Cindy's Life Updates with Frontotemporal Dementia

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!

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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.

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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.

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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.

Please help us get the word out about Frontotemporal Dementia, by clicking, below, under . . .Share This Story! Thank you! :)

Later Stages

I'm No Longer A Daughter In My Mom's Mind

February 13, 2019

My mom was sitting up to a table eating her dinner last month, one evening. We had just barely dropped her back off at memory care. I chatted a little bit with her friend that sits next to her during meal times.

I decided that I needed to let them eat, instead of talk to them. I started to walk away to my mom's room. As I started walking away, my mom's friend asked my mom "is that your daughter"? He asked her about two times. I was curious on what her answer would be, so I turned my head to see. My mom shook her head as to say "no".

A caregiver was helping another resident eat at the same table. She knew that I was my mom's daughter. She asked my mom "is that your daughter"? My mom shook her head again and said "no".

This may sound like a sad story, which in reality it is. I have been preparing myself for this recently, so it wasn't a complete shock.

I am just thankful that my mom thinks I'm a cool person to be with and I make her feel good when I'm with her.

A Daughter.

Now a Cool Person.

I may not be a daughter in the mind of my mom anymore, but I am someone that makes her feel good. I am thankful for that. My mom greets me with happiness every time that I see her. I am just thankful that she is still happy to see me & knows that I am someone that makes her feel special.

"Why do we close our eyes when we pray,

when we cry, when we kiss, when we dream;

because the most beautiful things in our life

are not seen but felt only by the heart.

- Unknown

Caregiving

What Is This?

January 15, 2019

What do you see in these photos?

I see . .

• a straw wrapper, that is now garbage

• keys

• a bill / mail

• a receipt

Can you imagine looking at these items and no longer knowing what these items are or what they are used for?

My mom has started to ask us more questions lately, and they are usually asking the question "what is this?".

We explain what these items are to my mom. She listens and maybe says "oh". The saddest part about this is. . . . . no matter how much we try to explain it to her, she can not retain the information.

A new day comes, and my mom will still ask the same question that she has asked before. "What is this?". Still having no idea what these same items above are.

This Dementia Journey has made me be thankful for the most littlest things that most may never think of. I am thankful that I know what these items are.

My mom will never know or remember again.

I'll keep remembering for her.

Holiday Fun

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!