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.

Tuesday, May 22, 2012

Falls Specialist

Fortunately for me the Falls Specialist that the VA set up a consult with only called me on the phone and didn't need to make a home visit!
I tidied up a few things up anyway, just to get a head start. Better safe than sorry.

I had no idea there was such a person as a Falls Specialist and I told her so.
FS said that she worked mainly with nursing homes for the patients safety.
I let her know that I appreciated her input on an individual basis and that there were many more at home caregivers that could benefit from her knowledge.
So first things first.

FS gave me a run down of the things that she would normally recommend or order for a nursing home patient that was a fall risk. Everything from hip protectors to bed alarms.
She gave me a site to go and look at products, posey.com

After looking at her suggestions I decided on items that I felt would be the most beneficial for Hubby while still maintaining his dignity and independence.
For hip protector I chose something that resembled sweat shorts. They will be easy on and off for Hubby as opposed to the undergarment type of protectors.
Another item she wasn't sure if she could get approved but was going to try, was a floor alarm.
She said it wasn't requested as bed alarms were the norm and she knew I could get one of those. I asked her to try anyway. I wanted a floor alarm/alert because rolling around in my  mind was the memory of Hubby's stay in the hospital while they were testing for hydrocephalus. Because he has dementia and was a fall risk, they placed an alarm on his bed that went off when he tried to get up and go to the bathroom. After it went off the first time, he feared getting up and setting off the alarm again so he didn't move all night and  lets just say when I arrived the next morning there was an upset Hubby lying flat on his back with a job for a nurse to take care of. I don't want him to have that trapped feeling again.
Maybe with the floor alarm he will feel differently about the alert and not worry he can't move around in his bed. We will see.
Since the Veterans Assoc. is supplying these items, I have no idea how much something like this costs.
I am very grateful to be able to receive the assistance. The VA may be slow and FS told me it would take at least a week to get the request approved and then how ever long afterward to get the order in, but when they come through, they come through.

After Hubby's latest fall I wondered if he would even be able to walk on his own again.
He took a nose dive in mobility and required complete assistance with rising, transferring, even sitting and staying upright. But a week later, as of last night, he is more his own self (whatever that really is) and today getting around with no additional help besides the grab bars placed in the rooms or easily accessible furniture for clutching.

Last night, while I slept he raided the fridge, long time since he's done that. And this morning my FB status was...
Dear (Daddy), Thank you for getting up in the night to raid the refrigerator and spill cheese all over the floor. It was a lovely surprise to find first thing this morning. Much love, from Lady and Booger ♥ Oh and we didn't care for the salsa so we let Mama clean that up. We're sure she appreciates you too :)

Tuesday, May 15, 2012


Documenting Lewy was a suggestion I was given when the Lewy Body journey started and after I joined a spousal caregiving support group for those living and caring for Lewy Body.
I learned so much from those that went before us.
Journaling was a way to not only document Lewy and be able to present a thorough report to the Dr, it became a way for me to document my feelings. Something to look back on and see what we did that worked and what didn't work to make Hubby's life more manageable for him and for me.
I also hope that in choosing to journal (blog) publicly I am helping others to better understand Lewy and helping those that find themselves face to face with a diagnosis of Lewy Body Dementia I am offering a bit of support so the journey doesn't feel so lonely. I remember that scared and alone feeling.

With each down turn I still get that scared feeling. I just don't feel alone anymore.
I know there are those before, those waking with and those coming after.
The emotional support system I fell into by blogging keeps my heart on track.
I am blessed beyond measure by you all.

So the most recent downturns Hubby is experiencing has it's fears.
Hubby took another fall last night.
It was pretty hard on his back and not his head this time.
The jolt itself was enough to send Hubby into the same reaction of shaking once I was able to get him up from the floor and into bed.
As before I didn't know what to do and since my holding him seemed to help calm him the last time, I did it again. I held him close and tight and stroked his brow and head until he settled down and the lines in his forehead smoothed out quite a bit.
I always feel so inadequate in doing that. My head says I need to be doing some type of medical/professional/ textbook  something or another to care for the shaking, but my heart just keeps saying, hold him. So I follow my heart leaving my head to scream inadequate.

Hubby doesn't help matters either by refusing, REFUSING, medical attention.
Today though, Hubby has needed lift assist all day today. He has been unable to rise from his bed or walk so we have put a few house miles on the wheelchair today. Because of this I called Primary Care Dr, even though Hubby didn't want me to, and spoke with PCNurse (We like her) She was very understanding of our situation.
I had informed her that I have documented a fall of some type at least once a week for the past 2 months!
I also told her I didn't think calling every time Hubby went down was necessary because , most of the time he has no serious injury, a few rub burns and a scratch or two and Hubby's refusal to have anything seen to prevented me from calling, also, I didn't want to become worrisome to them about every bump and bruise.
PCNurse understood my dilemma, was happy to make note of my recordings and together we decided that a consult to a Falls Specialist was in order.
Falls Specialist will make an evaluation of our needs either by phone or a home visit and order the necessary supplies for Hubby. (Note to self, clean house) 

I realize this post is across the board ordinary in content and for those that have followed my ramblings know I have a quirky sense of humor so I wanted to share a few FB status smiles with you as a post script.

