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)

Tuesday, January 29, 2008

Moving Day & Day 2

Last night I was exhausted & didn't update the blog... Thanks to everyone for the calls & well wishes yesterday & today!

MOVING DAY ~

Cathy, Brad, & I loaded the car up yesterday and headed up to Wisconsin. We soon realized the reason that she was so willing to go with us was that she thought we were going to Rochester to see her Mayo Doctor. She kept saying "63", the road you turn onto off of I-90, and "Dr. Boeve"... Brad & I just looked at each other thinking, "this is going to be a fun day!" Just as we passed the off ramp for 63 and she gave me a confused & angry look our van died... ??? our 6 month old van died for the first time just a few feet from missing the exit Cathy wanted us to take - what are the chances of that happening??!! I coasted to the side of the Interstate & Brad took the wheel, the van restarted & off we went. She seemed to have forgotten about it... UNTIL....

We switched driver's at the gas station in town, I didn't want her mad at Brad for pulling into the nursing home, I would rather have her mad at me. The minute I started to turn in she knew exactly where we were going. She was angry, yelling, "Actually, On Fire!", & pointing to turn around. Luckily Aunt Charlene was here from Colorado and had picked up McDonalds, she was waiting in the main lobby for us. We pulled up & Cathy was upset... but then confused seeing Charlene standing at the main door. I truly think the only way we got her out of the van was because Charlene was there! Cathy was angry & confused, she looked from me to Brad to Charlene. Then she started walking towards Charlene & she got her inside by telling her we were going to eat McDonalds there... she just followed her in... with a confused look on her face. The social worker met us in the lobby & took us down 3 halls (a bit of a maze... but that will make it harder for Cathy to sneak out) to the special care unit. She lead us to her room (freshly painted & very nice... Thanks to the staff that came in & did that on Saturday!!!) and.... then it began.

Cathy was upset, I don't blame her, I would have been confused & extremely upset if it was me. Moving into the nursing home you have known since you were a child... yet knowing you are only 53... her biggest fear! With this awful disease she knows just enough still to understand what is going on... but not enough to reason with her. The staff was prepared for us... it seemed that they had someone there representing every department. While Cathy yelled, slammed her picture book down, punched her picture book, paced around, elbowed Brad trying to get out of the room, gave us dirty looks, yelled some more, whacked me on the head with her name bracelet, etc... the staff remained calm (THEY WERE AMAZING!). They filled out some admit forms, her dislikes & likes for activities and meals, meds, etc... They brought in a hamper of laundry for her to fold, I honestly didn't think she would, in fact I pictured her tossing it on the floor in anger... but... she started folding! It was the perfect thing for her, she folded fast & slammed things down hard once they were folded, it distracted her and kept her busy so we could talk. Her friend Barb S. came and after that everything just became a blur to me... I don't honestly remember what happened next. At some point the social worker recommended we leave and wait in the lobby, giving her a chance to settle down & see how she would adjust. This was the HARDEST part of the whole day. Watching Brad sneak out of his Mom's room without saying Good Bye and without being able to give her a hug. HEART WRENCHING! He made it out with Barb, then me, then Charlene... & then we waited.

I could tell the staff was nervous, I honestly don't blame them... they don't know her yet & they don't know how kind she truly is. They don't know that she wouldn't hurt a flea on purpose. All they saw was an angry person being very aggressive. Luckily we know a few people who work there. Shelly (John's wife) works there & just seeing her smile helped so much!!! Having Barb there was also a big comfort!

So we waited... they came down a few times & told us she was beginning to settle down. They let her out of her room & she circled the main area and walked towards the only door out... the nurse blocked it and said no... & she didn't fight her, she kept walking. (PHEW!) After a while we finally felt comfortable enough to come home.

I called at around 8 last night to see how she was doing... the nurse said she came out and ate supper with the other residents & then headed back to her room. She was just doing her own thing in her room, most likely opening & closing the curtain, rearranging things on the table, any little thing to keep her busy. They brought her a snack & she seemed to be settling in.

Last night was the most miserable, heart wrenching, painful night of my life up to this point. Emotions were running high. Watching Brad was the hardest part of all. He felt so alone. Having your Mom look at you & feel as if you were letting her down... I can't imagine that pain. He wanted his brothers with him. Toby was there for support by phone when we got home... I can only imagine how hard it was on him also... being so far away & not able to come home to help.

