FTD Signs

Our New Sign of Dementia - Refusing Medication

August 18, 2017



I never thought this day would come, but it has. My mom has refused to take her medication on several occasions.

We have received several calls that my mom will not take her medication. This has happened in the morning and evening times, so it's not just a morning or evening problem. It's a problem anytime of the day. There has been times where I have to go to the memory care place, just to get my mom to take her medication.

We have been told that my mom doesn't like to take her medication in front of other people. The memory care place has found that taking her medication to her room privately, has helped for the morning pill time.

My mom has told me at times that she doesn't know why she has to take her medication. I know my mom refusing to take her medication is because of confusion and not understanding the purpose of her medication.

This has been a new problem that has come up in the last few months. It is a new sign of dementia for us and we are trying to figure out something to help the situation.


Music

My Mom is Bruno Mars Biggest Fan with Dementia

August 16, 2017



Growing up, my mom was a fan of Celine Dion, Lionel Richie, Martina McBride, Neil Diamond, Enya, and Kenny G. Just to name a few.

My mom is NOW the BIGGEST FAN of Bruno Mars! She has liked Bruno Mars since her dementia days. She loves to sing to him, dance, and just laugh at what the songs say. She always tells me when she hears a Bruno Mars song that he's a good singer.

It is true that I have driven my mom around the block, a few times, just so she can listen to Bruno Mars in the car, and so she can sing, and laugh. It is true that has made my mom's day more than a few times. My mom is always fascinated when I replay a certain song over and over for her. She'll light up and say "it's on again?",  as if it's a surprise that the song can play more than once in a row.

I know Bruno Mars has a lot of fans. Too many to count, but no matter what, my mom is going to be Bruno Mars' biggest fan ever with dementia!

Thank you, Bruno Mars for lighting up my mom's days when she hears your music!

My mom's favorite music for the last few years has been -

- The Best Day of My Life by American Authors (Hands down, her favorite song and life motto right now. It is also her and Jon's (my mom's son) song together. Jon introduced her to this song. She has loved it from that moment on.)

- Any Song of Bruno Mars

- Any Song of Adam Levine (She's not fully into Adam Levine anymore because I think she has forgotten who he is. )

Music lightens my mom right up! Music has been our lifesaver during this dementia time!



About Us

My Purpose - For Becoming Public, About My Mom

July 24, 2017



It’s true! 

My mom was diagnosed with Frontotemporal Dementia at the age of 56. She is now 60.


I have never spoken publicly about this and I have only spoken to a select few about what I have been going through for the last 4 years.


I keep having this feeling that I need to share my mom's story to spread awareness and no matter what I do to try to get rid of that feeling, it keeps coming back to me & won't leave me alone.

I'm stepping out of my comfort zone and I'm becoming a voice for my mom. Please come read our story and please help me spread awareness on Frontotemporal Dementia. I would appreciate your support so much! Thank you! Thank you! 

I'm excited because my brother will be helping with some blog posts and his family will be starring in upcoming YouTube videos, that I will share. This will give you a chance to see two different interactions with my mom and how she is with each of our families, separately. You will be able to see my mom interact with her grandchildren and you'll see how young they are to have a younger grandma, who has been diagnosed with dementia.

Thank you to everyone who has been our supporters, so far! It means so much to us!


⭐️ Blog - http://ftdjourney.blogspot.com/

⭐️ Watch Our First TWO FTD Videos That Have Been Released (There are many more to come) -

https://www.youtube.com/watch?v=VaykP5M4aDc

https://www.youtube.com/watch?v=P8kBnG3s8xw


P.S. Please be patient with me. I had a stroke a year ago and because  of that, sometimes, I'm kind of slow, but I have so much to share.





The Beginning Stages

My Mom's Painting

July 24, 2017


It's amazing how the brain works.

I remember when my mom was younger and she would go to painting classes. She would come home with new projects she had completed. The painting projects would be hung on the wall. I remember that she also once did stencils around the top of my walls in my room and helped me decorate my room in cats. I was a young girl in elementary school in these days.


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This is a cat painting above that my mom painted  just a little over a year before we started to realize something was really wrong with my mom. Just a few months after that, she was diagnosed with Frontotemporal Dementia.

