Cindy's Life Updates with Frontotemporal Dementia: 2014

Happy Holidays & Have A Happy New Year

December 27, 2014

Happy Holidays from us to you!

We hope your holidays were fantastic and you enjoyed time together with family and friends.

My mom had a great Christmas. We were invited over to Nate and Emily's home for a family party this year on Christmas Eve. We had a pizza party with extra snacks and treats. We enjoyed each others company, sharing old memories and reminiscing in those memories, kid's opening presents, and just being together as a family with love.

The grandkids are all growing up so fast! Sammy just turned 10 last month. The kids all had fun together playing.

My mom enjoyed receiving Christmas cards in the mail this month & I helped her write on cards to send out. My mom received a few presents and she enjoyed receiving those!

My mom also enjoyed seeing all of the Christmas lights and decorations on the homes in neighborhoods. She loved seeing the lights & decorations on our drives.

Thank you to everyone for making my mom's December a happy one!

Blessings and Love to you for a Happy & Healthy 2015!

December Starts Off with a Cough

December 17, 2014

December started off with a bad cough for my mom. She got really sick and was even throwing up. My mom actually let me help bathe her at this time, which was amazing.

Paul and I thought it was best that she come stay with us so we could take care of her & keep an eye on her. My mom stayed with us for about 2 weeks.

I'm so thankful that she was able to get better before Christmas!

My mom even felt so good after 2 weeks that she asked if she could go home. We let my mom go home. She is back home and we are back at our old routine again. The routine keeps us busy, and it does seem to work for now.

We are so thankful for our many blessings this time of year & always! May you be blessed with blessings always, as well!

We Made It!

November 24, 2014

It was around this time a year ago, when Paul and I drove my mom to the emergency room at the hospital in the middle of the night. Everything started to come to light that night of what had been going on with my mom for the last several years & especially that year.

This last year has been a big process filled with stress and some sleepless nights, but looking back a year ago.... life is much easier this year.

The holidays this year are easier and more stress-free. We have our answers. There are no questions. No continuing doctor appointments. No continuing testings. No wondering what will happen next. We have a routine down. It works out pretty good. My mom is happy with the routine.

My mom's update & for my records -

- Paul bought my mom some black long women socks to keep her feet and legs warm. My mom has just been wearing ankle socks and has a very hard time changing her socks & realizing that the socks need to be changed out. We have her feet prepared for the winter!

- Nate took my mom over to his place to have dinner with his family this week. They had a nice dinner and played games on the Wii. My mom told me they played bowling, biking, and other games. She mentioned that Nate always wins at bowling and she continues to say that. Sammy had a birthday on the 20th and turned 10 years old this year.

- Jon invited my mom to a movie with his kids on Thanksgiving. Paul and I drove her up to Centerville and watched Big Hero 6 with them.

- My mom has been enjoying watching the Canadian Geese at the Taylorsville Park by her house and listening to her music while watching them. I walk Lucky around the park while she listens to her music and she enjoys the beauty & I do as well.

- My mom's favorite things right now include:

- watching for new Christmas lights or decorations to be put up at houses
- she loves seeing police cars and firetrucks with their lights on. She will even ask me to go drive by them to see what's going on even if I'm not going that way.
- she loves feeding Tiger his cat treats
- she loves waving goodbye and blowing kisses to me out her kitchen windows while I'm in the car before Paul and I back out of the driveway to drive away every night.
- she loves watching these tv shows during the day: Kelly & Michael, I Dream of Jeanie, Rachael Ray, Judge Judy, & Magnum PI.
- she loves her daily movie time at my house (she is lucky if she fits 3 in a day)
- she loves to check for her mail & if she doesn't get to it during the day, she will do it when we drop her off at night.
- she is very focused on putting her garbage cans out and bringing them in right when the garbage man empties the garbage cans ( she doesn't understand why others don't stay on top of their garbage cans the same way)
- it is a must that she leaves on certain lights before she leaves her house. If she has forgotten this or left earlier in the day so she didn't do that, she will ask me if we can stop at her house to turn on the lights.

