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)

Wednesday, February 27, 2008

Note from Rhonda

Our weekend visit over February 22-24 went very well with Cathy. We went directly to the care center to see Cathy. When we arrived I knocked on her door and she was very angry at someone and she slammed the bathroom door into the other door. My heart sunk and I didn’t know what I was going to do. I was looking so forward to seeing her for the weekend. But as soon as I opened the door and said “Hey Cathy, it’s me” I got a big smile and a hug and kiss. The rest of the weekend went very well. Full of hugs, kisses, and lots of bear pushing and saying “Luv you mom” and then I would have to say “that’s Toby.” Toby, what a hit that bear is. She is so proud of it and he makes her smile.

Saturday I have to admit I made a nuisance of myself. I will admit it, I visited her four times that day. But every time I went she was so happy full of big smiles and hugs. She brought me her book to sign each time and then we would take it back. We would walk and to look at the fish and then back to watch the movie “Ever After.” I hate that movie! On one occasion we put our canceller on our eyebrows and then got our lip gloss out of our purse and put that on our eyebrows. What a fashion statement! But we were smiling. Oh by the way we have either Gayle or Brad’s deodorant still in our purse. At least if we are traveling we won’t forget it. On occasion we have planned a weekend up to BLK River and Larry has forgotten his. So it is a good idea to carry it in your purse.

Sunday’s visit she showed me 2 spots on her door that the wood grain looked like a person’s face. 2 eyes, a nose, mouth, and ears. Amazing that she picked them out. Her speech has really gone down hill since I last saw her in Iowa just before she went to the Nursing home. But I did get nods of yes and no from her. There were times that I was sitting there thinking why is she here, that we could be home watching movies, drinking coffee, and snacking. I do know in my heart that this is much better for her, but she was having such a good weekend. I told her that I had to go home and back to work but I would be up to see her again very soon.

1 comment:

Anonymous said...

To everyone-- isn't it wonderful to have a good visit a hug a kiss anything memorable from Cathy. Enjoy all the good times and let go of the bad times or try to find some humor in it if you can.
Loving thoughts,
The Bishop's