Caregiving

Our Evening Drive & Sundowning + A Video

November 10, 2017



There is something about dementia and darkness. Darkness changes my mom's mood. She becomes quiet and doesn't talk or laugh as much, when darkness arrives. My mom doesn't like it when the evening approaches and there becomes darkness. Darkness makes sundowning real for us.

 Sundowning Definition from Healthline.com -

 "Sundowning is a symptom of Alzheimer’s disease and other forms of dementia. It’s also known as “late-day confusion.” If someone you care for has dementia, their confusion and agitation may get worse in the late afternoon and evening. In comparison, their symptoms may be less pronounced earlier in the day."

 I had the opportunity to drive my mom around in the evening time, recently. I had a few errands to do and we had a party awaiting us. I thought, "what the heck, I'll bring my mom a long for the errands, and to party." I know those of you that know about FTD, are laughing right now, when you think of FTD and a party. Trust me, I was feeling very brave this day. 

 We made it to the party. We were there long enough for my mom to eat some dessert, go to the bathroom (I helped her in the bathroom), and leave. We might have been there 10 minutes, and then my mom wanted to get home for her bedtime. She goes to bed around 7-7:30PM lately. I'm so thankful for the people, that know about my mom, and how understanding they are with our FTD life.

Below are the subjects that caught my attention during our drive and that you'll see in the video I recorded. There are times when my mom says stuff unexpectedly and I'm not quite sure what to respond back. Like at the beginning she says she thought she saw golfers, but she didn't see them. Also, the time where a business shut down and moved locations. She was saying they tore it down, when that wasn't the case. The business just moved.



This is the first time that I recorded our drive during the evening time. This is just to show you how my mom reacts to the darkness approaching.

 If anyone has some suggestions, that are nice, about the seatbelt issue we keep having, please let me know!  :0)  You can find the seatbelt issue in the video.

Please subscribe to us here or on YouTube to see our upcoming videos. The next video I am going to share with you is something we contemplated if we should share or not. We feel as if we should share it, in it's entirety, with no edits, no bleeps, to show the real honest truth of Frontotemporal Dementia. Please keep a look out for it next week. (This video is still coming soon. This upcoming video got postponed due to Tiger passing away.)

Thank you for your support!

Caregiving

I Miss My Mom - Anticipatory Grief

November 06, 2017




The honest and raw truth is.....

I miss my mom.

You may see a smile on my face. You may see me laughing, but the honest truth is -

I miss my mom.

I have been having anticipatory grief for awhile lately. It's the strangest feeling. I feel guilty for feeling this kind of grief. I know that people are like "be grateful your mom is still here", but in all honesty. . .  my mom, that I once knew and grew up with, is gone. I will never have that mom back. Each passing day, I lose more and more of her.

 What is anticipatory grief? Here is what the definition is from VeryWell.com.

 "Anticipatory grief is a common grief reaction among people who are facing the eventual death of a loved one. Yet, while most people are familiar with the grief that occurs after a death (conventional grief), this kind of grief that occurs before a death is not often discussed. Because of this, some people find it socially unacceptable to express the deep grief and pain they are experiencing and receive the support they need."

 Anticipatory grief comes to me in waves or like a roller coaster. Up, down, and all around. Then I feel okay, for awhile, until the roller coaster starts up again.

I don't have a mom I can confide in.

I don't have a mom to go ask life questions to.

I don't have a mom that I can go have "real" girl time with.

I don't have a mom that can really & truly care about me.

I don't have a mom that can give me advice.

I have felt many times that I am being tortured, and I don't really know when the torturing is going to end. Even when the torturing ends. . . . . I know the torturing will continue for awhile longer. I question, when is this nightmare going to end? When can I start healing from this journey?

 I try to show you the positive side as much as I can, but I just want to show you a hint of what the negative side can look & feel like.

I want to end the stigma where we aren't suppose to express our true feelings and we are suppose to act like everything is fine! If you are feeling anticipatory grief, please share your feelings with someone. Don't hold it in to yourself. Share this post, and say "I feel this way, too", if you feel this way! I want to help make it where it is socially acceptable to share our grief and pain from anticipatory grief!

