Cindy's Life Updates with Frontotemporal Dementia

You Did Your Best and That Is All That Matters - A Caregiver's Guilt During Sorrow

March 07, 2023

Beautiful flower photo taken by Cindy

My mom had passed away in our home just a few hours before.

She passed away peacefully with her family by her side.

The mortuary people drove her away just a few hours later. My brother's watched them drive my mom's lifeless body away in their truck down the street until they could no longer see the truck anymore.

All visitors left just leaving Paul and myself by ourselves.

Our home became quiet. Very quiet.

Our caregiving for Cindy was finally completed. My mom was at peace.

I was finally standing alone in my quiet room.

I opened my dresser drawer to get something out of my dresser. I can't even remember what I was trying to get out of the dresser because my emotions took over me. Mixed emotions were pouring & stirring around inside of my head. My heart was beating fast. I closed my eyes so tight and lowered my head while having intense feelings of all sorts of kinds. It didn't help that I had been crying all day from watching my mom slowly pass away.

As I was fighting my emotions so hard, these words came to me over and over again:

"Did I do enough for my mom?"

" Did I do enough for my mom? "

" Did I do enough for my mom? "

I turned myself around trying to fight these questions & words out of my head.

Why was guilt trying to take over me now? I had to fight so hard to make this crazy guilt go away!

I finally was able to fight the guilt & those words away! These positive words finally came to me to calm me & remind me that I did do enough!

"You did your best and that is all that matters!"

I share this story with you because I am sure that I am not alone in having these feelings after a loved one passes away. It may happen whether you want it to or not. Feelings flow all over the place at times of sorrow.

The words I want you and me to remember is to:

Do Your Best and Forget The Rest!

You did your best and that is all that matters.

Be gentle with yourself. Very gentle.

Push the guilt aside.

You are not alone. You are loved more than you know.

There are many stages to grief. Guilt being one of them.

The stages to grief may include:

· shock disbelief

· denial

· bargaining

· guilt

· anger

· depression

· acceptance / hope

This was written back in 2020 when Cindy passed away. I'm just finally posting this now. Thank you for your support always!

Later Stages

Finally Free At Last

March 01, 2020

March 24, 1957 - February 28, 2020

My heart is overfilled with love and appreciation! I can't thank everyone enough for treating me so special during this harder time for me!

❤

My sweet mother, Cindy, passed away on Friday evening. My aunt and I were able to be in the room with her as she took her last breath. This will forever be a special moment for me, as my brothers told me, she was waiting for me, before she finally let go. She finally, let go not to long, after I entered the room.

As a caregiver, you get in a routine of helping them be comfortable and just to make it to another day. We had close moments before where I thought it might be my mom's time to go, but I got use to helping her through those hard times. She was having harder days, but I was so use to my mom making it through it. This time around, my mom decided to trick me. It was time for her to go. I look back now & can see it was all the process and it was happening. No matter how much I tried to prepare for this moment, I wasn't prepared. I'm not sure you can ever be fully prepared, especially with the emotions that come. We have said so many goodbyes during my mom's Frontotemporal Dementia journey. We lost so much of my mom every week, month, and year after year. This has been such a long grieving process throughout the years.

My mom was so strong up until the end. She pushed with all the strength she had, up unto the end.

I'll miss her so much! I'm so glad that she is finally free at last!

There's one thing for sure that I know. I'm a much stronger person now than I was before. I'm thankful for the strength that my mom has given me through being able to be her caregiver. I feel like I came to earth with the calling already to be my mom's caregiver. I've helped her for about half of my life. I'll be forever grateful for these moments and lessons I have learned.

Thank you everyone for the love, service, acts of kindness, offerings of help, and messages. I feel the love and it's helping me get through this.

Many thanks to Paul Ahotaeiloa, my husband, for being my biggest support system for many years! Thank you for the care you gave to my mom even up to her last breath! I couldn't have made it through this journey without you!

❤

I would love to continue sharing our story and spreading FTD awareness. When the time is right, I'll be doing that. I hope you'll still be here helping me spread FTD awareness!

Sending everyone much love & light today and everyday!

You can read Cindy's obituary!

Later Stages

10 Months

February 26, 2020

Cindy has been blessed with visitors this month. I haven't been good at taking pictures, but her grandkids, doctor, nurse, caregivers, and CNA's have visited her, too. I like to joke that Cindy is more popular than me with all the visitors she has. The reality is I'm popular, too, because her visitors become my visitors.

It's crazy to think that Cindy has been home living with us for nearly 10 months now. We have seen many changes with Cindy in these last 10 months. Cindy came home able to walk, talk, dance, and smile. Those things all are now mostly just a memory. I miss all those things about Cindy. I struggle to help my mom now because she is so weak and heavy for me to help her. She looks defeated sometimes when I try to help her, and, to be honest, when I can't help, it makes me feel defeated, too. We stay positive though and hold on to the positives that we have. We are thankful for Paul and Cindy's caregivers who always come help save our day!

