Documentation

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!!

We all fall down

We have had our fair share of unsteadiness for the last couple 3 days!
Before then, Hubby took a downward turn in cognition but had some 'busy and awake' days.
Those days followed by a sleep crash. Waking only when reminded to use the bathroom or to eat.

Besides the downturn in cognition Hubby has had mobility problems. We've had to retrieve the wheelchair on 2 separate occasions for transport.
On one occasion Hubby made it to the kitchen but on his way back he froze up and was unable to walk. I tried holding him and guiding him but he never could understand that he needed to move his feet.
The other occasion and on a separate day Hubby was able to walk into the kitchen to retrieve a can of chips and toddle back into the bedroom, but through the door was as far as he got before he froze.
Unsteadiness accompanied Hubby and while I was busy in the kitchen, Hubby lost balance and fell forward onto out bed using his hands and arms to support himself as he bridged the distance of 3 feet. I walked in to find Hubby clutching the can of chips and keeping himself supported.
I was able to upright Hubby and balance him long enough to slide the wheelchair under him and get him moved to safety.

I fear we may lose our walking abilities sooner than I anticipated if we continue on this course.
I have made a couple of extra efforts in providing the safest and easiest way for Hubby to rise from his sleeping position but even doing that has proved futile.
For the 3rd time, in as many days, I have found him lying on the floor wedged beside his bed.

I think the most frustrating to me is that the falls are always when I have stepped out of the room.
I purposely moved my computer desk and household bookkeeping into our room so Hubby would not feel so alone upon waking. I practically live in there with him, so afraid he will fall and get injured.
Feeling a little 'captive' I bought myself a camera and monitor. A nice little gem so I can keep an eye on Hubby if I need to step outside or out of the range of  site or hearing. Yet he ALWAYS manages to fall when I am no where around!

Gentle coaxing and demonstration is usually the key to getting Hubby to understand what he needs to do to get up from the floor.
Even at 2 AM when he fell last night. I jolted up so suddenly I made myself sick. Poor Hubby, I got the gait belt and used it as a pull coaxer for the direction I needed Hubby to move and un-wedged and moved him enough to support himself leaned against the bed. Hubby looked up at me as I apologized through the huffing and puffing i was doing. I told him I was sorry for having to tug and pull on him. Hubby's reply. "We have to do alot of that. I may get pulled in two."
He smiled

I did too

Then I excused myself from the task so I could sit down and let my heart and stomach settle and cry for a min.
I don't do that often, maybe I should.

After I was able to get Hubby up righted we tried to walk into the bathroom. His walking ability has declined so much so quickly it seems. He can't move his feet. The best he has done for a while is just about drag one foot. No he hasn't had any type of stroke. He has just lost the ability to know how to use it. His legs want to move and he can 'spring ' up and down a little but moving the feet is a whole other feat. (I just made myself smile so I'm keeping the word LOL)

I'm very tired. I've written and re written this about 4 times already. I tried so hard to give it a positive tone.
But the reality of this day is I can't.
Hubby rests now.
And I have things to do.

It will get better. I will adjust and re group and trudge forward and smile.
That's what I do and I seem to do it well.
Just not today.