The things my mom has a hard time with :

- showers
- distractions
- missing her movies
- she gets frustrated when she doesn't understand something which can be at different times of the day ( food sometimes can help this and boost this up so she has a drive)
- attention span is low
- washing clothes and changing her clothes
- realizing what type of clothes to wear for certain types of weather
- my mom stopped doing her watering and yard work in the summer. She was very obsessive with her yard work and she let this obsession go and didn't care about it anymore.
- has a hard time with any personal care
- money management
- long conversations
- texting
- answering the phone
- of course this list can & does go on and on.......

A Penguin Experience This Week

November 21, 2014

Every week I have something new that is fun and entertaining that happens with my mom. The experiences make me smile and laugh to myself. I always want to write them down because I always forget them, because new experiences happen again and there are so many stories I could tell.

I was driving my mom and I through a neighborhood 2 days ago and my mom told me "you almost hit a penguin".

When things like this are said, I always have to think to myself "did she just say what I think she said?". I said back to my mom as a question to her, "I did?" She said "yeah, you did. There was a penguin back there. "

A bird had flown in front of the car and this is what she was referring to.

As we kept talking....

We had seen bird droppings earlier all over a sidewalk and fence on a busy road. She is very into details and noticing things these days, so she of course noticed this as we were waiting for a red light to turn green.

My mom then told me it was probably the penguin that had made the mess on the sidewalk and fence, also.

I don't correct her anymore. I just listen to her. I don't want to make her feel less of a person just because of her disability that is messing with her language.

I have talked to her since then and I believe that she was thinking of a pigeon, but she was saying penguin and was totally saying that as if that was normal.

This is just an example of what I hear on a daily basis and how her words get mixed up and at times it can get really confusing at what she is saying.

I am thankful that she can still talk and have a conversation. I will take advantage of this time I have while I can still converse with her. I know some people with this disability can or will become mute. It may just be a matter of time. Who knows? I will just keep on being positive and thankful!

Caregiving & My Favorite Quotes

November 12, 2014

I often can't even put my thoughts into words as a caregiver. I have read some really inspiring blogs/ facebook pages and quotes lately that have stuck out to me and it becomes an "ah ha" moment inside of me or a "that is so me" feeling inside of me. I want to post some quotes that I want to be able to remember.

I want to be able to come back to this post and get boosted up when the going gets tough. These quotes will & do inspire me. These quotes are from fellow caregivers that understand me and I understand them . . . .

1.

I can honestly say that caregiving has been the richest experience of my life.

A young friend of mine called the caregiving journey a “Blesson”—and it truly is. I was blessed to have been able to care for those dearest to me, and to make a difference in their lives at the most critical times. I was blessed to learn just how capable I am and how much patience one can muster if there is love. The lessons, many of us know, just keep coming—we’re always learning something new. But the flip side of the richness, is frequently stress, great sadness, anger, loss and grief.

2.
I pray that I can be a glimpse of the mother to my children that mine has been to me and her grandchildren. When it's all said and done, what is it that brings us joy in life? The money, nice homes, beautiful cars, far away vacations...things? For me, the answer is simple. Enjoy every waking moment with those you love. Taking nothing or no one for granted. Try to make each day a "memory." Realizing that we will all travel this road again, but in a different way.

3.

As I have written many times, this woman was my hero, my confidant, my best friend. I will always cherish our memories together. I would just like to encourage each of you who has a loved one with dementia. Please, don't tell yourself that there's no use in visiting them because they won't remember. I have learned that the visits aren't so much for them, but for us. Try to remember the good times that you've shared and know that they aren't responsible for their words or actions. God bless each of you who give of your time and energy, but most of all, "yourself" as a caregiver.

4.

God Bless my precious mother and all those who are trapped in their world of dementia.

5.