My mom's sister would buy my mom paint by number paintings to give my mom an activity to do at her home. My mom loved painting, but hadn't painted for quite awhile. 

It's amazing to me how she was able to do this painting just barely over a year before she was diagnosed. I remember her only complaint about her painting activity was that it was hard to see the numbers and lines.

It is so cute that my mom dedicated the cat painting to her cat, Tiger. She wrote this on the back of her painting.

My mom had another lighthouse painting that her sister gave to her. It was in line to do next after this cat painting. My mom loved lighthouses. My mom started this painting, but never completed it.


Many, many thanks to my mom's 2 sisters for all they have done for my mom in her life time! They have been amazing to her! My mom has been blessed with the best sisters!

Later Stages

Watching TV & The Remote

July 12, 2017



It just dawned on me this weekend. My mom can no longer turn the tv on and use the remote by herself. This task has become to hard for her.

My mom has been struggling on how to work the remote since she moved into assisted living. It was an eye opener when she was having a hard time at first to use the remote.

My mom has loved to watch TV and that has been her daily activity for the last few years while she has had frontotemporal dementia.

My mom is still able to watch TV, on the community TV, in assisted living. She loves to do that. She has a seat that she is always on watching TV. They might as well label the couch as "Cindy's Couch".  She is in the same spot every time we go visit her.  :)

I have noticed that my mom is confused watching TV, also. She will repeat what people say on the TV and kind of question it like she doesn't know what they are saying. OR she will say the word the TV says and then she'll ask me if I have ever heard of that word before. It will be a simple word and it's surprising the words she does not know anymore. She loves to laugh at the TV, too. She'll laugh at almost anything and everything. She'll laugh so loud that it makes you laugh watching her laugh.

I'm thankful that my mom is still able to watch TV and that she enjoys it.

In life, it is the simple things that matter the most!

My mom reminds me of this everyday!

Written By:




FTD Signs

Our Early Signs of Frontotemporal Dementia

July 07, 2017





   The #1 question we get asked is -


What were the first signs that your mom had, before she was diagnosed with dementia?

We have people sometimes asking us this question because they are concerned their family member might have memory problems.

Here are just some of the warning signs that we had in the months before my mom was diagnosed with frontotemporal dementia.

This is just our experience and I know everyone's story is different.

Stalking
1. My mom was stalking me at work and at home. If I wouldn't reply back to my mom fast enough, she would come to my home, to get mad at me, because I didn't text her back. She would bang on the door, kick the door, and look in the window. It was to the point that I was feeling manipulated and it was giving me so much anxiety. I was to the point that I wanted to move out of state to get away from my mom because it was that bad.

Problems Reordering Prescriptions
2. My mom would drive up to my work and give me her prescription bottles. She would say she needed help to order the prescriptions because she couldn't figure out how to reorder her prescription. That is something she had always done for years and she all the sudden couldn't figure out how to reorder her medication over the phone.

Didn't Care About Others Anymore
3. She didn't care about anyone, but herself. She was unable to care about others. My mom would call a guy that mowed her lawn. He lived a few houses away from her. She would call him, while he was at school and work, and basically would tell him he needed to cut her lawn NOW. I remember thinking it was so strange that she was calling him at those times.

Wore The Same Clothes Every Day
4. My mom was wearing the same clothes time and time again. Every time I saw her she had the same clothes on.

Smelly Problems
5. My mom smelled very bad. She stopped showering. I remember a time when I could smell something and I kept looking around trying to figure out what the smell was and where it was coming from. I thought it was manure out somewhere because we were outside. When I finally figured out it was my mom, I could not believe it.

Stopped Doing Things She Loved
6. My mom loved jewelry and wore jewelry all the time. She stopped wearing rings and necklaces. She use to wear rings and necklaces daily. She was only able to keep wearing the same earrings every day. She still wears her earrings daily to this day and that is something she has held on to doing. If they stop doing something they love, it could be a sign.

Needed Constant Help With Everything
7. My mom would call me or family members with questions on EVERYTHING. It was like she couldn't do anything herself. A lot of people thought she was just wanting attention. She would call someone to ask about cable, internet, car insurance, etc., etc.