 Thank you for reading and letting me vent my thoughts out. Thank you for letting me share with you some of what goes on in a caregiver's mind.

 I am okay. I will be okay. This process is just hard.

Holiday Fun

Happy Halloween 2017 & Goodbye to October!

October 31, 2017


We hope you all have a HAPPY HALLOWEEN!

We have had some fun with my mom the whole month of October! It's amazing that today is the end of October already. Halloween has always been a fun month for us, while my mom has had FTD. October has treated us well this year again.

My mom has loved her Halloween decorations in her room. Her room has been decked out all month long. I did a Halloween door contest for the fun of it and the "Do Not Enter" door decoration is the WINNER! I'm pretty sure my mom wouldn't mind having this decoration up all year long! :) Her decorations will me coming down soon. Thank you to everyone who participated in voting!


My mom enjoyed the trunk or treat at assisted living this year. This event was held last week. She would go and grab handfuls of treats from every vehicle and she made everyone laugh. She loved seeing a dog dressed up as a pumpkin. She was able to have Nate and Sammy (her son and granddaughter) go a long with her to trunk or treat. The assisted living provided chili, corn bread muffins, candy, drinks, and treats. It was a fun time for everyone!



Paul carved a pumpkin to help support Frontotemporal Dementia. I haven't seen many pumpkins for FTD. I mostly see pumpkins for Alzheimer's. #EndFTD #ThinkFTD

Paul bought a monkey head from Walmart earlier this month. He wore the monkey head coming out of Walmart to make my mom smile & laugh. It worked. I decided to put the monkey head on one day too,  just to see my mom smile. My mom kept calling me a "weirdo". That's probably the first time that I have had my mom call me a "weirdo". I guess I will admit, that I was being a weirdo that day.




I challenge you all to do something for someone else .. .. .. ..

JUST TO SEE THEM SMILE!

It's a rewarding feeling to see someone smile because of something you have done.

We hope you have had a great October and we are looking forward to November!

Goodbye, October! We welcome, November, tomorrow!

P.S. to myself. I just want to note this for me to remember. I was showing my mom photos of her Halloween 2014. I thought for sure she would remember this Halloween. It was a fun Halloween and something she spoke about daily, that year. I was surprised when she told me, just the other day, that she doesn't remember that time. It shouldn't be a surprise to me to hear that, but it still is.

Mother Daughter Drive - Take 2

October 24, 2017


My mom's favorite activity is hands down (even though we have our hands up) . . . . .  is going for a drive. My mom has LOVED going on a drive during her whole bout with Frontotemporal Dementia.

She never knows where she's going.

 She never knows where she wants to go,

but she wants to go.

I hear the words "where are we going? multiple times during our drives sometimes. If I ask her where she wants to go. . . . . her answer will be "I don't know".

I'm glad that she has enjoyed going for drives and this is something she has looked forward to. I know there will come a day, where she won't be able to go for a drive anymore. I'm taking advantage of the moments we have now, and I'm grateful for these moments we have now.

I've been taking some video of us on our drives. This is the second mother daughter drive video, that I am sharing with you.

Please keep in mind, all dementia situations are different. Our situation may not be the same as yours or how you think it should be, but this is what works for us. There are reasons why I do what I do, and say what I say. I have learned what works and what doesn't work throughout our journey. My mom is happy and that is all that matters to me.

We dedicate this video to my brother, Jon. Jon is Cindy's son. We speak of him a lot in this video.

Thank you for watching and supporting us on our FTD Journey!

 You can also watch our popular, first mother daughter drive video, by going to this link below - 

Later Stages

Did You Miss It? - A Son's View On Frontotemporal Dementia

October 16, 2017


My brother wrote a post on Facebook about our journey with Frontotemporal Dementia. I wanted to make sure you all saw his post, too. I'm posting it here to keep record of it. Thank you, Jon, for writing this! Please like our Facebook page to see all of our posts. Thank you to everyone who is following our story. Our goal is to raise awareness about Frontotemporal Dementia and because you are reading this right now.... you are helping us in our goal to raise awareness about FTD! 


