Later Stages

14 Tips How To Shower Someone with Frontotemporal Dementia!

November 28, 2017


Let's face it head on. No positivity, to cover the negativity. No sugar coating it. Showers are SO HARD for people with Dementia, and in our case, especially Frontotemporal Dementia.

Showering has been one of the hardest things for my mom to do, since she was diagnosed with FTD. It even goes way back before she was diagnosed. After 4 years of being diagnosed with dementia, I finally have a routine down, that actually seems to work.

The beginning stages I could not get my mom to shower worth anything. We were so desperate to at least get her hair washed so we would pull a chair up to the sink and wash her matted hair that way. Just like the way you get your hair washed at a beauty salon. Other times, my mom would say "NO", to showering. She thought she was just fine.

The assisted living memory care place, that my mom is at now, has only been able to help my mom shower once, since February. They are always asking us "how do you shower your mom?". "Can you show one of our CNA's how to shower her?" I kind of feel like I'm a professional, when the professionals, are asking me how to give my mom a shower.  :)   I shower my mom at least once a week, at the assisted living place. If I get lucky, twice a week.

Here are some tips that I do now, that seem to work. I hope this can help someone else out there. I hope this can help someone out for the beginning stages, and to help you prepare for the mid/later stages. The beginning stage is so hard because you go into FTD blinded. For me, it felt like I had to figure everything out on my own.

I put together all of my mom's shower essentials. This includes: shampoo, conditioner, body wash, bath sponge, razor, and lotion. I found a basket to put all of these shower essentials into. This basket has helped save me, by having it all in one place, ready to use. I just pick this basket up, and take it to the bathroom. I store this basket in my mom's bathroom on the counter.

I believe that the pump shampoo has helped me out a tons during the shower process. It has saved me time by just doing one squirt each to get the shampoo and conditioner. It eliminates me having to open up the shampoo bottle, squirting shampoo out, and closing the bottles like the usual shampoo is like. I find these pump bottles at Costco, but I'm sure you can find them somewhere else, too.



FTD Dementia Showering Tips

The Shower Announcement / Exciting, Happy Voice
1.
I always start out with telling my mom "It's shower day today" and I say it in a really exciting voice. I'll always say something like "let's do it really, really fast". That way it makes it sound like it's not a big thing, and it won't take too long. I never ask "do you want to shower now"? If I ever ask my mom in a question form, it always leads to a "NO".

Use These -

It's shower day today!

We are showering today!

We are going to get you ready for _____ (place something they are going to be doing soon or something that excites them here)

Never Use -

Do you want to shower today?

Are you ready to shower?

Can I help you shower today?

Step by Step
2. In our case, I will tell my mom the steps to shower because she has a hard time with everything that goes into having a shower. I specifically will start off by telling my mom to "take off your earrings", "take off your watch", "take off your shoes", etc.

Pick Out Clean Clothes
3. While we are doing step #2, I get my mom a clean outfit out of her dresser, that she will wear after the shower. I get her shower basket and everything she needs for the shower ready. I learned from early on that my mom has a hard time to pick out clean clothes. I'd suggest to just pick out the clothes for your loved one to wear, instead of asking, "what do you want to wear today?".  I noticed once I started picking out clothes for my mom, it was a relief for my mom.

Remove Hair Accessories/Comb Hair
4
. I take out my mom's hair accessories from her hair. I comb through her hair before showering.

Enter Bathroom/ Take Off Clothes
5.
We enter the bathroom with her shower basket, towels, and clean clothing. I tell her to take her clothes off.

Test Water Temperature 
6.
I get the water started and make sure it's the right temperature, before she gets in the shower. I ask my mom to feel the water, and tell me if it feels like a good temperature for her.

Rinse Hair and Body with Water / No Surprises
7. I have learned that it's best to not just have the water in the shower blast my mom, all at once. I have learned that she does better, when I tell her what I am doing next. Like I'll say " I'm going to rinse your hair now, close your eyes". She doesn't like to be surprised with the next step. I'll tell her what I am putting on her hair and I let her know it's going to clean her hair. 

Shampoo/Condition Hair, While Loved One Washes Themselves with Soap
8.
I'll shampoo/condition my mom's hair, and while I'm doing that I have her cleaning herself with soap and a bath sponge. I will tell her where she needs to clean herself. Otherwise, she is confused where to clean herself. At the end, I'll help her wash areas that I think need extra washing. Having her clean herself, seems to help distract her from what I am doing, and the parts to the shower that she doesn't like.

