The Beginning Stages

Our Missed Sign of FTD - My Mom Could No Longer Hold A Job

December 11, 2017


My mom was a computer whiz, back in the older, computer days. Back in the desk top computer days. She was such a whiz. I never got the chance to learn all that she did with the computers, back then. I would always see my mom on the computer with any free time she had. She loved scanning photos to the computer and making CD's with the photos on them. She loved typing letters on the computer, too. My mom loved it when e-mailing came out. She loved e-mailing long e-mails to others. Perhaps, maybe, I got my love of computers from my mom.

My mom had many jobs that required using a computer and customer service throughout her life. Because of this, her last job should have come natural to her. My mom worked at O.C. Tanner, O'ccurance, Classic Demos, helped my dad with his tax company with the tax paperwork, and my mom's final job had to do with multi-tasking and customer service. My mom was at this job for 5 years, when all of the sudden she could no longer keep up with the demands of her job.

My mom was slow with the computer at her final job. Her numbers were not matching up to others with the same job description. She was starting to have errors that she was doing. I remember my mom got called into her supervisors office on numerous occasions. I remember my mom was so frustrated with this. She was frustrated with herself. They gave my mom an easier job hoping she could keep up with the easier job. She couldn't keep up. 

My mom had been going through a divorce and the court process. I always heard the word, STRESS. I really just thought she was really stressed, and this to would pass. It never did just pass. It only got worse.

I will be forever grateful that my mom's job never fired her. They worked with her every step of the way. She was able to get onto disability, and continue to keep her insurance through this job that she had.

We didn't realize at the time what a BIG thing this was, that my mom no longer was able to work.

We started to get use to the fact that my mom had numerous health problems. I don't think we ever once thought, "this was a Dementia problem starting". It just seemed like my mom had an array of health problems combined, all at once.

Our missed sign of FTD was my mom no longer was able to hold a job.

There is such a big difference between someone who is lazy and does not want to work compared to someone who is trying with all their might to work, but can not work to their full ability.

My mom lost her job about 10 years before she was diagnosed with Frontotemporal Dementia.

I was in my later teens, early 20's during this time. I was trying to figure out my own young adult life while, my mom was struggling in her own life. My brother's were newly married trying to figure out their new married lives. 

#ThinkFTD #EndFTD #Dementia #FrontotemporalDementia 

Holiday Fun

My Mom Visited Santa - Ho Ho Ho

December 06, 2017



Paul had a Christmas party for his past clients this past Saturday. This was the first time that Paul and his team decided to have a Christmas party for their past clients. I wasn't sure if I was going to take my mom or not. I finally decided that it would be fun to have her take a picture with Santa Claus.

Everything went perfectly at the party, and my mom did so good. There was a lot to keep my mom entertained. My mom watched some of The Santa Clause movie, colored on Christmas coloring pages, had pictures taken with Santa Claus, socialized with her niece, listened to Christmas music, and ate some treats.

I have a picture with my mom and Santa Claus now. I've never had a picture with her and Santa, even when I was a little kid! You are never too old to take a picture with Santa Claus! Creating memories is what it is all about!  :)



It was a blessing that my mom did so well! I'm glad that my mom was able to come to a Christmas party, and everything went well. It was a Christmas miracle that she stayed for hours, and she didn't ask to leave! I was able to have fun at the party, and not have to stress about my mom.

We are thankful for everyone who attended the party!

Many thanks to the fabulous photographer who took our photos with Santa Claus!

Keil Creations Photography
www.keilcreations.com

801-755-9631

I try to look for the positive out of hard situations. This is my positive outlook right here. There is always a positive, even if there's a negative situation. You just have to search for the positive. Positivity will get you through the hard times, better than negativity will. This is what has helped me get through our FTD journey, and is what will continue to help me get through it.


We continue to wish you a Happy Holiday & a Happier 2018 coming up!


This is how I got my mom excited for the party. We dressed up for the car ride to the party! :)

Holiday Fun

Happy December & Happy Holidays

December 04, 2017


I can't believe that it is December already! This year really went by super fast!

