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)

Monday, March 3, 2008

Quick Update

Once again it has been a while since I have posted... I have been working at ISU and I am not used to a full time schedule again! :)

Brad was up in Wisconsin last Wednesday & Thursday... He spent a few hours each day with his Mom. (I will have him type a note up this week... if he is ever home long enough to do it.) He was also able to visit with the Director of Nursing and the Social Worker about her 'rough days' the past week. He was glad to get to spend some time with her & I also talked to her on the phone.

I spoke with the DON today and we discussed her recent behavior, medication, & info from her Dr. in LaCrosse. She says that Cathy is doing better... still packing her things up daily & still angry at times... but not as aggressive. (She had an incident this past week, we don't know specific details... but it sounds like she got angry with a nurse when she was trying to put her alarm bracelet back on her ankle & pushed her... the nurse was injured in the fall. (!!) When Brad was up there he found 5 pairs of fingernail clippers in her purse! We are sure that she either had them hidden from home or has found them around the home... so we are guessing that is how she got her bracelet off in the first place.) We all know that she will continue to have these good & bad days... it is just a part of this disease. What we hope for is less of the bad days, and that the staff is comfortable dealing with them when they occur. (She also spilled hot coffee on her arm & got a burn... she snuck into the room the coffee was in, the staff had been trying to prevent her from getting hurt... she is SO fast!! It is impossible to be able to watch her at all times so we are not surprised this happened.)

We continue to be SO HAPPY that Gayle is able to visit. Often he takes Misty with him as well. He did say that many times she has things packed up & her coat on... it is very hard to leave her when she is ready to go home. The other night he was able to get her to put her clothes away by telling her they might get wrinkled in the bag.
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