May 1)  A fly keeps annoying Hubby so he asked me to kill it for him. While retrieving the flyswatter it crossed my mind, Hubby with a serious startle response + Kathy with a flyswatter, this may not end well, for Hubby. :/

 So I'm talking to Booger (the dog) when I notice something odd on his head and ear. Then I realize, he has cheese dip in his fur! So, either he's been sitting under Hubby at supper OR Hubby has been trying to spoon feed him again and missed! Tried to get a pic but it wouldn't show up. Fun Times!! LOL!!!
May 3) Hubby was sleeping and dreaming, loudly. I walked in to listen to him give directions on car repair and converse with a friend then laugh. Something must have gone wrong because he got angry so I left him to his dreams to work it out. When he woke, I heard him call "HEY!" I went to him, and I know I shouldn't have laughed because he was as annoyed as all get out but he said "Just where the H*** am I!" We eventually got it all straightened out :) LOL!
May 7)  Award winning comment of the day!!
Hubby was watching TV and I was in the room folding clothes, he looks over at me and says "Hey Hun?"
I answer, "Yes?"
He says "I sure do love you"
♥ That my friends deserved a hug and a kiss!! ♥

May 11)  Lawn Mower decided to stop moving :(
So, disgusted, I left it at the back of the house. Shared the annoyance with Hubby who later suggested WE should go get it and bring it to the front of the house (It's normal parking spot).
We laughed about the word "we".
He shuffled into the bedroom and I decided to just go out and push it to the front. Mission accomplished and inside I came.
I've been sitting here on FB for a little bit when he shuffles back in here and asks me if I was ready to go get the mower. I said I already did, and he responded, "Well I just got my shoes on".
Then I noticed, he had put on a pair of jeans and his shoes to help me! LOL!! Thanks honey!!

Friday, May 4, 2012

Are We There Yet?

According to the V.A. we aren't.

Hubby had an appointment for Palliative/Hospice care the other day.
I allowed 2 hrs for Hubby to get up, have coffee, eat and me get him prepared for his appointment.
This time frame is usually a good one although there are times we cut it close.
This particular day it took the entire 2 hrs just to get Hubby out of bed.
It wasn't because he didn't want to go, it was because Hubby has NO concept of time.
No matter how much I prodded him he just didn't go. When he finally did, our window closed and locked, so I had to cancel.
At this point, knowing the importance of this appointment I was very frustrated but over and over I had to remind myself that Hubby has no control over his time concept.
When I told Hubby we had to cancel he didn't understand why.
I tried explaining we had an appointment but the word appointment was lost on Hubby and he couldn't understand why we couldn't just go and get one while we were there.
I suggested Hubby might appreciate the the time to get a little more sleep, he did.

I called and cancelled and was told someone would call me back and we would see what we could do on the phone.
Nobody called that day.
Wed while my aide was here, someone called and I missed it, they said they would call back.
Thursday, nobody called.
This morning my aide is coming again and I will need to make the weekend run for milk and such. I fretted someone would call while I was gone so I called instead.

ACCORDING TO THE V.A. guidelines for Hospice for dementia are pretty strict.
After a long search, I found this Functional Assessment Scale (FAST) used in determining eligibility.
Besides a list of things Hubby does qualify about he must have..

 A)Ability to speak limited to approximately ≤ 6 intelligible different words
in the course of an average day or in the course of an intensive interview.
**Hubby can still have fragmented sentence conversations that make some sense.

B) Speech ability is limited to the use of a single intelligible word in an
average day or in the course of an intensive interview

C) Ambulatory ability is lost (cannot walk without personal assistance.)
 **At this point, I have the ability to get him up and get him to appointments. He can help with transfers and can walk very short distances as long as he has something to hold.

D) Cannot sit up without assistance (e.g., the individual will fall over if
there are not lateral rests [arms] on the chair.)
** Close on this one, he can sit up for short lengths of time on the side of his bed but eventually tumbles over.

E) Loss of ability to smile.
**Hubby can still smile.

F) Loss of ability to hold up head independently
**Hubby can still hold his head up.


One or more of the following conditions in the 12 months:
Aspiration pneumonia
Pyelonephritis (kidney infections, I had to look it up)
Multiple pressure ulcers ( stage 3-4)
Recurrent Fever

These have not occurred for Hubby

So our course of action is to stay where we are doing what we are doing until we get there.
Palliative Care .

My team of Drs and our HHA providing comfort, ease and quality of life for Hubby.
We know that there is no cure for Lewy Body. Maybe one day there will be :)

I think I was a little disappointed that Hubby didn't qualify only because I didn't get the opportunity to say, "No Thanks, we're good with what we have " ;-)
One good thing might come out of the process. The lady I spoke with said that she would submit Hubby's HHA renewal NOW (it expires this month)
Let's hope she has a little more pull in getting it through beforehand, but I wont hold my breath, it is the V.A. after all.