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.

"Are you looking at my poptart?"

The other day I woke to sounds of 2 of my grandsons having breakfast.
The 3 year old does not wake up like his 5 yr old brother. 5 yr old is mild mannered and cheerful.
3 yr old is, well, like me. Cranky before I have had a cup of coffee.

As I lay in my bed thinking that, yes, I was alive and yes, it was ok to be that way I heard 3 yr old say in his grouchy whiney annoyed tone, "STOP LOOKING AT ME!
5 yr old assured that he was not looking at him. Then 3 yr old asked in a much sweeter tone, "Are you looking at my poptart?"
This comment made me smile before my feet ever hit the floor. Some days I'm not so grumpy when I first get up.

Today is a non grumpy day.
Today I had a plan. I made arrangements to visit with someone on line to talk about my experience with caregiving for Lewy Body Dementia and my decisions to blog.
I was actually looking forward to it AFTER I mulled over the invite. At first I was hesitant. What if I said something stupid? I can backspace stupid in print, but you can't backspace actual words. Many times I wish I could. sigh

Today I set my alarm. I didn't want to sleep in and not have had my coffee before the program started.
I always get a little nervous when I make a plan. Especially these days.
I prayed that I would be able to devote 30 uninterrupted mins.

I asked that if immediate caregiving needs had to be met I had time to accomplish them.
Ask and ye shall receive. Hubby woke and his immediate needs were cared for. Bathroom, bed linens, coffee, breakfast. He was settled.

Hmmm, I forgot, I took responsibility for the 2 grandsons.
Please Lord, let them rise early enough to be cared for and settled also.
5 yr old woke cheery and with a good morning. Breakfast served.
3 yr old woke grumpy but manageable. Breakfast of several different types offered, rejected, offered once more with a glare then served, shirt changed, mood better.

The boys and I started watching a movie last night that we did not finish and at their request I continued it for them. Boys settled.

Niece was still in her room sleeping, so, niece settled.

At this point I had 5 mins wait for my phone call. I grabbed a cup of coffee and a poptart to settle myself in a quiet place in a comfy chair. I realized that I have neither of these things! I chose a random chair in the quietest part of the house yet close enough to hear Hubby if he needed me. Took a bite of poptart then decided I didn't need a poptart on my teeth or gumming up my mouth! Ran for a drink of water! (I didn't want to drink all of my coffee up) Then I had to use the restroom!! I had 2 mins before my call!!
Ever try to use the bathroom in a hurry? yeah, wasn't working, relax, ahhh.

Pulled, zipped, washed and settled and took the time to bow my head and ask for the words to come freely and clearly whatever they were. Prayer answered.

The visit went off without any issues :)

All Blinged Up and Nowhere To Go

I think I have mentioned one time (or maybe 2) before that Hubby has a collection of old junk jewelry and watches.
There was a time in his life when he bought and sold jewelry and scrap gold.
Now probably to many this sounds like a wonderful opportunity to grow my collection of my own bling, but truth be told, I'm not much of a bling kinda gal. I learned to avoid this when Hubby actually had to sell some of mine because we needed the money. Food was more important than a shiny bobble.
I have a few pieces I like but usually, when I do wear my bling, it consists of mostly costume jewelry.
Hey if I lose it, I just run out and spend another $1 on something new. :)
Besides, I'm a gal that likes to work with power tools and many times jewelry hinders me so I only wear it occasionally.

Hubby, however, likes his bling. He had some custom made pieces and sold them after he tired of them.

*Hubby used to be a car dealer so buy and sell is in his blood

Since Hubby's decline with his Lewy Body dementia he has little to no interest in any of the things he used to do.
In the past I've tried countless times to get him interested in things but realized my pressing only distressed him which in turn stresses me and neither one of us need that.
Hubby does have an occasional interest in scavenger hunting. He searches through the drawers and cabinets.I don't always know what he is looking for and when I ask he normally just says looking. So OK.
He pulls out every piece of paper and every item he comes across. A baggie full of change can easily find it's way into the floor also.
Oh well, Hubby is happy, I think.

Hubby came across a 'gold mine' one day when he found his misc scrap jewelry and watches.
He was so very pleased. He put them all on his over bed table for display and survey. He asks me to come and look at them and tell me what they are or what I can see about them. He asks if I know where he got them, to which I answer I have no idea as I was not with him when they were bought.
Some pieces I don't think I want to know where because, they are teeth caps!!

Seriously...Look!

ewwwwwwww

I will openly confess that his obsession with these items can irritate me when I'm having an exceptionally bad caregiving day. I can't even begin to tell you how many times I have been asked to set the hands on a watch that does not work!

breath...

I did manage to get one of the watches he had, operational by inserting a new battery in it. GO ME!!
Happy Dance!
This did not, however, prevent me from having to continue to set the non functioning watch (non battery type).
Oh well.
moving on...
Like I said, Hubby enjoys wearing his bling.
He found his fathers dog tag from his service during WWI
Hubby wears it along with a necklace.
I've noticed Hubby wearing different rings at various times. A dented wedding band (not his) a High school class ring (again, not his) rings without the gems in them, etc.
But this morning I woke to Hubby wearing 2 watches on one arm. He even thought this was a funny sight and asked me to release him from them LOL!

Does anybody know what time it is?

Everybody Smile

Hubby is still on the downward slide. Slower but still noticeable.
Yesterday he had NO idea who I was. Usually he knows me as Kathy, the woman that takes care of him and the one he is supposed to be married to.
But yesterday he had no idea who I was. Asked me who I was on more than one occasion; and if I read his reactions every time I saw him, he thought I was a different person each time. He was pensive about my presence but accepted it.

Once he asked me if I knew him and I answered yes, we have been married for more than 29 yrs!
He said WOW! LOL

Today he once again remembers me as Kathy.

We shared a big laugh this afternoon.

I reached into his candy stash and told him I was "Stealing" a piece of his candy.
(Reeses PB cups! You would too)
He laughed at me and said, "I forgot I had that."

I smiled real big and said,
"Good thing for me you forget. You don't remember you have it and won't remember I stole it!"
We laughed!!

It's a nice moment :)

Pushing Our Luck

So Hubby and I were able to be present at the birth of our grandson a few days ago. Not even Lewy Body Dementia could stop us that time.
We had to leave earlier than I wanted to but Hubby declined and getting him home to safer and more comfortably familiar surroundings was priority over my heart desire.

BUT my head started to think...

We did have a few good hours, Soooo... Surely we could do it again, this time after a nights rest and planning. Surely?

I made the executive decision that we would go back.
Knowing it takes a GOOD 2 hrs to get ready to go anywhere I allowed plenty of sleep time and as there was no schedule we needed to be on, it seemed like a good thing. I should have known there was trouble looming in this the moment Hubby asked if I could go without him.
Uh, NO! If you don't go I can't go. (sad face)
Hubby agreed to finish getting ready.(Happy face)

I showered while he ate.
Now Lon Kieffer, aka DOC, founder of Defender of Caregivers has a FB posting that say..
"You might be a caregiver if..."
I posted the following...

You might be a caregiver if you shower and use girly smell good shampoo, conditioner, body wash, lotion , body spray, powder, hairspray etc then shave your husband to only smell like aftershave ;-)


2 hrs passed and I was still trying to get Hubby out the door.
We got all the way to the front door when he decided to stop and speak to all the cats outside the window (actual cats). My mind is pushing, Hubby, you can actually walk out the door and speak to them as we move toward the car.

I think I'm getting a little anxious at this point.
FINALLY Hubby makes it down the 2 steps when I realize, I already loaded the wheel chair. I run to get the chair out of the trunk so he can ride to the car.

Loaded and locked and away we go. Hubby Niece and I!
It was a nice trip there. It's over an hour drive but the anticipation of seeing our daughter and son in law and, who am I kidding, that NEW GRANDBABY!!! made it seem to go by much faster.

Son in law went on a lunch retrieval after we arrived so we all enjoyed a nice lunch and visit.
We pictured and paparazzied the baby and our daughter and son in law.

Hubby was a little needy but all due to the unfamiliar surroundings; so, no biggy

UNTIL

Hubby had melt down mode.
While sitting in a dining room chair, hubby slumped over and could not sit upright or stay in the chair. I was eventually get him propped up enough to keep him supported and he eventually was able to support his own self  in the chair. I told Hubby I felt it was better for us if we went home to more familiar surroundings. Hubby was reluctant to leave but agreed so we made an early departure.

