Cindy's Life Updates with Frontotemporal Dementia: September 2017

It's Okay To Not Be A Superhero Every Day

September 25, 2017

#Caregivers are your loved ones hero, but when you have these symptoms of #caregiverstress lay your cape down to relax recharge and reflect pic.twitter.com/OVMr4K6C9j
— Terri Anderson (@CareGiversDepot) September 23, 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.....

WHY

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.

Welcome To The Car Wash!

September 09, 2017

It seems like every time I fill up gas in my car and I pay from the pump, I am asked if I would like to buy a car wash or not. I have ALWAYS hurried and pressed no, but not on this day. This day I pressed YES to see what would happen.

I was out of gas and needed to fill up the car with gas. My mom told me the car windows were dirty and to clean the car with the washer/squeegee. I thought to myself should I use the gas stations washer/squeegee or should I press yes to purchase a car wash. I thought what the heck, I might as well buy a car wash, and see how this car wash thing works.

We didn't have the car wash planned for this day. This is something we did on the fly, this day, before dropping my mom off at her place. I hadn't been videoing us, but I was glad I had the recorder, so I could video this moment.

Come see our car wash experience and see for yourself if we had fun or not.

Next time we will have to try the touchless car wash.

Welcome to the carwash,

Welcome to the carwash,

Welcome to the carwash episode!

Thanks for watching! I hope you will have fun watching this video.

Later Stages

Swallowing Issues & Cutting Food Up Into Smaller Pieces - Dementia

September 06, 2017

I'll admit that I use to be the one who thought dementia was just a memory problem. I never had any clue that dementia was MUCH MORE than just a decline in memory. I wasn't educated very well on dementia, before dementia hit us.

I've learned in the past year that dementia can also affect swallowing or how to properly eat. My mom has a hard time eating and I can tell she forgets the steps to eating. My mom stuffs way to much food into her mouth. She'll keep stuffing food into her mouth and she'll forget to swallow the food, before she puts more food into her mouth. The struggle with swallowing has been real!

It's honestly such a sad thing to watch. I hate watching my mom struggle on how to eat. I hate watching the fear in my mom's eyes as she eats and how she is clueless to the eating process. I've watched her choke, I've watched her eyes water up, and I've witnessed her throwing up because she has put to much food into her mouth and swallowed to much at a time.

The things that help us the most are -

1. Cutting up her food into smaller pieces (like you'd do for a child), especially if I know it will be a struggle for her to eat.

2. Reminding her of steps to eating while she's eating. She still struggles with understanding what I am saying & how to do what I say while she is eating.

3. Having her drink water in between swallowing

4. Patience

5. Humility

6. Positivity

We brought up the swallowing issue to the doctor at my mom's last doctor appointment. He decided to put her on a soft food diet. I'm hoping that will help her for now.

We went to Costco last week. My mom insisted that she wanted to go inside Costco. My mom came in with us and we ended up buying hotdogs to eat. I cut up the hot dog so it would be easier for my mom to eat. I just wanted to show an example of what I do for her, when I think something will be harder for her to eat. I'll ask her if she wants her food cut up and she'll agree for me to cut up her food.

My mom is still very determined in life. She is living it up. She has taught me a great lesson to NEVER GIVE UP. Even when the going gets tough, never give up! Even when things are hard, keep going!

I am thankful for the lessons I continue to learn from her.

Reunion with Tiger the Cat & Our Mom

September 04, 2017

My mom was able to have a reunion with her kitty cat, Tiger, this weekend! She had been waiting for this moment for awhile.

Tiger let my mom hold him for just a minute. He's never really been a big fan of her holding him. Tiger would walk by her and have his body rub against her a few times.

The moment that Tiger had been waiting for, happened. My mom was eating some chocolate chip mint ice cream. She was almost finished with her ice cream and then Tiger went up to her and begged for her ice cream. It is something he always use to do with her. My mom put her bowl down and let Tiger eat some of her ice cream. My mom saved the last bit of ice cream for herself to eat after Tiger had eaten out of the bowl.

You have to pick and choose your battles with dementia. Telling her to not feed Tiger ice cream would have made her mad and she would have done it anyways. This is something she is use to doing with her dementia. My mom's grandkids were watching all of this and they had the look on their face like they couldn't believe what grandma was doing.

Tiger and our mom were reunited and it felt so good! :)

Thank you for taking such good care of Tiger, Jon, Jamie, and the Family!

Here's a short clip below, for you to see my mom feed Tiger ice cream.