Cindy's Life Updates with Frontotemporal Dementia: Caregiving

A Small Act of Service - Thank You to Nurses!

August 23, 2019

A special thanks to all the nurses who go above and beyond for their patients....... that do things they don't have to do. Just a simple act of service can relieve something that's on a caregivers long "to do" list.

I was able to mark "cut Cindy's toe and finger nails" off my "to do" list, thanks to Cindy's nurse doing it for me.

A small act of service/ help, that can seem so small to others, can be so BIG to caregivers!
❤

Cindy's pampering and appointments are done for the week. We will continue to pamper her.

Thank you to all nurses and especially to Cindy's nurses she has had throughout her FTD journey. She's been lucky to have the best nurses!

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.

Activities

Our Busy Fun & Not So Fun Weekend with Cindy

July 30, 2018

We were able to spend the weekend with Cindy.

We did a lot of fun things and some not so fun things.

We started off the weekend, on Friday, with pampering Cindy with a shower, manicure, and pedicure! ;) This picture below is a reminder to me that. . . . .

A caregiver, in all honestly, needs as much help as they can get.

Thank you for your help this day, Paul.

The next activity up was dinner time! Cindy was all smiles. We were the only ones inside eating, and we felt like we reserved the place to ourselves. It was perfect!

It was car wash time, after dinner. We could barely see out our windows, so we took Cindy to a car wash we had never been to. It's a car wash place right next to where she lives called, Waterworks Express Car Wash. We were impressed. This was the only photo that I managed to get of our car wash activity. We were cleaning out the car & vacuuming, while Cindy was listening to her Bruno Mars music, and waiting patiently.

We went to visit Cindy on Saturday, and ended up going to a Taylorsville Emergency medical place. I'm glad we went there because it was not busy and the service was very fast, considering we were dealing with someone who has Dementia.

I felt like I was running up and down, around and around, getting a workout to help the nurse & doctor with my mom. I had to help my mom do everything and at times she seemed confused at what they were asking her to do. She continuously was trying to pull out the needles and she kept unhooking the monitoring equipment. I'm not sure the exact names of these items in the rooms.

My mom hated when the blood pressure cuff would tighten up on her arm. She looked like it hurt her when it did that. She hated getting her blood drawn and wanted to pull her arm away when the needle was inserted. She especially hated getting a catheter in her, and it took an Ativan to get her to cooperate. I think we can all agree and understand where Cindy was coming from with the catheter. Those are never fun to have to be inserted and to not know why, can only be frustrating. She kept wanting to pull her catheter out and take off the tape that attached the tube to her thigh.

We spent a hour there, and I felt mentally exhausted after leaving. Cindy was diagnosed with a urinary tract infection (the first, that we know of, since she's had Dementia) and she has a bed/pressure sore on her bottom. She is now on an antibiotic for a week, and we hope she'll be back to herself soon.

Her symptoms had been extra confusion, agitation, pacing around, more incontinence than usual, & darker urine.

She was a trooper. I felt bad watching all she had to go through, and her not understanding why she was having everything done to her.

We ended the night shoe shopping . . . . in Cindy's closet. My mom has been super repetitive at certain things since she has had dementia. She has always wanted to wear her same shoes. We finally were able to take her old shoes away, that were getting holes and wearing out. We found her slippers in her closet that she has not worn since they were given to her. She received them this last Christmas. She is loving wearing them around where she lives.

Shopping therapy is just what we needed to end the night. ;)

All will be well! We have been saved again by our laughing and smiling!

Change that frown to a smile!

Life is too short to wear too many frowns!

Caregiving

You WILL Get Through This! - Falling Apart & Getting Back Up -

July 09, 2018

My family and closest friends have seen me at my lowest points. They've seen me cry more times than I'd like to admit. I like to show a strong face, but the truth is behind the internet, I do cry, more than I'd like to.

I'm taking this story back into time. Back into the year 2014. This was during the weeks we were taking my mom to the neurologist, to figure out what had been going on with my mom, to see why she was acting so strange, & also learning the sad news.

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I was at work leaning over with my head down on top of my arms on the desk. I had tears streaming down my arms onto the desk below. Unfortunately, a few people at work got to see my tears. The tears seemed like they were because my heart felt broken into a million pieces. I was losing my mom and I really just could not comprehend it all. I never imagined that I would hear the words, "Your mom has Frontotemporal Dementia. There is no cure and it is eventually fatal."

You see, I am my mom's only daughter, so our bond was super close.

On this occasion at work, there was a friend that happened to see me at my worst. I was super sad at the news. He gave me one of the greatest speeches that has stuck with me. This is just the short version of our conversation.

He said. . ."Think back to ALL of your trials throughout your life".

"You made it through them, right?"

Me . . .Thinking for a bit.

