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, December 1, 2007

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.

No comments: