Cindy's Life Updates with Frontotemporal Dementia: February 2018

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!

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.

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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.

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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.

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No one should ever go through FTD alone!

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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!