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, March 20, 2008

Weekend Visit

Last weekend (14th-17th) our family went up North to visit Grandma... over the river & through the woods to the nursing home we go... (just doesn't have as good of a ring to it does it?)

The kids were so excited to see Grandma & Grandpa! We arrived late Friday night (past Grandma's bedtime) so we just went straight to Grandpa's house. Saturday morning Brad, Mia, & I went to visit Grandma while Chase spent the day with Grandpa. Jean was helping Cathy with a puzzle when we arrived. She was happy to see us & gave us hugs... but Saturday was probably the hardest visit as of yet for us. She was much more distant & her speech was quiet & mumbled, even more than the last visit. I did call Aunt Charlene & let Cathy talk (listen) to her... Cathy mumbled a few things & then just listened for a short bit before passing the phone back to me. I could tell she was happy to talk to Aunt Charlene but she just cannot express it as well now. Once again she had her things packed up & Brad just started hanging them back up for her. (she didn't seem to get upset with him) We left when it was time for lunch. While we were there we ran into Shelly & visited with her also. (It is nice to know that someone we know is close to Cathy most days. Shelly always has a smile on her face & helps boost us with her positive comments!) We did find out that Cathy has been plugging the toilet with TP... she just stuffs it full... not when going to the bathroom, just randomly.?? Brad also took her a Calendar with photos of Labs on it. I wrote in Birthdays & Anniversaries for her... she tried to help me but had the wrong dates for some of them.



Chase & Grandpa went that afternoon and took Misty (dog) along. Chase was happy to see her but got nervous when she choked on her candy bar. He talked about it on & off all week. (We have gotten into the habit of always taking her a diet coke & a 3 musketeers, sometimes red licorice or gum also. But she shoves it right in her mouth... so we have buy smaller ones now)

Later that evening Chase said to me, "Mom, my throat hurts." UH OH We had just gotten the kids over a case of the Flu & thought we were recovering! I checked his temp & it was 101.8. All I could think was... "Oh no! He just went to visit Grandma sick!" So I called the local nurse line & they told me they have an urgent clinic 10-6 on the weekends. So Sunday morning I took the kids to the Urgent Clinic & Chase tested positive for Strep Throat. Mia also was not feeling well that morning so the Doc gave us meds for both of them. They were both VERY disappointed because they wouldn't be able to go see Grandma that day.

I went after lunch & spent a few hours with Cathy. When I got there she was walking out of the nurses area with a diet coke. She laughed & said, "Beth... on fire!" I got a big hug & we went to her room to watch "The Little Mermaid" again. (I had taken the little mermaid in when we moved her in thinking the Grandkids could watch it when visiting... but it seems to be one of her favorites too) Her things were once again laying on her bed packed up & ready to go somewhere. I just let them be. I had brought her an Easter card & basket from the kids. She put on a pair of bunny ears they had given her & laughed. For the next hour we just sat & watched a movie. Every once in a while she would look over at me & smile, walk to the door & look out, or reorganize her things on the bed. A few times she would change the movie & one time she kept trying to take a DVD out & there wasn't one in... it took a few minutes to get her straight with that. But the visit seemed to go well. It is SO MUCH easier to visit with her one on one! I think any more than one person & she seems to have a harder time. Just as I was getting ready to go she unplugged the TV & wrapped the cord around it. I said, "Cathy, Brad is bringing you Pizza tonight, you will want the TV to watch with him." And she plugged it back in. We also called Rhonda quick so she could say Hello. I mostly sat and talked to her, telling her things & asking her yes and no questions. Most of the time her answers were relevent... it is just hard to know how much she comprehends.



That evening Brad took her up Pizza Hut pizza. (and replenished her diet coke supply) His visit went fairly well but as soon as they were done eating she turned her bed down & kept handing him his coat. I think he was disappointed. He really wanted to spend some time with her & she was ready for him to go.

Ryan was up to the house a few times while we were there & the kids were excited to see him again. They kept asking for Cousin Laney! They love to play with her. But Laney was sick & by Saturday night so were they.

So... It was good to see Cathy, but hard yet again to see her declining so quickly. I sat there thinking, she is still full of energy & seems so bored & restless. She doesn't seem to want to get involved with all the group activites. When I was there Sunday a group of singers came & she would walk out & take a peek at them, smile, & come back in the room. I went out once thinking she would stay with me & watch them, but she headed back to her room. (Note to all groups who sing at nursing homes: don't sing sad songs!! They were singing a song that the chorus went like this, "you left me alone, alone, alone. You said you wouldn't leave me." What were they thinking??? I am Thankful that people are willing to come in & entertain but they chose the wrong song for a group of people who feel left alone!!!!)

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