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.

Anger

Well... Unfortunately it seems that we have entered the anger stage. I had sincerely hoped that we had either gone through it this past summer (when she was yelling at her dog... which is something she never would have done & she was less patient with the kids) or we had skipped it all together. But I think I was wrong... actually I still am hoping I was right & that this is just a quick phase or reaction to the busy week last week... time will tell.

These past few days she has spent most of the day pacing the house. From her chair to the window over & over again. She points & shakes her finger saying, "Actually, on fire!" in an angry voice with an angry look on her face. She will pick something up and slam it down saying, "Actually, on fire!"

Brad talked to her last night & she said, "nursing home"... the only thing I can think of is that we talked about it last week at the Dr. appointment. He brought it up in front of her. Brad tried to explain again the situation we are in & how we are trying our best to prevent that for as long as we can. She seemed to settle down after that. But then again today it flared up when our dog threw up in the kitchen...

Cathy gets very frustrated with our dog, Lizzie... she is constantly putting her outside & pointing at her saying, "Actually, on fire!" Yes... Lizzie is still a puppy & she is 90% house trained... she still has lots & lots & lots & lots & lots (I stress lots!) of accidents when she is either nervous, excited, or scared. This makes Cathy very angry... it might be because she has watched me get angry with her over the past few months. I don't ever remember Cathy not liking a dog. In fact, we used to joke that if her grandkids & her granddog were drowning... she may rescue the granddog first (I know it sounds terrible... but she truly is a dog lover!) .... But Lizzie... she does not like. She has never been a huge fan of small dogs, when they had Tiffany (a Shih tzu) she would call her Gayle's Princess. She is more of a lab lover than anything. And unfortunately for Lizzie she is not a lab, she is a Jack Russell. Lizzie will try to sneak into Cathy's room at night & will always get thrown out. At times though she gets lucky & Cathy will let her sit on her lap for a bit... but it usually doesn't last long. I have talked to Brad about finding Lizzie a new home. In fact I called one of the no-kill animal shelters locally and talked to them about our situation this summer when we discussed having Cathy here permanently. Having Cathy & Lizzie living here would not be good for either of them... the guy at the shelter said, "would you get rid of your child?" Of course my answer was , "NO!" So I hung up feeling helpless. (I guess I am not cut out to be a dog lover... that is why I am a nurse & not a vet tech) We have discussed trying to find her a new home, but it will be hard since she is not 100% house trained and everyone we talk to says that may just be the way she will always be... we have tried it all, read every book, & looked online. No luck.

Tonight I thought I would try to cheer Cathy up by taking her to a movie. She Loves movies & 'Enchanted' was playing in Ames. So Cathy, the kiddos, my Mom, my Grandma, & I headed to Ames tonight to see the movie. She Loved the Movie (it was quite cute) & sat very well through the whole thing. However... she coughed through the whole movie. I noticed the people around us kept looking our way. I am guessing they thought she was sick & they were worried they might also get sick. But in fact... she was choking on popcorn because she was eating to fast & then eating more while she choked... I took it away & got her a drink... & then she kept coughing, almost as if it was a nervous habit. I whispered in her ear a few times to cover her mouth & she would stop for a bit & then start again. Uffda. Now that I think about it she has been coughing at home alot... but a public place isn't good, especially when people are thinking about the Flu... urgh again. Maybe we will have to sit in the back of the theatre next time... or we will just stick to rental movies.

When we got home she was irritable... but just like tired kids, evenings are worse than mornings.

This is one of my big worries... I want the kids to remember Grandma being Happy, not angry... Are we making the right decision having Cathy live with us???

Chase can usually make her laugh... he has made it almost a sport. He will say, "Mom, I made Grandma laugh!" or "Mom, Grandma came over and gave me a hug or a kiss!" Tonight after that happened she came out of her room in her pajamas that say, 'my dog walks all over me'. Chase loves to say, "Grandma, does your dog walk all over you?" when she wears that shirt & that always makes her laugh.

