Cindy's Life Updates with Frontotemporal Dementia: 2018

A Special Visitor at Memory Care - Anything is Possible

December 18, 2018

We had a special visitor visit Cindy at memory care last week. It was one of Cindy's best friend that she met during her working days, back in the early 2000's. Cindy would call her "Debbie, Debbie, Debbie".

Debbie came to visit Cindy, knowing that Cindy, wouldn't remember her. Debbie wanted to visit anyways.

I was nervous of how it would go because my mom has been different lately. It went perfectly and there was no reason to feel nervous. Debbie came in with love in her heart and handled Cindy perfectly. My heart was filled this night, seeing the caring love, that was shown to us.

Debbie showed Cindy pictures of both of them together. Debbie and her husband sang beautiful Christmas songs to us. They drew in a crowd of others that live at memory care, too.

This was a memorable night.

I learned that . . . .

If you open up your heart with love, anything is possible.

Thank you, Debbie, Debbie, Debbie, & Randy, for making our night by bringing in Christmas cheer and love!

Holiday Fun

It's Beginning To Look A lot Like Christmas!

December 03, 2018

It's beginning to look a lot like Christmas! Everywhere we go!

The Christmas tree is up.

The Christmas decorations are hung.

Snow is falling. Snow is everywhere we look. On the ground, roads, and rooftops.

Christmas lights are up all around.

Christmas music is playing on the radio. Christmas movies are playing on the tv.

The gloves & scarf have been brought out for the first time.

Life with Dementia and Christmas time seems so different, almost 5 years into Cindy's diagnosis. It's not quite the same. We try to make this time of year, as well as we can, for Cindy. Just being together, laughing and smiling, is enough for us.

We've been able to watch the snow fall, listen to Christmas music on the radio, look at the decorations, and look at the Christmas lights on the houses with Cindy.

Cindy might not know that it's Christmas time and December. She might not know the meaning of this time of year. That is okay. We hope she can just feel the love that we have for her and we only hope that we can bring a smile to her face.

Hold your loved ones tight this holiday season and smile & laugh together. That is what we will be doing.

We wish you all a

Happy Holiday Season

Full of Love, Smiles & Laughter!

Activities

THANK YOU! THANK YOU! - AFTD Food For Thought 2018 -

October 20, 2018

We were able to participate in the AFTD Food For Thought Event this year! There are events for AFTD Food For Thought in ALMOST every state in the USA, that occur, anywhere from the last week of September to the first week of October. Some states have many different events, some just have 1. They all have to do with food and are unique in their own way.

Paul and I debated if we should do a Food For Thought Event or not. We had never done one before. We decided that we could make a difference, in some kind of way, so we decided to go for it.

We were embraced by offers from donors, sponsors, the FTD community, family, friends, supporters, and just so many people to offer their support, help, and donations. There are so many to thank and we thank you! We noticed everyone and just want to thank everyone so much for reaching out & for your support & love! Thank you for making this event a success!

We raised money for The Association for Frontotemporal Degeneration & raised so much awareness to Frontotemporal Dementia.

With your help, we raised $3,420!

The usual response we hear, when we mention FTD, is that people have never heard of it before. It is a common occurrence to hear this. That was us, too. We hope that one day, everyone will have heard & will know about FTD!

Thank you! Thank you, everyone! We can't thank you enough for all that came together to make this event successful!

We were all busy that we didn't get many photos taken. These pictures are some of the photos that we were able to take. My favorite photo is Cindy's 3 grandchildren wearing their AFTD sponsor shirts, in support of their grandma, who has FTD. A priceless photo to me.

This event we did was in honor of our mom, Cindy, and all others that have been on the FTD Journey, too!

Later Stages

Simple Gestures

September 12, 2018

I've been thinking a lot lately.

I've been thinking that I will never hear my mom say these sentences to me, by herself, again . . . .

I love you!

I am so thankful for you!

Thank you for all you do!

I missed you!

I'm so glad that you are here!

I need your help!

It's sad, but it's true. It makes me sad that my mom isn't able to express herself anymore. She has stopped texting me her "I love you" texts, for awhile now, too. Texting was the last way she was writing/telling me, "I love you".

