Cindy's Life Updates with Frontotemporal Dementia

You WILL Get Through This! - Falling Apart & Getting Back Up -

July 09, 2018

My family and closest friends have seen me at my lowest points. They've seen me cry more times than I'd like to admit. I like to show a strong face, but the truth is behind the internet, I do cry, more than I'd like to.

I'm taking this story back into time. Back into the year 2014. This was during the weeks we were taking my mom to the neurologist, to figure out what had been going on with my mom, to see why she was acting so strange, & also learning the sad news.

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I was at work leaning over with my head down on top of my arms on the desk. I had tears streaming down my arms onto the desk below. Unfortunately, a few people at work got to see my tears. The tears seemed like they were because my heart felt broken into a million pieces. I was losing my mom and I really just could not comprehend it all. I never imagined that I would hear the words, "Your mom has Frontotemporal Dementia. There is no cure and it is eventually fatal."

You see, I am my mom's only daughter, so our bond was super close.

On this occasion at work, there was a friend that happened to see me at my worst. I was super sad at the news. He gave me one of the greatest speeches that has stuck with me. This is just the short version of our conversation.

He said. . ."Think back to ALL of your trials throughout your life".

"You made it through them, right?"

Me . . .Thinking for a bit.

"Yes, I did."

He said . . .

"I know it's super hard right now, but you will get through this. Just like you have gotten through all your other trials."

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I'm here to say, that at the time during this conversation, I couldn't really picture myself getting through this trial. I was devastated.

I'm here to say it has been 4 years since this moment in my life.

It has gotten easier for me to cope with, 4 years later. It has been hard, but I have gotten through this.

My friend was right. . . .

You WILL Get Through This!

Looking back, I'm so grateful for this conversation and the time that was put into this conversation.

I hope this message touches someone that needs to hear these words. I felt like I needed to share this story today and I felt compelled to share.

Remember

You WILL Get Through This!

Just like after a storm. . .
and the sun comes out & reappears.

Caregiving

Doing Things For My Mom, That She Once Did For Me

June 25, 2018

I heard the words, "how do I do this", blurted out of my mom's mouth.

I was busy putting away my mom's shower supplies, after she had showered, when I heard these words. I glanced over at my mom as she was holding up her hair elastic to her head.

I quickly stopped what I was doing, and told her she didn't need to worry about it, because I would help her.

Typically the inside of me would have stopped, felt shocked, & sad at the same time. These kind of questions my mom asks, shows me the progression of the Frontotemporal Dementia, she has. I have become accustomed to hearing stuff like this lately. On this day, it didn't phase me. Maybe, because I have been helping my mom with her hair for years, and I already know she needs help to put her hair up how she likes it.

Instead, I told my mom something similar to this.

I started combing my mom's hair and told my mom that she use to do my hair, like I was doing hers. She replied with a question "I did?".

I told my mom that, " I am now doing your hair, like you once did for me."

I always try to reassure her, that I will always be there to help her, so she feels comforted.

I have learned with Dementia, that I am blessed to be able to do the things for my mom, that she once did for me. I am now returning the favor.

This just shows that something, as easy as putting hair up in a ponytail, is HARD and IMPOSSIBLE for someone in the later stages of Dementia.

Later Stages

Cindy's June Doctor Update

June 06, 2018

We took Cindy to another doctor's appointment yesterday for a follow up. All went well. These appointments seem like a breeze these days, compared to when she was first diagnosed. She has no anger anymore and she basically has no idea why she's going to the doctor.

We received a receipt after paying her co-payment. I was holding it in my hand while Cindy asked me what it was. She didn't know what a receipt was. The new phase lately has been Cindy asking us what "basic things are, like a receipt.

Cindy hasn't been sleeping well at night, so her sleep and mood pill has been increased, so hopefully she can get some better sleep. She texted me last night 88 times from 7:30pm to 7am so that shows that she's texting me instead of sleeping. I put my phone on silent and let her text away. I think texting is a calming method for her. 🙃

Here are some examples of Cindy's texts to me lately . . . . I'm the text in yellow and she's the one in gray.

Cindy might have a new ride soon in the form of a wheelchair. The doctor ordered her one because she's had a harder time walking lately. The doctor ordered physical therapy, too. We'll see how that turns out with her Dementia, and if they can get her to do the therapy.

Cindy is still doing well in her own world. It seems like she has entered a newer stage of Dementia that we are still trying to figure out. She's more quiet. She has lost a lot of meaning of words and conversations are hard. We communicate with music, hugs, and our smiles. She loves her music.

Caregiving

Thank You, Mom!

May 11, 2018

My mom has taught me so many things throughout my lifetime. More than she will ever know.

I feel like she has been teaching me the most meaningful lessons throughout the last few years, while she has had Dementia. For that, I will be forever grateful.

My mom has taught me . . . . . .

- Patience. Patience. Patience.

- Live in the present moment.

- How to be unstoppable in caring

- How to give of myself and give to others.

- Have fun.

- Don't be too serious.

- Smile!

- You CAN get through anything that is hard.

- Never give up.

- Love is all you really need.

I am a better person now, than I was before Dementia.

All because of you, Mom!

Thank you, Mom!

I would do this all over to learn these life lessons again. . . . Even though I would never want to go through this again.

I dedicate this beautiful song to my momma and to all the wonderful mommas out there!

You are all AMAZING!

This song reminded me of my mom!

Happy Mother's Day!

Song by

Stan Walker - Thank You.

Caregiving

My Top 10 Stress Relievers For Caregivers

May 01, 2018

Here are some of my top stress relievers that have helped me in stressful times during the last few years.

1. Meditation - YouTube videos

I found out about meditation and YouTube videos just a few months before my mom was diagnosed with FTD. I would say this has been a blessing for me to learn about meditation videos, and to be able to listen to them the last few years.

I have gotten into a habit where I listen to meditation videos while I go to sleep or I have a harder time falling asleep. It's such a habit that I have listened to meditation while falling asleep at home, on vacation, or in the hospital. This always helps me out and helps me to fall asleep easier and more peacefully. I love that I can just do this from my phone, and have access to it anywhere I go. This video below, is my current favorite one, and the one that I listen to every night.

2. Walk/Jog/Run/Exercise/Move Around -

I started walking, sometimes 2 times a day, with my dog. This helped me relieve so much stress that I had. Walking and seeing the beauty around me helped me forget about my worries.

I would even, at times, take my mom with me to the park. She'd sit in the car listening to her music with her headphones, while watching me walk around the track. This helped me de-stress. I was able to entertain my mom, while doing something that helped me, too.

My goal lately has been to just move around more than I have been.

My walk at the park. I had my mom get out of the car to take a picture with me in 2014.

3. Pets -

I have been lucky to be surrounded by pets that always have seemed to know when I needed their love. They have really been therapy for me. Petting an animal can help relieve stress and worries.

4. Journaling / Blogging -

I haven't been that great with journaling for quite some time. I have started to blog and document this FTD journey that we have been on. I feel like opening up and letting it all out has helped me out so much. Letting it out is therapeutic! Let it out!

5. Music -

Music is probably a given stress reliever for everyone. Listening to some upbeat music can always make you feel better. Turn on and turn up the music!

6. Positive Affirmations -

Positive affirmations help to boost me up and to keep me on the right path of thinking. This can really help out if you wake up and do this in the mornings. It's a great way to start your day out. I learned this from Tony Robbins. It doesn't hurt to have a hour of power in the mornings, too. Take time to focus on yourself.

Think to yourself positive affirmations like the ones below. Say positive affirmations inside your head over and over.

I Can Do This

I Am Strong

I Am Brave

I Am A Great Caregiver

7. Search For Support -

I'll admit that I was the one who thought I could do everything by myself. I didn't need anyone or any support. The truth is everyone needs all the support they can get while going through stressful situations! Search for support from family and friends. When you feel like you need extra support reach out to support groups in person or online. It is very therapeutic to speak to others who understand what you are going through. No one should have to go through stressful situations alone!