I am working tomorrow & Ryan was planning on coming up but he had something come up with his dog business & the weather isn't looking good in Iowa this weekend... so Ryan may be coming for a while depending on the weather. Luckily Brad is home tomorrow since the railroad is moving slow & if he goes to work my Mom is home & she will help out. But I feel bad asking for her help again. We have made so many changes & given up alot to help... & we don't regret it... but we cannot expect everyone else to do the same.

I love this Albert Einstein quote, "Only a life lived for others is a life worthwhile."

If things improve & Cathy stays with us... which I hope they will... I don't think I can continue to volunteer to help at work, it is too stressful trying to figure out who can stay with Cathy. We have looked into adult daycare, but Cathy at this point is unhappy if she is not in a place she is familiar with & the Dr. wasn't sure that was a good idea for a temporary situation. In home care is better & doesn't upset her... but the cost of it is too much.

THANKS again to Rhonda for coming over last night to sit with Cathy. She sat with her while we took our family pictures at Church.

So.... I am probably going to fall asleep praying again tonight.... "Please help this pass quickly..."

HOPE

Thanksgiving

I am finally recovering from a long week... I took a 2 hour nap tonight after working this morning from 9-1 for my friend Anju. I didn't realize how tired I was... you would think that a nice relaxing week in Wisconsin would rejuvenate you. But... with Cathy's illness, 8 kids, 5 dogs, & everyone being crammed into the same house... it was a bit chaotic at times. A Big Thanks to Brad for watching the kiddos & his Mom tonight, he made supper & did dishes!!!