Stopped Combing Hair
8. My mom stopped combing her hair and left her hair in the same ponytail 24/7. Her hair started to matt up.

Excessive Driving For No Reason
9. My mom would drive on the highway 25 miles daily back and forth with no where to go. She was just driving for the fun of it. This is something she had never done before.

Showers and Anxiety
10. This was the very first sign before she stopped showering. My mom would ask me to stay at her home while she showered. I would be about to leave her home and she would beg me to stay and wait while she had a shower. I'm not quite sure why this was, or if it was because of anxiety. This always drove me nuts because I just couldn't comprehend why she needed me to be there, to wait for her to have a shower.

Anxiety and Panic Attacks
11.
My mom had tons of anxiety and panic attacks. My mom had so many panic attacks and would ask for someone to drive her to the hospital. She would call an ambulance if no one would take her to the hospital. The hospital would always say she was fine. My mom became a regular at the hospital and they probably thought "oh, it's just Cindy again". It was like crying wolf.

Wrote Notes On Everything
12. My mom wrote notes on everything. I always thought this was something she just did, but it was like notes written on everything to help her remember.

Insomnia
13. My mom couldn't sleep. Insomnia became a big problem for her. The prescription medication that helped with this stopped working for her. She had to switch up her medication so she could finally sleep again at night.

Direction Problems
14. My mom would ask me where I was and I'd tell her my location. She couldn't find the address. She asked me for the directions, but she would end up in a different place, no where close to the address.

Make-Up
15. My mom stopped wearing make-up. She was able to only put on blush for a few years. She now does not put any make-up on.

Secrets No More
16. I would confide in my mom as if she was still my "normal mom". My mom would go and tell everyone the personal things that I would tell her.

Hoarding
17. My mom would go to the store and fill her shopping cart full of stuff she didn't even need. She would always take bags of items home and just let them sit there. Most of the stuff she bought, she wouldn't use. Most of her stuff still had price tags on them. It was like this was her fun activity to do for the fun of it. Her house was often messy because of this. She would have several items of one thing and not use any of them. For example she had tons of purses, candles, blankets, picture frames, stuffed animals, lotions, and the list goes on.

Tantrums
18. If my mom wanted something done, she wanted it done NOW. She would blow up at simple things, and I think it's because her mind was making her frustrated. I didn't understand this at the time.

Fast Food
19. My mom could not prepare food for herself. I looked at my mom's bank statement once she was diagnosed with dementia, and noticed she was going out to eat for every meal. She got fast food sometimes up to 3 times a day everyday.

Could Not Plan Anything
20. For holidays or special occasions, my mom could not plan anything for the occasions.  My brother's and I would have to do all the planning for get-togethers. My mom could not plan or cook for these get-togethers. I always didn't know why she couldn't plan anything, but it became our normal. We were just use to the fact that my mom couldn't plan anything.

Overdraft
21. My mom was over using her bank card. I can't remember the exact amount, but my mom had quite a bit of an overdraft that I had to help her pay, to catch up with the overdraft. I didn't realize this was a problem until right when she was diagnosed. I hear that many people with frontotemporal dementia can spend a lot and get very in debt. We were lucky that it wasn't worse than it was.

Managing Doses of Medication
22. My mom struggled with knowing what medicine to take and how much of the medicine to take. We had no idea this was going on with her until she took to much medicine & we had to take her to the hospital.

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I would go to my mom's doctor appointments and would tell the doctor how I felt about my mom. About her not showering (and my mom would tell the doctor she showered) and etc. I was just told my mom was toxic, a narcissist, and psychotic. I was told that I was training her to be that way. If you have a doctor that is not giving you answers that you feel are right, try to go to another doctor. Don't give up! Everything made SO MUCH more sense after my mom was diagnosed with frontotemporal dementia.

I write these signs of dementia down, not to put my mom down, or to rat her out. I want to at least help some people learn the warning signs. I want you to find out the warning signs before I ever did. I literally had no idea what was going on with my mom and I think that made it worse for me to not know the warning signs. I think my mom would want me to help others out, by helping her, get her story out there.

If you see a lot of the same symptoms in your loved one....