On the way home I decided that travel would now be out of the question for us. I feel fortunate that Hubby was able to regroup but how much would our luck hold out on that ability.

Once we arrived in town Hubby asked me to drive to get something to eat. I really didn't think it was a good idea but he was out and maybe he was feeling better so I agreed. As we headed down the road I asked Hubby where we were going. He never did tell me just said , turn, turn at certain roads. Frustrated I gruffed, "Where are we going, there is no place to eat in this area!?"
Hubby decided he wanted to drive down by one of our rental homes. The same home he had been talking about moving into and on his own but I don't think about THAT part until I pull up into the driveway. STUPID STUPID ME!!!
Hubby opens the car door and proceeds to get out. I ask Hubby to explain why we had to leave our daughters because he can't sit up yet he thinks he can walk around a piece of property. Hubby stares at me. Niece, who was in the back seat, suggested Hubby might need his walker. I snapped at niece to sit quietly and stop offering suggestions.

Hubby clutched the car door for a while then a very nearby tree for support. Realizing he would not be able to proceed any farther he decided to get back into the car.
Sneaky Hubby!! By this time I was a little more than miffed.
Hubby closed the car door, I said buckle up as I rounded the corner and headed for home.
Once we hit a main street Hubby told me to go one direction and I went toward home.
Hubby, annoyed that I wasn't listening to him made a "Well, SH**" comment. I told him that those were my exact sentiments.
The LAST thing I wanted was another incident that had to involve the police because Hubby refused to leave somewhere.
I didn't want it for him, and I didn't want it for me.

I HATE having to use the authority I was given. More than anything I have tried to preserve his dignity throughout this entire process. I REFUSE to call his disposable undergarments as diapers. It's feels degrading for me to say it and I correct him when he does. I NEVER say I need a baby sitter for him. Hubby isn't a baby even though he can act like one at times. I'm not to bad about acting like one myself. Read up about the sad face remark.
Hubby is losing SO much of his dignity. I am trying so hard to hold on to every shred I can and when I have to make very hard decisions I feel like I am ripping it off him like a piece of flesh and it hurts, even me.

So I believe we have reached the end of our going.
We shall now remain home unless we have Dr appointments, I try to schedule those as far between as possible.

I've always been good at pushing my luck. You can ask my Father.
He has been know to say to me on more than one occasion,"You're pushing your luck!"

Lighting a Furnace

rattle rattle rattle!
rattle rattle rattle!
Ever hear the sound of a crinkling plastic bag?
rattle rattle rattle!

Tired from a wonderfully exhausting life moment Hubby and I went to bed early.
Snuggled under covers and cozy I fell into a sleep pattern.
I can't say drifted, because I don't drinft. Within 5 mins of head touching pillow, I can be asleep. Anything beyond 5 mins and I think I have insomnia!
Always have been that way.
Sleep is my escape.
Hubby would get SO annoyed at me for this ability.
He has always been one of those insomnia people.
I feel bad for th...zzzzz

Last night I was way into an hrs worth of mental and physical regrouping when I heard it
rattle rattle rattle!

It took a min to recover and survey.
We have no inside animals so that was not an option.
I rolled over to see Hubby lying on his side, arms hanging off the bed into the trash can where I place plastic bags as liners.

I get amused at this only because earlier Daughter in law and I were talking about getting rest and I asked her to pray for me that I would not only sleep, but rest.
I forgot to ask her to pray the same for Hubby.
So I lay there smiling as I reached over to move Hubby a little and distract him enough for him to roll over and away from the trash can. It worked.

For 30 seconds

rattle rattle rattle!
I turn back over to see Hubby's outline leaning off the edge of the bed. I awake more and pull on Hubby's shoulder to ask what he is doing.
Hubby is VERY annoyed and in not so nice language he tells me that he is trying to get the blankety blank furnace lit.
I'm stupid and ask, "What?" We don't even have a furnace to light so I thought it was a valid question.
Yes, yes, I know please don't rub it in.
Hubby repeats just as, if not more so, annoyed and not so nice.

Now I have some choices here.
Respond in kind and fuel the emotions for the non existent furnace to flaming, leaving me upset for the rest of the night and Hubby ...well I'm not sure what he would have remembered.
Or gently encourage him to try and light the furnace without using the trash can.

I choose the latter which was in actuality the correct response on my part but aggitates Hubby even more to suggest he do something without the proper equipment! What is WRONG with me?!!!

I refrain from under cover giggles, perhaps my finding the humor was a result of being overtired, who knows why I do the things I do ;-)

I suggest to Hubby that I really think he is dreaming.
Yep, I have done it now! Hubby flames, "Dreaming?!"
I agree with myself
Hubby pauses then tells me (more not so nice) he will get a flashlight and SHOW me that he needs to do it and everything else about it!
I stroke his head for him.
Hubby releases some tension.
Another pause.
And then a Gruff, "Well, OK"

Hubby settles down, I stifle more giggles and I pray he is able to sleep and rest.
I say Amen....zzzzz

Another Life Event

Hubby and I have been anxiously awaiting the birth of our baby's baby!

 Mr Aiden Connor was born at 4:09 AM March 7.
22" long and weighed in at 9 lb 9.6 oz!!!

I don't know if I can stop smiling :) And you may be thinking, awww, first grandbaby? Nope!!!
The feeling never gets old!



 Hubby and I had been talking about baby's arrival for a while. We made plans on going to be there. It's a trip of 1 1/2 hrs and with Lewy Body Dementia, trips of any distance are becoming more difficult to make. I wondered if an overnight hotel room would be our best option as babied do as they please for coming into the world. We were offered a place to stay at our daughters but I declined as some of Lewy's needs are more than I wanted to burden our daughter with (incontinence and leaking pull ups when Lewy won't rise to go to the bathroom) and their home isn't handicapped accessible as most homes are not. Unfamiliar territory is always a challenge for Lewy and Hubby is easily confused.

Upon our arrival to see daughter I quickly changed plans and decided we were not leaving her. We stayed in the room at the hospital all night.

Over the course of the last few weeks hubby has been pretty confused. He has his good days and a GREAT Sat in there for which I feel truly blessed!
Decline with Lewy Body Dementia, as with any dementia is inevitable and I MUST remind myself that Hubby can not control what is happening to him but I can control how I react to him. I'm not always the good wife, Some days I should be awarded with the "Good Wife" statue and other days I should have the title stripped away by force and be beaten with it. That's life though.

So our trip to see our baby have her baby happened. I didn't get to stay as long as I wanted. (I suppose short of having them live in the house with me is not long enough LOL) Issues cropped up with Lewy and it was in our best interest to get Hubby home and make him comfortable. The trip and the stay has taken yet another toll on Hubby but the GREAT news is that we both got to be there for our newest grandchild. Hubby was able to participate in another life event and for that we are so very blessed. Lewy didn't steal that moment!

Pappaw said "Hello there Big Boy!"

Caught Off Guard

Hmmm.

I've said before that Hubby has had a downturn.
His Lewy Body Dementia has caused him havoc in his cognition.
I'm having a difficult time sorting out his words and keeping track of his confusion.
There seems so much of it that it is now the normal.
We have lots more "people" in our house and one guy that is always looking for someone and another that preaches. I told Hubby that the preaching didn't bother me as long as the guy preached the truth ;-)
Hubby thinks it is.
The "people" are spoken of more often, maybe they have been here all along just not mentioned.
The GOOD thing about them is that they do not upset Hubby.

Hubby asks me more often where we are. I always say and he either gets suspicious of my answer, as if I'm trying to fool him, or seems surprised. He never gets upset about it.

He startles easily, has for a while actually but I can be looking right at him and speak to him, Hubby will jump high enough to scare me!
We leveled out or just adjusted to the new level of confusion so the ride, although downhill, is manageable.
Things are perking along.

What caught me off guard is, that tonight, I experienced a bout of lonliness.
As if it came out of the blue and landed on me, seeping through my eyes.

I'm not whining, I thought why would I even bother to blog about that feeling.
It's just one feeling.
It will pass.

My goal was to be honest about my life with Lewy Body Dememntia.
Tonight my life experience is that I feel lonely.
And you know what?
It stinks.
Tonight I miss my husband even though he is in the same room as I am and will sleep in the same bed as I will.

But you know what else.
It's just a feeling. It will not dictate my life.
I will probably miss him many more times while he is here before I miss him when he is gone.

I will, however, be OK.

I See the Light

"Honey?"
Hubby asks.
I look through the bathroom door into the bedroom as I gather clothes for the washing machine.
"Yes?"
"Come here and help me with this lamp."
I ask Hubby if he wants it off and he answers yes.
I set the dirty clothes down on the top of the hamper and step into the room.
I move Hubby's over the bed table to reach the lamp and touch it.

The light goes off.

I look at Hubby and smile making sure this is what he wanted.
Hubby looks at me with the 'I can't believe it was so easy' expression and laugh, smiling back.

Hubby and I laugh together.
I hold his face and give him a kiss.
I say "I love you."
Hubby says
"I love you too."

It's a great moment.

Vent

I'm only doing this because I need a vent about Lewy Body Dementia.
I have found that through blogging I have a way to release my feelings and it becomes a way of self help. Keeping my thoughts and feelings sorted. Allowing me to re read them and realize things are not as bad as they appeared at the time.
I am not looking for sympathy or a pat on the back.
I just want to vent.
As I stated in the writing of this blog, this is the life Hubby and I share and these are my thoughts and feelings.

I've tired at the downcast posts I feel like I've written lately. I want something uplifting to share.
Today won't be that day though.

I'm tired. When I do not get my allotted hrs of straight sleep I'm grumpy.
Today I am grumpy.
I blame Lewy for this and not Hubby. And Yes, I do differentiate between the two.
I don't like Lewy but I love Hubby.

Lewy was up ALL night! Wandering the house, clutching everything to keep himself up righted.
Rattling the dresser, disrupting my nightstand and banging the bed. Scooting the kitchen chairs and clinking utensils and dishes forging for food. Then the trip back with items in shaking hand.
Unfortunately the items were liquid and he spilled it on the bed causing me a quick jump up and blanket removal while I realized I was walking in  the stream of liquid on the floor. Chocolate Yoohoo, YOOHOO!!

You are right in your thoughts, the bright side to that is it was only yoohoo.

It started with the wipe out from last Saturday. What a great day that was for Hubby. The trade off for it is very high and seems to be rising.
Lewy started taking over. Sleeping more and extra mobility problems. Then last night serious confusion, as if regular confusion isn't enough.
How do I explain that? Regular confusion is just wondering and OK with the answers. Serious confusion is completely lost with a concentrated expression on everything. Did that make sense?

This morning Lewy is still awake and wandering in search of more food.  It doesn't matter that he already had breakfast served, he forgot, and he wants to eat again so I prepare him something else. While he waits he stares. He stares into the other room and again that concentrated expression comes across his face. Lewy asks me who is here. I name all of the House Occupants.
Lewy wonders because the man in the other room looks like he is looking for someone.
The man is just standing there looking as if searching a crowd of people.
Of course I do not see a man so I once again name the people in the house and assure Lewy that we are the only ones here.
Lewy accepts this answer with suspicion but accepts non the less.

I feel the necessity to inform House Occupants of the condition of Lewy today.
Hallucinations are one of the core features of Lewy Body Dementia.
Not wanting House Occupants to be upset by this behavior I calmly explain what may need to be expected throughout the day and if face to face with it how they should react to Lewy.
House occupants are as understanding as they know how and agree to not get frightened by the confusion and respond as I wish.

Lewy retreats to his room to lay down.
I follow to whine and complain about him in my blog.
Lewy decided he wants to sleep.
Hmmm I think I will need to vacuum this room.
Sorry for the disruption Lewy.
Take it up with your friends if you have a problem with it.

Afraid to Fly

I keep reminding myself that last Saturday, was a GREAT day!

I need to keep reminding myself because,
ever since then, Hubby has been wiped out.
Physically and mentally.

Hubby has been sleeping a lot more. He sleeps all the time so how can that seem possible?
I have to wake him to eat and use the bathroom but there are times he wont even budge to do those.

When he has been awake he has been in a huffy mood. I'm not sure why but I remain calm and agree with him about whatever.
Why?
1: He will forget what he said,
2: He can't walk far to go anyplace if he talks about leaving,
3: He isn't hurting himself or me
4: He thinks I'm a pretty good ol gal for taking his side, especially against that mean woman that has him locked up here (yep, that's me)

I win all the way around :)

Conversation is NILL and what conversation that there is, is completely off the wall or barely coherent.
Last night Hubby became upset with the fact that the people driving the airplane weren't keeping it steady while he tried to get up and walk to the bathroom.
This revelation came after a few earlier questions about
how did we get on the airplane
and
when did we get an airplane.
He was serious in all of these remarks.

My replies, I thought you were afraid to fly. All 3 times.
Hubby never acknowledged my response and I didn't have to argue that we weren't and didn't, trying to prove I was right.
Smooth flying for me; I love to fly ;-)

I just hate that these times of conversation are fading faster and faster.
Trying to piece together the ramblings into something understandable is a challenge to my own mind.
My heart is holding up well. I'm dwelling on the good things.
Even when Hubby's feelings of doom and mentions of not being here much longer are the topic of the moment.
I just look at him and tell him,
"You can't"
He asks why
I tell him "You better stick around at least until that new baby gets here. "
He always smiles and his hazel eyes shine.

Showering the Baby

I've taken a couple three of days off from internet activity to concentrate on hosting a Baby Shower for My Baby!
Hubby and I are getting ready to welcome grand(son)child #6  and we are SO excited. OK I am so excited but Hubby and I are one so We is I and He is We, you get the idea.
I don't think Hubby fully understands and if he does it's hard for me to recognize it.

Hubby had a downhill turn for a couple of weeks. We dealt with things as they came and didn't come. To be honest I wasn't sure how the Party day would go with Hubby's decline. I know that lots of extra activity confuses him more than usual.  Hubby has a very difficult time processing too much commotion and it throws him like throwing water in a working toaster. It starts to short circuit and spark.

I offered to host the event because getting away from here with Hubby seems to be a mighty big challenge these days. Bringing the party to us was the better choice, Or so I prayed :)
I busied myself preparing for the event, Sister in law, Bless her heart, offered me transportation to shop for needed supplies while Aide was here. Niece was placed on the decorating committee. Poor Niece had to endure the craziness that is known as "Aunt is expecting company get your butt out of bed and help!" Yeah, it gets a little tense and drill sergeant-ish, just ask our Children. They will attest and can tell stories, on second thought, don't ask them ;-)

I love that I serve a Great Big God and that as my Father he hears my smallest pleas (please). Let us have a good day. We did. Not only was it a good day I would almost consider it a GREAT day for Hubby.

A cooperative and low maintenance Hubby for a day. No extra laundry, confusion didn't seem off the wall and not stressful for Hubby. Walking was much improved, slow and at times, upright and upright is something! Hubby walked into the room closest to us as we congregated for the festivities. I prepared him a plate of goodies and he seemed to enjoy them. After we snacked Hubby joined us to watch while games were played and gifts were opened. Although he wasn't an active participant, he was a present observer.
(Hubby even let me talk him into wearing pajama pants with his robe )

Snacks, gifts, games, pictures and lively conversation didn't phase Hubby in a negative way. God is GOOD!

Kathy, Hubby and Beautiful Baby with baby <3

So today Hubby sleeps. It looks and sounds like a restful sleep :)
He woke a few times to go to the bathroom and have breakfast. Supper brought him MUCH confusion as he didn't understand why we needed to eat at that hour. I like to eat at any hour as my picture shows! LOL
I realized looking at that I HAVE to take control of ME and get my head and heart on the same page working together for me. I count for something, why have I been so neglectful?

Today I catch up on a couple of days of internet fun but it feels like I've been gone for a long time. The internet highway is sure fast and you can get passed by and be left behind!!

I've branched out a little bit on my blogging.
Here, I have met a few caregivers. I love the support we can offer each other in our responses.
Caregivers are a uniquely and intricately woven group of people. Like a cord, alone can be torn in two but braided and banded together, strong yet flexible enough to keep each other supported during the times of caregiving hardships and, celebrate with during times of caregiving triumphs and moments of joy.


I've started to Tweet.
I know, you may think I've gone cuckoo but I decided to give Twitter a run.
I have a lot to learn yet on Twitter but I am hoping that I can use it as a tool to educate others about Lewy Body Dementia and help another Caregiver that, like I, searched for something, anything to help them through this often scary, confusing, lonely and isolating life known as caregiving.
I've learned so much about Lewy and Caregiving yet still have so much to learn about it.
I just want to share and encourage.

Our Groundhog Day

I made this comment to another Caregiver friend...

Life with Lewy (Lewy Body Dementia) is ever changing.
Just when you think , Hey, I got this! Lewy changes the rules hmmph!

Just tonight I ran into a situation that was new for me.

Hubby and I had a lady friend that passed away last Dec.
Another friend had stopped in to see us and inform us. He spoke to Hubby but at the time Hubby didn’t know who he was. Friend was pretty upset by it.

Hubby and I talked about the passing of lady friend afterward and Hubby seemed to understand.
Like I said, that was Dec.

Tonight, Hubby asked about our lady friend.

Now for the last 2 weeks Hubby has been on the downhill slide, tonight we were somewhere in the middle.

I mentioned that she has passed away and that friend came and told us.
Hubby was very upset. He had not remembered so the feelings were new to him.
It was very sad.

I hope this is not something that Hubby must relive over and over again.

I wasn’t sure how to deal with it so instead of insisting that he already knew and it was a couple of months ago, I just sympathized with him and we talked about her for a while.

Even though the moment was sad, for a brief moment, my husband was visiting with me and that was what I chose to focus on.

Gentle Reminders

It's been an emotionally tough day today for a vast many reasons.

Hubby for the last couple of weeks has been on a downhill slide.
Mobility coming and going at the drop of a hat.
Lots of extra wheelchair rides
and 
LOTS of extra confusion.

But we are gettin through.

My post wont be long, I know, faint, right?

Tonight as I was attending to Hubby he looked up at me and asked me.
"Am I supposed to remember you?"
I answered calmly and matter of factly
"Yes, I am your wife, I am Kathy, and I take care of you.
And if it helps, You love me."

Hubby smiled at me and gave me a kiss.

Hey, I'm just delivering the facts ;-)

Me and My Shadow

What a taxing week we have had, Hubby and I.

It's been one of those weeks where Hubby has been and more confused and lost and falling down more.
This is how our journey has felt.

Hubby lost his map. Insistent that he knows what he's doing he finds himself going in circles and taking wrong turns in the house. Not one to ask for directions he departs for places unknown in search of the familiar.
In doing so Hubby has been stranded in the floor several times with his flat tire.
I have found myself having to get him jacked back up and towed back to safety.
My emotional clunker putters us down life's highway spitting and sputtering at every bump in the dementia road has many days left me out of gas praying for the strength to push us onward. And Onward we go.

I don't know the reason I chose to write a traveling metaphor. It made me smile though, so there it is :)

I bought myself a small piece of freedom :)
When Hubby needed 24 hr care I purchased myself an audio monitor.
I was however rather disappointed in my choices I had. I just wanted a non descript audio monitor so Hubby could call to me if he needed me. All I found were baby monitors with soothing sounds and night lights. I felt a little put out by that. Hubby isn't a baby, OK, granted he can act like one at times and that was even before his Lewy Body Diagnosis. And I can act like one at times but we didn't need soothing lullabies and cutesy lights.
Other types were like walkie talkies, hubby would have needed to understand HOW to use one and with Lewy, learning a new task is so difficult when retaining old memories for tasks are fading anyway.
Price was another factor. SO much money seems to be involved in caring for a person with dementia.

I chose the least cutsey model available with dual receivers. I could walk around the house and outside a few feet and still be able to hear Hubby if he called.
Lewy's progression began to steal Hubby's ability to call out. there were times I would hear thuds and hurriedly go to check on Hubby only to find him lying on the floor as if he was supposed to be there.

At other times I have walked into the room and found Hubby had slumped from his sitting position I had left him in, into an awkward and uncomfortable position that required assistance. Not hearing an alerting sound when that  happened I was unaware of Hubby's situation until I found him because he wouldn't call out for me. There had been no telling how long Hubby had been like that.

One of my biggest fears is that Hubby will get sick and run a fever or that he will fall and break a bone. The latter prompted me to move my computer into our bedroom so I could stay with him and he wouldn't feel so alone and I could keep an eye on him.
Now not only did I feel like I could  not go anywhere without Hubby having a person to be with him, I was afraid to even move around my own home. Little by little my "house arrest" had me putting up bars for confinement. Little by little I began to feel the restricting grasp of dementia's throat hold. I do not like that feeling.

A series of life ups and downs found us without an aide for a month and a choice that I made in an effort to help someone left me even more confined and dependent on others. Add to that the cold snowy weather restrictions; and well maybe you understand  what I'm saying

So what about the freedom?
Ahhhh I have learned to do a LOT of on line shopping. Looking the internet over and over for the latest bargains, decoding the coupons and deciding if they are actual bargains or not. I have many of  daily supplies sent to me from places like Alice.com. I order many food related items from Schwans.com. I am learning more about the advantages of Amazon.com and it was there that I found that little piece of freedom.

Amazon had a daily deal on a video monitor

I bought it and fell in love with it.
Now I feel like my 'bars' are gone and I get to wear an 'ankle bracelet'
I feel comfortable enough to go watch a movie in the living room with Niece, or even go outside. I can now see if Hubby gets up or how long he has been out of camera range. I am so very satisfied with it!

There are a couple of drawbacks though.

One being that Hubby is used to me being there. When he wakes and I am not, he feels the need to come looking for me. This may be the reason for the more frequent falling.
Also
It's a live picture. I need to remember that others can see it if I don't keep it discreet. I say this because Hubby only likes to wear his pull ups, socks and a house coat. There are times he will enter the room from the adjoining bathroom without them. Who knows what kind of show I may be watching on some days!

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.

Sleep is over rated

Hubby has had several fairly confused days as of late. Staying up day and night with just cat naps.
He wanders around the house and gets lost. One night as we lie in bed I asked him if he needed to go to the bathroom, a through the day habit I have developed. He agreed then pointed to the bathroom door and asked, "Is the bathroom in there?"
After his return he settled back down in the bed and asked me "Where are we?" I explained we were in our home, in our room and in our bed. I stroked his head, it relaxes me, and Hubby accepted that information without question.

The next day brought it's own troubles , lots of sheets to change and more laundry. Hubby's personal care aide came but we could not get him to agree to let her give him a bed bath that day. Perhaps he felt like he already had one after getting cleaned up so many times.
Whatever his reason, sometimes it's best to just let sleeping Hubbys lie.

Later in the day Hubby was standing in the door way. Just standing there. I asked him if he needed something.
He replied, I don't know what I'm doing or what I need to do or how to get there.
Hubby was lost in a Lewy Body thought robbery. I suggest things that might trigger any straight thoughts,"Can I get your walker, are you hungry, do you need a drink, do you want to go back to the bed"...et al.  Usually it works and Hubby fixes on one thing that makes sense and  goes for it. This time was going back to his bed.
Watching him try and walk at times is frustrating. Walker suggestions and retrieval for show and tell help sometimes but many times my suggestions are met with silence or refusal.
Lewy Body is such a mean thing. Hubby is still inside so much of the time, he just can't get out and past Lewy's thugs. I can see him in there through his beautiful hazel eyes when he tries so hard to tell me something and he knows it's coming out wrong. It's heart wrenching.

Hubby's lesser sleep days all crashed in on him yesterday and Hubby slept all day. I woke him every few hrs to ask about the bathroom need and he rose long enough to eat the meals I prepared. But that was all.

Today we started out early. 4:20 AM. 

Actually 4AM as Niece was in the kitchen and dropped an item. Waking with the mental survey of what, who and deciding all was well slipped back into sleep in a matter of moments, so I guess it doesn't really count.

Hubby was fidgeting with his cell phone and the beep beep of the number pads woke me. I asked what he was doing and he told me he was trying to see how wet the bed was.
My non morning brain was able to decode this and I immediately removed myself from the area. (I checked myself for overflow, none, yay ) Hubby started rising and I started removing the blankets and sheets. Threw the top sheet and pillow cases in the machine, started the coffee pot and returned to find Hubby had slid down on his side of the bed with a death grip on his hand rail. His table bed table was leaning over and had wedged itself up on his knee. Hubby's neck was cricked up against the night stand and he was reaching out for me as I rounded the bed to see what assistance I could offer. I was finally able to remove the bed table to give Hubby a little more room to maneuver.
I have learned (the hard way) that physically helping Hubby most of the time is actually no help at all. My best course of action is to try and talk Hubby through the process of getting up even with a demonstration. This does take time to do and requires repetition in word and example but eventually, if he is able to process the information, we can do it. Even if it's in small segments.
By 5:10 Hubby was upright and a body survey revealed a couple of large scrape bruises on top of the already bruised side from a previous fall a week ago in the dining room. The good news, no broken bones :)

Hubby made his way to the bathroom without need of directions, the bed got changed, Hubby is cleaned up, laundry is going and the coffee is ready.

Let the day begin.

Downhill without snow, really long and whiney

Don't you just love it when a day starts down hill?
As a friend reminded me though, It has no where to go but up once it reaches bottom.
I think that was supposed to be encouragement.

Today started off with a straight up strip the bed and wash the sheets before I ever got any coffee.
At least I wasn't wet.
Right there should have signaled the tone for the day. But no, I had to be hopeful ;-)

Frustrations have been mounting for a few days, minor things we don't think about until they stack up high enough that one more minor thing topples them and they spill out and fall on those nearest you.
Between the frustrations with trying to make Hubby understand that he NEEDS to use his walker to prevent falling, yep you guessed it, he didn't and he did with no injuries thankfully, reminding him to let me know if he needs the bed changed instead of laying there and waiting for, I don't know what he waits for. The bed to dry? moving on...
setting the hands on his junk watch for the one millionth time, and the plethora of other small things.

That in addition to my own personal screw ups, forgotten or neglected things.

Now add with it and stir the frustrations that have arrived with Niece.
The breaking point was her choice of shoe wear. Yes shoes!! At 15 I think she should have a little more self care and not need constant reminding about her appearance or personal hygiene. Sadly however, she does. I'm almost at a loss at trying to teach her these things. One step forward and 2 steps back I feel some days and I'm wondering if I actually have the fortitude to continue to teach this.
Not being a quitter I am making lesson plans.

So back to the shoes.
I pick and choose my battles, with my own children as they were growing up even though I chose to battle over something stupid at times.
With Hubby, especially now as I am aware his progression further into his Lewy Body dementia makes him unaware at times of what he is even doing.
With Niece I have tried to do the same. She's a beautiful, giftedly talented and smart when she wants to be, young lady.  She's a pleasure in that she isn't the typical smart mouthed moody hormonal  teen girl. (I have heard stories about such girls as I would NOT have any first hand knowledge and I am SO happy I write this as anonymous as I can so you can not speak to my Daddy regarding this, giggle) Hubby enjoys tormenting Niece and enjoys her presence.

Niece chose to live with Hubby and I for a year. We welcomed the opportunity to have her. Her decision was not due to any behavioral issues, just a desire on her part to live in the South as opposed to her Northern life. We choose to homeschool for 2 reasons.
Hers- It filled a desire that she has had for a while to leave the North. It also filled a desire she has had and asked for to be homeschooled. God allowed her to experience both of those desires.
Mine- Was purely selfish in that providing transportation to and from any extra curricular school functions at various times would be nearly impossible with Hubby's condition. I worried she wouldn't be able to participate in school functions or visit new friends as my own children had, leaving her feeling alone and left out. To avoid isolation from others, a Church friend, whom also homeschools and has a daughter niece's age, offered to pick Niece up and take her to Church and other youth related activities. Thus allowing her the social interaction she would need. What a God send my friend and her daughter are.

But what about the SHOES?! I hear you screaming.
Niece keeps her room in a complete shambles to say the least. She will do anything without complaint if she is told to do it. She will however not do anything on her own.
I woke her this morning to shower and get ready for Church. Earlier in the week we had an opportunity to get out for a little bit and do a little shopping. We found her the cutest sweater dress that fit her to a T! So this morning she put it on, I reminded her to put on deodorant, comb her hair and asked her what shoes she was going to wear. She had a pair of dress flats. Perfect :) She had 30 mins to wait and finish getting ready.
Hubby was wandering around the house clutching everything he could to stay upright (Hubby, walker, PLEASE) and decided the foot of the stairs in front of the door was a perfect place to stand. I reminded him that Niece needed to get by so she could leave as her ride was pulling in the driveway. Hubby doesn't move quickly.
Then as she was headed out the door for her ride I realized she had put on her old black tennis shoes. Wearing white socks and unlaced shoes she started out the door. I asked about her flats. Her response, "I couldn't find them."
I stared at her, and in frustration, sarcastically recapped her remark "You're choosing to wear those black tennis shoes and white socks with your nice dress because you WOULDN'T find your dress shoes?" She started to respond but all I could say was "Go! Your ride is here, just Go." Then I yelled through the door before Hubby closed it, "Tie your shoes!"

Niece walked away with head down, Hubby feeling the frustration of my tone retreated to the bedroom and I went to Nieces room and in less than 5 mins found the shoes and threw them on her bed for her to see when she returns. Staring at the mess I went over the incident in my mind, I left the room feeling like the most horrible person ever. Yeah it's a good Sunday.
Guess every day can't be fun.

Awkward situation

Poor Hubby.

What a down turn we have taken mentally over the last few days.
Hubby gets a word or phrase in his head and for a while that's all that comes out even though he will be talking about something completely different.
This is harder to decipher and much more frustrating for Hubby because he knows what he is saying even though he doesn't realize the words are wrong. To him, I'm the one that keeps getting things messed up.

Hubby has also been on his obsessive kick. Those watches and rings and pieces of scrap and junk jewelry. I think if he asks me to set the time once more on that piece of junk watch I shall hide it from him. (evil laugh)

A few nights ago he had everything all spread out before he went to bed. As usual I went to bed late. I slept in the next morning so the room was bright when I woke and looked over at Hubby. He was sleeping on his side facing me. For some reason I noticed he was wearing his fathers military dog tags, a gold necklace, a bracelet, a wedding band that wasn't his, another ring and a watch. Talk about bling! What a site to wake to.

Caring for a person with dementia is a little like having a child in reverse.
I wouldn't yell at my child for falling asleep in their dress up so why should I be upset about Hubby.
I wouldn't feel bad about smiling at the site of my child. I might even take a picture of it.
I don't feel bad about smiling at Hubby although I wouldn't take a picture of it.
No, Hubby doesn't appear to feel scared or threatened to be here. As long as he feels content and safe I say bling all you want Hubby. just keep your clothes on.

Tonight's obsession is with his cell phone. Hubby insists it doesn't work, so in an effort to "help" I called it from our house phone. I stepped out of the room as we spoke then returned to the room. I said "See, it works." Hubby was staring at the phone.
He said "How do I know?"
I answered, "I just called and talked to you."
He insisted that it was not me he spoke to so I contained my giggling, took a deep breath and called him again.
This time I stayed in the room.
Hubby flipped it up when it rang. Said hello without placing it to his mouth or ear. I reminded him to do that. He said hello again.
Then the following conversation ensued
 I said "Hello"
"Hello"
"See, the phone works"
"How do you know?"
"I'm calling you, see I'll even wave at you."
I wave
I say, "See, I'm waving at you"
Hubby says "Yes, I see her"
Hubby waves and turns back to phone
I say "I love you"
Hubby pauses
I repeat
Hubby turns around to look at me then turns his back to me and says in the phone, "You do? OK Bye"

By this time I'm laughing and can not even continue the phone lesson.
Hubby has no interest anyway after a strange woman just professed her love to him!!

I am SO glad I'm writing all this down.

"I'm Hungry" Declares Hubby

"Still?" I asked
"What do you mean still?" Hubby questions
"Well, You've eaten all night and just finished 2 sausage biscuits."
"I haven't eaten all night"
"Really!? Then who left the empty containers of food on the counter and spilled the cheese all over the floor in front of the refrigerator? Never mind, do you want Malt o meal?"

Hubby agrees that Malt o meal is what he wants for a second breakfast.