The next few entries are a summary of what has happened since Thanksgiving day... I was too tired at night to get to the blog or I was visiting with family. Hope you all had a Wonderful Thanksgiving!

~~~~~

When I got up Thanksgiving morning I was greeted by Gretchen making breakfast in the kitchen & pointing at a casserole dish of frozen green beans. Yes, Cathy was getting ready for Thanksgiving dinner already, and we weren't having it until 5 pm! Gretchen said she had tried to talk Cathy into stopping but couldn't. I said, "lets just let her make it... & we will fix it later, she wants to help out." So at 8 she put in the frozen green beans & it sat on the counter uncovered until 10 when she added the cream of mushroom soup which sat on the counter until noon when Cathy went to bed. While she was resting Gretchen helped me dump it & remake it... we cooked it while she was sleeping & hopefully she didn't notice it was now made of french style green beans & not frozen cut green beans... uffda

Yes... Cathy slept from noon until around 4. She has only done this a few times & it always seems to be after change occurs in her life. I checked on her a few times and she was cuddled up to her pillow.

More family arrived today... Toby & family arrived at 4 am & Nicole came at about 5 pm. And unfortunately Brad had gone back to work on Tuesday morning & he didn't make it back up til Saturday night... by the time he got back all the leftovers & Bonnie's cookies were gone... poor Brad... he ate Thanksgiving dinner alone at Happy Chef in Iowa. :( Rhonda & Larry stopped by that morning to say Bye... they had decided to head home early. (below is a pic of Cathy & Rhonda I snapped Thanksgiving morning) Thanks to Rhonda for all her help & keeping Cathy laughing all week!!! We missed you after you left!! And Mia missed her buddy Larry!



After Cathy got up she wanted to help so we asked if she would set the table. She set for 6 in the dining room & 4 out in the garage... (Gayle had brought in the patio table & chairs to his heated garage for the week. Plus the kiddos rode their trikes & scooters in there all week... it was a nice place for them to work off energy!) Never mind that we had 15 adults & 8 kids to feed... but she was trying to help out. When Nicole arrived she greeted her with a big hug! It is a blessing that she still knows who we are!!!!

That night Cathy snuck out of the bedroom & was mad at Gayle again. Every night she will peek her head out of the door and look at us, usually smile, sometimes wave at us, & then go back to bed. But that night she also pointed at Gayle & said, "You... (& she mumbled something we couldn't understand)!" while shaking her hand at him. We all looked shocked & looked around at each other... What?????? She had done the same thing the night before & Rhonda and I couldn't figure it out then either. She also did it Friday night when Jean & Dave (a family friend) were over after supper. 3 nights in a row... but not on Saturday night. I went into her room each night & tried to ask what was wrong. No luck... I guessed and she would say nope & just point towards the living room and say Gayle... each time I would say, "I am not a very good investigator am I?" And she would smile and reach over and cup my cheek in her hand & pat at it.... (in which I almost cried each time...) But I never got my answer... I guess I wouldn't make a very good private eye... Agatha Christie & I share the same birthday... I had always loved her books... but I guess I am not cut out at that mystery stuff.

So all & all Thanksgiving was a good, crazy, & mysterious day. Tracy, Gretchen, & I attempted to cook Thanksgiving dinner while 8 kids played around us, the 3 youngest crying... & the men were all out hunting... Thank goodness for Barb bringing up half the meal, Bonnie bringing her goodies, & Ari bringing up snacks as well! I guess it gives us a HUGE appreciation for all that Cathy has done over the years!!!! You don't realize what you have until it is either gone or slipping away from you.



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Friday Cathy wanted to hunt... that morning she sat in the Garage with the guys while they cut up the 3 deer they had already gotten. She sat in her orange hunting jacket. After they left she wandered around all day in it & at times had on her orange stocking cap and you could only see her eyes peeking out. I caught her a few times trying to get into the gun cabinet. She said, "I can't get my rifle out." I told her I didn't have the key & besides that she couldn't hunt... she didn't have a license this year. And she just sighed each time, dropped her shoulders, & walked away. Cathy grew up in those Wisconsin woods... they hunted to eat... they didn't have much but they had the land. She loved too hunt.

Gayle took her out to the stand by the house that evening. She was so excited to go. They didn't see anything but he said she surprisingly sat very patiently still. I am so glad that he gave her that chance to sit with him, even if she couldn't handle the gun, she could sit in anticipation of seeing a deer with him. I know that made her feel good.



Tracy learned not to leave your cell phone laying around... Cathy likes to help out by plugging your phone into the charger. She grabbed Tracy's phone & plugged it in her bathroom... she must have thought it was Gayle's... it took us a while to find it. I know that if I can't find mine to check out chargers... she has usually plugged it in for me.

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Saturday Cathy went to Baraboo with Toby & Tracy. They took their 2 oldest & Chase with them to Build-a-Bear and I got to stay home and have some Auntie time with the 2 youngest & Mia. Cathy really had a good day! Honestly I was worried about how it would go for them... you never know how she will do... I am so Thankful that she had a good day. Tracy said she was so excited to build her own bear, she picked out a soft fuzzy bear with patches on it. They put the 2 oldest kids voices in it saying, "We Love you Grandma!" and Toby said, "I Love you Mom!" Cathy squeezes the hand & you can see her face light up! It was the Perfect Gift for her!!! Patches is sitting on her dresser here in Iowa.

Oh yeah... did I mention that Cathy needed a new suitcase because her zipper was broken. And Rhonda went with her to get one. Well... one morning Cathy burnt her old one... despite us telling her not too. There it was, standing up in the burn barrel smoking away... She still LOVES to burn trash! Twice I left notes for her on the trash can, "Cathy, DO NOT BURN, cans inside." She burnt them anyways.