If something just doesn't seem right or add up.....

I would recommend you to make a doctor's visit. 

Make a list of the symptoms. Tell the doctor your concerns. The neurologist is the doctor that helped us find out my mom's answers.

Read my very first post on this blog. This is our story of what happened to my mom and how we finally were able to get my mom the proper diagnosis and help.


What were the early symptoms you experienced with your loved one?


The Beginning Stages

7 Tips on How to Take Car Keys Away From Your Loved One with Dementia

June 26, 2017



The biggest and hardest question is ....

when should you take away car keys from your parents?

Your parents are the ones that most likely helped you gain driving privileges in your teen years. It all seems so wrong when later in life you are the one to have to decide if your parents should continue to drive or not.

Answer this.

Would you let your young child drive?

Most likely your answer is no. In my opinion, a parent with dementia is functioning on a child's level. They don't have common sense and sometimes their brains just don't work fast enough to be able to drive safely.

Our Story

October 2013

We had a sign a few months before taking my mom's car keys away. My mom was in a car accident. She changed lanes without looking and hit into the side of a US postal worker's truck. The accident mostly damaged my mom's car. My mom's car had to be towed because one of the tires was messed up. My mom got her tire fixed by a tire shop, paid a ticket, and had to pay money to the US postal. She continued to drive after this because we didn't realize she had dementia at the time. My mom had never been in a car accident that was her fault until this time.

December 2013 - Beginning of 2014

When we were trying to figure out what was going on with my mom at the first, a neurologist asked me if I wanted her to contact the DMV and relinquish my mom's driving privileges. I agreed and told her "yes, please". This was the first step for us to take away my mom's keys. We still didn't know her diagnosis at the time. My mom still would drive after her driver's license was canceled. My mom was in denial. She thought she was just fine. I will be forever grateful to this neurologist who stepped up and helped us out. I don't know what we would have done without her help.

We had to eventually take the car keys away from my mom. My mom was smart and had made several copies of her car keys prior to this. We had to continually take her keys away because she kept coming up with another set of keys. We even disconnected her car battery so her car wouldn't start. We even had to bring her car to my house, so there wasn't a car for her to drive anymore.

Beginning - Mid 2014

My older brother took my mom to the DMV to try to take a driving test so she could try to be able to drive again. My mom had such a hard time trying to figure out the touch screen for the test. My mom tried two times that day. She failed both tries. My mom went home with a driving booklet and knew she could try to take the test again another day. She never asked to take the test again or to drive again. She never opened up that driving booklet to look at it. The test was to hard for her and she knew it. My mom eventually got use to not driving. It took quite some time and she even seemed sad and mad about not being able to drive again at first.


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Tips on how to take car keys away

1. Get guidance from a doctor. Specifically ask the doctor for advice on driving with dementia. Ask the doctor if they feel like it's safe for your loved one to continue to drive. You may have to ask the doctor when your loved one isn't present. Sometimes we would have to have two people go to the doctor appointments so one could talk to the doctor privately and the other one was waiting with my mom in the waiting room or one would stay in the room with my mom while the other was outside the door speaking to the nurse or doctor by the nurse station.

2. Ask the doctor to cancel your loved one's driver license by having them send in a cancellation to the DMV.

3. Tell your loved one that they can continue to drive if they can pass a driver's license written and driving test.

4. Take the car keys away.

5. Disconnect the car's battery.

6. If all else fails, take the car away to someone else's home, and have it stored away from your loved one. This way they won't be tempted to drive.

7. Never leave your car keys or any type of car keys in your loved one's presence. Don't tempt your loved one.


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I know all of this is easier said than done. Trust me, this is one of the hardest trials we went through with my mom. It was a stressful time. Just realize that this is a stressful time, but you will get through it.

If I could go back in time, knowing what I know now, I would have taken my mom's keys away sooner. I would have stepped up and taken control from her. Unfortunately, when you are going through something like this, it's so hard, & I didn't know what to do at the time.



What are your stories with trying to take car keys away from someone with Dementia, Alzheimer's or older family members? Do you have any tips for others? Leave your tips in the comments below.

Have You Heard of Frontal Temporal Dementia Before?