She is able to show me these things in SMALL GESTURES though, and I'm thankful that she is still able to do that.

My mom shows me her huge big smile and laugh when she sees me. That smile and laugh shows me that she is happy to see me.

We always have a routine where we go to my mom's room first, before we leave somewhere. My mom will put her arm around me first, and squeeze my arm a few times, while we are walking to her room. This is one of the only gestures my mom will do right now that expresses to me her love and appreciation. I always hold onto this gesture, and appreciate it. I know I have a smile on my face when she does this to me, because I notice it every time. It is one of the only gestures, that my mom is able to do, to show her love for me.

I have learned that you will never, ever, fully appreciate something, in it's entirety, until it's the last thing you have left or until it's gone. I never knew how valuable a simple gesture is until now.

Simple gestures are bigger than you think. So big.

Next time someone touches you, squeezes you, gives you a giant hug, gives you a high five. . . notice it and embrace it!

I'm so thankful for the simple gestures in life!

Simple gestures are all that we have left now, because of Dementia!

Simple gestures mean so much, when it comes to Dementia!

Activities

AFTD's Food For Thought Hawaiian Plate Sale Fundraiser 2018

August 31, 2018

I'm happy to announce that we are hosting a fundraiser event to raise awareness and money for The Association for Frontotemporal Degeneration. All donations and money will go directly to AFTD to help with research, support, education, awareness, and advocacy.

We are doing this fundraiser in honor of Cindy & all others who are going through FTD or have experienced it.

Cindy was diagnosed with Frontotemporal Dementia, back in April 2014, at the age of 56. She is now 61 years old. She has 3 children and 5 grandchildren. She currently resides in a memory care facility. Come, meet, greet, and take a photo with Cindy. We will have her at this event for those who'd like to say "hi" to her.

Please share, donate, or purchase a plate to help us find a cure and help support families dealing with Frontotemporal Dementia.

DONATIONS:

Donations can be made at give.classy.org/CindysFTDJourney

CONTACT:

For more information about this event, please contact:

Paul 'Ahota'e'iloa

801-414-4335

Jon DeYoung
801-860-0881

Many thanks to . . . .

Century 21 Everest Realty Group

Drew Bahoravitch

Acclaimed Home Warranty

Ibex Home Warranty

Citywide Home Loans with Brett Wilson

Tialino Catering

Lady Vipers Rugby Team

and to everyone else who has kindly donated

&

for helping make this fundraiser possible!

PLEASE, PLEASE, SHARE and help us spread the word about this AFTD Hawaiian Plate Sale Fundraiser! Thank you!

See the flyer with event details, below:

Activities

Our Busy Fun & Not So Fun Weekend with Cindy

July 30, 2018

We were able to spend the weekend with Cindy.

We did a lot of fun things and some not so fun things.

We started off the weekend, on Friday, with pampering Cindy with a shower, manicure, and pedicure! ;) This picture below is a reminder to me that. . . . .

A caregiver, in all honestly, needs as much help as they can get.

Thank you for your help this day, Paul.

The next activity up was dinner time! Cindy was all smiles. We were the only ones inside eating, and we felt like we reserved the place to ourselves. It was perfect!

It was car wash time, after dinner. We could barely see out our windows, so we took Cindy to a car wash we had never been to. It's a car wash place right next to where she lives called, Waterworks Express Car Wash. We were impressed. This was the only photo that I managed to get of our car wash activity. We were cleaning out the car & vacuuming, while Cindy was listening to her Bruno Mars music, and waiting patiently.

We went to visit Cindy on Saturday, and ended up going to a Taylorsville Emergency medical place. I'm glad we went there because it was not busy and the service was very fast, considering we were dealing with someone who has Dementia.

I felt like I was running up and down, around and around, getting a workout to help the nurse & doctor with my mom. I had to help my mom do everything and at times she seemed confused at what they were asking her to do. She continuously was trying to pull out the needles and she kept unhooking the monitoring equipment. I'm not sure the exact names of these items in the rooms.

