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)
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)
Thursday, January 29, 2009
Note from Barb S
Hi everyone, Pete and I just got home from seeing your mom. This afternoon, Jean, Diane(hospice volunteer) and I took Cathy to the dinning room to listen to a couple sing and a drummer. Cathy ate a pudding cup and a dish of yogurt. Not her usual smiles or tapping feet to the music. Then Jean and I stayed awhile and Shelly was doing Karaoke back in the unit, so we joined with your mom. I can see why she smiled then, she probably wanted to laugh at us. The 3 of us singing, but we sure had fun. Then Jean left and I and Cathy even danced to Shake-RattleNRoll. She did great! No wonder she was tired tonight. When we got there tonight she was in the T.V. room, but went back to the supper table and ate more for me, so that was good. She wanted to go to bed about 6:20 so we took another friend of ours that is up by Cathy now and we went to Pub Night. When we got back up there your mom was back in the T.V. room. The nurse said she was coughing so they told her to get up and she got out of bed and went to watch T.V. We sat with her until the coughing cleared. She was happy to see Pete and just smiled and held his hand. I'll go up a couple times tomorrow also to check on things. Love to you all! We're here for you if any of you need to talk. I know how hard it must be for you Toby being so far away. Love, Barb
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