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, February 9, 2008

Grandkids first visit at the NH

The kiddos & I drove up late Friday night to spend a short weekend up here with Cathy. They have been asking alot of questions and wanted to see where Grandma lives & meet her friends. And I honestly wanted to come up and see her also. After spending so much time with her I didn't want her to feel abandoned by us. And I missed her also!

We drove through an ice storm in Minnesota... 30 mph on the Interstate & passed lots of vehicles in the ditch, one with it's wheels up in the air and police on the scene... I was thinking, this is why we don't normally travel up here in the winter!! It was a bit scary... but we made it safely.

This morning we headed up to the NH with lots of goodies for Grandma: Diet Coke from Grandpa, a bag of cherry flavored 3 musketeers, 2 tubes of lip gloss (caramel apple & latte flavors from VS... she loves them!), and an outfit she had left behind at our house. She greeted us at the door. She wasn't 'excited' but she was happy to see us all. Lots of hugs & she was happy to see the goodies. The first thing she did was take the kids to meet 'Tubby' (he was a tow truck driver in town that now lives in the NH... sad story... he was hit over the head when he was robbed at his shop! And they never caught the bad guys!!) Tubby was responsive with the kids, he even reached out towards Mia and tried to lift her up in his lap. He attempted to talk to the kids but it is hard to understand him. Cathy gave him a kiss on the cheek and we headed back to her room. Chase said, "Grandma is taking care of Tubby."

Cath was watching Everafter again & she had taken everything off the walls. She also had half of her stuff bagged up in the closet. She had gotten this singing flowerpot thing... not exactly sure who gave it to her... but she loves it. She took it out & played it for the kids... they loved it also. She was showing us her build-a-bear again and said, "Toby, on fire." and got tears in her eyes. I said, "Do you want to call Toby?" and she said, "Yes." So... we called Toby and her face lit up! It was the happiest we saw her all day!! We also called Aunt Charlene and Cathy listened to her longer than she usually listens on the phone... she was happy to hear her voice also. Brad called while we were there & she talked to him as well.

She handed me an empty tube of face make up (covergirl concealer stick - medium) that she likes to use. So the kiddos & I headed off to Wal-Mart while she went to lunch. She was fine with us leaving and quite honestly I think short visits work the best, especially when the kids are along. She seems to be more restless with them around, since they are busy & can't sit still very long... but I thought they did really well. (Our kids are used to nursing homes... we visit the NH in our hometown quite often & my parents take them as well... we have lots of family & friends living there.) Today the kids stopped a few times walking down the hall to talk to some ladies in wheelchairs. I was so proud of them both!!

We went back for another visit in the late afternoon. Barb S. was visiting again & they met us at the door. I was worried that Cathy was hoping to leave with us because she was holding her purse, notebook, & bear and pacing from her room to the main door. Barb & I looked at each other a few times... wondering... but when we decided to leave she didn't follow us. She went the other direction, towards supper.

We are planning on stopping again in the morning before we head home. -45 and blowing winds up here in Wisconsin... Brrrr (at least up here there is trees to block the wind, unlike home in Iowa!)

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Thanks also to everyone who has stopped in to visit Cathy. If you stop in ask the nurse for her sign in notebook... Jean brought in a notebook for people to sign... but Cathy keeps sneaking it out of the nurse's area & putting it in her drawer. Jean also put a sign on her door telling people to sign... but Cathy keeps sneaking the sign and putting it in her big notebook. Uffda! :)

Barb H visited this week and took her a 3 musketeers... she tried to hide it in the dresser drawer... but Cathy found it within minutes! I swear she is a bloodhound for sweets!!! :)

Jr. visited as well & Cathy served him with Coffee & a cookie!! :)

I also talked to some of the staff today and they said she has even gotten some of them coffee when she overheard them saying they would be taking a coffee break. She seems to really like the staff & enjoys helping them out.

1 comment:

Anonymous said...

I'm glad to hear that Cathy is adjusting well so far. I don't know what I would do if my mom was in this situation.