May God bless each and everyone of you who is facing the same struggles as my family and I have. Only God has the answers to it all.

6.

I pray for families all over the world, that one day, there will be a cure for this dreaded disease, dementia. The thief that is stealing the very souls from the ones we love.

7.

My prayer has always been and will always be through this crazy "up and down" journey with my mother, is that I can serve HIM while serving her.

8.

Only God knows how much I love my mother. Only He can remind me of this love as I care for her. I pray for much needed strength and patience as I make my way down the stairs each morning.

9.

I know that I have enough love for my mother to care for her on a daily basis, I just hope I have enough strength!

A lot of the quotes that I posted come from the blog www.porkchopsandpianos.blogspot.com. I have enjoyed reading this blog that I recently found because I can relate to it. A daughter blogs about her journey with her mother and dementia.

Happy Halloween!

October 31, 2014

Happy Halloween from Cindy to you!

My mom had a fun Halloween surprise at the first part of October. She was surprised with a cemetery set up in her yard, spider webs on her railing, decorations on her door, and orange lights on her railing. My mom enjoyed seeing her decorations all month long.

She has tried to guess who could have possibly left this fun stuff in her yard and on her porch all month long. No one will confess to her. She will never know. It was sure fun to see how fun it was for her all month with these fun and exciting decorations.

My mom was able to see all of her kids & grand kids the week of Halloween or on Halloween. She had A LOT of fun with all of her kids & grand kids!

We hope you all had an exciting and spooky Halloween!

3 Month Doctor Visit Check Up

October 21, 2014

My mom had her 3 month check up visit at the doctor's last week. She has a new primary care doctor that she goes to now out at the new Draper hospital. My mom is liking this doctor, so far. Fingers are double crossed that it stays this way. :) This was her second time going to see this new doctor named Matthew Schellenburg.

The visit went well for my mom. She didn't mind the visit at all. We mentioned some concerns we had of my mom, while she sat their quietly. My mom told the doctor that she is doing fine and everything is good. The medicine is working. Our concern is her weight gain. We learned she has gained 60 pounds in a year. :(

My mom had some new blood work done. They have a nice little blood work office in the building to make it convenient.

The doctor also gave us a new prescription for my mom's osteoporosis that she has. I'm not sure if people know she has osteoporosis, but she does. She had a bone density test when she was going to doctor appointments by herself. She was recommended to take calcium vitamins with vitamin D back then. She is still recommended to take Calcium and Vitamin D along with a new prescription pill for her osteoporosis.

The blood test results have come in and everything was abnormal on the test. I know her blood sugar, cholesterol, and thyroid are all abnormal. There might be something else that I can't remember. We are going to see the doctor again on Monday to get a game plan on what to do for her abnormal test results.

We were also told that soon she may need 24 hr. care or supervision. We have been looking into a plan and options for her.

My mom is HAPPY and doing well considering everything that is going on.

Thank you for your prayers and kindness towards her. I love watching the kindness and tenderness people give her.

APPOINTMENT UPDATE:

We took my mom to the doctor's on October 27th. The biggest concern for the doctor on my mom is her triglycerides. The average triglyceride number on tests is anywhere up to 150. My mom's number is at 648. It is considered very high and she can be at risk for strokes and heart attacks. The doctor says there is only something you can do for long term on this which would be taking a pill and would possibly bring a long side effects. We are going to see how eating healthier for the next 3 months will help those numbers and we will go from there. Right now, my mom isn't doing any treatment for her triglycerides.

Her thyroid number was off a little bit so the doctor gave us a new prescription to adjust the thyroid pill.

My mom still said at the doctor's that she is fine and she doesn't want to take anymore pills.

Fishing Trip in Jackson Hole

October 03, 2014

Paul and I took my mom out fishing while on our vacation in Jackson Hole this summer. We fished at the Jackson Dam. We bought a 2 day fishing license.

