Later Stages

Did You Miss It? - A Son's View On Frontotemporal Dementia

October 16, 2017

My brother wrote a post on Facebook about our journey with Frontotemporal Dementia. I wanted to make sure you all saw his post, too. I'm posting it here to keep record of it. Thank you, Jon, for writing this! Please like our Facebook page to see all of our posts. Thank you to everyone who is following our story. Our goal is to raise awareness about Frontotemporal Dementia and because you are reading this right now.... you are helping us in our goal to raise awareness about FTD! 

I never imagined being on the journey that we have been on with my mom over the years. She was diagnosed with Frontotemporal Dementia or FTD coming up on 4 years in November. We have learned a lot. This is different than the more common type of dementia that we all know as Alzheimer's. I'll never forget the doctor telling us kids there at his office with our mom at age 56 that this disease in his opinion is much more difficult to care for. He mentioned that her brain had shrunk to the size of an 80 year olds.

My wonderful sister Natalie and her husband Paul are amazing people. I can't thank them enough for what they do to care for our mother. They have put together a facebook page and blog to share and hopefully help anyone else out that comes across this disease. We have attended a support groups and with our own experiences we have learned a lot.

Here is a video showing some of the degeneration that she is going through as she didn't know how to sign her name. She was also confused at the date and didn't know her social security number for the first time. We have gone through some difficult times watching her mind literally fade away. We make the best attempt to be positive and enjoy every minute we can with her. We love it most when we can just laugh with her.

Written By Jon (Cindy's Son)

Holiday Fun

Halloween Door Decoration Contest

October 09, 2017

My mom is ready for Halloween to come! Her room is all decked out in Halloween decorations. My mom has her window and 3 doors decorated for Halloween.

We thought it would be fun to have a Halloween Door Decoration Contest and have you help us decide which door is everyone's favorite!

Please help us! Which door do you like the best?  :)

Door #1

Door #2

Door # 3

I like them all, but I would choose door #1. It fits well because, my mom doesn't like random people, going into her room. This is a decoration that she would probably like to have up all year long.

As you can see, these decorations brought a smile to my mom's face. She was excited when we said we will have a contest to see which door has the best decoration on it.

We will let you know which door is the winner! Thank you for helping us entertain my mom this October!

Let the contest begin! :)

We hope you have a spooky and scary Halloween!

P.S. These decorations on the doors were found at Walmart for $only 1.00 each!

Later Stages

Wearing Clothes Improperly with Dementia - Wearing A Shirt, For Pants

October 05, 2017

Our saying has been . . . .

"You Never Know What My Mom Is Going To Say or Do Next".

This same saying applied to her last night. This saying is so very true with dementia. Nothing can prepare you for the next surprises, because they are simply surprises.

I wasn't going to go visit my mom last night. I thought that she was set up good for the day already, so I didn't need to visit her. I kept contemplating about it, and I finally felt as if I needed to go check on my mom. I needed to check that she had clean clothes. Paul was driving me over to go check on my mom. As we were driving there, my mom texted me her usual text, that she was going to sleep. I texted my mom back that we were headed to go see her. 

We arrived at the assisted living place. As we walked inside to see my mom, she was waiting on the couch, by the front door. I started walking to her and she had the biggest smile. I looked down and immediately noticed that she was wearing a shirt for her pants, instead of pants.

We thought maybe she didn't have clean pants, so that's why she was wearing a shirt. We walked her to her room to help her get some pants on. I have to give credit to my mom. She was pretty clever on how she put the shirt on. She put her body through the top part of the shirt. She then tied the arms of the shirt around her. She was wearing it, and it looked like she was wearing a skirt. 

My mom, did indeed, have clean pants. Her clothes had been washed, but they were folded up, and put into the hamper, by the assisted living place. My mom is use to looking in her dresser for her pants. Of course, with dementia, I can see why my mom wouldn't think to look in a hamper for her clean clothes, because in her mind, that is where dirty clothes are suppose to go.

I took my mom into the bathroom and helped her put on some clean pants.

I have seen others post, about their loved ones with dementia, wearing their clothes improperly. I knew this could happen. I'm surprised that we have now reached the stage of wearing clothes improperly. This is the first time this has happened with my mom.

