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 18, 2007

Annual Deer Hunting/Thanksgiving Week... Day 1

Well... Cathy was very restless today, yet VERY tired. I don't think she slept well last night. Gayle said she was up & down alot and when Brad got up at 4 a.m. she was up.

She seemed agitated all day. She got mad at Mia this morning. I had told Mia she needed to get dressed & she ran and hid in the bathroom. Cathy beat me to her & was "gripping" her shoulders and pushing her out of the bathroom repeating, "get dressed, get dressed". I ran over & Mia's eyes were huge with a look of shock on her face. I told Cathy not to handle it like that & quickly took Mia from her. Mia & I went and spent some time talking in our room... yes, she was not listening to Mommy, but I also was worried about how she was feeling after Grandma got mad. I reminded her that Grandma gets upset easier & that she needs to listen to Mommy... I tried to smooth things over & nothing else happened between them today. She kept giving us all the 'look'. Not alot of laughing today. I think she also is upset that we are in her kitchen cooking & not her. I am sure she feels like we are taking over... even though we are trying to help.

Jean came over to visit & tried to get Cathy to go to a play with her. Cathy just crossed her arms and said, "No." She wasn't going anywhere today. I think she is just a bit overwhelmed & hopefully by tomorrow she will be settled back into the routine of things again. She was happy to see Jean... I forgot to tell Jean that one of Cathy's new sayings is, "Alive, in France." I think she picked it up because Jean just visited London & France. :)

Today Cathy also went back to her old habit of burning trash. The boys used to pick on her in Iowa because she was always burning trash. Living in the country she tried to separate everything. She had a burnable trash, non-burnable, compost, plastic, & glass. The only problem with burning trash up here this week is that most of the family staying here isn't used to not throwing cans away... & she is burning non-burnable items. Tonight I wrote a note & taped it to the top of the trashcan trying to remind her of this.

She also let the dogs out alot this morning... urgh! We had to Chase them back a few times & put them in the outside kennel hoping that she would forget about them... out of site... out of mind. It helped a little. Ryan also has 2 puppies up here with him, they are so adorable, they are some of his designer pups he has for sale & he wanted to keep an eye on them... but, I keep catching Cathy in the garage refilling their water, cleaning out the kennel, & I stopped her from trying to feed them Misty's adult dog food... uffda! (once again, she is trying to help) She also kept picking up after us all day, even if we were still using something we would find it put away... the picture below is of the kids craft table this afternoon... they were playing with foam & stickers... Cathy took the white foam sheets off the stack of colored sheets & put them in with the napkins... I quess I could see the confusion, but I had to take a picture of it. (also note the bottle of Ice fingernail polish)




She couldn't figure out her DVD player in the living room today! This surprised me... she has been addicted to it for the past year or so... and she couldn't get the movies to play. She would just sit and stare at the Main menu screen while pushing random buttons.

The old Cathy shined through a few times today. Once I set cottage cheese out on the counter for supper & she immediately opened the fridge & got out an onion, chopped it up, & mixed it together. (I know that sounds gross... but it is actually really good!) She changed a few diapers, gave a few hugs to her Grandkids, picked up Ryan's baby when he was crying and brought him to Gretchen or me, helped the kids get coats & shoes on, etc.. But she was mostly tired out. Even taking a nap before noon.

When Chase got to go sit with Grandpa while he was hunting Cathy just watched. I said I needed to find him orange and she seemed confused. Ryan found him an orange coat & Gayle found him a hat. She used to be right on top of that...



Chase snuck into the bedroom tonight to say good night to her... she had gone to bed earlier at around 7:30. He said he told her, "Grandma, don't let the bedbugs bite." and she laughed. That made him feel good. He has been worried about her & I know it is on his mind. On the drive up he said, "Mom, I don't think Grandma is going to still be here by the time I turn 8." Just out of the blue... I didn't know what to say, I just listened. I am trying to be open to him so he can talk about it. We talk about Heaven & that we all hope to go their someday, but that once you go you can't come back, only Jesus can. I am open to ideas on how to talk to kids about his... I ordered a few books on Amazon to read, hoping for some helpful hints.

We missed Church today at Little Norway. The kids want to go over tomorrow so I think we will take Cathy & pick up some flowers and head over to the church before the snow comes in. It is supposed to snow 6-10 inches Thanksgiving Eve!

1 comment:

Ali Hansen said...

Hey Beth,

Ali here. My mom always explained death to me as God has a large garden up in heaven & picks just the right flowers from earth to help him tend to that garden. that is how i remembered how she told me when my grandfather passed away when i was such a young girl. It was always comforting & reassuing to hear that & that my grandfather was picked as a big strong tree to help him tend to his garden in heaven. I hope this helps a bit. Let me know if you need anything. Miss you all so much & wish we could be there for hunting & thankssgiving! Play a round of screw your neighbor for me. Take care & lots of love to everyone!
Ali, Chris & Aidan Hansen