I notice that I have a lot of people checking out my posts who have family that has FTD. My blessings and heart go out to all of you. I know our journeys are different, and I also realize that they are similar in a lot of ways, too. My prayers go out to you this holiday season. My prayers go out to those that have lost their loved ones to FTD and any other disease, too.

I'm going to write an update on my mom!

The holidays are a little different with my mom this year. This year she has never known when a holiday is. She didn't know when her birthday was this year, without us telling her, either. She doesn't seem to thrilled about celebrating holidays. I think it's because she doesn't know the meaning of the holidays. It is just another day to her. I'm not sure what we have in store for this Christmas, but whatever we do, we'll be visiting her, and taking her on some car rides. I've noticed that holidays become a thing of the past, at some point, later on with dementia.

My mom has had pain flare ups lately and she has a hard time walking. It's been amazing because she had a ton of pain before she was diagnosed with FTD. She has gone at least 3 years without complaining of pain, and now her pain has come back. 

I have noticed a big change with my mom's short term memory lately. I have been getting shocked when we were just somewhere and my mom does not remember that we were just there within minutes ago. I have never noticed her short term memory this bad. We have noticed her memory slowly fade away year by year, and I'm shocked to see her short term memory slowly fade away, too. It's like we can tell my mom something, and she'll forget it in the same day. Our conversations are changing because of this, and I feel like I'm losing more of my mom each day.

My mom seems to have a harder time recalling people's names quickly. Sometimes it takes her awhile and then she will remember the name. Sometimes she just can't remember names. She forgets who certain people are and how they are connected to the relationship she has with them. This is sad to see.

We decorated my mom's room for the holidays. We took her some of her Christmas stuffed animals, and we decorated her door. The assisted living has a beautiful tree up with some beautiful decorations, also.



May you make many memories, receive many blessings, and have a happy holiday season.

I've said it before, and I'll keep saying it . . . . . . . 

Thank you for your support!

Families need all the support they can get. I know for a fact that they are so very grateful for any, and all the support they get!



Later Stages

14 Tips How To Shower Someone with Frontotemporal Dementia!

November 28, 2017


Let's face it head on. No positivity, to cover the negativity. No sugar coating it. Showers are SO HARD for people with Dementia, and in our case, especially Frontotemporal Dementia.

Showering has been one of the hardest things for my mom to do, since she was diagnosed with FTD. It even goes way back before she was diagnosed. After 4 years of being diagnosed with dementia, I finally have a routine down, that actually seems to work.

The beginning stages I could not get my mom to shower worth anything. We were so desperate to at least get her hair washed so we would pull a chair up to the sink and wash her matted hair that way. Just like the way you get your hair washed at a beauty salon. Other times, my mom would say "NO", to showering. She thought she was just fine.

The assisted living memory care place, that my mom is at now, has only been able to help my mom shower once, since February. They are always asking us "how do you shower your mom?". "Can you show one of our CNA's how to shower her?" I kind of feel like I'm a professional, when the professionals, are asking me how to give my mom a shower.  :)   I shower my mom at least once a week, at the assisted living place. If I get lucky, twice a week.

Here are some tips that I do now, that seem to work. I hope this can help someone else out there. I hope this can help someone out for the beginning stages, and to help you prepare for the mid/later stages. The beginning stage is so hard because you go into FTD blinded. For me, it felt like I had to figure everything out on my own.

I put together all of my mom's shower essentials. This includes: shampoo, conditioner, body wash, bath sponge, razor, and lotion. I found a basket to put all of these shower essentials into. This basket has helped save me, by having it all in one place, ready to use. I just pick this basket up, and take it to the bathroom. I store this basket in my mom's bathroom on the counter.

I believe that the pump shampoo has helped me out a tons during the shower process. It has saved me time by just doing one squirt each to get the shampoo and conditioner. It eliminates me having to open up the shampoo bottle, squirting shampoo out, and closing the bottles like the usual shampoo is like. I find these pump bottles at Costco, but I'm sure you can find them somewhere else, too.



