Caregiving

Last Minute Doctor Appointment

February 07, 2018


We had a last minute doctor appointment yesterday. The doctor wanted to follow up with my mom, in order to give refills on prescriptions.

Everything went well. My mom was happy to go to the doctors. She wasn't sure the reasoning why we would be going to the doctor, but she was willing to go happily.

It was time for her to get prescription refills, & bloodwork done. The appointment went smoothly.

The lady who was taking my mom's blood asked my mom to sign her initials on some paperwork. She handed the clipboard to my mom. My mom stared at it for awhile. She didn't know what to do. I took the clipboard from her, and helped initial and sign for her. My mom laughed, and watched me sign and initial the papers. As I was doing that, my mom asked me what I was writing.

It's just nice to see a smile on my mom's face when she goes to the doctor.

The beginning process of FTD my mom had anger and was in denial that anything was wrong with her. She is now past that stage, and now she goes peacefully because she has no idea why we are going to the doctor's office.

Here is a video below, from yesterday, to show how we never know how our conversations will go with my mom because of what she says or does. She was wearing ear plugs when we went to pick her up at 3:30PM. She has a habit of wearing ear plugs every night. This is one habit that she has held onto. This was the first time that I've ever noticed that she forgot to take her earplugs out, when she woke up in the morning.

Smiling & Laughing is the Best Medicine!

Smile & Laugh Away Today and Everyday!



Caregiving

13 Benefits Of Going To A Support Group!

February 06, 2018



What is a support group? Have you ever wondered what the purpose of a support group is?

Support Definition - 

To bear or to hold up.

To bear the weight of especially from below; keep from falling, sinking, or slipping.

Group Definition - 

A number of people or things that are located close together or considered or classed together.

A support group from those definitions mean that it is a group of many people who come together to help you keep from falling & they help hold/lift you up.


◦  ◦  ◦  ◦ 

I remember going to my first Frontotemporal Dementia Support Group ever. We were about a  year or two in from having FTD affect our lives. We were still new to FTD and learning new things about FTD every day. "Learning while we go",  seemed to be our motto at the time.

I went with my brother, Jon and my husband, Paul. It reminded me of starting my first day of school. We walked in as strangers, not knowing anyone. We were immediately embraced. We wrote our names on paper place cards and sat down with our names in front of us. It was official. We were the newest members of the group. We were given binders with information on FTD in them. Jon and Paul were sitting on each side of me as my support system.

We sat around tables that were set up in a square shape, and so we were all facing each other. I have never been around the most empathetic people in my life, until that moment. They were all looking at me with sadness, empathy, and as if they knew my situation. They even looked at me as if they knew what was going to come next for me. Many of these people had been through what I had been through, and were further down the FTD path than I was at or their FTD journey had already finished. They knew what would be coming up for me next, when I had no idea what was to come next. The only difference our stories seemed to have is that many were caring for their spouse with FTD, as we were caring for our mom with FTD.

Somehow it was my turn to speak or I guess I should say "cry." Everyone was staring at me. I can't remember what I said. I can only remember the tears. Tears started streaming down my face. This was the first time that I felt that everyone in the room had probably felt the way that I felt at that moment. I cried because I missed my mom. I cried because I needed to. I cried because I had raw and new feelings. It was simply okay to cry. I needed to get those emotions out. There was even a sweet lady who got up and brought me tissues for my tears. That is what a support group is all about. I was being supported.

◦  ◦  ◦  ◦ 


I learned that support groups are amazing.

◦  They are free.

◦  They are where you can go to get support from others, when you have no idea where else to get support from.

◦  You can vent.

◦  You have others to listen to you.

◦  You can cry.

◦  You can probably scream too, if you felt like you needed to.

◦  You can get a hug.

◦  You can feel not so alone.

◦  You can have instant connections.

◦  You can hear similar stories.

◦  You can ask questions and get answers or suggestions.

You can learn from others that are in, or have been in, a similar situations as you.

◦  You can learn in the world of FTD, you aren't actually going crazy after all, or maybe you are, after all it is FTD.

What should you take to a support group?

A notebook to jot down notes

A pen or pencil

Write down questions you want to ask prior to arriving to the support group. This will help you remember what you might want to say during the support group.

