Cindy's Life Updates with Frontotemporal Dementia: FTD Signs

The Garbage Can Obsession / Repetitive Phase

September 18, 2017

I have heard stories from different people about their loved ones with Frontotemporal Dementia who have some kind of an obsession or repetitive behavior. Something they do over and over again, even if the behavior does not make any sense. I have, also, experienced first hand watching my mom have her own repetitive behaviors and obsessions.

Below are the definitions for obsession and repetitive. I would classify my mom's behavior that I am going to tell you about as an obsession and repetitive.

Obsession Definition -

- the state of being obsessed with someone or something.

- an idea or thought that continually preoccupies or intrudes on a person's mind.

Repetitive Definition -

- containing or characterized by repetition, especially when unnecessary or tiresome.

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My mom had a BIG garbage can obsession. This phase in her life seemed to last for a few years. This is probably one of the biggest obsessions she had every week.

My mom's routine was like this:

1. Every garbage day she would wake up and make sure to take the garbage cans out to the road. If any of her neighbors put out their garbage cans the night before garbage day, she could not understand why anyone would do this.

2. As soon as the garbage man picked up the garbage, my mom would make sure that she brought in the garbage can right away. If people didn't take their garbage cans in right away, she thought they were crazy and she couldn't understand why people didn't take their garbage cans in right away, like she would do.

3. My mom started washing her garbage can out with her hose and water. She thought the garbage can smelled really bad and she thought washing it with water would help. She would take her garbage can onto the grass and use the hose to rinse out her garbage can, every time she brought in her garbage can. My mom added in this stage of the garbage can phase a few years after her original garbage can obsession started.

4. There were times that my mom would leave messages on the garbage can for the garbage man. The messages didn't make much sense, but my mom would feel good about her messages. My mom would write on a paper towel with a black marker and tape the paper towel to the garbage can. Below is one of the messages she left for the garbage man. My mom thought the garbage can was so full that the garbage man needed to dump the garbage can 3 different times to get all of her garbage out of her garbage can.

5. If my mom was out and about with me, my mom would want me to take her to her home, just so she could put her garbage can away.

6. My mom would laugh at the garbage cans that would fall over whether it was from the garbage man after he dumped the garbage can or the wind. There was a time that we were at a park and multiple garbage cans had tipped over. I believe they tipped over because it was very windy that day. My mom wanted to pick up all the garbage cans. I, literally, drove her to each garbage can (there were a bunch) so she could pick the garbage cans up, that had fallen over.

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During this time in my mom's life. . . . .I never put her down or asked her why she would do these things. I just went a long with her. I entered into her world and stayed there with her during this time. There was nothing I could say or do that would change her behavior. She couldn't understand my explaining, even if I tried. This behavior kept her mind busy and gave her something to do. Something that she enjoyed doing, and it didn't hurt anything or anyone with her doing this.

The repetitive behavior made me think to myself.....

WHY

and the answer was because this was our NEW normal with Frontotemporal Dementia. This is normal for someone with Frontotemporal Dementia.

This is the advice that I would give myself, if I could give myself advice, back during the garbage can obsession/repetitive phase. . . .

The repetitive behavior and obsessions will test your patience. This is definitely a test in patience. FTD will give you the ultimate repetitive behavior and obsessions test. Learn to be patient and to let things go. Remember you are not alone! This won't last forever! Stay strong! You can do this! :)

My mom did other repetitive behaviors then just the garbage can, also. Another popular thing my mom was obsessed with was turning on and off her outside lights. I'll have to write a story about that repetitive behavior sometime.

This is our garbage can story!

What repetitive behavior or obsessions have you seen your loved one have?

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.

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?