My mom hated when the blood pressure cuff would tighten up on her arm. She looked like it hurt her when it did that. She hated getting her blood drawn and wanted to pull her arm away when the needle was inserted. She especially hated getting a catheter in her, and it took an Ativan to get her to cooperate. I think we can all agree and understand where Cindy was coming from with the catheter. Those are never fun to have to be inserted and to not know why, can only be frustrating. She kept wanting to pull her catheter out and take off the tape that attached the tube to her thigh.

We spent a hour there, and I felt mentally exhausted after leaving. Cindy was diagnosed with a urinary tract infection (the first, that we know of, since she's had Dementia) and she has a bed/pressure sore on her bottom. She is now on an antibiotic for a week, and we hope she'll be back to herself soon.

Her symptoms had been extra confusion, agitation, pacing around, more incontinence than usual, & darker urine.

She was a trooper. I felt bad watching all she had to go through, and her not understanding why she was having everything done to her.

We ended the night shoe shopping . . . . in Cindy's closet. My mom has been super repetitive at certain things since she has had dementia. She has always wanted to wear her same shoes. We finally were able to take her old shoes away, that were getting holes and wearing out. We found her slippers in her closet that she has not worn since they were given to her. She received them this last Christmas. She is loving wearing them around where she lives.

Shopping therapy is just what we needed to end the night. ;)

All will be well! We have been saved again by our laughing and smiling!

Change that frown to a smile!

Life is too short to wear too many frowns!

Activities

Tips For Someone with Dementia To Enjoy A Family Reunion or Larger Crowds - Our Family Reunion Time with Cindy

July 17, 2018

My mom was able to go to her Family Reunion last month. Her sister, Linda, was so kind & put the family reunion together.

I was a little hesitant to myself, and wondered how my mom would do around a lot of people. I think my mom surprised us all and did so well. She lasted for at least 6 hours in the evening and past her bedtime.

Cindy was super excited to go see her son & sister, and, of course, to hang out with me (Natalie).

Here are a few tips & tricks for someone with Dementia to enjoy a family reunion and/or larger crowds . . . . .

(These ideas worked for us and might not work for everyone)

1. Be careful to not overload your loved one, all at once. We would sit my mom away from the crowd, and people would come talk to her for a minute, and then let her be. This seemed like it worked really well.

2. Play music on a phone with ear phones. I would play music for my mom to entertain her. She loves music so much. My mom would just listen to music on Pandora. She sang and danced a few times, too.

3. Wheelchair ride. My mom couldn't walk to where we were going to, so luckily there was a wheelchair available for her to use. We included her in the activities, and she got to go for a ride out in the nature. She was able to look at the beauty surrounding her.

4. Movie time. We have Vudu on our phones. We put on "The Greatest Showman" for my mom to watch, and so she could be entertained some more. She loved watching the movie and hearing the music.

5. Dinner time. We had my mom sit away from the crowd, so she could eat her dinner. There were 3 of us that ate dinner with her. I believe the less overloaded she gets, the better my mom does.

6. Bathroom Breaks. Staying near a bathroom is always such a good thing for us. It makes it easier to access & is just so much easier in general.

7. Visits. One on one interactions are easier for my mom to follow. She would have one on one visits here, and there with different people. This seems easier for my mom because she has a hard time listening & communicating. She isn't able to conversate much, but she can sure smile.

8. Pack Snacks. My mom becomes quieter when she is hungry. A good idea is to pack some snacks in your purse to give your loved one, in case, it takes a little longer for the main food to be prepared.

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ALL in ALL, the FAMILY REUNION, was a hit and went so well for my mom! She had a WONDERFUL TIME! My mom was able to get out, dance, laugh, sing, visit with loved ones, go for a wheelchair ride, and see people she hadn't seen for a long time.

The main goal is to make your loved one feel comfortable, loved, and happy!

These tips do just that for Cindy!

Cindy couldn't fully enter our family reunion world. We helped her so she could stay in her own Dementia world, which made it easier, and more enjoyable for her.

Thank you, Linda, for the awesome family reunion!

Caregiving

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!