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)

Sunday, January 6, 2008

Update from Cherie & Nursing Home paperwork

I spoke with Aunt Charlene tonight on the phone. It is hard to get ahold of her. Gayle has the home phone roll directly over to his Cell phone... since so many times when Cathy was home she would answer & mix up messages, confuse telemarketers, & who knows what else happened... And Charlene's cell phone doesn't have very good reception in Wisconsin.

We talked for quite awhile, here is a quick update on how things are going: The medication change seems to be helping, she is less agitated (still a few fist shaking episodes with Gayle, but not as many) and seems to be a bit less restless. She has the munchies again & is eating lots & lots of cereal and snacks. She is sitting some in front of the TV but now watching TV episodes, no more DVD's. She will still randomly just "jump up" and go do something quickly. She does still tend to wander around looking as if she is wanting to do something or find something... but not sure what. She has been up a few nights at 1 am & a few nights at 3:30 am - Charlene is able to get her to go back to sleep. Strangely she has been sleeping on the couch a few times with her dog, Misty. Misty usually goes to bed with her at night... but hasn't been lately (poor dog, I know that she knows something is wrong), so Gayle said that Cathy has just moved out to the couch to sleep by her instead of dragging her by the collar off to bed like she did at Thanksgiving & Christmas.

Charlene & I talked about moving her to a Nursing Home. She feels that the time is getting closer also. She can see how much she has changed since her last visit in August. Her main concern is "Safety"... for Cathy, & everyone around her.

Gayle has gotten the paperwork in order for the Nursing Home & it is good for 30 days. However he did say that now that he knows what to do it should be easier to reapply if needed. Since Brad & I are still not 100% ready to move her to the home. We have had MANY talks about it. This is his main concern, "I don't want my Mom to hate me when she dies." It breaks my heart to hear him say that! I know that she knows how much he Loves her!

Brad & I would both prefer to have her closer to us in a home... here in Iowa, somewhere that we could go see her everyday. But... paperwork & $$$ puts her in Wisconsin. We know that she has friends that will visit her. Gayle is there, but with the recent anger towards him it will be hard for him to go visit her unless it improves... if it improves. It is so hard to think about her being there & us not being able to visit her. Inevitably we will be driving up ALOT once we get to that point I am sure. URGH... I have already put 12,000 miles on my Van since July!

So... we will see how things go when she comes back to us Thursday night. Take it day by day again.

I am worried about Gayle... as usual. He would hate it if he knew that. He is trying to be the strong Father figure. But I know it has been hard for him to make all of these decisions, watch her progress so quickly, feel the anger she has towards him, worry about $$$ issues, etc... I hope that he is taking care of himself & I pray that his health holds up strong through all of this! Charlene watched him with her this week, she also sees him trying to talk to her, trying to do what is best. If she only knew that he was doing the best he knows how... she would not be so upset with him.

No comments: