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 Caregiver. Show all posts
Showing posts with label Caregiver. 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
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.

Saturday, November 12, 2011

Me, Myself and I and BIL

My daily call to check on Hubby verified what I had said about his stomach problem was correct.
I find it funny that discussions of bathroom issues are as natural as discussing the weather.
Hubby was feeling better had risen to eat breakfast and was resting when I called.

There seems to be a calm that has settled on the house.
For the last 2 days I have noticed it in BIL too.
He's more cheery.
He sings while he puts his shoes on for school.

This day I tackled a home repair project that could NOT be done while Hubby was here.
Re Grouting the bathroom floor.
I've been wanting to take care of this over due repair for some time now but have not been able to free up the bathroom for the length of time it takes to do the job.
Hubby being away frees up the bathroom (we have another upstairs I can get to) and allows me to devote my time to doing the job as quickly and easily as I can without distractions.

You might think that this is all boring and wonder why I would choose an activity like this for my respite.
I can assure you that this is something I want to do.
Not rushing into a free for all respite week for me was the most relaxing and mind strengthening I could do for myself.
Taking care of me had to be priority number one if I want to care for Hubby.
Knowing this job will be finished is part of taking care of me.
I really am feeling a little more collected and although this job is tedious I do enjoy it.
It's what relaxes me.

Also, I still have caregiving responsibilities for my 63 yr old Down Syndrome BIL.
It's funny though that I never consider myself as a caregiver for him. I've been doing it for more than 17 yrs. He has always been considered as one of my kids. Perhaps because he is of the age equivalent of an uneducated 8 yr old and his care blended with the kids while they were young.
He still needs care just like my children when they were young.  They outgrew it, BIL didn't
That type of care was just being a parent and nothing more to me.
BIL's needs are met. He is encouraged to do everything he can and sometimes pressed to do what I know he can even when he complains that he can't.
He is always encouraged to try something first before giving up and he enjoys the independence and challenges, most of the time.
He is a true treasure to have when he comes.
His care is shared equally between his 2 other sisters and myself.
I have him for the fun months, Sept - Dec. I get all the good holidays :)
Oh, he can annoy me, just like my own children used to, when he gets stubborn or moves my things around and then I can't find something. He takes FOREVER to do anything and his morning slow and my lack of morning friendliness can clash when he must be pushed to make it out the door to catch the school bus. Or when he turns into a Drama Queen over things.
BIL makes me smile more than annoys me though and I love him and I love having him.

Testing the respite waters in my own way works for me.
Knowing respite is available eases my mind for a plan B.
I don't feel so trapped, if that's a good word to use.
Knowing Hubby has adjusted fairly well to his stay assures me he is in good hands.
Prayerfully turning it all over to God to deal with makes all the changes of the week easier to process.