Mouse named Hubby

I get tickled at Hubby and his eating habits. He gets it in his head he needs certain things to eat. For a while I made hamburgers every day. That's what Hubby wanted, that's what Hubby got.
Then he was on a malt o meal kick that gave way to oatmeal, then biscuits and gravy now sausage biscuits with the malt o meal addition at times. Must be for the variety or all the sugar I put in it. OH and shredded cheese!! How did I almost leave THAT out?!!

Hubby has always had a decent appetite. It's pretty obvious when you look at us. We do not appear to be starved for something to eat. I suppose these days food is the only thing we CAN do so we do, but that's an entirely different blog ;-)

Hubby has always had night time eating habits he didn't remember. I recall the kids telling me that they would see dad hunkered down in front of the fridge eating misc left overs. Of course Hubby didn't remember he had eaten and would complain the next day at lunch time that the kids must have eaten thus and such. Of course I knew full well the kids didn't like thus and such. Being the good wife that I am I took Hubby's side and made the kids promise they would not eat thus and such any more and they willingly agreed to never touch it again ;-)

The kids and I enjoyed the smile of it. No harm no foul.

These days Hubby still makes his nightly raids to the refrigerator. Niece has come down in the night upon hearing a noise only to find the fridge light shining and Uncle Hubby leaned over the counter eating something.
Hubby's into "fast food" and NEVER tries to cook anything. To be honest he doesn't know how to cook so he never tries. That's a plus for me.

I am happy Hubby still has appetite. Even if he doesn't remember. I did have a thought provoking discovery though. As I prepared Hubby's Malt O Meal I retrieved the butter bowl. What I found when I opened it was that Hubby had made a meal or part of a meal with the butter.

It did get me to thinking though. Not only do I want to continue to have things for Hubby to munch on I want to be sure that I keep any RAW or expired foods (Don't gasp, I'm sure some of you have green stuff you can't identify in your fridge) that might be harmful to Hubby out of his line of site. To my knowledge Hubby has never eaten anything that could potentially make him very sick but Lewy does it's own thing so who knows what Lewy likes to eat.

So we all know what this means right? MORE work for me. yay THANKS LEWY! grumble grumble as I go through the fridge.
Wasn't this supposed to be strawberry jelly? ewww

Pillow Fight

I decided to call it a night .

It was 1 AM

Sleep finally hit me like a ton of bricks. I was happy to experience it.

Then during the night I experienced something else, a dull thud in my back.
I awoke with a jolt but an exhausted millisecond survey said no problems so I closed my eyes again.

Then another thud and a smack on my head. Again and again.
It didn't really hurt as a pain but it was uncomfortable and annoying and I knew at that moment I was under attack by the Lewy Body dream hoodlums that invade Hubby's sleep.
An agitating group that leaves Hubby thrashing, fighting and kicking while he sleeps. Often times yelling profanity or threats at them or unintelligible sounds followed by more hitting.
Hubby takes meds to alleviate this problem yet it persists. I suppose not to the degree it could be. 
The poor night table on Hubby's side has had it's share of abuse and we wont even mention the demise of a bed side lamp.

On a normal (giggle) night, or day or any time Hubby is asleep, which is pretty much most of the time, I get some kind of a warning that the fight will ensue following the verbal  barrage.
A jerk or mumblings or a loud yelp.
At which point, if I'm in bed, I crawl out of the bed into a safe zone. (Usually to the coffee pot and in my comp chair)
I have already learned to "run for cover" for fear of one too many knocks upside the head.

This time however, the warning, if any, was missed and I experienced a full rear assault to my back and head. Sleep, however, was trying to win out and keep me trapped so what else was I to do? I grabbed my second pillow I sleep on, and placed it around my head and between Hubby and me as a shield. I think at one time I may have "butted" Hubby back to his side of the bed.

Hubby must have felt victorious as he finally settled down and the assault stopped.

 WHEW!

I'll tell you, it is certainly an experience in self control to be woken by attack and not retaliate. ;-)

Just an ordinary day

Hubby: "Where's the coffee at?"

Wife: "In the kitchen."

Hubby long pause then sincerely: "Where's the kitchen at?"

Wife understanding: "I'll get it, I'm headed that way"

Hubby: "Thank You"

Wife smiles sweetly: "You're welcome"

Hubby smiles back feeling secure and easy

Lord, help me remember that this is his reality and I should treat him as though it were his first time here. Even if it's all day. Amen

Prepare to Swab the Deck

Hubby joined the Navy when he was a youngster. He was so young that his mother had to sign for him to go.
He spent 4 yrs on a ship, the same ship, which is unusual I understand.
He ranked as a GM3 and was top knotch at hitting targets dead on.
He told me that they asked him to stop hitting them at one point.

This was the first time Hubby had ever been away from the tiny rural town he lived in.
It was a life changing moment for him.
It was also during the Korean War conflict.

I am amazed at how clearly he remembers things on his ship. A ship he was on for only 4 yrs.
I am more amazed that after 29 yrs of marriage he does not remember me. Sheesh!

But that isn't the story here.

Once upon a time, OK the other day...

It was supper time.
I was busy in the kitchen preparing the evening meal for Hubby, Niece and myself.
Chicken strips cooked in a fajita mix and placed on top of a plate of salad. A boiled egg sliced and shredded cheese, fiesta blend, topped with a spicy ranch dressing and some raspberry lemonade.
Yumm!!

Just as I finished pouring the salad greens in a bowl I heard Hubby moving around in the bedroom.
I looked in and ask him if he wanted Salad.
Hubby was lying in the bed and waved me off. I hurriedly asked if he was OK and again he waved me off so I left the room
I called Niece to wash up and she and I finished putting things on the counter when I heard Hubby again. I went once again to check.
Hubby stood in the bathroom doorway, in his usual slumped over stance leaning into our adjoining bathroom door frame as a support. I asked him about supper. His reply, "I need a...."(long pause) "I need a...."(long pause)

first word, sounds like... oh you get the picture.

Nothing I asked was what he needed. Hubby started looking back into the bathroom. AH HA!!
I deduced Hubby needed something in the bathroom. (I was smart to figure that out)
Towel? no, Wash cloth? no
Hubby was wearing his pull ups and didn't need clean ones, I asked.

"I need a ...(pause)...mess"

"You need a mess?"

Annoyed tone- "No" (Yes yes, I know , I am stupid Hubby)

"In there" Hubby looked again into the bathroom.

I walked to the bathroom and what to my wondering eyes did appear?! (Isn't that a line from a Christmas story?)
Water, ALL over the floor.
What the heck?!

Where did all the water come from?
My first thought, Hubby had broken the water pipe around the toilet. I hurriedly removed my socks and set off into the wetness. No broken pipe but WORSE!! Ok maybe not worse just disgusting

Hubby had stopped up the toilet and tried to plunge it.
It overflowed!!
UGH!!!!
I stepped in it!!
And Supper is ready!!
EWWWWWWW!!!!

So lets back up a little.
Ummm, No pun intended.
One of the difficulties of Lewy Body Dementia can be Constipation.
Hubby is NOT active. Most of the time he sleeps so he never moves like a body needs to in order to have all your internal pipes functioning properly. Typed as delicately as possible.
Hubby on the other hand does eat and anything he chooses is just fine with me. I think, as long as it isn't weird or make me gag.

Moving on.

So to help combat this constipation Dr prescribed a stool softener and a laxative to use as needed. I do not give the laxative to Hubby every day. I think I prefer a little constipation to runny uncontrollable stool.

TMI!

Fast forward...

I rolled up my pant legs and hurried out of the bathroom. Grabbed a towel for my feet and several disposable bed pads to throw on the floor to absorb the water.
I notified Niece she was going to have to eat alone as it looked like my job would keep me occupied for a bit and there was no reason she should eat a cold supper.

I collected more pads threw the floor rugs into the washer.
Scrubbed my hands and helped Hubby get settled.
I made him a plate of food and a beverage.
He was set.

Mostly, I appreciate any time that Hubby feels like he can do things.
Things like putting on his own socks or T shirt, but never does and he always asks me to help with.
Or throwing away his trash instead of leaving it on his table for me to clean.
Even bringing the empty plastic cups into the kitchen when he chooses to shuffle in there.
Simple things.

I do not appreciate him trying to do things he KNOWS, or should know, he can not do.
Shuffling with a full cup or bowl of liquid.
Carrying glass jars.
Plunging the toilet!