~~~~~

So much more happened over the week. I can't remember which night it was... but one night Cathy came out when it was just Gayle & I still sitting up watching the news. She pointed towards the bedroom and said, "Snake!" (If you know Gayle... you know the one thing he hates is snakes!) And normally in mid November I would go, "Yeah, right!" But... after the snake episode in Wisconsin this summer... I wasn't sure... it could be a snake! I was thinking, 'Why is Brad always gone when this happens!' (This summer a snake came home in our pool bag, just a small Gardener snake, but a snake! I set my bag by the kitchen stove turned around & there it was slithering across the stove top! I yelled for Gayle... he didn't come... chicken! Cathy came. & there we were chasing a snake with a steak knife... I know, I could have picked it up... but I wasn't going to touch it!!! And Cathy normally would have just picked it up and carried it out... but not anymore... she was just as scared of the poor little guy as I was! Needless to say, the poor thing was beheaded by us & thrown outside!) So... I hesitantly walked into the bedroom with her & peeked around the bed... there by the window was a long... black... skinny... curled at one end... plant leaf. But for a moment, my mind thought it could have been a snake. Cathy was sure it was until I picked it up & she laughed! She took it out to Gayle laughing. I am just Thankful that it wasn't another snake!

If you haven't noticed I am always guessing how she feels. The best way to know how she feels is to watch her actions. She may not always answer the way she wants to... that is one thing the Dr. had told us early on. She may say no and mean yes. But she always does what she wants. On Sunday the kiddos & I headed home after lunch. Brad was staying until Monday morning. We asked her what she wanted to do... go home with us or wait til tomorrow with Brad. She couldn't seem to give us the same answer, once it was with me, once it was with Brad. But... she had already put her suitcase in my van early that morning.... and after we asked her what she wanted to do she brought it in. There was our answer... she wanted to stay.

That afternoon Gayle, Gary, & Jr. took her with them to sit in the deer stands while Brad drove the deer. She got to go hunting again. :)

We also discussed Christmas again. Saturday morning Toby, Ryan, & I (since Brad wasn't up there & he had told me what he wanted) talked about it. It was hard to decide since we all have different feelings about what we should do... the last thing we want is to fight about it... after all the most important thing is that we are all together. I can't speak for Toby & Ryan, but for Brad & I we want to give her the gift of having Christmas in Wisconsin again. She used to speak out about having Christmas up there again. They moved to Iowa when Brad was in 7th Grade and she missed Wisconsin SO MUCH. She finally got to move back up there 4 years ago but we always have Christmas in Iowa... since all 3 of us girls have our families here. To us it is almost like "Make a Wish" foundation... giving her something material now seems irrelevant, but giving her something she always wanted after all she has given up for her family seemed so important to us. Yes... it is going to make it logistically hard for all of us... Brad with work, us girls with our families, & more traveling for everyone. But it is just one year. After this we can go back to our same old routines. Sometimes I think she is past the point of understanding we are having it up there for her, but other days I think she completely understands it all. Gayle said she has asked to have it up there over the years & he feels that it was important to her, but he wasn't going to make the decision, he wanted to leave it up to the boys to make the right call, he knew it would be a hard call. So... we are having it in Wisconsin. Hopefully everyone will be there... hopefully we will all still enjoy being together & Cathy will enjoy one last Christmas at home in her beloved Wisconsin.

Testing again

Well... it was another restless night. Last night I was woke up by Cathy opening our bedroom door to let our dog out. I thought... it can't be morning yet!??! (she does this every morning when she gets up) I looked at my watch & it was 1:30 am!! I got up & she was dressed, the coffee pot was brewing, & she was get ready for breakfast. I stopped her in the hallway & tried to talk to her... she just gave me this blank look and kept walking, her eyes seemed to be glazed over (it is a look that is more & more frequent when she is tired). I caught up with her in the kitchen and talked to her a bit... I finally got her to head back to bed.

When I got up this morning at 7 she was packing her suitcase & needed help with it... the new zipper had her confused, but we got it figured out. I explained we weren't going back to our house today. However we were going to LaCrosse. Her eyes got big & she knew exactly what that meant... another visit to the Dr. She walked out of the bedroom shaking her head.

