Disclaimer

This is dementia. It's not just a memory problem.
What you read in this blog is purely my own personal experience in dealing with Lewy Body Dementia every day.

This is not meant to offer any medical or legal advise.
I have no professional training in care giving or experiences in formal writing.
I'm just a woman that loves her husband deeply and wants to provide him with the best quality of life he can and chooses to have.
My prayer though this is "Lord, What am I learning from this; how can I use it help someone else and to glorify You?"
If just one person finds comfort in this public blog. I will feel like it was a success.

Showing posts with label caregiving. Show all posts
Showing posts with label caregiving. Show all posts

Sunday, June 19, 2016

Visual Learning about Lewy Body Dementia

It's been 2 years since my husband passed away and I still feel heart led to be actively involved in caregiver support.
I know this will be the first post anyone sees on this blog so I wanted to share this visual lesson I have given on Lewy Body Dementia. If you can understand this, you might understand Lewy and other dementias a little bit more.
This is also a hands on activity for you to do at home and share with others, so here goes

You need
Bubble wrap
Highlighter
This brain photo *Thank you to Stephen Holland at hiddentalents.org for his permission to use it.
Brain Functions
Print this picture out on a regular sheet of paper
Cut a piece of bubble wrap a little less than the size of the paper
Play with the bubble wrap while you're reading the brain functions, you know you want to pop some bubbles!
Turn the bubble wrap to the smooth side and use the highlighter to mark the popped bubbles.
Turn the bubble wrap back over and place it over the picture.
THIS represents the beta proteins of Lewy Body Dementia!
Lewy bodies are diffuse, meaning scattered or spread over a wide area, not concentrated. 
Notice what areas of the brain are under the highlighted bubbles.
Now fill the bubbles back up with air.
What do you mean you can't? Just do it!
You see, the bubbles are broken so the best you can do it try to patch them (meds) or in some cases if the bubbles air was only transferred you might be able to shift some of the air of another nearby bubble into the highlighted one. THAT represents the fluctuations of LBD, seems to decline, now a rebound.
But you realize that over time the air will eventually seep out and the bubble will no longer be inflated.

Lewy Body dementia is a total body issue, not just a memory one.
We give meds to alleviate some symptoms, it's the best we can do.
Even meds for other things might not have the same effects on their intended issues over time.
We're trying to MAKE a dying brain that can not, function normally. Sometimes we can force it for a while but the brain, the mainframe of the body is shutting down totally, the bubbles continue to pop and as of yet, can not be reversed or repaired.

I hope this visual helps you understand a little bit more about what is happening to our loved ones.


Tuesday, October 25, 2011

The Days of our Life

Thought I would share a few smiles that came our way over the last couple weeks.
While talking on the phone with our youngest daughter one evening, Hubby decided to talk to me too. He saw me with the phone to my ear and even asked who I was talking to. Our daughter sent her love which I forwarded and he returned. He continued talking and asking me questions about nothing in particular until I finally told our daughter I had to let her go so I could concentrate on what Hubby was saying. When I hung up, he said in a disgusted tone "Oh, you hung up on me!" then he stopped talking!
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Hubby is completely shocked one night when he learned my last name is the same as his but he thinks I'm pulling his leg! ROFLOL!!
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You know you're a caregiver when you let your 3 yr old grandson help take care of Pappaw by holding and trading off care supplies . When the job is finished, you tell your grandson "Good Job!" and the two of you High Five as he exclaims, "That's Teamwork!"
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Very early one morning I was trying to get a cup of coffee down when Hubby gave me my "orders" for breakfast. When I walked in the room with the sausage biscuits I noticed he was sleeping. The thought crossed my mind it yell very loudly "ORDER UP" but enough of the coffee had kicked in to combat that feeling. #lovemymorningcoffee
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FINALLY decided to paint the wall in my bedroom today! Now Hubby and I are watching paint dry and seriously, it's the highlight of our day because we noticed a spot I missed :)
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 Interesting evening here. Hubby thinks it's morning and try as I may he will not be changed. Oldest daughter called and even she tried to speak to him on the phone but he told he he didn't like to talk that early in the day. LOL!! He thinks it's funny that I served him supper instead of coffee and breakfast. He's even asking if Brother in Law thinks it's funny to have soup before he goes to school.I believe that to Hubby, it's funny and he is humoring me in my mistake ROFLOL!!!
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Completely agitated at myself for putting something in the oven, setting the timer and walking outside getting occupied!
No burn up when time dawned on me but the timer was beeping like crazy and Hubby and BIL were just standing in the doorway. I nearly knocked them down to get to the oven sputtering that nobody came to get me!
Hubby, after saying "huh?" several times, didn't know why he needed to get me and BIL just started at me.
Frustrated I barked, "Didn't you hear the timer?!"
Hubby said "No" 
I asked why he was standing in the door.
His answer, "I didn't know where you were.
I still sputtered as I removed the food. then Hubby annoyed with me said "I don't know what's wrong with you."
AGAIN I repeated my frustration and walked away from them.
Hubby called me back and said "Honey, I love you"
All I can do is laugh. ROFLOL!!!
 
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Trying to get me (limited coffee) BIL (Mr slow poke) and Hubby (Mr "Huh?") all corralled into the car for a Dr appointment this morning was like being in an episode of the 3 Stooges. Finally got BIL to school and Hubby to the Dr.
By the time we got there Hubby was wound up and acting silly. He asked for extra assistance to get out of the car so I reached in and took hold of his hand while I braced the wheelchair. He leaned forward, gave me a sly look, let go of my hand and fell back into the seat. Then proceeded to whine like a child "Ohhh she let go of me and made me fall back, she's abusing me" then started laughing like a little girl!
I started laughing and tried to help again but my laughter made me lose my grip and then he did fall back into the seat.
More "Whining" about a "boo boo on my finger" and more laughter.
MAN what a morning!! Came home and took a 2 hr nap!
 
So you see, it's not all bad around here :)