My mom used all of her skills from when she was young, fishing with her dad. We didn't need to show her what to do. She already knew. She threw out her line really far and had fun reeling in her line. It was fun to watch her have fun fishing and enjoying the beauty that was surrounding us. She caught a few fish, but they got away before she could fully reel them in. It was windy and her line would snag a lot. We would help her unsnag the line.

This was one of our fun activities we were able to do together while away.

I think the pictures says it all! No other words are really needed!

Quotes

Two Mothers Remembered - A Poem

September 30, 2014

All is going well. My mom is still happy. I don't really have any other words for today, but this poem will sum up my words for me.

It Is What It Is

September 12, 2014

I feel inspired today to share with you a short video that has been recommended to us to share with our family and friends at our FTD support group.

This video shares the life of 4 different families that are living with Frontotemporal Dementia. This is just a short example of what FTD does.

Please watch! I would love to spread the awareness of Frontotemporal Dementia! Everyone knows the words dementia and alzheimers, but they do not know the extent of frontotemporal dementia. It is so much more then just losing memory or forgetting things.

Please help me spread the word about Frontotemporal Dementia and share with the share options below!

Thank you for your support!

Nails in Our Path

September 11, 2014

Sometimes in life you will get to a point where you feel like you are getting nailed by every obstacle there is laying in front of you. You will feel like there is one thing after another being thrown in front of you.

Never give up. That is the growing and learning process to make you stronger. I remember times in my life growing up. My high school years specifically. I remember just thinking I had to much to handle and I didn't understand why. Why were these things lying in front of me and being an obstacle in my path? I see my path so much clearer now and know that those experiences taught me so much and also taught me to be a stronger person. I could never do what I do now without those experiences.

A few days or week ago, I had noticed that a back tire had been getting low on my mom's car. I had been so busy and Paul had been so busy so by the time I'd see Paul I would forget to mention anything about the tire. Days had passed, and I had driven the car all over, and even on the freeway several times.

Paul was outside yesterday with his brother and they noticed a nail in the tire. I finally thought to myself "no wonder, why the tire had been so low and was still low".

There will be nails in our path of life that will slow us down. We will go right through the nails because we won't see the nails approaching and they may get stuck to us for awhile, but eventually we will repair the problem and continue on our way! We must never let the nails slow us down or stop!

Paul was nice to fix the tire today and it did not slow us down one bit! I must say that I am so grateful that we were watched over while driving so much and the nail still held some air in the tire! Blessings do happen!

Thank you, Paul for all of your help!

Talented Writer Award Goes To Cindy

September 07, 2014

One of my mom's special gifts and talents has always been to express herself in beautiful writing. She wrote cards to people like no one else would or could. I'm sure anyone and everyone who knows her closely has received a card, letter, or e-mail and knows what I am talking about. She loved to write and knew how to, creatively, letting you know that she cared, was thankful, and loved you.

I find cards and notes that I have from her and they make me smile. No one else knows how to write quite like her.

I believe my mom was able to write this way up until a year ago or so. Slowly, her mind has slipped away.

I helped my mom write a letter and card to her friend last week.

I had to help get the card and paper out & encourage her to write. I helped my mom and told my mom what to write. I felt like it was, as if, I was writing the letter, and it definitely was not her writing it in her creative way. That made me sad.

When she was finished writing what I told her to write, she would look at me when she was done, and wait for me to tell her the next sentence to write.

It really opens up my eyes, when I see someone who's talent was to write and they don't even know how to END a letter or card anymore. She just wrote word for word what I told her to. That moment, I just wished that I could go back in time, into her head, and help her write word for word what she would write herself. She did put a squiggly line under her name herself. She looked up at me, smiled, and shrugged her shoulders about her new signature. She also drew a heart and smiled about that.

I just smiled after though and knew it was great for her to write and she felt good about herself that she wrote & sent a letter to her friend.