Jean stopped by at 8 this morning to take her out for coffee. They were out for about an hour & she said Cathy communicated fairly well with her. She did clearly say something like, "life sucks..." She was distressed about going to see the Dr. again and repeating the testing. Jean stayed and went through some of the old pictures with us. We found a picture of Gayle, Toby, Brad, & Scott with their fishing catch... Scott is Jean's son that the boys grew up with. They have alot of fun memories with him! I also got a good picture of Jean & Cathy together today.

We headed to LaCrosse at noon for her appointment. Rhonda came up to stay with our kids and Ryan & his family followed us to the appointment. I am so glad Ryan was able to come. Cathy was also very happy Ryan was coming. On the way there she said, "I can't believe... Gayle... not...", I reached over and put my hand on her arm and said, "are you sad that Gayle isn't coming?" and she said, "nope". I asked her if it was okay that he stayed home to go hunting and she said, "yep". She seemed more relaxed walking into the clinic today... Ryan walked with her and hugged her to his side... she smiled & laughed. We met with a different social worker today, Terri, she was very helpful & seemed to care about what we were saying. She offered some advice to us that was helpful. While we were with her Cathy repeated the testing... Hooray! She did it!!! (last time she refused) Then we went to her room and waited for Dr. Loepfe. As Ryan & I walked into the room she said, "alligator." (One of the testing questions is naming animals... today she could only name 4, repeating 2 of them & last year in November she named 13.)

Ryan sat next to her & she put her head on his shoulder for a second & smiled. (It almost made me cry.) I sat where I have the past 2 times & Gayle's seat was empty. I think it was good in someways he didn't come... it allowed her to be independent & not worry as much about answering correctly... she always seemed to look at him for help & today she had to try and answer on her own.

Dr. Loepfe came in & greeted us. He reviewed the testing & notes from the Social Worker. He said he was 'shocked' at how fast she is progressing. His concern worried me mostly because he also said that since it is progressing so rapidly it is more likely to be genetically linked.... genetic... my big fear!!! He did say that genetics is obviously not his area & that we will get more answers when we go to Mayo in Rochester next month. We talked again about how she is doing: eating (better, she had lost another 5 pounds), sleeping (not so good), getting into trouble, depressed (she said no), etc... He feels that she is doing as well as can be expected & that we should continue taking it one day at a time. No meds at this time other than maybe something to help her sleep. (We have an rx for Trazodone that I will try when we get home next week.) Ryan was able to ask him questions that he was worried about. Again Dr. Loepfe said a patient with Alzheimer usually has 15-20 years (and that is usually not diagnosed as quickly) and a patient with Pick's has usually 7-10 years from onset of symptoms... and unfortunately Cathy is progressing quickly. He mentioned that we should also start thinking about Hospice care.... Hospice... so we are ready when we get to that point, since things may continue as rapidly as they have... or... things also could slow down, everyone is different. Unfortunately the stages are hard to pinpoint, some people skip some & go through them differently, & everyone progresses differently... basically nothing is black and white. There is no book to read or path to follow. We are out on our own... but it does give us comfort to at least talk to him. He at least can comfort our fears and concerns. But he can't give us the concrete answers. I feel like I can see it in his face, that he wishes he had the answers, that it frustrates him to not be able to tell us exactly what is going to happen, he is compassionate & I am Thankful for that. It would be a hard job...

He also looked at me & mentioned that I looked better today, that he was worried about me last time... and worried how we were doing taking care of her. I feel it inside also... I don't think I am letting it weigh me down as much. I think that it helps that I am not working & that I am in a routine at home now. It also helps to have this blog... a place to put my thoughts & feelings... like giving it to God & letting him hold it for me. (Tracy is always telling me to do that with my worries... & she is absolutely right! My brother brought home this little wooden box for me when he went to Mexico... I have written down my worries & placed them inside it... Giving them to God is what is getting me through.)

