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)

Saturday, December 22, 2007

It's Snowing


It looks as if there is a soft blanket of snow on the ground outside... it is Beautiful. The snow is falling straight down... quietly... peacefully. I now understand what Brad is always talking about. A Wisconsin Christmas. If we were in Iowa right now... the snow would be blowing & cold. It somehow feels different up here. Maybe it is just the magic of the season.

We made it up here late last night, Ryan & family made it up this afternoon, and Toby & family got here just a few hours ago. So... here we are... all together for Christmas. The Christmas tree is the only light in the house right now, other than the glow of the computer screen. Besides candle light service at church, having the glow of the Christmas tree is one of my favorite memories of Christmas. I can hear kids footsteps upstairs (that should be in bed), I just let the dogs out to play in the snow, & the fireplace is crackling.

Cathy went to bed before Toby got here... so I am sure she will be up bright & early in the morning. This morning she was up at 4 am when Brad got up to check his status on the railroad boards, Brad stayed up with her while she attempted again to make Bacon for him. He has noticed just in the week since he saw her at our house that her speech is changing. It is harder for her everyday.

I want to say a BIG THANK YOU to Barb & Barb for staying with Cathy on Thursday & Friday. It was a much needed break for our family (especially when getting ready for the Holidays!) & it was so helpful to Gayle. Tonight Barb & Gary came up for supper and she said things went well on Thursday. I haven't talked to Barb (& Pete) about how things went on Friday, but Gayle said she felt things went ok. Jean & John stopped by again this afternoon for a quick visit.

Getting back to the interesting things... I will start with the Worst. Gayle's Birthday was yesterday... I called him yesterday to wish him a Happy Birthday & he told me I would never believe what Cathy had done. Let me start this by telling everyone how big of animal Lovers Cathy & Gayle are! They are the type of people that treat their animals like their children. The last 2 dogs they lost (Misty & Tiffany) and our yellow lab that Cathy took care of the last few months of his life (Bud) were all cremated. They had them in the house, high up on a shelf, deciding what would be the best thing to do with them. Well... Cathy, unlike her self completely, dumped them! Yes, I said dumped them! Gayle tried to ask her where & all she could do was point and say, "on fire." He was devastated... the only worse thing I can think of her doing is burning the house down... and on his Birthday! Urgh... We all know that Cathy would NEVER have done this in the past, that is what makes it SO HARD to deal with. Gayle just threw his hands up in the air... he is spent.

Today Brad & I noticed some "black dirt" along the stones in front of the house. I didn't think anything of it, because Iowa has black dirt everywhere. But, Brad looked closely & said, "I think this is it!" In Wisconsin the dirt is more like sand/clay. And it was on top of the layer of snow. Phew.... It may not be exactly where they wanted them... but at least they were not put in the trash, flushed down the toilet, or burned in the burn barrel... up until last night we had no idea. Gayle & Brad are so relieved to know that they are still close to home. (I know all you animal lovers out there can appreciate this)

She is still so restless all day. She is constantly taking things out of cupboards & moving things around. I don't like saying I miss the movie days... but it was much easier to keep an eye on her when she was in one place.

Gayle is meeting with someone from the care center up here in January. He is also working with a Lawyer/Accountant about finances. After the incident with the dogs... it was almost like his last straw... he just doesn't know how much longer he can be alone with her. I still feel like we are doing ok at home and we would like to help for as long as we can. (We just need to continue to keep a close eye on our kiddos & their relationship with Cathy) We just don't know what 2008 holds in store for us... but no one does. We can only hope for the best & take it one day at a time. Enjoying the little things.

A few more Mayo highlights:
While we were in Rochester we got Cathy's hair cut & highlighted (the Beautician was AMAZING with her, patient, & understanding. She said they are used to getting patients from Mayo clinic), we also went out to eat a few times. On Tuesday night we went to Macaroni Grill. We ordered a house bottle of wine to share... & Cathy kept filling her glass up... after 4 glasses we had to hide the bottle from her, she would just laugh & try to sneak it back. Jean tried to trick her by pouring water in her glass, she just poured it into her water glass, there was no fooling her! It is not like Cathy to drink that much... but I think I would in the current situation too. (However, it is not a good idea with her medication) I also had to cut up Cathy's meat for her, she started choking on it (because she had 5 pieces in her mouth at once & she doesn't chew like she should). I think I am going to have to get a cookbook for softer foods... I read about one on the FTD support group site I think, this is now on my to do list.




Staying at a hotel with her was interesting also. We should have taken bells to hang on the door like I do at home. Jean & I were across the hall from her and she was knocking on our door, she had slipped out of her room & was coming over to see us. Luckily Jean heard her. She wanted my keys... so she could pack the vehicles up. Uffda. Just like home but in an unfamiliar surrounding.

So... I/We are looking forward to the next few days together as a family! Merry Christmas to you all! Wishing you many Happy Memories this year also!

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