Nothing can prepare me for what my mom is going to say or do next. No matter what, I am always surprised and wondering what is going to happen next.

Later Stages

FTD & Forgetting Birthdays For Good

October 02, 2017

It was my birthday this weekend.

My mom never missed a birthday. She loved it when it was my birthday. She would always write a birthday card to me every year. It wasn't just an ordinary birthday card. It was a card where she wrote her appreciation and told me how much she cared & loved me. She always wanted to spend every birthday with me or she just wanted to see me for my birthday. My mom would hand deliver the cards to me.

The last 3 years, our birthday routine has changed. The first year my mom forgot that it was my birthday, it was sad, but I was okay. This reminded me that my mom was getting further into her disease.

This year my mom didn't call me or tell me happy birthday through a text, again. I was okay with it, because I have started to get use to that. I realize that she is just unable to do that anymore.

This year Paul wanted to surprise me, and he did. He had my mom write on cards to give me for my birthday. It did surprise me and I was not expecting anything from my mom. Paul said he was trying to help my mom write on the cards. He said my mom wrote on the cards while wearing a smile on her face and had fun doing it. He noticed what she was writing and how she was writing it, and Paul said it caused him to tear up.

Here are the cards that she wrote on. 

This just shows that, even trying to help her write, is hard now. Paul handed me the cards to open. I had tears in my eyes when I saw the card said "daughter" on the front. I opened the cards and I wasn't surprised, I guess, because I know her disease is getting worse. My mom wrote stuff that didn't make sense and on the one card she wrote it to "Mom". I won't lie, probably deep down inside, it does make me real sad. 

I promise you this isn't a sob post. I just want to share this with you so you can see the progress of the disease and see what happens with memory and birthdays. I want to spread awareness to FTD and show everyone, that I can, what happens when you have Frontotemporal Dementia.

Birthdays slowly fade away when you have dementia. That is the hard truth.

I am so thankful that my mom wrote me so many cards throughout many previous years. I don't doubt her love for me and I know, if she could, she would be telling me , "happy birthday".

To check out birthday cards that my mom wrote me prior to her FTD diagnosis, visit this link below. There is definitely a big difference.


It's Okay To Not Be A Superhero Every Day

September 25, 2017

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I'm sure you have had the same moments where you read something and you think to yourself, "yes, that is so true or so me". I had one of those moments today, where I read a tweet on Twitter and I could relate to it so much. It was such a great tweet that I thought, "I need to share this to help someone else out".

This not only pertains to caregivers, but to everyone. It seems like we are always busy trying to be superheroes, but sometimes it's OKAY to not to be a superhero for a day or two or three or more.

I was so busy trying to be a superhero everyday for years. When I had my stroke last year, it was a wake up call. I had no choice, but to take off my cape, and basically retire it. 

AND I have to keep reminding myself.....  THAT IS OKAY!

If you have any of the signs of stress below, please slow yourself down. Find someone to help you. Tell someone that you need help. If you see someone struggling, offer them help. Sometimes it's hard to ask for help, especially if the person is already drowning in stress. Your health is to important, not to slow yourself down.  You are invaluable! We all are invaluable! Always remember that!

REMEMBER . . . . 

It's Okay To Not Be A Superhero Every Day!

In reality, we are only human, anyways.  :)

You can find our journey on Twitter, too.  - @monkeyami

FTD Signs

The Garbage Can Obsession / Repetitive Phase

September 18, 2017

I have heard stories from different people about their loved ones with Frontotemporal Dementia who have some kind of an obsession or repetitive behavior. Something they do over and over again, even if the behavior does not make any sense. I have, also, experienced first hand watching my mom have her own repetitive behaviors and obsessions.

Below are the definitions for obsession and repetitive. I would classify my mom's behavior that I am going to tell you about as an obsession and repetitive.

Obsession Definition -

- the state of being obsessed with someone or something.

- an idea or thought that continually preoccupies or intrudes on a person's mind.

Repetitive Definition -

- containing or characterized by repetition, especially when unnecessary or tiresome.

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My mom had a BIG garbage can obsession. This phase in her life seemed to last for a few years. This is probably one of the biggest obsessions she had every week.

My mom's routine was like this:

1. Every garbage day she would wake up and make sure to take the garbage cans out to the road. If any of her neighbors put out their garbage cans the night before garbage day, she could not understand why anyone would do this.

