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)

Tuesday, December 4, 2007

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.

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