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)

Friday, January 25, 2008

Trial Period...

Well... Brad, Cathy, & I drove home this afternoon through a snowstorm in Minnesota after a long day! Brad drove 45 mph most of the trip & Cathy actually slept through part of it, it was a long morning for her also. (We actually passed Ryan & his family, they were heading up to Wisconsin for the weekend and we were heading home. Cathy waved across the interstate)

The minute we pulled into the lane at the Care Center she knew... she started shaking her head no & pointing to go back out. I don't exactly remember how we got her inside... but we did. Luckily when we walked in the door her friend Barb S. was in the lobby (HUGE THANK YOU TO BARB!!! She was such a support & life saver today!!) The meeting seemed to start off fairly well. Cathy brought in her notebook & was showing the social worker pictures of her family & Misty. But when she realized he was filling out paperwork about her & he started to talk about her room... things went bad quick. She showed her anger towards Gayle, shouted loudly, shook her fist, & slammed her notebook on the table and her lap. (I almost broke down crying... I am sure my shoulders visibly slumped & I let out a big sigh) We tried redirecting her & it only helped short term. Honestly, after all the emotions of the day, I don't remember exactly what happened or what was said. At 2 different times she got up and walked out of the conference room, I let Brad go get her since she listens to him so well. You could see the nervous looks in the eyes of the nurse & social worker. And the nurse started saying how they have to look out for their other residents. We tried to explain that all of her anger is towards Gayle at this point & that we feel she is safe towards others. How loving & caring she is.

Luckily Barb was there so she sat with Cathy while they gave Brad & I a tour of the building. At this point we had a chance to talk to the social worker more about the disease, the behaviors, & her. I kept asking for a chance... just a few days to try it out. He said he would call us after they discussed it. I truly thought they were going to say NO. But they called & offered us a 3 day trial... similar to respite care. So on Monday we go in for that. sigh. (I really think that the social worker opened up his heart... because the nurse seemed nervous... I am SO THANKFUL for whatever happened!)

We got back to the house & she was upset. When Gayle came home a few minutes later she was VERY angry with him... angrier than I have ever seen her. (I can only imagine how she is feeling inside right now, & can understand her anger because she cannot understand what is going on.) Brad & I both had to get in front of her and keep her away from Gayle. At one point we were all trying to explain to her that we loved her, we were only doing what we felt was the best, that she had to trust us, etc... Gayle broke down. Brad & I broke down. She just kept glaring & yelling at us. We all wanted so badly for her to understand... to understand that it is not safe for her at home anymore, that the care center is the safest place & if she shows anger she can't stay there... that if she can't stay there that things could be even worse. At the care center more family & friends can visit, her dog can visit, & we can take her out if things are going ok. But she just can't comprehend that anymore...

Brad sat down in front of her & talked to her for quite some time. He worked his magic & she settled down. Basically... he told her this, "Mom, Dr. Boeve (her Mayo Dr. that she trusts) wants you to go there, they are going to try and help us, they are going to help us fight this disease. Will you help us try?" She agreed and settled down. SHE EVEN WENT OVER & KISSED GAYLE ON THE CHEEK!! AMAZING!! (which brought us all to tears again!)

So... hopefully Monday she will still agree with this plan. Aunt Charlene is flying in from Colorado to be here. Cousin Nikki is on her way from SLC to visit this weekend. Jean is flying home from her Florida Winter for a week to help out. And I know some other friends & family will also help out as the days pass.

I am emotionally spent... I feel like all the bones are gone from my body & I could just melt to the floor. Brad just fell asleep on the couch while the kiddos are watching a movie. So... Good night everyone.

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