2. As soon as the garbage man picked up the garbage, my mom would make sure that she brought in the garbage can right away. If people didn't take their garbage cans in right away, she thought they were crazy and she couldn't understand why people didn't take their garbage cans in right away, like she would do.

3. My mom started washing her garbage can out with her hose and water. She thought the garbage can smelled really bad and she thought washing it with water would help. She would take her garbage can onto the grass and use the hose to rinse out her garbage can, every time she brought in her garbage can. My mom added in this stage of the garbage can phase a few years after her original garbage can obsession started.

4. There were times that my mom would leave messages on the garbage can for the garbage man. The messages didn't make much sense, but my mom would feel good about her messages. My mom would write on a paper towel with a black marker and tape the paper towel to the garbage can. Below is one of the messages she left for the garbage man. My mom thought the garbage can was so full that the garbage man needed to dump the garbage can 3 different times to get all of her garbage out of her garbage can.

5. If my mom was out and about with me, my mom would want me to take her to her home, just so she could put her garbage can away.

6. My mom would laugh at the garbage cans that would fall over whether it was from the garbage man after he dumped the garbage can or the wind. There was a time that we were at a park and multiple garbage cans had tipped over. I believe they tipped over because it was very windy that day. My mom wanted to pick up all the garbage cans. I, literally, drove her to each garbage can (there were a bunch) so she could pick the garbage cans up, that had fallen over.

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During this time in my mom's life. . . . .I never put her down or asked her why she would do these things. I just went a long with her. I entered into her world and stayed there with her during this time. There was nothing I could say or do that would change her behavior. She couldn't understand my explaining, even if I tried. This behavior kept her mind busy and gave her something to do. Something that she enjoyed doing, and it didn't hurt anything or anyone with her doing this.

The repetitive behavior made me think to myself.....




and the answer was because this was our NEW normal with Frontotemporal Dementia. This is normal for someone with Frontotemporal Dementia.

This is the advice that I would give myself, if I could give myself advice, back during the garbage can obsession/repetitive phase. . . .

The repetitive behavior and obsessions will test your patience. This is definitely a test in patience. FTD will give you the ultimate repetitive behavior and obsessions test. Learn to be patient and to let things go. Remember you are not alone! This won't last forever! Stay strong! You can do this!  :)

My mom did other repetitive behaviors then just the garbage can, also. Another popular thing my mom was obsessed with was turning on and off her outside lights. I'll have to write a story about that repetitive behavior sometime.

This is our garbage can story!

What repetitive behavior or obsessions have you seen your loved one have?

My Mom Didn't Want A Husband This Day

September 11, 2017

My mom lives just down the street from a bakery place called "The Chocolate, A Dessert Cafe", located on 9118 S Redwood Road in West Jordan, UT. We drive by there quite frequently when we are going on a drive with my mom.

Paul and I always joke to my mom that we should stop at the bakery and get her a husband. She always just laughs. I'm sure she has no idea what we mean.

We decided one day to actually stop there and do exactly what we always say. 

This bakery makes a super moist yellow cake with chocolate frosting. This cake is called "The Husband". I wish I new the reasoning behind the name of the cake, but I don't. This cake is super delicious, and that means a lot coming from someone who doesn't typically like a yellow cake with chocolate frosting. This is a cake I know I will eat again and again.... in the future. Paul really loves this cake, too.

Paul bought us The Husband and a Cazookie (A huge warm baked cookie with ice cream on top) so we had the best options for us to choose from. :)  My mom dived right into the Cazookie and she had no desire for The Husband Cake. She dived right in while the Cazookie was still hot and I'm sure she burnt her poor tongue, just a little bit.

My mom always has a hard time waiting for food to cool down. She is always eating stuff hot and doesn't listen to us say "wait, for it to cool down". She struggles with this all the time.

We had a fun time and enjoyed our desserts. Below is a short video that Paul took of us arriving at the bakery.

My mom didn't care for or want a husband this day!

A little humor, always helps us on our dementia journey.

Thank you to The Potters for introducing us to The Chocolate!

P.S. This is not a sponsored post. This is just a honest true story on our experience with my mom at The Chocolate.

Have You Heard of Frontal Temporal Dementia Before?