FTD Dementia Showering Tips

The Shower Announcement / Exciting, Happy Voice
1.
I always start out with telling my mom "It's shower day today" and I say it in a really exciting voice. I'll always say something like "let's do it really, really fast". That way it makes it sound like it's not a big thing, and it won't take too long. I never ask "do you want to shower now"? If I ever ask my mom in a question form, it always leads to a "NO".

Use These -

It's shower day today!

We are showering today!

We are going to get you ready for _____ (place something they are going to be doing soon or something that excites them here)

Never Use -

Do you want to shower today?

Are you ready to shower?

Can I help you shower today?

Step by Step
2. In our case, I will tell my mom the steps to shower because she has a hard time with everything that goes into having a shower. I specifically will start off by telling my mom to "take off your earrings", "take off your watch", "take off your shoes", etc.

Pick Out Clean Clothes
3. While we are doing step #2, I get my mom a clean outfit out of her dresser, that she will wear after the shower. I get her shower basket and everything she needs for the shower ready. I learned from early on that my mom has a hard time to pick out clean clothes. I'd suggest to just pick out the clothes for your loved one to wear, instead of asking, "what do you want to wear today?".  I noticed once I started picking out clothes for my mom, it was a relief for my mom.

Remove Hair Accessories/Comb Hair
4
. I take out my mom's hair accessories from her hair. I comb through her hair before showering.

Enter Bathroom/ Take Off Clothes
5.
We enter the bathroom with her shower basket, towels, and clean clothing. I tell her to take her clothes off.

Test Water Temperature 
6.
I get the water started and make sure it's the right temperature, before she gets in the shower. I ask my mom to feel the water, and tell me if it feels like a good temperature for her.

Rinse Hair and Body with Water / No Surprises
7. I have learned that it's best to not just have the water in the shower blast my mom, all at once. I have learned that she does better, when I tell her what I am doing next. Like I'll say " I'm going to rinse your hair now, close your eyes". She doesn't like to be surprised with the next step. I'll tell her what I am putting on her hair and I let her know it's going to clean her hair. 

Shampoo/Condition Hair, While Loved One Washes Themselves with Soap
8.
I'll shampoo/condition my mom's hair, and while I'm doing that I have her cleaning herself with soap and a bath sponge. I will tell her where she needs to clean herself. Otherwise, she is confused where to clean herself. At the end, I'll help her wash areas that I think need extra washing. Having her clean herself, seems to help distract her from what I am doing, and the parts to the shower that she doesn't like.

Wash & Shave Arm Pits
9.
I tell my mom to raise her arms and then I wash and shave her armpits.

Rinse Time
10. Make sure you rinse all of the soap off with water. :)

Shower is All Done Now/ Drying Time
11. The showering part is all done now. I will give my mom a towel, so she can dry herself off. I will help dry her, with another towel, to help the process go faster.

Help Put Clothes On
12. I help my mom put on all of her clothes after the shower. She will go into her room after that, and put her new clean socks on. My mom has been needing a little extra help lately, and I help her put her socks on, too.

Comb Hair/ Let Hair Dry
13. I will comb my mom's hair for her and put it up into a pony tail, while her hair is still wet. This is just something we've always done and something that she is use to. We let her hair dry while it's in a pony tail. I have never blow dried my mom's hair. If it works, for your loved one, then blow dry their hair.

Make Them Feel Beautiful / Compliment Them
14. I almost forgot this tip. This is the fun part of the steps to showering. I like to put blush on my mom's cheeks for her, after we are all done with everything. I tell her "she's beautiful". I tell her that her hair is so pretty. I use to put lipstick on her, too. I feel like at the stage she is now, she doesn't need lipstick on, and blush is enough for her. This part is the most rewarding part for me, after the shower, because I get to see my mom smile, and feel beautiful.


