Cindy's Life Updates with Frontotemporal Dementia: 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!

❤

Activities

A Glimpse of a Busy Day in the Life of Cindy

September 19, 2019

Come a long with us on our journey during a Busy Day in the Life of Cindy Who Is Living with Dementia.

Here we go. . . .

This wasn't our typical day. In fact, it was a jam packed day filled with activities for Cindy to do. This isn't how our days usually go, but this was a busy day that we thought we would document for you to see.

BREAKFAST & NAP TIME

The day started out with a yummy breakfast that Cindy enjoyed. Bananas and Graham Crackers! Her favorites! It was nap time right after breakfast.

NURSE & CNA VISIT / SHOWER TIME / NAP TIME AGAIN

Cindy was laying in bed exhausted and was barely awake when she had a visit from her nurse. Cindy's check up went well. Her blood pressure was good. Her oxygen was better, to barely over 90 now. Cindy woke up to take a shower with the help from a CNA around noontime, right after the nurse left. Cindy was in need of a nap again after her shower.

LUNCH TIME

I didn't document what Cindy ate this day for some reason. I'm sure she worked up an appetite and ate something that she loved this day. I just wanted to document that she did eat lunch this day! :)

CINDY SPEAKS / COMMUNICATES

We finally made it to 3PM and the only words I had heard from my mom all day was "good". I asked my mom how she was doing in her room, and that is how I got her to say that one word. Throughout the day, she communicated to me with nods and head shakes. We have gotten pretty good at our communication guessing routine by her responding to me with head shakes and nods.

You can imagine when I heard my mom mutter the words "let's leave," after not hearing her speak much, that I was happy, and surprised to hear those words. I hadn't heard her mutter those words for a few days.

ERRAND TIME & A LITTLE FIELD TRIP
We had some errands that we needed to do, so we decided to take Cindy on a little field trip, so to speak.

Cindy wanted to take her walker with her in the front seat. Paul and I were running around not realizing that Cindy was trying to get her walker in the car. It reminded us of how a child likes to take a toy with them on a car drive. We didn't want to cause Cindy frustration by ripping the walker out of her hands so we let her try. I finally asked her to let me take the walker and told her that I would take good care of it for her. She liked that idea. She was finally able to shut her car door.

COSTCO STOP

Our first stop was Costco. Cindy and I waited in the car while Paul went inside to pick up a few things. We listened to some music & took some photos while waiting. This was the biggest smile that I could get from Cindy.

CAR WASH & AIR IN TIRE TIME

The next stop was the car wash and putting air in the tires. Paul may look a little crazy at times while trying to entertain Cindy, but he does such a great job at putting a smile on Cindy's face. We are blessed to have Paul be one of Cindy's amazing caregivers.

DINNER TIME
We picked up some food and headed home.

Cindy got right into bed when we returned home. Paul took some dinner to Cindy's room for her to eat. Cindy wouldn't eat it herself. Paul helped feed her, so that she would eat.

GAME TIME with PAUL
After some resting, Cindy came out to sit on the couch with Paul to watch some TV. She didn't know what was in store for her, when she sat next to Paul to watch TV. The BYU / Utah rivalry college game was on. Cindy got to watch the game and listen to Paul scream & cheer at the TV. I'm pretty sure Cindy thought Paul was a little crazy for screaming and cheering at the TV so loud. Cindy would walk to her room and back to the couch throughout the game.

BED TIME

It was time for bed time! Cindy received her PM medication and she laid in bed while listening to meditation music to help her drift off to sleep.

This may not seem like a busy day, but it was a busy day, for Cindy, who has Frontotemporal Dementia.

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!

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!