"Be Still & know that he is God." Psalm 46:10

So, we go back to see Dr. Loepfe in 3 months. And we go to Rochester in a month. And in the meantime... we continue to do our best & enjoy the time we have.

Everytime I walk out of our bedroom I see this... I gave this to Cathy a few years ago... & she hung it outside the room we stay in up here... I look at it and think about how she used to be, how this was/is her house, she decorated it and made it hers, this is where she is supposed to be, & how you just never know what life holds for you...



When we got home tonight Cathy seemed fine. We headed down to Hoyer's for a KFC supper... Yummy. And then came back up to hang out with the Hansen's & Gary. Gayle was sitting on the couch & Cathy walked into the kitchen... when she walked back out she walked over to him pointing & said, "You...??????" She couldn't get out what she wanted to say... but she had an angry look & was MAD! I can't ever remember seeing her that mad! We all looked at her in astonishment & Gayle looked confused... Rhonda & I tried unsuccessfully a few different times to figure out what was wrong. We asked her if she was mad he didn't go today... "nope", was she mad he didn't come down to eat with us... "nope", could she write it down... "nope", and a few other things... "nope". She pointed at him like that at least 3 different times tonight. ???? She sat next to him while we watched "Chuck & Larry" (HILARIOUS!) but you could see it in her body language she was upset... hopefully by morning things will be better. Hmmm....

Toby & Tracy left North Dakota at 9 tonight. Nicole flew out of Salt Lake City into Chicago this morning (2 1/2 hour delay) & is driving up in the morning from Janesville. Hopefully Brad will catch a train out of Clinton tonight (or maybe deadhead... be bused or vanned back home) & make it up here by tomorrow night. And we can all be together for Thanksgiving.

The scary thing about Thanksgiving... is that Cathy is not able to help... she is here/but not here. That means that us girls have to take over for her... luckily Barb & Rhonda can help us through. The kitchen is not my favorite room of the house... I am usually in charge of the green bean casserole or jello salad... something I can not screw up. But turkey... urgh...

"Today was a Good Day"

We were sitting on one of the couches tonight in the Deer Shed & Cathy just blurted it out... "Today was a Good Day." That pretty much sums it up.

Luckily Cathy handled the no water situation pretty well... no toilet water coffee as far as I know. The kids were pretty restless this morning & just about the time that she was getting frustrated with them Rhonda showed up to take her out to Lunch. She didn't argue one bit & off to McDonalds they went for a Double Cheeseburger... her favorite. Rhonda also took her to Wal Mart per Gayle's request & got her a new suitcase. Then they headed to Deer Creek and she got Cathy a new Cardinal decoration for Christmas, Cathy LOVES cardinals! ( I forgot to add that this morning Brad caught her out by the burn barrel with her suitcase... she was planning on burning it since the zipper was broke.)

Brad had to head home this morning and work... hopefully he will catch a train tonight & be able to head back up for Thanksgiving or at least to see Toby & family for the weekend. We were all sitting around this morning & Cathy looked straight at me & pointed and said, "Get a job!" ??? I just laughed & said, "You think I need to get a job??!!" She burst out laughing & shook her head yes. I said, "Are you tired of hanging out with me?" And she said, "Yep." Brad thought it was funny.

Tomorrow is her follow up Dr. appointment with Dr. Loepfe in LaCrosse. Rhonda is going to stay with the kiddos for me so I can take her to her appointment. Hopefully she will let them repeat the testing again... I have tried not to talk to her about this appointment, hoping that if she isn't thinking about it she won't worry about it as much.