Wash & Shave Arm Pits
9.
I tell my mom to raise her arms and then I wash and shave her armpits.

Rinse Time
10. Make sure you rinse all of the soap off with water. :)

Shower is All Done Now/ Drying Time
11. The showering part is all done now. I will give my mom a towel, so she can dry herself off. I will help dry her, with another towel, to help the process go faster.

Help Put Clothes On
12. I help my mom put on all of her clothes after the shower. She will go into her room after that, and put her new clean socks on. My mom has been needing a little extra help lately, and I help her put her socks on, too.

Comb Hair/ Let Hair Dry
13. I will comb my mom's hair for her and put it up into a pony tail, while her hair is still wet. This is just something we've always done and something that she is use to. We let her hair dry while it's in a pony tail. I have never blow dried my mom's hair. If it works, for your loved one, then blow dry their hair.

Make Them Feel Beautiful / Compliment Them
14. I almost forgot this tip. This is the fun part of the steps to showering. I like to put blush on my mom's cheeks for her, after we are all done with everything. I tell her "she's beautiful". I tell her that her hair is so pretty. I use to put lipstick on her, too. I feel like at the stage she is now, she doesn't need lipstick on, and blush is enough for her. This part is the most rewarding part for me, after the shower, because I get to see my mom smile, and feel beautiful.


○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○


These are just some of the steps we take, while I help my mom to shower. These steps work for us. I never realized that so much goes into showering and we usually don't have to think about the steps to showering, it just comes to us naturally. With a person with dementia, it is so hard for them to think & process all that showering requires. I had a stroke last year and showering is sometimes hard just for me. The stroke opened up my eyes, even more, to how many steps there are to showering. I will admit I have forgotten to use shampoo to wash my hair or I have only shaved one leg, and forgot the other one. The brain does so much thinking, in the shower process, that sometimes you don't even notice. It just comes naturally to those who's brains are working more correctly than others.

I know showers are so hard. It's probably been one of our constant challenges throughout the FTD process. I am happy that I have a routine down, and I just hope that the assisting living will get it down sometime.

At the end of the day, do your best. That is all that you can do. Remember you are amazing and you are doing a great job!



If anyone is reading this who has been through this, or is going through this now, please add your tips and tricks for showering in the comment area, so we can all learn from each other.

This is just our journey to showering. I know everyone has their own separate journey.

Thank you for reading! :)





About Us

Help Save The Brain - Frontotemporal Dementia - #EndFTD #ThinkFTD

November 20, 2017



We are sporting our new t-shirts to help spread awareness about Frontotemporal Dementia! We are pointing to our shirts with our thumbs.

Have you heard of Frontotemporal Dementia before?

I had never heard of FTD until the day my mom was diagnosed with FTD. I was only aware of Alzheimer's and Dementia before. I had no idea there were different types of Dementia. My purpose and goal here on this blog has been to help spread awareness to Frontotemporal Dementia, so more people are aware that it exists. FTD is a heart-breaking dementia to have, just like all other dementias are.

Frontotemporal Dementia Definition -
(from the Association of Frontotemporal Dementia website)

"Frontotemporal degeneration (FTD) is a disease process that results in progressive damage to the temporal and/or frontal lobes of the brain. It causes a group of brain disorders that share many clinical features. FTD is also commonly referred to as frontotemporal dementia, fronto-temporal lobar degeneration (FTLD), or Picks disease."

FTD Facts - 

FTD usually occurs between the ages of 50 and 60, but this dementia has also occurred in younger ages, as well. The youngest being in the 20's and the oldest as being in the 80's.

There are currently no treatments to slow or stop the progression of this disease.

FTD affects the frontal and temporal parts of the brain.

FTD affects an estimated 50,000-60,000 Americans, which was noted in 2011.

The length of FTD can be anywhere from 2-20 years after onset. The median length is 8 years.

FTD affects decision-making, personality, social behavior, language, memory, and more.

FTD is often misdiagnosed as depression, psychiatric problems, or movement disorders. (They thought my mom's problem was depression and psychiatric problems at first, and it took us a long time, to finally find out the real problem, my mom was dealing with.)

FTD is one of the more common dementias that occurs to the younger aged population.

There are subtypes of Frontotemporal Dementia which include: behavioral variant FTD (bvFTD), primary progressive aphasia (PPA) which affects language, and the movement disorders progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD).

For the complete FTD Facts, please visit: 

Thank you for reading and taking the time to learn about Frontotemporal Dementia! You are helping me in this goal, by reading this post!