I never imagined being on the journey that we have been on with my mom over the years. She was diagnosed with Frontotemporal Dementia or FTD coming up on 4 years in November. We have learned a lot. This is different than the more common type of dementia that we all know as Alzheimer's. I'll never forget the doctor telling us kids there at his office with our mom at age 56 that this disease in his opinion is much more difficult to care for. He mentioned that her brain had shrunk to the size of an 80 year olds.

My wonderful sister Natalie and her husband Paul are amazing people. I can't thank them enough for what they do to care for our mother. They have put together a facebook page and blog to share and hopefully help anyone else out that comes across this disease. We have attended a support groups and with our own experiences we have learned a lot.

Here is a video showing some of the degeneration that she is going through as she didn't know how to sign her name. She was also confused at the date and didn't know her social security number for the first time. We have gone through some difficult times watching her mind literally fade away. We make the best attempt to be positive and enjoy every minute we can with her. We love it most when we can just laugh with her.

 Written By Jon (Cindy's Son)


Holiday Fun

Halloween Door Decoration Contest

October 09, 2017


My mom is ready for Halloween to come! Her room is all decked out in Halloween decorations. My mom has her window and 3 doors decorated for Halloween.

We thought it would be fun to have a Halloween Door Decoration Contest and have you help us decide which door is everyone's favorite!

Please help us! Which door do you like the best?  :)

 Door #1


Door #2


Door # 3


I like them all, but I would choose door #1. It fits well because, my mom doesn't like random people, going into her room. This is a decoration that she would probably like to have up all year long.

As you can see, these decorations brought a smile to my mom's face. She was excited when we said we will have a contest to see which door has the best decoration on it.

We will let you know which door is the winner! Thank you for helping us entertain my mom this October!

Let the contest begin! :)
We hope you have a spooky and scary Halloween!






P.S. These decorations on the doors were found at Walmart for $only 1.00 each!

Later Stages

Wearing Clothes Improperly with Dementia - Wearing A Shirt, For Pants

October 05, 2017



Our saying has been . . . .

 "You Never Know What My Mom Is Going To Say or Do Next".

 This same saying applied to her last night. This saying is so very true with dementia. Nothing can prepare you for the next surprises, because they are simply surprises.

 I wasn't going to go visit my mom last night. I thought that she was set up good for the day already, so I didn't need to visit her. I kept contemplating about it, and I finally felt as if I needed to go check on my mom. I needed to check that she had clean clothes. Paul was driving me over to go check on my mom. As we were driving there, my mom texted me her usual text, that she was going to sleep. I texted my mom back that we were headed to go see her. 

 We arrived at the assisted living place. As we walked inside to see my mom, she was waiting on the couch, by the front door. I started walking to her and she had the biggest smile. I looked down and immediately noticed that she was wearing a shirt for her pants, instead of pants.

We thought maybe she didn't have clean pants, so that's why she was wearing a shirt. We walked her to her room to help her get some pants on. I have to give credit to my mom. She was pretty clever on how she put the shirt on. She put her body through the top part of the shirt. She then tied the arms of the shirt around her. She was wearing it, and it looked like she was wearing a skirt. 

 My mom, did indeed, have clean pants. Her clothes had been washed, but they were folded up, and put into the hamper, by the assisted living place. My mom is use to looking in her dresser for her pants. Of course, with dementia, I can see why my mom wouldn't think to look in a hamper for her clean clothes, because in her mind, that is where dirty clothes are suppose to go.

 I took my mom into the bathroom and helped her put on some clean pants.

 I have seen others post, about their loved ones with dementia, wearing their clothes improperly. I knew this could happen. I'm surprised that we have now reached the stage of wearing clothes improperly. This is the first time this has happened with my mom.

 Nothing can prepare me for what my mom is going to say or do next. No matter what, I am always surprised and wondering what is going to happen next.

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