Cindy's Life Updates with Frontotemporal Dementia: 2019

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.

I just wanted to give an update for those who are wondering how Cindy is.

Thank you for your love and support!

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.

Caregiving

A Small Act of Service - Thank You to Nurses!

August 23, 2019

A special thanks to all the nurses who go above and beyond for their patients....... that do things they don't have to do. Just a simple act of service can relieve something that's on a caregivers long "to do" list.

I was able to mark "cut Cindy's toe and finger nails" off my "to do" list, thanks to Cindy's nurse doing it for me.

A small act of service/ help, that can seem so small to others, can be so BIG to caregivers!
❤

Cindy's pampering and appointments are done for the week. We will continue to pamper her.

Thank you to all nurses and especially to Cindy's nurses she has had throughout her FTD journey. She's been lucky to have the best nurses!

Later Stages

The H Word

May 15, 2019

Happiness

Hope

Humility

I wish I was talking about these words, but those aren't the words that I am talking about today.

The H word that I am talking about is . . . .

Hospice.

Earlier this year, we were at a doctor appointment for my mom. We were at the appointment because we wanted help with my mom's medication and behavior. My mom ran out of the room at the doctor appointment. Paul chased after her, as I waited for the doctor. The doctor finally came into the room. It was just me and the doctor in the room. The appointment was coming to a close, and then the doctor mentioned to me, "Hospice". I wasn't prepared to hear this word on this day. I wasn't even thinking of hospice. It was further away from my mind than any word could possibly be. Mixed emotions went through my mind and body at this time.

After speaking with the doctor, I walked down the hallway, went down the elevator, and walked through another hallway to get out to the car that my mom & Paul were waiting in. I was in a daze & I kept thinking to myself, "keep it together, Natalie", "don't cry", "did I really just hear the H word?".

Hospice, really?

Another appointment came and went after that. Hospice wasn't really high on the doctor's radar this time.

"Phew", I thought. Even though I was confused.

I knew that I couldn't live in denial anymore. I had seen the changes creeping up with my mom. The slow decline, day by day. The H word was going to come whether I liked it or not.

My brother, Jon, got in touch with an amazing family friend nurse who knows home health care well. Jon reached out to her to ask if there was any help that she could give us. It came to find out that she worked for a hospice company. She came out and assessed my mom.

My mom did in fact qualify for hospice. Not just barely, but more than enough. The reasons were because of weight loss, only being able to speak 5 words in a sentence or less & just not being able to communicate her needs.

I have come to realize that this is a blessing in disguise. Cindy was in need of more help and better care.

2 weeks ago, we started the hospice journey. A nurse & bath aid visits us twice a week. We had a social worker and chaplain stop by the house. A new bed, wheel chair, and shower chair was delivered to us from help from hospice. We are receiving medication, briefs, wipes, gloves, and chucks pads that are going to be paid for. She will now have a doctor & nurse come to her, instead of us having to take her to the doctor & nurse.

We have turned the page & have started a new chapter with hospice in our life. I sit here and am completely grateful for the extra new care that Cindy is receiving. She is blessed beyond measures.

I have no idea what the futures holds. I just focus on the NOW because that is what keeps me together.

Cindy is doing as good as she can be. She is a trooper and stronger than she will ever know. Her body is working better than her mind is. Her most popular words that she says is "Yes", "No", and "Mmm Hmmm". She barely talks, but when she talks it brightens my day.

Many thanks to Lighten Home Health & Hospice, Jacque, and Ashley for their visits and care! They have been amazing!

Thank you for your love and support!

Later Stages

Big Changes Have Come

May 07, 2019

Moving Out Day

I have had so much to say. I just haven't been able to find the words to tell you. This year seems like many changes have come. I have mostly been wordless because of the changes that have come with Cindy this year.

Big changes happened last week!

Cindy MOVED OUT of Memory Care / Assisted Living.

She has moved home. She now lives with me and Paul.

Messages from people at Memory Care telling Cindy they'll miss her.

Cindy is doing quite well with the changes. She smiles, laughs, watches tv & movies, dances, sits outside, pets the cats, sleeps, eats, talks very seldom, watches airplanes, goes for car rides, and has visitors.

We are still getting use to the changes.

I wanted to give an update and let everyone know. . . . .

Cindy is home!

Thank you for your love and support!

Birthdays

Raw Emotions From A Son Who's Mom Has Frontotemporal Dementia

March 26, 2019

Raw emotions coming...

62 years old with many years of dementia behind her. I won't lie I miss my mom. She's still alive, but so much of her has disappeared. She was diagnosed at 56 with Frontotemporal Dementia, but we knew well before that things weren't right.

I'm very happy that we could celebrate another year of her life. I'm so grateful for her and all she's done for me. I'm glad we can still hold her and tell her we love her. I can't get enough of her smile and laughter.

I deeply miss the cheerleader she has been for me in my life. I can't just call and get advice from her. I can't joke about the dumb things I did growing up and tell her "you were right mom I should have listened to you". I saw the fight in her to be the amazing grandma I knew she wanted to be. Now it's hard to not feel like we are just people, with an unknown relationship, that come to say hi to her. She calls another elderly man in the nursing home her son.

I live everyday with gratitude and don't get me wrong I am grateful for every moment with my mom. Yesterday was one tough moment for me. I know my mom. She loves flowers! She loved them more than anyone I know. For her to reject them and tell me she didn't want to take them with her after dinner was super hard for me. It took a lot for me to hold back my tears in front of everyone. Looking back today is a different story.

Everyone do me a favor this week. Hug your mom. Tell her you love her. Call her and have a conversation with her. Laugh with her. Joke with her. I know my mom would have been into funny gif's and meme's. Send one... do it for me. Reminisce with her about the good and the bad. Ask her for her advice or recommendation. I didn't always see eye to eye with my mom but I sure do appreciate all that I learned from her.

Written By Cindy's Son, Jon.

3/25/19

More About FTD

Rare Disease Day - Frontotemporal Dementia

February 28, 2019

Today is Rare Disease Day! Would you have thought that Frontotemporal Dementia is a rare disease? I wouldn't have. A form of dementia on the rare disease list? Dementia is so common! No Way!

BUT

YES, Frontotemporal Dementia is a RARE DISEASE!

╔═════════════════════════════════════════════════════════╗

What is a Rare Disease?

A disease or disorder is defined as rare in Europe when it affects
fewer than 1 in 2000.

A disease or disorder is defined as rare in the USA when it affects

fewer than 200,000 Americans at any given time.

╚═════════════════════════════════════════════════════════╝

Why is Frontotemporal Dementia a Rare Disease, you might ask?

Here is why and learn more about FTD.

· FTD affects an estimated 60,000 Americans.
*Compare this to 5.7 million people living with Alzheimer's in the US.*

· Many in the medical community are still unfamiliar with FTD.

· It takes an average of 3.6 years before getting a diagnosis.

· The onset age ranges from 21-80 years old

· FTD is the most common form of dementia for people under 60.

· FTD is frequently misdiagnosed as Alzheimer's, depression, psychiatric disorders, Parkinson's Disease, or others.

· FTD represents an estimated 10%-20% of all dementia cases.

━━━━━━━━━━━━━━━━━━━━━━━━━━━━━━━━━━━━━━━━━━━━━━━━━━━━

This day and every day (to me) is to help raise awareness to this rare disease! My whole goal & purpose of this blog has been to raise awareness to Frontotemporal Dementia. I will always be a broken record, when it comes to this disease.