"Yes, I did."

He said . . .

"I know it's super hard right now, but you will get through this. Just like you have gotten through all your other trials."

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I'm here to say, that at the time during this conversation, I couldn't really picture myself getting through this trial. I was devastated.

I'm here to say it has been 4 years since this moment in my life.

It has gotten easier for me to cope with, 4 years later. It has been hard, but I have gotten through this.

My friend was right. . . .

You WILL Get Through This!

Looking back, I'm so grateful for this conversation and the time that was put into this conversation.

I hope this message touches someone that needs to hear these words. I felt like I needed to share this story today and I felt compelled to share.

Remember

You WILL Get Through This!

Just like after a storm. . .
and the sun comes out & reappears.

Caregiving

Doing Things For My Mom, That She Once Did For Me

June 25, 2018

I heard the words, "how do I do this", blurted out of my mom's mouth.

I was busy putting away my mom's shower supplies, after she had showered, when I heard these words. I glanced over at my mom as she was holding up her hair elastic to her head.

I quickly stopped what I was doing, and told her she didn't need to worry about it, because I would help her.

Typically the inside of me would have stopped, felt shocked, & sad at the same time. These kind of questions my mom asks, shows me the progression of the Frontotemporal Dementia, she has. I have become accustomed to hearing stuff like this lately. On this day, it didn't phase me. Maybe, because I have been helping my mom with her hair for years, and I already know she needs help to put her hair up how she likes it.

Instead, I told my mom something similar to this.

I started combing my mom's hair and told my mom that she use to do my hair, like I was doing hers. She replied with a question "I did?".

I told my mom that, " I am now doing your hair, like you once did for me."

I always try to reassure her, that I will always be there to help her, so she feels comforted.

I have learned with Dementia, that I am blessed to be able to do the things for my mom, that she once did for me. I am now returning the favor.

This just shows that something, as easy as putting hair up in a ponytail, is HARD and IMPOSSIBLE for someone in the later stages of Dementia.

Caregiving

Thank You, Mom!

May 11, 2018

My mom has taught me so many things throughout my lifetime. More than she will ever know.

I feel like she has been teaching me the most meaningful lessons throughout the last few years, while she has had Dementia. For that, I will be forever grateful.

My mom has taught me . . . . . .

- Patience. Patience. Patience.

- Live in the present moment.

- How to be unstoppable in caring

- How to give of myself and give to others.

- Have fun.

- Don't be too serious.

- Smile!

- You CAN get through anything that is hard.

- Never give up.

- Love is all you really need.

I am a better person now, than I was before Dementia.

All because of you, Mom!

Thank you, Mom!

I would do this all over to learn these life lessons again. . . . Even though I would never want to go through this again.

I dedicate this beautiful song to my momma and to all the wonderful mommas out there!

You are all AMAZING!

This song reminded me of my mom!

Happy Mother's Day!

Song by

Stan Walker - Thank You.

Caregiving

My Top 10 Stress Relievers For Caregivers

May 01, 2018

Here are some of my top stress relievers that have helped me in stressful times during the last few years.

1. Meditation - YouTube videos

I found out about meditation and YouTube videos just a few months before my mom was diagnosed with FTD. I would say this has been a blessing for me to learn about meditation videos, and to be able to listen to them the last few years.

I have gotten into a habit where I listen to meditation videos while I go to sleep or I have a harder time falling asleep. It's such a habit that I have listened to meditation while falling asleep at home, on vacation, or in the hospital. This always helps me out and helps me to fall asleep easier and more peacefully. I love that I can just do this from my phone, and have access to it anywhere I go. This video below, is my current favorite one, and the one that I listen to every night.

2. Walk/Jog/Run/Exercise/Move Around -

I started walking, sometimes 2 times a day, with my dog. This helped me relieve so much stress that I had. Walking and seeing the beauty around me helped me forget about my worries.

I would even, at times, take my mom with me to the park. She'd sit in the car listening to her music with her headphones, while watching me walk around the track. This helped me de-stress. I was able to entertain my mom, while doing something that helped me, too.

My goal lately has been to just move around more than I have been.

My walk at the park. I had my mom get out of the car to take a picture with me in 2014.

3. Pets -

I have been lucky to be surrounded by pets that always have seemed to know when I needed their love. They have really been therapy for me. Petting an animal can help relieve stress and worries.

4. Journaling / Blogging -

I haven't been that great with journaling for quite some time. I have started to blog and document this FTD journey that we have been on. I feel like opening up and letting it all out has helped me out so much. Letting it out is therapeutic! Let it out!

5. Music -

Music is probably a given stress reliever for everyone. Listening to some upbeat music can always make you feel better. Turn on and turn up the music!