I appreciate it more than you will ever know! My mom can't help raise awareness with her voice, but I can help her, by using my voice for her! I wish she knew how much of an impact she is making. My mom does not realize she has Frontotemporal Dementia, and I have never been able to speak to her about FTD, with her understanding. 

Help Save The Brain! #EndFTD #ThinkFTD


Please watch the video below to see our fun t-shirt reveal to my mom! I helped her put her new shirt on. She had no idea that I was already wearing the same shirt.


Thank you to @WearingDementia for their fundraising and helping spread the word about Frontotemporal Dementia!

Please help us get the word out about Frontotemporal Dementia! Please share anywhere you can by clicking underneath the Share This Story area, also. Thank you! :)

The Beginning Stages

The Attempted Hospital Escape

November 17, 2017


Our FTD story started out with my mom making a trip to the hospital and getting admitted into the hospital. My mom was admitted into the hospital for a few days in November 2013. You can read the story here to be caught up with why my mom was admitted into the hospital & to see when this attempted hospital escape story happened. This happened the same time as the Hospital Stay - IMC post.

My mom had been acting quite off for some time. We still had no idea what was really wrong with my mom. I went to visit my mom at the hospital, like I did every day, while she was in the hospital. It was just me and my mom in her hospital room. She all of the sudden told me "let's get out of here, let's leave".  I remember asking her who was going to drive her away and she told me "you are". I remember thinking & wondering to myself what to do. She was completely dead serious about escaping the hospital. I felt like at that moment, we could have been in a movie scene together, trying to escape the hospital.

Before I knew it, my mom ripped her IV line out of her. She ripped off anything that was attached to her. She put on the rest of her clothes and she said, "let's go", as she started out of the door. No matter how hard I tried to get her to stay, she had already made her mind up that she was going to escape with my help or not. I remember standing there, feeling so torn, as my mom, wanted me to help her escape, but the right thing to do was to get help from a nurse.

As my mom started down the hallway, I walked and knocked on a nurse's door and told her my mom was trying to escape, and I needed their help.

The nurses caught up to my mom near the elevator, and brought her back to her room. My mom was so UPSET. She was upset because, she thought she was fine, and she just wanted to leave.

They had to call security, and have someone sit at a desk outside my mom's door, watching my mom's door, to make sure she didn't try to escape again. Yep, that is right. My mom is someone who has been watched carefully while at the hospital.

My heart was torn in so many different places during this time. I knew something was wrong with my mom, but I didn't quite know what was wrong with her. Part of me was feeling like my mind, was also, going crazy, in the process of everything.

You would think that this could be a made up fictional story, but instead, this is the REALITY of Frontemporal Dementia.

I sit here and think of how grateful we are. We have come so far in this journey. I would never, ever, want to start this journey again. I hope we never have to again. It has been so hard, so tear jerking, so heart wrenching, so every feeling you can feel, and some more. I am thankful we have come this far. 

I am glad we are past the first stage. My heart goes out to everyone who is starting the FTD journey!

I am scared of the upcoming stages and the unknown. I'll replace my fear with faith, though.

Faith over fear, always.




We Will Miss You, Tiger!

November 15, 2017


Life had other plans for us this week.

I really can't believe that I am writing this post so soon. We always thought Tiger would outlive our mom. We never once discussed losing Tiger first. Tiger recently became real sick with cancer, and completely stopped eating. He lost all of his body weight, that he could possibly lose.


Tiger is in the heavens now and he'll be waiting there for my mom.

I know there is a reason that my mom found Tiger. It didn't just happen by coincidence. It was meant to be. Tiger completed his mission here. He was a great companion for my mom. My mom was blessed to find him, for companionship, in 2011. Tiger was my mom's side kick throughout her Frontotemporal Dementia journey.

Thank you Jon, Jamie, and the kids for LOVING Tiger until the end! You gave him the most love that he could ever have!  You helped complete his mission here!

We will miss you, Tiger!

Rest in LOVE & PEACE!

Here are some previous blog posts about Tiger, if you want to get updated on Tiger, and my mom.
Reunion with Tiger the Cat & Our Mom


Tiger Goes To A New Home

Tiger Hear Him Roar


Saying Goodbye Was Hard! 


This was a common thing my mom and Tiger would do. My mom would go talk to Tiger through the window, while she was outside, and he was inside. Tiger loved looking out of this window. There were many times Tiger would be there, while we drove away, and he'd jump back up when we would pull up to the house.  



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.

Popular Posts