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)

Friday, March 7, 2008

alarm bracelet

I talked to Gayle & Jean this week... Gayle said she had a few good days where she seemed more relaxed. She also cut her alarm bracelet off again.... the nurse said they were going to search her room again looking for whatever she is using to do that. (she is still sneaky!) Our guess is that she is irritated by it more than anything, it is on her ankle & she seems to be frustrated when it gets in the way of her socks. Even when it is cut off she doesn't make an effort to leave (at least that we know of...), so I wonder if we could just get her an ID necklace or wrist bracelet instead, or maybe have her wear it on her wrist? Just thinking out loud...

The kids & I were planning on going up this weekend but Chase has a fever & sore throat... urgh. We are bummed to stay home but he needs to rest & Grandma doesn't need to get sick. I missed a call from Jean this morning... she was visiting with Cathy & called from her room.

I was also looking through pictures tonight & came across this picture... I think Toby took it at Christmas. It made me smile so I thought I would share it with you! :) She loves to watch the birds, squirrels, & deer outside.


Monday, March 3, 2008

Paying the Price

Poor Chase... he had to pay the price for Mom taking care of Grandma Cathy. The principal at his elementary school called me and said he had 3 tardies over the year & needed to stay after school until 4 one day for detention! (he is in 1st grade!) She gave me the 3 dates and they were all days that he had spent the night with my parents because I was either in Minnesota or Wisconsin taking Grandma Cathy to the doctor! (My Mom isn't very good at being on time... a trait that I have unfortunately inherited)

I argued with the Principal saying I didn't want him to be in trouble & feel it was because his Grandma is sick... but she said the rules are the rules. Urgh. So, my Mom sat in detention with him. She felt SO TERRIBLE since it was her fault. They sat in the office and read books together after school. (I am not sure how the school felt about her staying) When the principal came out she even said to Chase, "This won't happen again will it." -DUH!- ARGH!!!! Hello... have some sympathy for the poor kid, his Grandmother is dying for heaven's sake!!!! Luckily Brad didn't go in to talk to her... he was pretty upset.

I am trying to see this from the school's point of view. I know that they have to follow the rules. But I wish they could have made an exception in this case.

But from Chase's point of view... he was staying late because his Grandma is sick. (Mom is gone because Grandma is sick & Grandma Joyce got him to school late becuase he was staying with her) Tough lesson for him.

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.

Note From Jean 3/3

Note From Jean -
Have gone to see Cathy everyday
since I've been back (Saturday) Today (Monday) John and I both stopped for just a minute, was she excited to see John, lots of kisses, then she looked at all that facial hair and started laughing so hard!!!! John said maybe he should shave it off!!!! After school today I asked Whitney and Taylor if they would like to see where Cathy lives, and they did, she hugged, kissed them so much, I didn't think she remembered them that well,but they were excited for Cathy to see her so happy. first time ever she acted like we shouldn't leave..we stayed a good
half hour or so..A very good day for her.. I feel so good when I see that she's happy... Hugs and kisses to all of you....Jean