Having Aunt Charlene here was like having an Angel here with us. We couldn't have gotten through it without her. We would have, but it would have been even harder. She flies home tomorrow morning & we cannot express our Gratitude to her in words. Only say "THANK YOU from the bottom of our hearts!!"

Gayle couldn't be there either... Cathy is still SO ANGRY with him. We don't know exactly why & she hasn't ever been able to explain it to us. (Her anger with him started after she lost her communication skills.) We couldn't risk him angering her more. And staying away yesterday & in the future is going to be hard for him also. Hopefully at some point her anger will dissipate & he will be able to visit. Time will tell.

A HUGE THANKS to my parents. Our kiddos are staying with them this week. They are feeding our dog, running errands for us, & caring for the kids. Just knowing they are supporting takes a huge load off our shoulders so we can focus on Cathy. Also Thanks to Angie for watching Chase tonight for Scouts. Thanks to Lynn for caring for the kiddos & picking Mia up from Pre School. And Thanks to Barb H. for bringing us supper last night, it was so nice to not have to worry about it!

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DAY 2 ~

We made it through the night with no calls from the nursing home. (PHEW!) I called in after breakfast time and they said she was doing "WELL!" It was like night & day!!!! She was PLEASANT & SMILING!! We had told them how much she loved her morning coffee so they brewed her a pot & she had coffee, ate breakfast with them, did an activity (made a necklace!), and was adjusting well. HALLELUJAH! We were finally able to relax a bit... yet still too nervous to relax too much... but HOPEFUL that things would continue to improve.

At around 1 they called & said we could come and visit. (Originally we had discussed with them not visiting, hoping that would help her adjust. It was SO HARD to not go see her, yet we knew that it was for the best.) She had been starting to get anxious & restless... UH OH... and Gabe, one of the social workers, asked her if she wanted to see her son & she had said Yes. So we excitedly, nervously, & hopefully went in for a visit. Gayle had bought her a new TV yesterday so we took that in along with a bunch of her favorite DVD's, so more clothes, her robe, Diet Coke, 3 musketeers, her favorite gum, etc... Brad headed down first while I waited to give them her clothes for labeling. He said when she saw him coming through the double doors she bolted out & headed straight towards him... setting off the alarm. She was so excited to see him & the new TV! Once I got down to her room she was so HAPPY! She was in her nightgown (not dressed but comfortable) and showing off her new TV.

It was almost like she had forgotten about yesterday & she had been there for days. She kept pointing at her arm & saying "Shot" and smiling. I realized that she had gotten her TB test & she had thought it was the shot she had been hoping for from Dr. Boeve, the #9 shot she had talked about for the past year. The shot that she thought was going to make her better. I acted excited for her & explained it to Brad. We went with it. She was happy. (it is hard knowing that's not what she really got, but just knowing it gives her hope... it is worth it)

Brad & I stayed about 3 hours. We were still on guard and waiting for her to get upset. But she never did. The look in her eyes was relaxed & happy. She was giving us kisses and hugs. I sat next to her on the bed and she would lean over and laugh & kiss my cheek. She patted my knee. She gave Brad hugs & kissed his cheek. It just wiped the stress right out of him. He was smiling again. Cathy said Chase a few times & I told her I would bring the kids up in a week or so. I told her they were in school and she just smiled & shook her head yes.

Her friend Barb S. stopped in again. And we took that opportunity to leave. We gave her hugs & said see you tomorrow. And she was okay with us leaving!! Wow, what a difference. Being able to hug her good bye was so wonderful. We would like to take Misty in for a visit. And I am hoping the other residents will like seeing her dog also.

Here are a few pictures I took on my cell phone today... One of her smiling & one of her bed with her Build-A-Bear in it.





I am hoping tomorrow will go as well as today. If it does I will actually be able to go home & feel safe about leaving her here. Finally be able to take a deep breath. And Brad will be able to head back to work without the weight of guilt as heavy on his shoulders. Knowing his Mom is doing ok & in a safe place.

1 comment:

Anonymous said...

beth and brad,
I am very proud of you for making such a hard decision.
May God Bless you today.
Hugs from Cedar Falls,
Alicia