6. Positive Affirmations -

Positive affirmations help to boost me up and to keep me on the right path of thinking. This can really help out if you wake up and do this in the mornings. It's a great way to start your day out. I learned this from Tony Robbins. It doesn't hurt to have a hour of power in the mornings, too. Take time to focus on yourself.

Think to yourself positive affirmations like the ones below. Say positive affirmations inside your head over and over.

I Can Do This

I Am Strong

I Am Brave

I Am A Great Caregiver

7. Search For Support -

I'll admit that I was the one who thought I could do everything by myself. I didn't need anyone or any support. The truth is everyone needs all the support they can get while going through stressful situations! Search for support from family and friends. When you feel like you need extra support reach out to support groups in person or online. It is very therapeutic to speak to others who understand what you are going through. No one should have to go through stressful situations alone!

8. Be Thankful -

Be thankful for the little things. This is what helps me keep going. I search for just even the smallest things that I am thankful for. I always remind myself that things could be so much worse, and then it reminds me to be thankful for my situation. It could always be worse than it is.

9. Friends and Family -

Having the support of friends and family has been what has got me through my stressful times. Just knowing they were there for me through it all helped me. I didn't need them to help me fix my problems. It just helped to know they were there. It's nice to get a moment to yourself away from it all, and hang out with friends & family, too.

10. Hot Shower or Bath -

Whenever I feel like I need to unwind and just get away from everything. . . . . I love to get in the shower and just have the warm water run down my body. It helps release tension & sore muscles. I love to do the positive affirmations in the shower, too. That makes this a 2 in 1 stress reliever for me. Make your "shower time" your "me time". Don't think about all of your worries and everything you have on your to do list. Let your shower time be your healing time! Think of positive affirmations, while you are showering. It will do wonders for you.

These are just a few of the ways that I have found to help relieve my stress. What are some stress relievers that help you?

Caregiving

Our Dementia Story About Bringing Lightness Into Darkness

March 29, 2018

I have come to learn that through the years going through dementia you will continually have jaw dropping moments. You will think to yourself over and over "Did I just really see that?", or "Did I just really hear that?". The moments can break your heart, make you laugh, or a combination of those two.

Within the last year, or so, that my mom was still living in her home, I received a call from her. She told me that her power went out. I don't remember the conversation word for word. I think I had to guess that her power was out from how she was trying to explain it to me. I told her that I'd come right over. I wanted to make sure she was okay.

There were TWO eye opening moments when I arrived at her home. Two things that I did not expect.

I arrived at my mom's home and used my key to unlock my mom's door. I opened the door to find my mom sitting on her couch in pitch darkness. She was just sitting there staring forward.

When the power goes out people usually run to find a flashlight or they light a candle. My mom did not do that. Her dementia didn't allow her to do that. I did it for her. I got a flashlight out, that was already located in the room she was in, and turned it on.

My mom had been watching tv when the power went out. That's what my mom would always be doing. I had the flashlight on that brought light to the darkness. My mom all the sudden picked up the tv remote, and kept trying to turn on the tv. She kept trying to press the on button. She tried to do it harder with a squinted face. She did this over and over again. It took us awhile to convince her it wasn't going to work because the power was out. This was eye opening to me because even though the power was out, it didn't register to her, that the tv wouldn't work.

I checked with the power company and the power wasn't going to come on for a few hours. I convinced my mom that she should probably just go to bed. I got her ready for bed. She had a battery operated lantern by her couch (bed). I'll leave the couch bed for another story one day.

She awoke to her power back on the next morning.

The lesson I learned from this day is . . . . .

I learned this day that many times there are people out there sitting/ living in darkness, and they need some help to bring light into their world.

Help bring lightness into someone's darkness today!

Visit someone, reach out to someone, be kind to someone, give a smile to someone, give a hug to someone, compliment someone, and there's so many more ways to do this. This will make a difference in their life!

Caregiving

The One Year Mark Living At Assisted Living

February 20, 2018

Today marks the one year mark that our mom has lived at a memory care assisted living! I'm not quite sure if I'm suppose to celebrate, feel sad, smile, or cry about it.

As I reflect on this, I feel like I can only be positive on this 1 year anniversary mark! Here are the reasons why I feel positive, happy, & thankful about this 1 year mark:

◦ I feel so much better about the idea of assisted living now, then I did a year ago.

◦ We have been able to receive needed respite.

◦ Our mom has not complained about being at assisted living. Not even once. I feel this is simply a miracle.

◦ I no longer worry on a daily basis if our mom is safe or not.

◦ Our mom feels safer, cared for, and fits right in.

◦ Our mom's day is filled with many activities and entertainment. More than I could ever do for her.

◦ and there's so much more.

With FTD, there are so many negatives. On this 1 year mark, I choose to see the positive! The positive is what will help us get through it all!

We still have our mom with us, and we can still create memories together!