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)

Thursday, October 11, 2007

Another Day

Today went fairly well... although I am afraid to say that because just when you let your guard down something happens. Cathy rode along to pick the kids up at Pre-School & at the elementary school. With a little convincing she came with us to Chase's soccer game tonight. Afterwards we stopped by Rhonda & Larry's house for a few minutes. We heard the outside door open & at first thought one of the kids went outside... but it was Cathy, she had went out and was sitting in our van. She was ready to go. (An example of how she has lost most of her social skills.) On the way home we were listening to 96.1, a christian music channel, one of my favorite songs came on... "Untitled Hymn" by Chris Rice - the chorus is "Come to Jesus"... She started singing along with the chorus each time it came on the radio.

I did call the clinic today & got some medical advice... For those of you non medical people - you may not want to read this part - She has Urinary frequency, but says she is not having any pain. (she has had this problem for a few years I think.) I didn't notice any blood or foul odor, I also checked her temperature and it was 97.7, so I am not worried about a UTI, but I will keep an eye on it. Dr. Erickson thought we should try the medication again she used this past spring to see if it would help again. Gayle had tried using it a few weeks ago with no luck, but she said to give it a little bit more time. The reason we stopped having her take it is because she was not taking her medication correctly. We were worried she would overdose or not get the full effect of the medication because she was taking them randomly, too much, not enough, or not at all. So I will supervise the medication & see how it goes. She does have a weekly pill dispenser, but she doesn't usually know what day of the week it is so it does not help.

Today she lost her patience with Mia a few times again. But Mia is 4... & Cathy raised 3 boys... the emotional "you hurt my feelings" probably didn't come up as much as it does with a girl. So I layed Mia down for a nap... which didn't go so well, but at least she & Grandma had a break from each other.

She also packed her things up & put them by the door this afternoon. She is ready to go home, but not acting upset or worried about it. Tonight she went to bed without a word about it. Her things are still in the entry. As always she gave us hugs & kisses at bedtime. (Brad did point out to her that her nightgown was backwards, although... I have to admit I have even does that once or twice)

She enjoys feeding Rudy (We are Survivor Fans), our outside dog, she visits him a few times a day. He also enjoys her company. Although I have to watch just how much she feeds him. She has always been an animal lover!

Movies today: Eragon, The Holiday

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