Kleenex (just in case)

How should I dress?

There is no need to dress to impress at support groups. If it makes you feel good to dress to impress, than do it! I guarantee you can dress any way you want (as long as it is appropriate in public), even if you just got out of bed. The support group wants you there, so they can be a support to you.

◦  ◦  ◦  ◦ 

No one should ever go through FTD alone!

◦  ◦  ◦  ◦ 

I would highly recommend going to a support group near you, if you can. Get on a support group e-mail list. Join support groups online, if you can't make it to a support group in person. It was so educational for me to know that I wasn't going through this all alone. There were others who were going through the same exact thing as me, just in a different way, because all stories are different.

Click on the top of my blog where it says "FTD Support Groups" to find the nearest support group where you live.

For locals in the Salt Lake City area, there are two support groups. One in the AM and one in the PM.

AM Support Group

WHERE:
Sandy Senior Center
9310 South, 1300 East
Sandy, UT


WHEN:
2nd Wednesday of the month from 10 a.m.–11:30 a.m.


Many "Thank you's" to Bonnie for all she does to help others out!

Bonnie Shepherd
801-231-3442
bbshepherd@comcast.net


PM Support Group

WHERE:
Bingham Creek Library
4834 West 9000 South
West Jordan, UT 84081


WHEN:
2nd Wednesday of the month from 6 p.m.–7:30 p.m.

Many "Thank you's" to Jamie for all she does to help others out!

Jamie Gordon
801-550-3563
jjgordon3@juno.com






Music

Almost Wordless Today - Blank Stares By Jay Allen

February 01, 2018


I've had a lot of words come to my mind lately. I just haven't known how to put them all together. I heard this song today, and thought this is how I have been feeling lately.

This song brought tears to my eyes.

I'm so glad that people with the gift of singing use their talent to create songs like this!

Jay Allen - Blank Stares

My blessings and thoughts go out to everyone who has had Alzheimer's or any other Dementia hit their family!

Caregiving

I Don't Just Like You, I Love You!

January 24, 2018



Our conversations have become quieter lately. Not completely quiet, just quieter. The talking and laughing has gotten less. I watched my short mom sitting in the front passenger seat next to my husband, Paul. She continued to stare out the window with her squinty eyes with no words to say.

I had said everything that I could possibly think to say during this car drive. The crowd had gotten silent. I finally decided to ask my mom a question. I figure she'll at least respond back to me, "Yes".

I asked my mom "Do you like me and Paul?"

I know, silly question, right? This is a question I had never asked her before. 

Her response surprised me and melted my heart. 

It was a response that I thought I would never hear again. I didn't think she could even respond this way.

Her response was . . . .

"I don't just like you guys, I love you guys!"

Her remark made me smile. I wish I could have had that moment on video. I will hold that moment in my heart forever.

For that one moment, I felt like I had my mom back.

Tell someone that you love them today & make someone smile! It's such a blessing to be able to do so. I never knew how much of a blessing it is, to be able to communicate love!

Make someone feel loved, instead of just liked!



Quotes

Remember These Things

January 17, 2018


I have been blessed to have my mom be my biggest cheerleader in life! My mom would motivate me, give me sweet messages, and just try to help pick me up whenever she saw that I needed it. I have been blessed to find reminders of these things still to this day!


I hope this reminder helps someone out there that needs to hear this message today! Please share this message with someone who might need to see this message today!

YOU ARE Valued,

YOU ARE Precious,

YOU ARE Needed,

YOU ARE Loved.

This is just a reminder to tell people the way you truly feel about them, if it's positive. Let them know these things before it is to late. Be someone's cheerleader. Be someone's supporter. Just lift someone else, who needs a lift.

I am my mom's biggest cheerleader now. I'm happy that my mom is still able to lift others with her past messages to me.

Let's help lift each other up higher and higher!

And Always Remember . . . .

You are valued,

You are precious,

You are needed,

You are loved!





About Us

Stroke Awareness - My Stroke Story

January 11, 2018


Warning: This is a long post, but this could help save you or your loved one's life! This message is important! Thank you for reading & helping me spread awareness to Strokes!

I feel compelled to write a post about Strokes today. You might be wondering what a stroke has to do with Frontotemporal Dementia. I guess in our situation the stroke and Frontotemporal Dementia don't have anything to do with being combined together, or as one. I was just my mom's caregiver when a stroke hit me. I was definitely blindsided by the stroke.

I had heard that caregivers sometimes pass away before the person they are caring for. I never really took those words seriously. That seemed strange to me. I really thought "how can caregivers get sick or pass away first?" I'm pretty sure now that is because stress can do a lot to your body. If you are feeling overwhelmed with your caregiving responsibilities, please, try to find some help, before it is to late! I wish I could turn back the time to where I didn't have to experience a stroke.

I was the main caregiver for my mom when I experienced a stroke. It was July 13, 2016 on a hot summer day, to be exact. I had been having bad neck pain and headaches for 2 weeks constantly. My head and neck hurt so bad even laying my head on a pillow. I had no relief whatsoever at anytime during those 2 weeks. I had tried everything to get rid of the pain, but nothing was helping. I was so desperate for any relief, so I decided to go to the chiropractor.

My stroke symptoms started while I was trying to get ready to leave the chiropractor office, after I had been adjusted, and massaged. It was a scary, terrifying, emotional, frightful, and confusing time all at once.

This is a post below, that I wrote on Facebook, about my Stroke experience. Written in May 2017.

Better late than never. I’m finally breaking my silence. . . .

You never know how strong you really are until you get knocked down a bit and get back up.   

I am so very thankful for everyone who visited me, sent flowers, fruit, balloons, & cards, offered service, helped with my mom, the calls/voicemails, texts, the prayers, and the many people who have asked how I am doing & continue to ask. None of this has gone unnoticed & it is appreciated so much!

I feel as if everything in life happens for a reason and this happened to only make me stronger and to change my life in a way that was needed. I am so lucky for my outcome and feel so very blessed.

I continue to heal every day and I can’t wait until I feel more like myself. I’m now almost 10 months post-stroke and I am so thankful to be alive! Strokes are real, strokes can happen to anyone. If it happened to me, it could happen to you.

Please be aware of stroke signs.

For me it was: confusion, slurring my words & couldn’t speak right, didn’t know who some people were by hearing their names, bad headache, bad neck pain (I also had a dissected artery in my neck that caused the stroke), blurry vision (everything all seemed together & blurry. This was the first symptom that started.), nausea, tiredness, discoordination, & vomiting.

Be prepared to be an advocate for your loved one. I thought it would get better if I laid down & finally realized it wasn’t going to get better. I went to the hospital after 4 1/2 hours that the symptoms started. I was aware of strokes (and, of course, never thought it could happen to me), but didn’t know what was happening to me at the time.

I was told in the emergency room that I was being admitted to the hospital because of a dissected artery. I was shocked when I got to my hospital room and heard the nurse tell me I’m too young to be having a stroke.

Keep on smiling! That is what has helped me get through my harder times. Many thanks to my family, friends, and especially to Paul Ahotaeiloa for being there for me non-stop and being my biggest supporter! 

My mom, who has Frontotemporal Dementia, had no idea what a stroke was. She had no idea what I was going through. She knew I was at the hospital, but I don't even know if she knew what that fully meant. I had just gotten home from the hospital, and my mom called me up, and asked me if I was going to pick her up. She was ready to hang out with me again. She would call me every day after my stroke and want me to come pick her up. She would treat me as if I was fine, and nothing happened to me. No matter what, my mom was unable to understand this time during my stroke. There was nothing I could say or do to have her truly understand what I was going through. I wanted so badly to be the same person that I was before the stroke, but I couldn't. That is probably the hardest thing for me to this day. I can't do as much, as I did before.

Another hard part of the stroke for me is that I became a new person. It has changed my whole being, and I am a new person. There are things that I can't do anymore or I have to do them differently now. I am slower. My energy gets used up quicker, and everything I do takes more energy to do than it did before.

I recently saw someone write that the aftermath of a stroke is worse than the actual stroke. I fully agree with that for my situation. A stroke is not like a surgery where you can recover from it after a few days/weeks/months or like a sickness that you can fully recover from. Once you have a stroke, you have some kind of disability whether you can see it or not. It is a permanent injury to the brain. The brain will never recover fully, but the brain can do some amazing things like what neuroplasticity does. Stroke survivors need support and they need to know that you are there for them.

