Our Families Journey Caring for a Mom with FTLD-MND

It is important to know as you read this journal that this was Cathy's life post diagnosis...

To know Cathy Truly you must know that she was: a Wife, Mother of 3 boys, Grandmother of 9, Sister, Niece, Aunt, Daughter, and Friend.

Our families journey began with Cathy's diagnosis the week of Thanksgiving 2006, Cathy was 52. Her original diagnosis was Pick's Disease/FTD. Looking back her symptoms most likely began 3-5 years before diagnosis. Most of the Doctors have told us that from onset of symptoms to death... the average timeframe is 4-7 years. (sigh) In the end her brain autopsy showed Frontotemporal Lobar Degeneration with Motor Neuron Disease FTLD-MND. (Basically... Frontal Lobe Dementia with Lou Gehrig's Disease)

Sunday, November 11, 2007

Hamburger Helper Lasagna Sandwiches?

Sorry Folks... Here is the scoop on our week. Brad has been home alot this week, he had class 2 days this week for work & the rail has been moving VERY SLOW... so it is nice to have him home & have his help!

Sunday:
Jean & John stopped over for a visit in the morning. It was nice to see them & that always puts Cathy in a good mood & makes her smile. After lunch we headed home to Iowa... Cathy didn't seem to be upset about coming home with us this time, however Misty (her dog) was coming with us and that seemed to make her Happy. So we hit the road... Cathy, 2 kiddos, 2 dogs, & me... needless to say it was a LONG trip with lots of bathroom stops, snack stops, & arguments over what to listen to on the radio (Cathy wanted Christmas songs, Mia wanted kids songs, & Chase wanted Dad's Rock-n-Roll songs). We miraculously made it home in just a little over 5 hours & before the sun went down.

Monday - Friday:
The first 2 days home Cathy kept moving things out of the corner in our living room where we usually put up our Christmas tree... hint hint... I wasn't really ready to put another tree up (since I had just put hers up in Wisconsin)... she also kept looking into the closet that holds our tree, opening the door & closing the door, over & over again ... I realized she wasn't going to give up. So... Brad brought the tree up & the kids had fun decorating it. At first I said "No Christmas decorations in the house yet... just snowmen..." but that only lasted a few minutes, before I knew it Cathy & the kids were bringing up the Christmas decorations. So... it's Christmas at the Handly's! The Schwans man came Wednesday night and said, "Your Killing me... it's not even Thanksgiving yet!" Yep... I think we are the first house in Iowa to put up decorations!



I bought her a new movie this week... "The Christmas Card" it is a great romantic Hallmark movie & she LOVES it! She has watched it everyday since over & over again. She sings along to the Christmas music & carries the DVD case around. I am thankful that Eragon & The Holiday are getting a break... I needed a change also!!!

One night I made hamburger helper to use up some Hamburger in the freezer. She made a plate for her & Brad (this is interesting to me... she used to always take care of her boys & she still does... she will make a plate for Brad & her if he is home). I looked over and she was getting out the hamburger buns and putting the hamburger helper lasagna in the bun...?... Brad doesn't remember her ever doing this.?.. hmmm. The kids then wanted to try it that way & we all ended up having Hamburger Helper Lasagna Sandwiches! Yummy...???



Gayle came down Thursday evening and spent the night. She had remembered him saying he would be coming down and on Wednesday she put her bags down by the door, when I told her he wasn't coming until tomorrow she took them back up. But then Thursday morning they were by the door again. She attempted to make Gayle breakfast Thursday morning again... He headed home Friday to get ready for Deer Season/Thanksgiving next weekend and to Bow Hunt Saturday. He is putting up a dog run beside the house... HALLELUJAH! Since during deer season with the whole family there we can have up to 22 people & 4 dogs at a time... it gets a little bit crowded.



My friend Jenny came over to cut Cathy's hair. (THANKS SO MUCH JEN!) Cathy has cut it the past 2 weekends when we were up at her house. This last weekend it looked almost like she put a bowl on her head & cut the top layer of her hair around the bowl... so Jenny tried her best to even things out a bit... it looks better than it did, but there wasn't much she could do. Cathy sat very patiently while Jenny cut her hair & seemed pleased with the results. :)



Saturday I had a Sendoutcards open house so I took Cathy & the kids to Ryan's house. The drive down was tough. When we were passing Ankeny on the interstate she pointed like I should get off at that exit. I explained that Ryan & Gretchen hadn't lived in Ankeny for a few years & that we were going to their home in Dexter. She said, "NO" and gave me the look. She also said, "JcPenney's, Gretchen works at JcPenney's." (Gretchen has never worked at JcPenney's) She then started repeating the Ankeny zip code over and over for the next 45 minutes. When we got to the Dexter exit she said, "NO, Ryan does not live here" and gave me the look again (stern facial expression with eyes glaring... I don't like this new look, it is almost a bit scary). I tried to again calm her by saying yes he is living here now... fortunately he called while we were talking and that seemed to help. You will have to ask them how it went... I think she was restless at their house. But by the time we got home she seemed better. She did go to the bathroom alot... in fact Brad counted past 20 times in about 2 hours... going to the bathroom seems to be related to stress situations.

Today:
...we had a rough start. Brad got called to work in the middle of the night. When I got up this morning it didn't hit me until about 8:30 that I had to find someone to watch Cathy while the kids & I went to church. I called my Mom & she said it was ok to bring her in to their house. So at about 9 I told Cathy we were going to Church & she was going to spend an hour at my parent's house. She said, "NO" and walked away from me. I tried re-wording it a few different ways with no luck & I kept getting "the look". Too make a long story short... it took 20 minutes & me having to retell the story about why she can't be alone anymore (which always makes me feel like I am going to start bawling) before I got her to come along... actually it was me saying, "Brad will be mad at me if I leave you alone and something happens to you." that got her to stand up and put her coat on. I had her bring her movie to give her something to do at my parents house that would be comforting to her. The kiddos & I got to Sunday School late but we made it. It was such a tough call deciding whether or not to teach this year... if I would have known how quickly she was going to decline I wouldn't have taught, but at the time I didn't want to give it up... it is something I enjoy doing... I am so Blessed to have Tammy teaching with me, but I also feel bad that she is getting the majority of the work.

I also made the executive decision to stop giving her the medication the Doctor prescribed... it doesn't seem to be helping & she isn't sleeping any better. I can't bring myself to give her the sleeping pill either... it just seems to be a pill with too many bad side effects also. So I am holding out for her next appointment to see what else we can try for sleep.

Brad reminded me that in her Will she had mentioned something about "always give me hugs & tell me you love me". I am going to have to find our copy and see exactly what it says... but in the meantime we are giving her all the hugs we can & telling her we love her as much as we can. This always brings a smile to her face! It seems like the best medicine we can give her.

2 comments:

Unknown said...

You are such an amazing person!!!

Beth said...

Martin has to say that... he is my brother! :)