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, December 6, 2007

Medical Issues

Once Again... it has been an interesting few days. Yesterday Cathy came to me stating, "pregnant" and tapping on her stomach. I am sure the look on my face said it all... Pregnant? I quickly reassured her that she was not pregnant... & I tried to guess what she meant by that. I asked her all sorts of questions & only got yes and no answers. She smiled and went on with the rest of the day. And I felt helpless because I couldn't figure it out. At around 4:45 she finally showed me what she meant... I guess I should be thankful that she is comfortable coming to me. And I am also glad that I am a nurse & I am comfortable dealing with medical issues. Needless to say... for Cathy's privacy, I won't go into details. But I quickly called the clinic. I was given some helpful advice & was able to help Cathy for the short term... mainly I was able to prevent a trip to the E.R. (I can only imagine what that would have been like... I hope I don't have to know anytime soon) This also explains alot of her behavior over the past few months...

Today I took Cathy back into the clinic here in town... we got the OK for a referral & now we are waiting... This is where things get FRUSTRATING! The specialist's office called & said they couldn't get us in for 5 weeks... 5 WEEKS!!! Do they understand what it will be like taking care of her with this issue for that long... how hard it is going to be for her??? I am a nurse at a clinic, so I understand how difficult scheduling can be... but on the patient side now I am frustrated... this seems to me like something that can't wait... mostly because of her Pick's & the confusion it is causing... & how she cannot take care of things like a healthy adult could. So... I called the clinic up in LaCrosse and they can get us in Monday... MONDAY! ????? But... now I have to decide if I really want to travel 5 hours to take her back & forth to the Dr. for this issue... how will it effect the kids & our family since I don't know exactly what the plan of care is going to be yet. I put another call in to our local clinic... just to double check & see if they feel I should try and get her seen earlier. Maybe I am making a mountain out of a molehill.?? We will see tomorrow. I feel like we have spent most of this week at our clinic.... between this issue, Cathy's Physical, & strep throat. I am so Thankful to them all, they are always so helpful! But I am sure they are getting tired of seeing my number show up on their phones...

This afternoon I took Cathy to the Mall to get a new pair of shoes. On the way in she pointed at a sweatshirt with cardinals on it. And on the way out she walked into the store & pointed at it again. So... I bought it for her. She wore it tonight & it already has coffee stains and oreo cookie crumbles on it... We drove around alot today. Picked up Mia & friends from Pre-School, came home for lunch, back to town for the Dr. appointment, and then around town for an hour waiting for the kids to get out of school... they got out an hour early today due to a snowstorm. (Cathy really enjoys dropping off & picking up all the kids.) Randomly she would wave at people in their cars/trucks... sometimes we knew them, but usually not. She even waved at the lady working in the paper store at the mall... the lady waved & smiled... but you could see the look on her face, "do I know them??"

Most of today she seemed relaxed and surprisingly she is handling the medical issue very well. She trusts the people at our clinic here in town & that helps so much. The only time today she got angry was when she thought she saw Gayle's truck drive by. It was a truck similar to his with the Railroad sign on it... but it wasn't him. She instantly started the finger pointing & angry words again. It took Brad talking to her & about an hour to calm her down again.

When we were at the Pharmacy today she picked up some Christmas cards... so I bought them for her. (She cannot make change... I don't think she has been able to since the end of Spring. She also is unable to write checks anymore.) Gayle & I already talked about using Sendoutcards to send their Christmas card this year... we did that last night. But I thought, it wouldn't hurt to let her send some more out. When we got home she wrote the first one out to her sister Nina. Then she got out my Rolodex and looked up Nina's address. She pulled out a card for my cousin Joe who has an LA address... She wrote his address on Nina's card... as far as I know Nina has never lived in California & she currently lives in Georgia. Brad was watching her do this & I think it even shocked him that such a simple task was too hard for her. She just wasn't able to make the connections.

On a good note... the Trazodone seems to be helping her sleep. I don't hear her getting up all night long again, a few times, but not every 5 minutes like before.

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