Earlier today the kiddos & I went down to Hoyers & made puppy chow... yummy! Cathy stayed at the house with Gretchen & her kids. When I got back Gretchen said, "she had a naked spell..." Oops... I had forgot to tell her about when Cathy does laundry... sometimes it just strikes her that she needs to wash her clothes... she strips down to her underclothes & heads to the laundry room. She did that today & it shocked Gretchen a bit! I read somewhere that they tend to get attached to things, even wearing the same thing until it has holes in it. Right now Cathy is attached to a red sweater that Aunt Charlene gave her & a Fleece top with a picture of a deer on it. She also insists on wearing the same 2 pairs of jeans... that are too small for her... but she refuses to wear the bigger size (Rhonda & I bought her some a few months ago & she got really angry with us... I am thinking about getting a pair again & just cutting the tags out & telling her they are the same size). I guess us girls are all the same... never happy with the size we wear!!

We went down to Barb & Gary's for the annual Prime Rib night tonight... Barb cooks Chris's recipe from the Cottage... it's top secret, I guess KFC & the Cottage can work together on this one (Barb & Gary own the KFC up here)... too bad Chris can't be up here to enjoy it with us!! Cathy did pretty well at their house tonight. She helped set the table but only set for 5 people when over 20 people were coming. After supper she headed down to the Deer Shed. She sat between me & John. John has been a family friend of Cathy's since he was a little guy. Cathy's family land up here has a gravel pit on it & John and his Dad worked the gravel pit, there is more history to all of that, but basically we will just sum it up by saying they are good family friends. John can always make her smile. And it was sitting by him tonight that she said, "Today was a Good Day."

Better Day

Today was a better day, she seemed to be more comfortable here today. She wasn't as restless and she was able to relax a bit. Gretchen & I sorted through old family photos. It was alot of fun! We found pictures from when the boys were little, pictures of Cathy's parents, & pics of Cathy and Gayle as kids. We also found Ryan's baby book & Cathy and Gayle's Wedding album. It was like being on a treasure hunt! They had lost a lot of pictures in the fire... they had a fire when Toby & Brad were little, before Ryan was born, and lost almost everything. We have a quilt at home that was made by the local church and given to the family after the fire. Cathy has a few quilts here also. (It is comforting to know that people reached out to them then & Brad loves the quilt because it reminds him of that.)

Cathy kept coming in & out of the bedroom while we sorted and made piles. She would pick up a few pictures and look at them... & then set them down in the wrong pile... it made it a bit difficult... it was hard to not get frustrated with her. When Gretchen & I weren't sure of who was in the picture we would ask Cathy, most of the time she knew who it was, but she seemed better at the older photos. Later on today we were sitting at the dining room table doing crafts with the kids & I looked up and saw that Cathy had put her parents photo up. She had put both copies (8x10's) up on top of the china hutch. It almost brought tears to our eyes... Brad asked her about who that was (he knew, but he wanted to hear her say it) & she proudly said, "My Dad & Mom."

When the guys came in for supper after hunting they sat around & looked through the photos. Gary & the Hansen's were also up here for supper tonight. They enjoyed looking through them, laughing, & talking about old times. We can't wait until Toby & family and Nicole get here Wednesday to look through them as well!

Cathy came in to hand me the phone this afternoon... she was saying, "password?" I took the phone and it was a lady at the bank. She was confused & said Cathy couldn't remember her password and was having a hard time communicating with her. I quickly explained that Cathy had an illness very similar to Alzheimers... the lady said, "Oh... that explains alot!" I quess Cathy had been calling them extremely often over the past year or so asking for her checking account balance, but up until today she had always known her password. She did say that she hadn't called in the past few months... I explained she was living with us now.

Jean stopped by again this evening. She had coffee with Cathy & visited for a while. I think Cathy enjoys having someone stop just to see her. It makes her feel special.

I better get off to bed... tomorrow may be an interesting morning! The kitchen faucet broke tonight... we ran the dishwasher but not all the dishes fit (9 adults & 4 kids for supper) & we can't fix the faucet until the hardware store opens in the morning. Cathy is going to be confused & frustrated. Gayle is afraid she will use toilet water to make his coffee in the morning. Ha ha... I doubt it... but one never knows anymore...