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, January 24, 2008

FRUSTRATED!

So... Brad, Cathy, & I are headed up to Wisconsin in about 15 minutes. She has an interview in the morning at the Care Center. I am a bit (more like alot) frustrated because the past 3 days I have made over 15 phone calls to 3 different Dr. offices, calls to the care center, a few faxes, & calls to family and friends. We were under the assumption that once the paperwork was recieved they would take 30 minutes to review it and then call us to let us know if she was accepted. But... they called this afternoon (after dealing with them a month & telling them it was Pick's Disease) to say they needed to interview her. They were not sure if they could handle her disease..... URGH! This would have been nice to know before we did all the paperwork & put all the Dr. offices through all the forms. (Thanks to all the nurses & Docs who helped us out! They were so nice & helpful!!)

I am afraid the interview won't go well. She knows the place & the minute we turn in the lane she will not be happy.

And... if they do accept her she can't move in tomorrow. We have to go back up next week to move her in.

So... I just needed to vent this out. I can't imagine how an 80 year old spouse deals with all of these loop holes!!!! I am having a hard enough time with it all.

1 comment:

sue said...

Brad and Beth- You can do this you are Cathy's advocate and you need to be strong for her. She needs a safe place and you can't be awake for 24 hours a day. Tell the home to do a trial bases if nothing else. Get some much needed rest and then get ready for the next step. There is always the next step to take. Each day is a new day.

Be strong and we will keep your family and Cathy in our prayers.

Bill and Sue Bishop