8. Be Thankful -

Be thankful for the little things. This is what helps me keep going. I search for just even the smallest things that I am thankful for. I always remind myself that things could be so much worse, and then it reminds me to be thankful for my situation. It could always be worse than it is.

9. Friends and Family -

Having the support of friends and family has been what has got me through my stressful times. Just knowing they were there for me through it all helped me. I didn't need them to help me fix my problems. It just helped to know they were there. It's nice to get a moment to yourself away from it all, and hang out with friends & family, too.

10. Hot Shower or Bath -

Whenever I feel like I need to unwind and just get away from everything. . . . . I love to get in the shower and just have the warm water run down my body. It helps release tension & sore muscles. I love to do the positive affirmations in the shower, too. That makes this a 2 in 1 stress reliever for me. Make your "shower time" your "me time". Don't think about all of your worries and everything you have on your to do list. Let your shower time be your healing time! Think of positive affirmations, while you are showering. It will do wonders for you.

These are just a few of the ways that I have found to help relieve my stress. What are some stress relievers that help you?

Later Stages

Dementia Robbed My Mom of Being The Grandma She Wanted To Be

April 21, 2018

Dementia robbed my mom of being the grandma that she wanted to be. Dementia did not allow my mom to be the grandma that she looked forward to becoming. My mom was in her prime time of being a grandma when she got robbed by Dementia.

I'm sure that any grandma looks forward to this time in their life. It's the time where they can spoil their grandkids, play with them, and then send their grandchildren home with their parents. I've heard on many occasions how being a grandparent is so fun. I feel sad that my mom never got to experience the true experience of being a grandparent in full capacity.

I feel even sadder that my mom's grandchildren never got to experience the true grandma that my mom wanted to be.

My mom tried with all her might, to be a great grandma, to her grand children. She was more with it, and was able to do a little more for her first and second grandchildren. As the years went on, the real grandma in her, slowly drifted away, day by day, year by year.

I remember my mom feeling guilty all the time because she couldn't be the grandma she wanted to be. She vented to me many times about her guilt and frustration that something was holding her back. I had no idea at this time why my mom couldn't be the grandma that she wanted to be. To be honest, we didn't understand her or understand why she couldn't do more.

Anyone experiencing this same thing or anything similar in life, please remember:

Do Your Best, That's All That Matters!

Doing Your Best is Enough!

You Are Enough!

If I could go back in time, I would tell those exact words to my mom and hug her tight.

This has been a lesson to me and my brothers, that Dementia gives many LIMITATIONS in life. Being a grandparent is one of those limitations, unfortunately.

Activities

Cindy Turned 61 Years Old in March!

April 17, 2018

I did a quick birthday makeover on Cindy. I put some blush, mascara, and lipstick on her. It was time to PaRtY! She gave her makeover a thumbs up. :)

We decided last minute to invite family and friends to come together to celebrate Cindy! We figured this might be the last time where she can get out and do something like this. Some hadn't seen her since before her diagnosis of FTD.

We watched the movie " The Greatest Showman". Cindy has loved to watch movies and loves music, so we thought this movie would be fun for her to watch.

Here are a few pictures of Cindy's birthday party fun!

Cindy's son and Cindy's grandchildren

Cindy and her son, Jon.

Cindy and her best friend from elementary school.

Cindy and her two sisters.

Cindy, & Cindy's son, Jon's family.

Cindy's two kids, Cindy's nephew, and Cindy's two nieces.

A mother and daughter photo.

Cindy and some of her grandkids.

Sisters!

Thank you to all who came to her birthday party & gave her gifts.

Thank you to all who have supported our mom throughout her life!!

I wasn't able to get a picture of everyone who was there. I'm sorry to those of you who I missed! We missed those who couldn't come, too!

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"It's my birthday!

No, it's not!

I still look good though!"

- Perm by Bruno Mars

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I've listened to this song by Bruno Mars many times because my mom loves Bruno Mars. I never really listened to the words too well, before. I heard this song on my mom's birthday and it reminded me of my mom.

My mom didn't know it was her birthday, she didn't know what a birthday was, but she still looked good though!