So needless to say my evening may have started out crappy ;-)
BUT on the bright side.
I fired up the steam cleaner and sprayed the peroxide on the floor so the floor got nice and clean.
The rugs got washed and the toilet flushes like its supposed to.
Nobody slid and fell and my supper was still good when I got to it.

One day, I'll miss these days

STOP THIEF!!

What a crazy night!
Hubby had decided to go through all of his drawers in the house, again. Now that in itself is no big deal. He has done this on more than one occasion and it does not bother me that he keeps himself occupied with this task. If he leaves it scattered about I just shove it all back into the drawer and close it. He never seems upset by the mess.

Hubby had some old jewelry and watches in the drawer. Mostly old watches of various kinds. A couple old and sentimental pieces but the rest I would consider as junk. Hubby seems to have become obsessed by them and now keeps his collection on his night table. Checking and rechecking them to see if they run. He has even taken a few apart to "see". Maybe a couple need batteries but getting to the store for batteries is not on the list of things to do for me when I have the opportunity to go to the store. So there they sit for him to look at and fidget with.

But lately, hubby has taken an interest in other things to keep. A week or so ago he went through my jewelry box and located the first gift he ever gave me. A watch. It has long time expired but I kept it anyway. It's 29 yrs old.
hubby called me over to where he was and asked me if I could "figure out what was wrong with this thing." I immediately noticed that he had my watch and had it dismantled! A pang of hurt cursed through my veins and I grabbed the watch away and reassembled it in tears. Hubby was a little confused by my action about it but we both let it go and I replaced the object to it's resting place.

Or so I thought.

The other night Hubby was looking through his watches and misc pieces of jewelry. He mentioned my rings and asked about them. I showed them to him and he asked to see them so I removed them and handed them to him. He asked me if I knew where they came from so I started explaining and he disagreed with me. I disagreed with him and the back and forth of the "It's mine" "No it's not" discussion ensued.

Hubby with possession of my rings started to put them on his table. Of course I wasn't smart enough to just leave them be until the morning so I reached over and took my rings away from him. Placing them on  my fingers for safe keeping. Hmmmph

Hubby gave me a suspicious grin and turned back to his fidgeting with his scrap jewelry.
I did notice that amongst that scrap jewelry was a necklace that was mine but him having it didn't seem to bother me like the rings. I never said anything about it.

A short while later Hubby made his way around the end of the bed, to the dresser and produced my watch. He asked me if I knew what it was. I answered that it was the first gift he ever gave me.
Hubby smiled and said "Oh no"
I had to insist (I'm smart like that)  "If it wasn't for me then who was it for?
Hubby replied "Do you think you are the only woman I ever bought a present for?"
Of course I couldn't let that slide so I snipped, "No, but I know I'm the only one you bought THAT for."

Hubby replaced the watch and announced to me that I was greedy for wanting things that didn't belong to me.
I just sat in my chair and stared at him. Computing the words and trying so hard not to laugh at him.

If it wasn't so funny, I think I would cry!

Straight Talk

WARNING to the overly sensitive about death: Straight talk-
Hubby (through tears) motions me to him and I sit on the bed beside him. He asks...

Hubby: How long do you think I'll be like this?
Me: Only God knows that answer.
Hubby: I don't want to be a burden.
Me: You aren't a burden but some days are hard. The hard part is trying to deal with your mind. I understand your frustration and I wish I could do more.
Hubby: We cant fix it can we?
Me: No, but we are doing what we can. I love you and I want to do all I can to make you as comfortable for the life you have left.
Hubby: I think I should move away.
Me: If you are thinking of leaving me then all I can say is you better die.

Hubby smiles, reaches up and pats me on the arm. Then he says. "I do love you"
I love you too Hubby <3

2:30 AM

"Honey, I think I need to go to the hospital."


Not the kind of thing you want to hear at 2:30 AM.


So a little backround. 
Hubby has had several "bad" days. Until you come face to face with dementia on a daily level, it's difficult to understand the terms, good days and bad days. At least it was for me. Oh I had been around other people with dementia before, this isn't my first walk around the block with it. Hubby's mother had it. She lived in our home for a few months and at the time I was only vaguely familiar with dementia.

I knew what dementia was but didn't KNOW what dementia was. Every day was a bad day as far as I was concerned. I had 3 kids under the age of 12, a moody and emotionally unwell husband, his brother with Downs syndrome and his mother all to care for. It was also during this time that Hubby was admitted to a 9 week instay PTSD program at the veterans hospital. To add to the joys of the situation, Hubby, being the friendly "Let me take care of you buddy" sort that he is/was, invited complete strangers to come and stay with us while they had "weekend down time" at the hospital. People that were in from other states or had no place to go on the weekends.


I have to admit that we met some of the most wonderful people and I am still friends with to this day. I am blessed to know them.


So combine all ingredients and mix well. Every day was a bad day for dementia.


fast forward....


It's strange that a few months ago I would have considered Hubby's agitation as bad  and yet these days still bad, just not as bad. When exposed to something for long periods I suppose we get used to it.
But last night, Hubby got himself all kinds of  annoyed. Apparently he has been on brain overload the last few days. Angry thoughts and outbursts of moving away and living alone. Driving and taking back all the things I'm "stealing" from him. He found my purse and took all the money out of it. I never said a word about it not wanting to add to his emotional decline. He spoke of his death and how much longer he thought he would have to live like this. He debated about not taking his meds in hopes the process might speed up but me not confirming that possibility finally compounded enough last night to send him into an anxiety attack.


Hubby has never had an anxiety attack before and when he woke me from the sleep I had finally found, I had to survey the situation and make a judgment call. I fear of hospital admittance and new meds. I know that with Lewy Body, some meds can have serious side effects that are irreversible. Meaning sending him deeper into Lewy and not bouncing back. Perhaps I am selfish in keeping him away.


Hubby was shaking so severely almost as though he was having chills just not quite jerking like a seizure. He couldn't stop shaking. First thing I did was check for body temp. He wasn't feverish, neither was he cold to the touch. He was crying as he tried to talk to me about how he couldn't stop shaking and he couldn't stop thinking and he had never been like this before. As he spoke I assessed that he was experiencing panic. 


My poor Hubby. I felt helpless to do anything. I snuggled up close to him and held him tightly. I spoke in calming words to assure him he was in the best place he could be. That I would do everything in my power to make sure he was safe and comfortable.I told him I realized his frustrations and I wished beyond all wishes I could change things for him but I was not able to. So I would just love him. He cried and shook all the more. At one point he told me he even thought about shooting himself  but didn't think he had the nerve to do it. (FYI- NO weapons in the house) Then said he even wondered if I would do it for him but he decided I would not. I agreed with that and I held him as tight and as close as I could.

I snuggled into his neck close to his ear and verbally prayed for him and his peace and calmness in the name of Jesus. 

After a few mins Hubby seemed to relax and his shaking started to go away. I lay there breathing on his neck and listening to him breathe. A few more mins passed and Hubby settled down almost completely. Enough that he was able to rise and walk to the bathroom with minimal problems.

On his return to the bed we snuggled up again and fell asleep. He rested fairly well the remainder of the night.
Or maybe that was me.


Hubby thought he wanted to go do something today but as the morning passed I woke him to see if he was still interested. He was not. It is now 12 hours later from his panic attack. He sleeps. I listen to his rhythmic breathing and even woke him one to see if he needed to use the rest room. I know how frustrated he gets when he lays asleep too long and there is a need to get cleaned up and change bed sheets upon rising.


I love Hubby.

I don't like leaving these posts in doom and gloom so I am going to share a smile we shared from a couple of weeks ago. I had it all typed out and never posted it. Not sure how that happened so here it is

Conversation with Hubby: "Is my... (long silence) well, I guess it is, or isn't, or aint."

Me: "Before I could answer that question I would need to know what you are talking about."

Hubby: looks at me, smiles and says, "I have no idea what I'm talking about" 

We both just broke out laughing! LOL!!

It's always good when we can share a laugh.

Hubby + Wife + Hoyer Lift = HILARIOUS

When Hubby was first diagnosed, the Veterans Administration sent us some equipment for his needs.

Hand rails, bath chair, bed side toilet and raised toilet seat. They even sent us a hoyer lift.
At the time we received the lift, the item wasn't needed. I did however know it would be used at some point. I stored it away. It came with an instructional VHS Tape. Bad thing, we no longer had a VHS tape player. I called and asked for a DVD but have never received it.