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These are just some of the steps we take, while I help my mom to shower. These steps work for us. I never realized that so much goes into showering and we usually don't have to think about the steps to showering, it just comes to us naturally. With a person with dementia, it is so hard for them to think & process all that showering requires. I had a stroke last year and showering is sometimes hard just for me. The stroke opened up my eyes, even more, to how many steps there are to showering. I will admit I have forgotten to use shampoo to wash my hair or I have only shaved one leg, and forgot the other one. The brain does so much thinking, in the shower process, that sometimes you don't even notice. It just comes naturally to those who's brains are working more correctly than others.

I know showers are so hard. It's probably been one of our constant challenges throughout the FTD process. I am happy that I have a routine down, and I just hope that the assisting living will get it down sometime.

At the end of the day, do your best. That is all that you can do. Remember you are amazing and you are doing a great job!



If anyone is reading this who has been through this, or is going through this now, please add your tips and tricks for showering in the comment area, so we can all learn from each other.

This is just our journey to showering. I know everyone has their own separate journey.

Thank you for reading! :)





About Us

Help Save The Brain - Frontotemporal Dementia - #EndFTD #ThinkFTD

November 20, 2017



We are sporting our new t-shirts to help spread awareness about Frontotemporal Dementia! We are pointing to our shirts with our thumbs.

Have you heard of Frontotemporal Dementia before?

I had never heard of FTD until the day my mom was diagnosed with FTD. I was only aware of Alzheimer's and Dementia before. I had no idea there were different types of Dementia. My purpose and goal here on this blog has been to help spread awareness to Frontotemporal Dementia, so more people are aware that it exists. FTD is a heart-breaking dementia to have, just like all other dementias are.

Frontotemporal Dementia Definition -
(from the Association of Frontotemporal Dementia website)

"Frontotemporal degeneration (FTD) is a disease process that results in progressive damage to the temporal and/or frontal lobes of the brain. It causes a group of brain disorders that share many clinical features. FTD is also commonly referred to as frontotemporal dementia, fronto-temporal lobar degeneration (FTLD), or Picks disease."

FTD Facts - 

FTD usually occurs between the ages of 50 and 60, but this dementia has also occurred in younger ages, as well. The youngest being in the 20's and the oldest as being in the 80's.

There are currently no treatments to slow or stop the progression of this disease.

FTD affects the frontal and temporal parts of the brain.

FTD affects an estimated 50,000-60,000 Americans, which was noted in 2011.

The length of FTD can be anywhere from 2-20 years after onset. The median length is 8 years.

FTD affects decision-making, personality, social behavior, language, memory, and more.

FTD is often misdiagnosed as depression, psychiatric problems, or movement disorders. (They thought my mom's problem was depression and psychiatric problems at first, and it took us a long time, to finally find out the real problem, my mom was dealing with.)

FTD is one of the more common dementias that occurs to the younger aged population.

There are subtypes of Frontotemporal Dementia which include: behavioral variant FTD (bvFTD), primary progressive aphasia (PPA) which affects language, and the movement disorders progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD).

For the complete FTD Facts, please visit: 

Thank you for reading and taking the time to learn about Frontotemporal Dementia! You are helping me in this goal, by reading this post!

I appreciate it more than you will ever know! My mom can't help raise awareness with her voice, but I can help her, by using my voice for her! I wish she knew how much of an impact she is making. My mom does not realize she has Frontotemporal Dementia, and I have never been able to speak to her about FTD, with her understanding. 

Help Save The Brain! #EndFTD #ThinkFTD


Please watch the video below to see our fun t-shirt reveal to my mom! I helped her put her new shirt on. She had no idea that I was already wearing the same shirt.


Thank you to @WearingDementia for their fundraising and helping spread the word about Frontotemporal Dementia!