Please share and help me spread awareness to Strokes. I don't want anyone to have to experience a stroke. It is something that I had never experienced before, and I hope I never have to experience another stroke again.

My thoughts and prayers go out to everyone who has had a Stroke, is going through a Stroke experience right now, or is going through the aftermath of a Stroke.

Stay  Strong!

Take  Care  of  Yourself!

This is why I am passionate about Stroke Awareness and Frontotemporal Dementia Awareness!

. . . and REMEMBER if you have any of these symptoms below, please, please, please, get to the hospital immediately (ASAP)! I wish I had gone to the hospital sooner than I did. That is why it is important for you to be someone's advocate, and help get them to the hospital, if you suspect a stroke is present!


Photo Credit to : https://www.stemcell.life/stroke.html


A BIG THANK YOU will always go to my, Aunt Linda P, for helping save us that week of the stroke! She stayed with my mom at her home and helped my mom out. Every caregiver needs a life saver in their life, and Linda P has been our life saver during all our moments we have needed help during this FTD process.

Sharing is caring! Thank you for sharing and caring!  :)

Thank you for your support!

Click on the share buttons below! 🙌 👍 ❤️



Caregiving

It's A Wrap, 2017!

December 31, 2017


I would say overall the year 2017 has been good to us! We have made it another year! I feel blessed, and hope you are all blessed in 2018!

Here are our top honest events that happened this year in 2017.

* - Let's start the count down - *

#12
Our mom's basement flooded due to a clogged pipe. Our mom used too much toilet paper in the toilet, time and time again. She simply forgot how to use the toilet properly.

#11
Our mom was moved into assisted living memory care.  She has enjoyed it living at the assisting living place, and she has never complained about being there.

#10
Our mom turned 60 years old this year! She didn't know how old she was turning this year or last year. 

#9
Our mom started wearing disposable underwear for the first time. Our mom refused to wear them prior years, and would tell me I could wear them myself, but she wasn't going to wear them. This year she started to wear them daily & she didn't refuse to use them.

#8
We noticed that our mom did not know her grandchildren or son's last name. All of their last names are the same as hers. She did not think they all have the same last names.

#7
Our mom enjoyed the start of summer with car rides. Going out became harder to do, due to incontinence issues. She still gets out and about with everyone's love, patience, & help.

#6
Our mom's cat, Tiger, got sick with cancer. RIP, Tiger!

#5
I made our blog available for the public to see. I had a feeling that wouldn't go away that I needed to share & educate others about Frontotemporal Dementia.

#4
Our mom's pains came back. She had stopped complaining about her pains throughout her bout with Frontotemporal Dementia. This is the first year that she started to complain about her pains that she had, prior to her FTD diagnosis.

#3
This is the first year that we have noticed that our mom didn't know the months or what year it has been. She hasn't been able to associate the holidays with which month it is, either.

#2
This is the first year that our mom let me help her shower. She needs assistance to shower now.

#1
Our mom's short term memory has been worse this year. It is the worst that it has ever been.

Our happiest moments were taking drives, watching tv, partying at Halloween & Christmas, visiting Tiger, listening to Bruno Mars, and just simply hanging out.

Our most trying moments were figuring out the incontinence issues, the flooded basement, and Tiger passing away. For me personally, it was having my mom go to assisted living. The thought of it, and the guilt I had, was very hard at the time. It has turned out to be one of the best choices we have made.

Our positive outlook - Our mom did not get sick during the year 2017. That's a big accomplishment. She would get sick at least once a year since she has had FTD. This year she made it without getting sick.

Our takeaway from 2017 - Be present. The "things" & "stuff" in life doesn't matter. It is the spending time with someone that matters the most. Our mom was able to walk away from her home full of "stuff" and none of the "stuff" mattered to her in the end. When I asked if she needed anything from her home her reply was "what's at my home?" That was very eye opening to me.

Happy New Year from us to you! 

Thank you for your support in 2017!

Our mission is to help spread awareness to Frontotemporal Dementia!

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