This experience in my life has opened up my eyes. It makes me more thankful and more humble for the little things. I think I have always been thankful, but I feel more thankful than ever before! I am thankful to have this experience with my mom. She is teaching me now, in this moment, more heart felt lessons now in life, that I will forever be grateful for.

I am thankful, at this moment, that she is still able to pick up a pen and write.

She may not be able to pick up a pen and write a letter herself. She may not be able to spell some words and might ask me how to spell things. She may not be able to send a text or e-mail because it is to overwhelming or she doesn't have internet service at home. She may not be able to come up with words. She may not know some words anymore and only knows how to describe them in a funny simple way, without knowing the actual name of the word. ( For example: a nail is a long metal thing to her.

It is all about the SIMPLE THINGS in life!

I am thankful for the SIMPLE positive THINGS in our life right now!

Fun in the Car - A Random Photography Day

August 30, 2014

Today we went for a spin in Grandpa Stewart's red Mirage car.

My mom had her camera packed in her purse and needed a reminder to pull her camera out. I told her a few days ago that she should take her camera with her to take pictures, but we hadn't gotten around to taking pictures.

I told her today to whip that camera out and to become a photographer. She had a lot of fun as the photographer.

Here are some pictures of our drive to the store to buy bird seed for the birds at my mom's house (she LOVES feeding the birds), and driving over to my house to watch some movies.

Yes, Lucky was with us! He was hot. My mom and Lucky stayed in the car, while I ran into the store. My mom wanted to take the bird seed to her home right away to feed the birds. We rushed the bird food home and that made my mom happy.

On the way to my house, we saw 6 motorcycle cops and a different variety of police vehicles in the driving range at the DMV. I pulled over so my mom could take some pictures. She thought this was cool to see.

We made it a fun traveling day in the car and as you can see, my mom still has her photography skills! ;)

We are living it up and we are hoping you are too! Hugs and Love to you!

The Chosen One

August 28, 2014

I saw this poem and thought this was definitely written for me.

I won't lie. Sometimes I have wondered "why, me?". Why am I the chosen one? Why am I the one with so much weight to bear? I haven't thought these things in a complaining manner. I have just wondered and pondered about it.

I have had thoughts & answers come to me that it is because no one can do it quite like I do. It is a talent that I have. One that I have been blessed with. Maybe a calling I had when coming to this earth.

This poem lifts me up. I feel carried. I thank everyone for the prayers, the calls, messages, the simple helping hand, and any simple help. I could never do this alone. It is a daunting task that is never ending. I feel the love and prayers and it is what keeps me going on to the next day, with a smile on my face.

My mom has always been there for me & I want to be there, the best that I can, for her at the time she needs my help the most.

I have prayed, cried, begged, and needed some kind of an answer the last few months. I strongly had this answer come to me, that I hold on to, and will continue to.

Tips & Tricks

Enter Into Their World

August 15, 2014

One thing I have learned is the best way to connect with my mom is to ENTER into HER WORLD. I don't stay in my world when I am with her.

Our worlds are two separate worlds.

My world is to complicated for her.

Her world is simplified in her mind, fun, silly, and care free. A TV and movie world. A world about the current weather situation. All about her cat, Tiger world. All about her awesome neighbor, Bob world. All about what her neighbors are doing world.

I realized she will never be able to enter my world again. She is no longer the person that can enter my complicated world. I am able to enter her world and I will continue to do that because that is the best way to connect with her.

My advice to anyone is if you want to connect with my mom or others in this situation... then enter into their world. I promise you that you will have fun and laugh!

Jon entered her world and sent her this picture in a text because I took the first picture above of our mom & weather for Jon to see. Jon sent our mom this text back and our mom loved this picture and sat there laughing and laughing. It made her smile and laugh.

This is a great example of entering into her world.

My positive note of the day and lesson from yesterday is to.......

ALWAYS LOOK UP ⇑ & the STORMS WILL ALWAYS PASS BY

and in this case the storm passed by VERY QUICKLY, as Jon's picture was taken the same day.