This is dementia. It's not just a memory problem.
What you read in this blog is purely my own personal experience in dealing with Lewy Body Dementia every day.

This is not meant to offer any medical or legal advise.
I have no professional training in care giving or experiences in formal writing.
I'm just a woman that loves her husband deeply and wants to provide him with the best quality of life he can and chooses to have.
My prayer though this is "Lord, What am I learning from this; how can I use it help someone else and to glorify You?"
If just one person finds comfort in this public blog. I will feel like it was a success.

Tuesday, March 29, 2011

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.
What was that?
Sounds like the toilet tissue dispenser? going around too fast?
again? I'm going to need to buy more tissue. I hope he doesn't stop up the toi...
What was that?
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.
Unaware that he even fell. (He asks what happened to his arm)
Thank you Lord for removing that memory from his mind.

Saturday, March 26, 2011

"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 :)

Thursday, March 24, 2011

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!!

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!


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?

Thursday, March 17, 2011

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 :)

Saturday, March 12, 2011

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


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!"

Tuesday, March 8, 2011

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

Monday, March 7, 2011

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!"

Tuesday, March 1, 2011

Caught Off Guard


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.