I found a you tube video that was some help in learning but to be honest, there is nothing like hands on experience. I'm a "Let me do it" kinda gal anyway.

Since I haven't used the Hoyer lift any I had it stored in my closet. It became a pretty good rack for my clothes. I had to unload it finally as Hubby had taken a tumble in the bathroom floor the other day and no amount of coaxing was getting him to understand how to get up. I have already learned to NOT try and help. The result could be injurious to not only him but to me.
So after I surveyed Hubby for visual injury and made sure that all his limbs were still movable I was left with 2 options. Call for help, get out the Hoyer.

Hubby was very certain he didn't want me to call for help but realizing I only had 2 choices he wasn't much resistance when I wheeled the contraption into the bathroom.

LET THE FUN BEGIN!

If I was the type of person to make a profit off of funny videos I could have made a bundle this time. But I'm not so your imagination will have to do.

First off Hubby was situated in a very awkward position. Awkward for 2 reasons. One was position the other was that he was unclothed and not easily moved. I had to get Hubby moved from this tiny spot by the toilet into the larger more manageable part of the bathroom. I couldn't slide his body across the floor so we, Hubby and I,  tried to get a bed pad under neath him. We managed to get one up under him enough to put a sheet around his chest and under his arms and I was able to drag him to better positioning for the Hoyer.

2nd I needed to figure out the sling. I positioned it over both arms and around his back fastening the belt around his chest.
Pulled the sling down as low as I could and tried to get it under Hubby's behind. Was only able to get it about 3/4 of the way but felt it was enough to at least raise him for better pad positioning that I could maneuver him a little easier. I attached the sling to the lift arm and as I raised my head I smacked myself on the head.

I raised hubby a few inches and placed a pad under him. At this point Hubby gave up all assistance with me and just lay there in the sling. I decided to just go ahead and raise Hubby up and slide a chair under him. I forgot to turn the knob for Up so when I went to use the pump handle, Hubby's elevator took a downward slide and Hubby has VERY WIDE EYES!! LOL!

Knob turned, for the correct direction I once again raised Hubby. The higher he went the funnier it appeared to me as his legs were stretching out and I couldn't get him to understand that he should try to put feet under him. I FINALLY just cranked him up, grabbed a chair, slid it under him and lowered him onto it. WHEW!!

Needless to say we need PRACTICE!!

Hubby and I both found this to be an amusing thing and we both laughed. I told him we needed to practice getting him up and down in that thing. He agreed.

Comparison/Review

I bet I've tried to update this blog a hundred times. There seemed nothing to say.
Life has just run it's downhill course and I didn't want to capture it forever in the negative thinking I have had lately.

Some days I have wanted to run screaming.
Remember the expression, if you have nothing nice to say...?
Of course I don't always follow that rule, like now.

I feel like somewhere along the way I lost my direction and my focus. Perhaps it's just this time of year.
Whatever it is I do hope it passes soon. I don't like feeling this way.

2010 is ending. Many have celebrations planned and many are staying home. LOTS of well wishers for the new year to come have expressed their thoughts and yet mine are seeped in a blank feeling.
I feel like there is no hope for a happy new year.
I know that the year will only bring with it more sadness, frustration and more confusion. Harder times, physically and mentally. I know that the new year holds no hope in it for Hubby.

I decided to do a comparison/review of Lewy at the end of our 3rd year of battle

 ASSISTANCE
2yr Ago:  None; able to do all Activities of Daily Living (ADL) independently
1yr Ago: Can function with supervision and some assistance
Today: Hubby is able to cooperate some and has a little mobility, but needs constant assistance 

 SPEECH.
2 yr ago: Varying levels of intelligibility and clarity
1 yr Ago: Gets lost in thought frequently, forgets what he was going to say or incorporates something non relevant he heard or saw into his conversation
Today: Gets lost in thought most of the time. Difficult to make sense of his communications

EATING
2 yr ago: Completely independent
1 Yr Ago:  Needs minor assistance food cut up more finger foods and things easily swallowed through a straw. His shaking is so bad that trying to keep things on a spoon or fork is terribly frustrating to him. He eats a lot of hamburgers (hand held) and Malt o Meal (through a wide straw)
Today:  Has a few swallowing issues. Unable to feed self once but still attempts to be independent with finger foods, items cut up and thinned cereals he can drink through a straw. No more Hamburgers but biscuits and gravy were a staple here for a while. He eats less meals though due to difficult eating issues I believe.

 ORIENTATION OF SELF AND ENVIRONMENT
2 yrs Ago: Knows self, others, time, location although time and space
have no meaning
1 Yr Ago: Has regular lapses of knowing self, others, time location He knows
Me as caregiver. He does not remember what my relationship is to him though :(
He does not recognize our home as his but he has one just like this one somewhere else.
More and more of us are leaving his memory. Makes me think of that digital camera commercial where the pics are all huddled together and someone has to be deleted to make room for a new one.
Today:  Not much change in what, just in who. An old friend stopped in to relay sad news about the passing of another. Hubby had no idea who he was or who he was talking about that passed away.
Time of day is completely gone, morning could be night and vice versa even if the sun is shining or it is pitch dark.

EMOTIONAL STATUS
2 Yr Ago: Periods of depressio & infrequent periods of fear/anxiety
1 Yr Ago: Regular periods of depression and anxiety. Resents not being able to drive anymore.
Thinks it's my fault.
Today: After a period of angry outbursts, Hubby now has periods of grief about perceived losses

SLEEP FOR HUBBY
2 Yr Ago: REM sleep disorder most nights.
1yr Ago: Same. Thrashes and hits.
Today: Same Poor bed table and lamp #1

 How much HELP do I think I need to provide adequate care for my spouse?
2 Yr Ago: As of today we are holding our own
1 Yr Ago:  He needs 24 hr care as he is a fall risk and too confused to be left alone.
Today: He needs 24 hr care and supervision due to falling issues and confusion

How many days each week are you the SOLE CAREGIVER?
2 Yr ago: All of them
1 yr Ago: I have home health that comes 2 hrs a day Mon-Fri so I can run to town and his aide gives him a bath.
Today: I have a health aide that comes 10 hrs a week. The rest of the time I am sole caregiver.

How often do you feel that you do not have the help you need?
2 yr Ago:  never
1 yr Ago: regularly
Today: regularly

 Are there others I can call upon when I need more help?
2 yrs ago: yes---easily available
1 Yr Ago: yes, but difficult to get anymore
Today: same

Quality of my sleep
2 Yr Ago: Frequent interruptions.
1 yr ago: frequent interruptions that I am used to. I have found that I delay going to bed for as long as possible and getting up early. I'm not sure why I started doing that.
Today: frequent interruptions I am used to but not well rested even though I try to nap

 Do I get enough exercise for health and stress control?
2 yr ago: yes, always
1 yr ago: NO I do not take the time to exercise for my health and stress. I had to
quit my gym so I just stopped doing anything and it's telling on me.
Today: I don't even think about it and I don't want to talk about it.

 How much emotional stamina do you have?
2 Yr ago: a lot
1 yr Ago: seems like I have a lot, but easily rattled by the unexpected my emotions can sit right behind my eyeballs.
Today: Not enough I fear, You can ask how I am and my answer will be fine, but please don't ask how I really am.

 What are my main worries?
2 yr ago: Actually difficult to answer because I'm a one day at a timer
1 yr ago: One day at a time hasn't changed but I have added a concern about personal health, if I get ill who will care for my loved one. Health of my spouse; Heaven forbid he get sick and run a fever!
Effect of illness on the well-being of children, other family members.
Today: Same concerns with the addition of Hubby's loneliness.

What do I do to comfort self, for restoration?
2 yrs Ago:I joined a fitness club and attend 5 days a week
1 yr Ago: I had to quit the club because Hubby could not be left alone any longer and the time constraints were killing me. I became a facebook junkie and have actually had more contact with my far away family and my church family because of it.
Once a month we hosted our Church Youth Group for food and fellowship. I really enjoyed that.
Today: I had to cancel our Youth Group gatherings due to Hubby's unpredictable behaviors.
I seem to have lost much interest in anything.

 What percentage of my life is organized around your spouse's health?
100%

How much of your life is lived with LITTLE consideration of LBD?
100%