My Day in 3 Words

Caregiving had a bumpy night last night but no big deal, honestly. Just a disruption to my sleep but, water off a duck’s back this time.

Later in the day as I was tidying up and putting away laundry, I passed by Hubby who was eating some lunch.

I looked over at him and smiled as I was passing.

He smiled back and said,

“I love you.”

Pop Goes the Weasel

When you were young did you ever play with a Jack in the Box?You twisted and twisted the handle to play the 'Pop Goes the Weasel' song knowing full well that 'Jack' was going to pop up and every time he did you still jumped.
There were times if he wasn't put back in the box just right; after the 'pop' part of the song, there was disappointment when the lid sprung open and 'Jack" never appeared.
Some days this is how it is with Hubby and Lewy Body Dementia.

After Hubby's fever the other day he didn't have the 'bounce back' I was expecting,
the lid opened,
but no pop,
until,
yesterday and today.
Sun- Hubby was unresponsive
Last Night -Hubby talks about his problems with Lewy
Sun- Hubby cant walk
Last night and Today- Hubby has walked all over the house
Sun- Hubby doesn't eat and when he finally does he must be fed and all drinks must be held so he can drink through a straw
Today-Hubby has a good appetite. Too good in fact. He's eating everything he can find.
Sun- there is no way Hubby could have assisted with a sink bath (his normal bathing now for quite a while) Today- Hubby gets INTO the shower to get cleaned up
Sun- Hubby would barely open his eyes even when spoken to
Today- Hubby tells me he thinks his glasses are getting better. Yeah I'm not sure what that means either.

So I was hoping Hubby would  'pop' back right away and he didn't. I was disappointed. I feared there would never be the 'pop' this time.
But through the power of prayer, I whined enough for it, Hubby got better, if I can use the word better.
Oh he still doesn't remember that we got married and he isn't sure exactly where he is most of the time. The same cognition problems are there. I don't notice an increase in those. The 'people' I cant see are still here. But Hubby is better in that he is calm, accepting. Not as agitated, even cracking jokes.
Just last night he was talking to me about his illness.
I am honest with Hubby about it. I am matter of fact and I don't give excess information.
Just the facts, mam. And then I let it go unless he has questions.
I assured Hubby that I would do everything in my power to care for him and keep him safe and comfortable at home.
I think he is most satisfied with the hard time thinking diagnosis and blocks out the rest, but hey, as long as I know, it's OK.
Some time had passed after this discussion and Hubby said something that didn't make sense.
I think he realized it because when I asked "What?", he laughed
He said "I thought you were tracking me on my mind."
I just looked at him, smiled and laughed.
Hubby grinned real big and laughed too, saying, "Oh, just shut up!"
We laughed really hard.
It was a great night.

POP! Went my Weasel when I stopped to tie my shoe.

***Now that I got that off my chest ***

Whew.

OK. I seriously feel a little better after lodging my complaint with the complaint department (aka my online caregiving friends)
You guys understand and don't judge when bad days are had. When emotions are sitting right on shoulders.
You have walked the path of fear and frustration and nerves (the good and bad kind)
You are quick to offer support and encouragement. My prayer warriors run to the throne, my finger crossers even cross their toes, my well wishers wish deeply and wholeheartedly and my pixie dusters sprinkle pixie dust (which I like, by the way)  by the bag full.
I can't imagine what it would be like to travel the journey without you all.
I am a blessed woman and I so appreciate YOU!

Today Hubby struggles beyond behavior.
Perhaps the oncoming illness made it's presence known in the form of noncooperation and  hostile remarks.
Hubby has run a fever.
Fever and Lewy Body Dementia do not mix.
One of my greatest fears is fever.
Fever tends to cause more problems.
Hubby's poor brain does not need the 'baking' that seems to happen when fever is present.
Fever makes Hubby more confused.
No, that's actually an understatement.
Hubby is just not there when fever is.
Hubby can not walk, rise, sit up, move, respond.
Hubby can not cooperate and must be physically manhandled for everything including bathroom care.
This is only our second bout with fever since his diagnosis in 2007.

Perhaps Hubby's swift 'drop from the cliff' coupled with the encouragement I received made me a little more accepting of his recent behaviors and my helping lay aside my  feelings of defeat.
Maybe God knows I work well under pressure and I'm always up for a challenge so He knew a major change would rally me to action.

Either way I have a new found resolve to keep going and persevere.

Today Hubby was unable to respond to my verbal directions that actually had to be modified to physical limb movement using both, hands and feet.
Let me go on record, I am NOT a very good dancer!
Oh I'm great in the fast paced, on your own, need the space or you get hit style. But the close up, move together in rhythm needs LOTS of work!

So are you up for a smile moment?
I actually found one. Had I not been looking I would have missed it.
After getting Hubby up out of bed, for wheelchair transport, I was able to get Hubby onto the toilet. I left him there to care for the bed linens.
Since the toilet seat is a handicapped one with rails/ handle bars/ whatever you call them, I felt comfortable to leave him there while I attended the bed and he did his business, or what was left to do. He was gripping the hand holds as I walked out. A few mins later (yes I have learned how to make a bed quickly) I walked in only to find Hubby had leaned back too far and was sliding off the seat!! Stupid stupid me!! OK enough of that!
I rushed to Hubby and was having to speak loudly to him and repeat his name several times in order to get him to even respond to me. I seated him upright and started the underclothing application.
But couldn't understand what I needed for lifting feet.
I was finally able to get his hand on the hand rail I installed on the wall and pull him to standing. When he raised to his feet I said loudly , "Honey! I'm going to  pull your clothes on!" Once accomplished I tried to get him in the wheelchair. The death grip he had on the rail was almost impossible to loose. Over and over I repeated my request and saying his name at times. I was sweating and struggling to turn him but he wouldn't let go of the bar.
I finally pried his hand from the bar and he grabbed me. When he did he grabbed my side, then my pants and started pulling on them as though they were his and he needed to remove them for toileting (Smile moment). I got tickled at this and I took a moment to pray for the strength to accomplish the task and him to be aware enough to help.
I don't think he was ever aware enough to help but I did have the strength to accomplish the task. I'm not sure how I got him in the chair but I did and finally was able to get him into bed and settled; For now.

Hubby hasn't eaten all day despite the deliveries of food. That's OK, I pushed the fluids though and offered and he just ate a jello fruit cup.
I had to hold his cup and straw and feed him because he can't do it.
Tomorrow is another day, I'll make it through.

Some Days

Some days I just want to scream
Some days I just want to shout
kick
stomp
run away
cry
twirl around like a tornado
throw things
wail
be the mean girl
sit down
and give up
Some days I can't think.
I can't find the energy to exert on it.

I haven't thought well for a few days
I didn't even want to type right now,
but I didn't want to be silent, more.

I'm tired all the way to my heart.
I'm feeling empty.
I want to smile and laugh but the efforts feel forced.
I want to offer encouragement to others but I can't find the words.
Brain fog is rolling in and I need to combat it.
I try to read my Bible but the words all run together.

It's days like these I wonder. Will I survive caregiving?
And if I do, what will I be like at the end?
That thought frightens me.

I'll dig out of this hole I feel like I'm in.
I'll look back at it and say,
Some days I sure could be whiney

I don't know what that means

Hubby and I have been trying to converse about a couple of things.
The confusion that comes with his Lewy Body Dementia has really taken a forward jolt leaving me to scramble for a thesaurus when trying to talk with him.

His conversations are nearly nill anyway but after shortening compound sentences to singles; then single complex to simple; and simple to "old western movie indian"; and sometimes, just single words with a look.
I do struggle to make connections at times.

For instance. Hubby asks me every day what day it is. Sometimes he asks me more than once. I can usually respond with the correct day. I say usually because sometimes I get my days mixed up too but that is completely beside the point.

On Wed, Hubby asked me if it was a diff day. I didn't think too much of the wrong day conversation as we have had it often and I tell him the day. Wed was the correct one. We talked about Wed.
So, today is Wed?
Yes, today is Wed.
What day is Wed?
Today is Wed.
No, I mean what day is Wed?
Oh, Today is the 30th of March
What is today?
Today is Wed.
(confused look) I don't know what that means

At this point I say that Wed is the middle of the week and a day that the aide comes.
Hubby seems satisfied with this answer and I think nothing more of it

Today, there was a flurry of activity in the house.
2 rambunctious grandsons hungry for food engaged in a discussion of some type with their mother.
The kitchen is located off of our bedroom.
Hubby motions for me to come over to him.
I approach the bed and lay beside him.
He asks me who's talking.

I tell him Daughter in law is talking to the boys
Hubby is confused as to who daughter in law is. This is not new to us and I don't feel so alone in the forgotten pool. (Welcome to my world daughter in law)
He asks what she is doing
I tell Hubby she is talking to the boys about lunch
Lunch?
Yes, it's lunch time and they are hungry.
What?
The boys want to eat.
(confused look)
Daughter in law is making food for the boys.
(confused look) What is she doing to the boys?
Feeding them.
Why?
They want food.
(silently Hubby stares at me and says) I don't know what that means.
It's OK, she can take care of it.
(Hubby looses his confused look and closes his eyes as though relieved)

Oh Hubby, I am grateful you feel confidant enough to tell me when you struggle to understand.
I'll understand for both of us and make it OK for you.
OK enough for you to close your eyes and feel like everything is OK.

Another day starts at 4 AM

But not like the first.
One of the features of Lewy Body Dementia is REM sleep disorder.
Hubby acts out in his dreams hitting and punching.
Most people during dreams are in a "frozen" state.
Ever have a dream in which you tried to get away or do something and couldn't move?
Well that's because you can't move. Your body is semi paralyzed.

With Lewybodies the poor dreamer is in a real struggle of falseness and reality.
False thoughts in the form of dreams and the reality of attacking, hitting, punching and/or kicking.
All dreams seem to be violent in nature which at times can be distressful not only for Hubby but for myself when I'm on the receiving end of the nightmare. You would be distressed too if you were waken from a sound sleep with a smack upside the head, I'm just saying.
And I've mentioned before about the poor bedside table.

This morning was no different than any other REM sleep moment other than the jolt awake did just that,
woke me up,
so here I am.

Since our last 4AM fall down Hubby has been doing OK. He is sore more than anything.
He requires more assistance in rising from the bed due to the soreness but other than that, No marks across his face and only minor bruises on his arm where he hit it on something.
He has resumed his sleep pattern of most of the time.
As for me, for some reason, I am just beat.
I think for the last 2 days I have been more tired than usual.
I find myself napping for even 10 mins a few times throughout the day.
I will chalk it up to the dreary cold weather we have had again.

SO I am happy to report that we are in a holding pattern and I'm quite happy with that.
Today Hubby's aide should be here for 4 hrs and I have no errands to take care of or groceries that just have to be purchased so I think I shall call a friend and see if she would like to have lunch with me.
I need a little down time when caregiving is on a back burner of my mind and not a front runner.
I don't get to do that often.

It's a good day, no fooling, and I hope you can say the same. :)

4 AM With Lewy Body Dementia

Coffee is ready and I started writing this at 5:45
My day started early

4 AM
Waken by a noise I lay in bed thinking in micro seconds.
What was that?
Hubby is in the bathroom, sounds like he closed his underclothes drawer too fast.
listening,
silence
What was that?
Sounds like the toilet tissue dispenser? going around too fast?
pause
again? I'm going to need to buy more tissue. I hope he doesn't stop up the toi...
What was that?
humming?
No,
groaning,
No,
that is a sound from your gut!!

I jumped out of my bed and carefully opened the door to our bathroom.
I always take care in doing that as the door from our bedroom opens into the bathroom. On more than one occasion I have hit Hubby with it upon entering so I'm always cautious.
The door is wedged, my heart sinks.
I give a little, yet careful, shove only to see Hubby had slid face first into the other door that enters our bathroom. What a scary and awful sight!
I closed the door and ran in prayer to the other one that opens outward. Carefully I opened the door as not to make Hubby's head crash into the tile floor. The more I opened the door the more he slid down. Had those 2 doors opened inward I would have never been able to get to Hubby short of ripping the door off with my bare hands. And believe me, I would have done it in a second.

I surveyed all I could see and tried to get Hubby to converse with me which was not easy. I got him as 'comfortable' as one can get on a tile floor but after the position he was in, anything would have been 'comfortable'.
I tried to beat myself up with, why didn't you get up at the first sound?
I just as quickly cast that thought aside, it's not helpful at the moment!
I continue to pray for strength, emotional and physical, along with knowledge and wisdom

Still trying to survey anything I could visually and verbally I could tell by sight and hearing that Hubby was able to move his upper body with no increased pain.
Survey said no broken arms or ribs. Thank you Lord.
I could see him moving his head and trying to communicate with me
Survey said, neck is going to hurt but doesn't appear to cause him excess pain when he moves it, so not broke. Thank you Lord

The slide had him in a very precarious situation, but if he had to go down, perhaps the best one as not to have hit bones extra hard. Thank you Lord
My heart is just sick for Hubby. Thank you for compassion Lord

Finally able to get Hubby to communicate he asked me where he was.
I tried to simply explain and asked him if he could get up. No go.
We can wait, sometimes it takes a while but the cold floor had me a little stressed for him and not being able to see his face and survey his front visually had me stressed for myself.
I got the gait belt to see if I could help get Hubby upright with my assistance. He didn't flinch when I was able to reach under him and pull on the belt a little.
Second opinion on ribs, same as first.

After some time had elapsed and trying to coach Hubby in getting up I was becoming fretful. I wanted to call for help. Hubby can't move or communicate clearly with me until I mention this and his answer is NO!
Every suggestion,
I will call a first responder, they can check you out. NO!
I will call brother in law, he has helped once before. NO!
I can wake up Niece and Daughter in Law. NO!
He understood those requests and conveyed his answer clearly and directly! hmph. 

I agree to comply with his wishes as long as he works with me, after I collected my tears that had fallen. Thank you Lord for stress relieving cleansing tears.

I was finally able to get Hubby into a sitting position and take a look at him. He may have a bruise across his face and he does have a scrape on his arm. I didn't see anything else but I'll bet he is bruised on his chest if from nothing more than me tugging with the gait belt :(

I make sure Hubby is steady and I get the hoyer lift.
I explain to Hubby what I am going to do.
He is confused but agreeable.

Some of you that have read this blog in the past are probably grinning at the thought of us using the hoyer again.
I will admit I smiled at my own self in attempting it again.
Thank you Lord for the Veterans Hosp and them supplying the equipment we need.
I was able to pull Hubby around, get the sling on him and get him jacked up.
(jacked up made me LOL)
Our only mishap this time was my sling connection to the bar was on wrong causing Hubby to try and avoid hitting his head. Oh well, too late to change now. Hoisted him up , slid a chair under him and got him lowered.
They say practice makes perfect.
Next time, and yes I am sure there will be a next time, maybe I'll get it completely right :)

YAY Hubby is upright in a chair.
I make sure he is stable and I retrieve the wheelchair to transfer him into and to the bedroom.
Mission accomplished.
We even got new underclothes on so nice and dry and in his own bed. Covered with blankets and warm.
I press the button to the coffee pot and while I wait for it to finish I snuggle up beside Hubby as he drifts off to sleep.
Safe,
Comfortable,
Loved,
and
Unaware that he even fell. (He asks what happened to his arm)
Thank you Lord for removing that memory from his mind.