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, August 18, 2007

Nail Polish - Ice

Nail Polish... Ice. The first time she asked me to pick "Ice" up for her at the store I was confused. At that time she was able to explain it to me. She wanted fingernail polish called Ice, she was out of it. Now, if you know Cathy, you know that she did not wear alot of fingernail polish. This all started last year. Last year she went out to Georgia to visit her sister, who was stationed in the Army there. I remember her showing me her nails before she left. She was excited about this trip, her aunt & niece were also going with her.

Since the trip she has progressed to putting the polish on in spurts. Since early summer this year it has gotten much worse. If it is a day that it is on her mind she may remove it 3-4 times a day. And then touch it up every hour or so... whenever the idea pops into her head.

After she visits I will see it around my house. A little pink nail polish on the fridge handle, on a fork she took out of the dishwasher, on the coffee table, or any random place. It does make me smile & think of her. Just look at the bottles in the picture above... see all the polish on the lids?
These were just sitting on her dresser at home.

Wednesday, August 8, 2007

Words - Part 2

Location: Wisconsin
A few nights ago we were woke up by the phone ringing. (Everyone knows that is not a good sign) Gayle & Cathy's friends newer truck was on fire in their yard! Gary was at Sturgis (for all you non-harley fans... it is the king of Harley Davidson Rally's in South Dakota) & his wife Barb was calling hysterical... obviously. Gayle & Brad headed down there quickly while Cathy & I sat up waiting to hear some news. The guys called back & said everything was ok, the fire dept. had gone & they were going to stay with Barb for a few minutes while she calmed down. I unsuccessfully tried calming Cathy down. She paced from her room, to the front porch, to sitting on the edge of the couch looking out the window... over & over again. Finally the guys returned and she headed back to bed with Gayle.

But... the next day... it was a new word. "On Fire" She was still saying "actually" but now was also adding "on fire!" Some sentences would just be, "actually, on fire." She would say this over and over again.

Late Entry: I forgot to tell my sis-in-law about this new set of words. After visiting them up in North Dakota we talked about her visit there. Tracy was concerned about where the "on fire" came from. Cathy had said it when their baby was crying and at other random times. Once she knew the story she understood. She also called me on my Birthday (which in itself was amazing, she does not call as often anymore, nor does she answer her phone) and talked to me for a short while. She ended the conversation with, "your on fire", and hung up. I knew she didn't mean that I was on fire... but it was an uncomfortable way to end the call.

Friday, August 3, 2007

Interests

In the years I have known Cathy she has been a busy bee. Never sitting still for long. Her boys could tell you all the things she Loves. Such as: gardening, taking care of her flowers, walking her dogs, hunting, anything to do with the outdoors.

When I first started dating Brad we were still in high school. His older Brother Toby had left the previous year for the Air Force & his younger brother, Ryan, was in jr. high. At the time her life seemed to revolve around Ryan's Ice Hockey schedule. They were constantly on the go from city to city. Her life was her boys.

I cannot remember a time, other than when she was watching the Green Bay Packers, that I saw her actually sitting on her couch! All of my memories from those years in Iowa involve her standing in her kitchen cooking, folding laundry, or being outdoors.

So... that is why it is so hard to see her this way. Every time we see her it is worse. She is sitting more & more. Watching more & more TV. Actually(oops, I used it again), she is watching movies. The same movies over & over. Movies like: Princess Diaries, Prince & Me 2, Secondhand Lions, Everafter, High School Musical, Never Been Kissed, etc... She fast forwards through any part of the movie that is sad or has confrontation. She can watch a movie in 20 minutes - fast forwarding over & over. It is virtually impossible to watch a movie with her.

Our daughter sings the words to every High School Musical song. Our son, who is usually very patient, is finally saying, "Grandma, can't we just watch cartoons?" or "Grandma, I don't want to watch that again!" She will just laugh & sometimes change the movie, sometimes not.

Earlier this year I tried getting her interested in reading again. She actually (there it is again!) used to write stories. One year for Christmas I gave her a personalized pen & notebook. Reading went well at first. She read Harry Potter books, Romance Novels, & even began driving into town to the Library. In fact, on one visit the kids and I went with her. The ladies at the desk knew her very well.

But then, sometime this summer, I noticed she had stopped. The few times I saw her with a book she was reading the same page... over & over again. She would pick it up, open it, mumble some words out loud, put her bookmark in, & set the book down. Repeating this throughout the day, not getting anywhere with the book & soon returning to her attention to a movie. I wonder if she can read? I wonder if she can understand or process anymore? I tried to ask her if she was having a hard time reading. But those questions went unanswered with only blank stares & nods of her head.

Thursday, August 2, 2007

Leaving Work

How are we going to care for Cathy now that she needs supervision? Now that she is afraid to be alone? Cathy grew up in the country, raised her boys while Gayle was out of town alot, & spent many many nights alone after the boys grew up & Gayle was out of town for work. But now all of the sudden she is afraid to be alone. She has mentioned Bears being outside, she thought she saw a man breaking into her van one night, & she says she doesn't like being alone at night anymore.

After many discussions with family... lots of ideas bounced around... Ryan & Gretchen moving up, Aunt Nina moving in to help, assisted living, nursing homes, etc... Brad & I offered for me to take leave from work to help out. Cathy seems comfortable when she is at our house, she does not get restless here. Probably because she lived next door to us here for a few years & since they moved back to Wisconsin they visit & we have family gatherings here.

So in early August I decided to help as much as I can. I talked with our Nursing Director at work & checked into FMLA. Since Cathy is my Mother-In-Law and not my Mom I do not qualify for FMLA. But I can switch my working status to prn (as needed), I will lose my benefits: retirement, health care, vacation etc.. But I will have a job to come back to someday, hopefully. Cathy is going to move in with us the end of September sometime. We are still working out all the details.

The biggest issue is how do we tell her. I have mentioned it to her over the summer. When it seemed she was having a good day I would ask. "Cathy, if someday you need help & someone to take care of you, where would you want to be?" Her answer was always the same, "#9, I am going to get the shot #9." This is a shot that was discussed earlier that "may" be able to help, but at this point it is not available. So I would say, "Cath, until #9 is available, what would you like to do?" She would say that she would like to visit us so she isn't alone at home or maybe Ryan could move to Wisconsin. Sometimes she would mention having Toby move to Wisconsin when he retires from the Air Force. I left it at that. I don't really feel like it is my place to tell her. I am helping take care of her, but she is still Brad's Mom. I will leave that up to Gayle & the boys.

I really think it is best to not upset her, since she is comfortable "visiting" us I just plan on still calling it that. A long visit. I am afraid that if we tell her she is staying it will upset her. She will miss her home. So for now we will try to make her comfortable in our home, get a room ready for her here, & see how it goes. The kids & I can visit Wisconsin on weekends. (around Chase's school schedule) We also will spend Thanksgiving week up there & maybe Christmas. I know that Gayle has discussed taking her home a few times. We will see how it all plays out. Prayer... lots of Prayer!