Please help us get the word out about Frontotemporal Dementia by clicking on the bird's feet below & tweeting! Please share anywhere you can by clicking underneath the Share This Story area, also. Thank you! :)


Tweet: Help Save The Brain! Frontotemporal Dementia! #EndFTD #ThinkFTD @monkeyami https://ctt.ec/T8VY3+

The Beginning Stages

The Attempted Hospital Escape

November 17, 2017


Our FTD story started out with my mom making a trip to the hospital and getting admitted into the hospital. My mom was admitted into the hospital for a few days in November 2013. You can read the story here to be caught up with why my mom was admitted into the hospital & to see when this attempted hospital escape story happened. This happened the same time as the Hospital Stay - IMC post.

My mom had been acting quite off for some time. We still had no idea what was really wrong with my mom. I went to visit my mom at the hospital, like I did every day, while she was in the hospital. It was just me and my mom in her hospital room. She all of the sudden told me "let's get out of here, let's leave".  I remember asking her who was going to drive her away and she told me "you are". I remember thinking & wondering to myself what to do. She was completely dead serious about escaping the hospital. I felt like at that moment, we could have been in a movie scene together, trying to escape the hospital.

Before I knew it, my mom ripped her IV line out of her. She ripped off anything that was attached to her. She put on the rest of her clothes and she said, "let's go", as she started out of the door. No matter how hard I tried to get her to stay, she had already made her mind up that she was going to escape with my help or not. I remember standing there, feeling so torn, as my mom, wanted me to help her escape, but the right thing to do was to get help from a nurse.

As my mom started down the hallway, I walked and knocked on a nurse's door and told her my mom was trying to escape, and I needed their help.

The nurses caught up to my mom near the elevator, and brought her back to her room. My mom was so UPSET. She was upset because, she thought she was fine, and she just wanted to leave.

They had to call security, and have someone sit at a desk outside my mom's door, watching my mom's door, to make sure she didn't try to escape again. Yep, that is right. My mom is someone who has been watched carefully while at the hospital.

My heart was torn in so many different places during this time. I knew something was wrong with my mom, but I didn't quite know what was wrong with her. Part of me was feeling like my mind, was also, going crazy, in the process of everything.

You would think that this could be a made up fictional story, but instead, this is the REALITY of Frontemporal Dementia.

I sit here and think of how grateful we are. We have come so far in this journey. I would never, ever, want to start this journey again. I hope we never have to again. It has been so hard, so tear jerking, so heart wrenching, so every feeling you can feel, and some more. I am thankful we have come this far. 

I am glad we are past the first stage. My heart goes out to everyone who is starting the FTD journey!

I am scared of the upcoming stages and the unknown. I'll replace my fear with faith, though.

Faith over fear, always.




We Will Miss You, Tiger!

November 15, 2017


Life had other plans for us this week.

I really can't believe that I am writing this post so soon. We always thought Tiger would outlive our mom. We never once discussed losing Tiger first. Tiger recently became real sick with cancer, and completely stopped eating. He lost all of his body weight, that he could possibly lose.


Tiger is in the heavens now and he'll be waiting there for my mom.

I know there is a reason that my mom found Tiger. It didn't just happen by coincidence. It was meant to be. Tiger completed his mission here. He was a great companion for my mom. My mom was blessed to find him, for companionship, in 2011. Tiger was my mom's side kick throughout her Frontotemporal Dementia journey.

Thank you Jon, Jamie, and the kids for LOVING Tiger until the end! You gave him the most love that he could ever have!  You helped complete his mission here!

We will miss you, Tiger!

Rest in LOVE & PEACE!

Here are some previous blog posts about Tiger, if you want to get updated on Tiger, and my mom.
Reunion with Tiger the Cat & Our Mom


Tiger Goes To A New Home

Tiger Hear Him Roar


Saying Goodbye Was Hard! 


This was a common thing my mom and Tiger would do. My mom would go talk to Tiger through the window, while she was outside, and he was inside. Tiger loved looking out of this window. There were many times Tiger would be there, while we drove away, and he'd jump back up when we would pull up to the house.  



Have You Heard of Frontal Temporal Dementia Before?