back a Double Cheeseburger from McDonalds... her favorite. She was fine when they got back. Like it had never happened.

I am able to brush off her outbursts & strange behavior... but I worry about Gayle. He says that he just lets it roll off his shoulders. But I can't imagine what it is like being the spouse... watching your Loved One this way.

Tonight she was coughing again so I went to get her some NyQuil. (I can't leave it with her because she will Overdose on it.) When I walked back into the room she was starting to chug the kids "Cool Blue" mouthwash!!! She had found one of their medicine cups and filled it up with mouthwash!!!!! She is so fast & sneaky!! I guess I am going to have to hide the kids medicine now too, & their mouthwash. Once Again... she was laughing. But I will take the laughing over angry any day!!

She is happy to have Misty here. Poor Misty has gotten at least 100 kisses today!

Tomorrow is Cathy & Gayle's 36th Wedding Anniversary. I am hoping for Gayle that she has a good day.

Fingers Crossed...

Today was a much better day! Yesterday, however, was probably the worst so far.

Brad stayed home with his Mom & Mia yesterday when I went to work. She was angry again yesterday and short tempered. Ryan came with his family to visit for a few hours & she was even more angry while he was here. Shaking her finger in his face and saying some not so nice things. (We know that this isn't her... it is the disease... but it is hard to take & understand)

After Ryan left Brad sat her down and had a talk with her. (Basically, we are doing all we can do to help, but if she is angry it isn't going to work... our kids have to come first & it has to be a good environment for them) He said she broke down crying. She would say "nursing home" and he couldn't get exactly what she meant by it... other than she didn't want to go there. He also asked her if she was scared and she shook her head yes. But after the talk she seemed more relaxed. She knows we want to help her. When I got home she was less irritable and seemed fine with the kids. (Hallelujah!)

After she had gone to bed we heard her coughing... I went in to check on her, it sounded as if she was either choking or coughing up a lung. She must have caught a cold from last week. I got her some nighttime cold/cough medicine and that seemed to help a bit... Maybe this is why she has been so angry... she was getting sick.

I talked to Chase about things again last night. We talked about how Grandma has been angry since Thanksgiving. How he can come to me if he has any questions, fears, worries, etc... I told him that if she continues to be angry that she will go live in Wisconsin for a while. (I didn't tell him where) And he got upset. He said, "But Mom! I like helping Grandma. I want to have her with us!" We had a good long talk & tonight he came up to me again. He said, "Mom, you said I can talk to you whenever anything is bothering me." And I said, "Yep." He said, "Mom, I am sad that Grandma is sick. I need a hug." So... sometimes a good hug is better than any words or medicine.

Today she was tired. She was only coughing when she was laying down. She was fine with the kids today and very quiet. She fell asleep watching a movie before lunch & she took a nap from 1-4 this afternoon. This evening she was quiet also. She came downstairs while I was talking to Barb & asked, "Is that Dad?" I let her talk to Barb for a few minutes but that seemed to frustrate her... she couldn't get out what she wanted to say. After that call she kept going to the window saying, "Dad or Gayle". So I called Gayle and she talked (well mostly listened... since she usually can only repeat what you say) to him a few minutes. That seemed to relax her even more.

Today we were in the middle of a winter snow/ice storm warning in Iowa. I was a bit nervous since Brad is in Nebraska at work (he is always out of town when the weather gets bad!). He showed me how to use the generator, I filled the tubs up with water, & had the pellet burner ready. The electricity went on & off about 10 times... but always came back on! PHEW! Cathy kept going back to our room & turning on our weather radio. I asked her if she was nervous and she shook her head no. I thought about heading to my parents house in town... but we decided to stick out the weather... & luckily the house is still warm and the lights are still on. I wasn't sure how Cathy would do without her TV & movies!

However... we went through another 2 boxes of Kleenex today. If you are keeping a tally... that is over 16 boxes in 2 months.