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)

Saturday, May 24, 2008

Boat Ride

Today we brought Cathy out to the campground for the afternoon. Hansen's are up from Iowa along with the kiddos & I. Gayle picked her up before lunch & we all headed to the Lake. We ate lunch at the lake... Sloppy Joes didn't go over so well... we finally took the meat off the bun and she was able to eat that a little better. But she did very well with the Pistachio salad - 4 helpings!!! (This was always a staple at her dinner table!)

While we were unpacking she wandered around the campsite a bit. The campground was always one of her favorite places to be. I have heard many stories over the years about when they camped out all summer with the boys & all the fun times they had at this very same campground. When they moved back up here to Wisconsin 5 years ago she was excited to get back to the campground in the summer. They put their name on the waiting list for a site along the water. In the meantime they did bring the camper up a few times to other sites & the kiddos and I came up to camp with them. The first stop was always to the ice cream shop at the campground office. (which we of course went to today... we got her cotton candy ice cream in a bowl) 2 years ago they finally got a site along the water... but by then Cathy was starting to show signs of this disease... Pick's.

Gayle bought a new used pontoon boat this summer. And he took us all out for a ride. In the past Cathy was always the one to stay 'on shore' with the camper when we went out on the lake... in fact, in all the years that I have been around I don't remember seeing her on the lake much at all. She can't swim (& had a bad memory as a child about the water) & she preferred to stay off the water. So I was surprised today when she got on the boat with us & enjoyed the ride!!! She smiled & laughed when Grandpa was letting the kids drive, especially when Mia wanted to go faster. (I was thinking back to how anxious she was being in the Colorado mountains on vacation 2 years ago... and now her fears seem to have vanished!!! This disease is so perplexing!!!!)

Barb & Pete have a campsite just a few spots down and they spent part of the afternoon visiting around the 'campfire' with us. I say 'campfire' because we didn't have a fire going. But we were all sitting around it in our lawn chairs... it was in the sun & today the weather was a bit chilly with the wind coming off the lake. It was quite funny because at some point Cathy gathered some kindling & put it in the fire ring. And then a bit later she added a few pieces of wood... and then later another. I am not 100% sure she realized the fire was not lit... I am pretty sure... but it was interesting... I am thinking that she just was being her 'old' self & taking care of us all... keeping the fire stoked.

We took her back at around 4:30... it was probably about 2 hours to much for her... she was very tired out & rubbing at her knees. Towards the end she seemed to get even more confused... it was a long day for her. As we left her at the NH she kissed my cheek & paused. At first I thought, 'what a long kiss', and then I realized she never made the 'pucker' sound. (You know when you go to give someone a kiss on the cheek & you make a smacking sound.) She just pressed her lips to my cheek and held them... almost as if she was too tired to finish or couldn't make her muscles do it. ?? I put my hands to where she had touched my cheek with her lips, closed my eyes, & thought "Oh this disease just plain sucks!!"

It was a nice day to be at the Lake with her. It won't ever be the same... but at least we were able to be with her & take her somewhere she Loves.

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