We talk to Cindy as she listens. She isn't able to say much back to us, if anything. I know she just loves the presence of her loved ones. It makes my heart melt to see her light up when she first sees her family visitors. She lights up and it's probably the most joy I see from her.

We keep going! All as I know is, Cindy has been a fighter throughout these hard times. She has taught me to never give up, even when times are hard!

Thank you for your love and support! ❤

P.S.

Just a side note. I had no idea when I wrote this post that Cindy would pass away 2 days later. Hug your loved ones tight!

BLESSINGS & MIRACLES Do Happen

February 14, 2020

I've been keeping a secret from you all here. I haven't been able to find the right words.

BLESSINGS & MIRACLES do happen! I have been reminded of this the last few months.

We brought Cindy (my mom) back home to live with us in May of last year. Never in a million years, did we expect a miracle to happen next.

Paul & I found out in November last year that we are expecting a baby! We didn't really believe it and it didn't feel for reals. Years of infertility can make you feel that way.

Every 3 years for the last 6 years I have been admitted to the hospital. The first hospital stay was for an abscess on my ovary and fallopian tube that left one of my fallopian tubes blocked. 3 years later, I was in the hospital for having a dissected artery & stroke. With getting older and just not having the best of luck health wise. . . I wasn't sure if I'd ever be able to get pregnant. I stayed positive and learned to have FAITH and a lot of PATIENCE.

I'm excited that now almost exactly 4 years later, after my stroke, I'll be in the hospital for something so SPECIAL and for something we have been waiting for, for years. We have been married for 11 years and we are FINALLY expecting a baby boy in July 2020.

Cindy will be having another GRANDSON. Her second. She doesn't understand or even realize, but I know she'd be so very thrilled.

XO, Natalie 💋😍💕

Happy Valentine's Day, everyone!

❤ ❤

I pray, every day, that others going through something similar, can have their miracle, too!

Activities

A Reindeer For Halloween? Yes!

October 31, 2019

Halloween felt like another typical day. That is how I was treating it. I didn't prepare to have my mindset in the right place for Halloween. I thought having my mom dress up in something for Halloween would be fun, but I didn't make it to the store or purchase anything online. I thought even if it was just a Halloween shirt it would be fun. I even thought that my mom would think it was silly and not really care, so I figured, it was ok that I wasn't able to do anything.

There was a knock on the door. It was something that I was least expecting. . .
HALLOWEEN CHEER was brought to us at our front door. A surprise.

A smile was automatically brought to my face and this cheer changed my Halloween with a smile and excitement.

Cindy's CNA, Ashley, brought her a costume, glowstick bracelets, and suckers. She gave the option to my mom of what costume to choose. Cindy didn't know what to choose, so Ashley chose for her.

Ashley showered my mom and then got her dressed up as a deer with an antler head band and cute tail. Cindy smiled and seemed happy about the way she looked.

I didn't know how long Cindy would leave her costume on, but to my surprise it was all day, even up to just right before she went to sleep. I had to remove the headband and tail for her.

Cindy spent the day dressed as a deer watching Hocus Pocus on repeat. She had some of her grandkids visit her and the fun part was Cindy got to surprise them with her deer look.

I was reminded again that someone who doesn't know it's Halloween or what Halloween is, can still dress up, and their day can be changed with excitement & happiness.

🎃 🎃 🎃

We hope you all had a fun filled last day of October!

❤

Birthdays

Just Be

October 01, 2019

37 years ago this week, my mom gave birth to me. For that, I am forever grateful to her & all she endured to help give me life.

I have learned with Dementia to . . .

NOT set high expectations, for it will only lead to disappointment or sadness.

Instead, I have learned to JUST BE. Just be present. Just be in the moment. Just be happy. Just be thankful.

Just be ……. (you fill in the blank)

There are so many things that you can JUST BE.

For those wondering. . .

my mom doesn't know the time, day, week, month, year, birthdays, or holidays.

For my birthday this year, I learned to JUST BE with my mom. I was just happy to be with my mom. That was enough for me. It was another typical day with her. I learned to not set high expectations and because of this it was such a happy birthday for me.

P.S.

I decided to kiss my mom on the cheek. She looked at me afterwards and laughed. She gave me a look as if she thought I was a little crazy for doing that. I just laugh and smile at these moments.

Later Stages

A Cindy Update

September 27, 2019

It's hard to believe that it has been 5 months since Cindy has come home to live with Paul and me. It will be 5 months next week. The first few months were the hardest for us. It was hard to figure out a routine, juggle all the new appointments at home, and trying to care for Cindy. It has gotten a little easier throughout the months.

Cindy has had her ups and downs throughout the months. I'm happy to say she's been doing well lately. Instead of her being on a hard jerking up and down rollercoaster, she has been on a straight path for awhile now. We take these moments and hold on to them as long as we can.

Cindy still continues to lose weight. Her oxygen has been better and her edema has been better. Cindy still doesn't talk much at all. We are always surprised and happy when she speaks and smiles.