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.

Friday, March 23, 2012

Give A Guy a Break

Poor Hubby can't catch an emotional break lately.

In as many days he has received sad news about 2  friends passing away.

Processing the first one has been very difficult for Hubby.
He is lost in the house and unsure of where he was most of the time.
He asks me what day it is more than once and became obsessed that we should attend the funeral.

Hubby had a nurse procedure scheduled to have his ears cleaned out.
His hearing difficulties have increased so I made an appointment to have them looked at.
As it turned out Hubby had no wax build up that was preventing his hearing loss.
We were both disappointed by this information.
Hubby believes he is going deaf and I am sticking to my original thoughts which are the Lewy bodies are the reason that Hubby has hearing problems, less hearing and more word comprehension.
There are times Hubby can hear perfectly fine and others that words need to be repeated, more than once, or twice, or explained.
Then there are the times that Hubby believes I said one thing and repeats what he thinks he hears, utter nonsense, that much of the time leaves me in laughter after I move past the frustration.

On the way home I asked Hubby if he wanted to stop and have lunch.
He said "No" so I headed for home.
When we were just a very few miles from home Hubby asked me if we were going to stop for lunch.
SO I made a turn and headed back to our favorite family restaurant.
While we were there we ran into some friends who informed us about the passing of another.

UGH! Poor Hubby

Since then Hubby has taken an even farther downslide in cognition.
We are back to him asking me if I live here and if this is my house.
Where we are and when are we leaving.
Did the VA hire me to take care of him etc etc.
One day he asked me what day it was so many times that I wrote it down on a piece of paper and held it up at him when he asked again. :)

There are just too many brain connections misfiring to allow Hubby any processing the deaths of his friends.
This has left him in a whole other world I'm not part of. At least he isn't fearful or anxious.

Hubby still insisted that we do something for the funeral.
I ordered flowers and sent condolence notes.

We've attended many funerals of family and friends, over the course of our marriage.
We understand and accept that dying is a part of the life cycle and sometimes the cycle ends too soon and or unexpectedly. Normally we would have attended the service.
In my heart though, I knew that Hubby's attendance would be too difficult for him.
If just the news caused this much confusion I could only imagine how Hubby would react the raw emotions of the deceased loved ones.
How long would Hubby be in the decline and would there even be a bounce back like there can be in Lewy Body patients?
The risk of attendance seemed high to me and I wanted more than anything to avoid the  sadness and the service only for Hubby's sake.
We even talked about how difficult I thought it would be and the downturn Hubby already had, although he didn't realize it too much.
I knew I needed to make an executive decision.
One that would leave me a dictator and more than likely enemy number one.
I was pretty keyed up about it.

The night before I stayed up with Hubby extra late.
He asked me what we needed to do in the morning.
I just responded that we didn't need to do anything and I changed the subject and Hubby followed.
The evening ended and I prayed really hard to just let us sleep late.
Prayer answered but I still woke early enough.
I prayed more that Hubby would sleep for a while and possibly through the morning service.
This would allow me to stay in his good graces by not making such a hard decision and insisting we would not go.
Hubby did sleep through the service and through lunch.
Youngest daughter called to say she and youngest grandson were coming for a visit. YAY!
I told her about her Daddy and how I prayed he would sleep and at that moment he still was.

She mentioned that perhaps I prayed so hard I prayed him into a coma.
I busted out laughing!
Tension release right when I needed it but I have NO idea where she gets her sense of humor ;-)

Hubby slept through most of her visit and he woke just before she left for home.
He asked me if we missed the funeral, I said yes.
Hubby was upset with himself for sleeping so late.
I just said that it was okay since Hubby wasn't feeling very well anyway.
He agreed.

Tonight he is still as confused as ever.
I don't know how long this will last or if it will end.
Dementia, it is what it is and we'll just do the best we can as the days come

Monday, March 19, 2012

Let My Guard Down

A few years ago I was channel surfing and ran across a sermon that caught my attention.
It wasn't so much the topic that caught  my attention as it was the man's presentation.
The topic was on The Whole Armor of God.
I've heard and read and taught it myself so I was familiar with the text.
Ephesians 6: 14-18 (snipits) tells us to
Put on the full armor of God so we can take our stand against the devils schemes.
Stand firm wearing the belt of truth buckled around your waist, with the breastplate of righteousness in place, and your feet fitted with the readiness that comes from the gospel of peace.
In addition take up the shield of faith to extinguish all the flaming arrows of the evil one.
We should wear the helmet of salvation and the sword of the Spirit.
And pray, all kinds of prayers and requests.
And be alert.

SO? what does this have to do with caregiving for dementia?
Well let me tell you in a min.

The preacher came out on stage wearing armor. Not actual armor but some sort of a noticeable costume.
OK so yes any preacher wearing any kind of armor would be noticeable.
It was humorous to see this and I couldn't turn the channel until I heard what he had to say LOL
I silently acknowledged his teachings as what I understood as truth from my own study and teachings.
He showed off his pieces of armor and discussed them one at a time.
Then he took a sure footed stance and said , Be alert, because if you arent..

Then he turned around

I laughed so hard when I saw what looked like arrows in his behind!
There was no protection there!

Now the caregiving comparison.

In caregiving especially for dementia I try to prepare for the battle against, what I consider, the "evils".
I buckled myself with the truth that the Hubby is not the disease and the disease is not the Hubby.
I provide everything I can to do right by Hubby when providing the best care, be it in my own physical care, with aids or respite service in a facility.
My feet are ready for transport to appointments and outings or they are ready for just walking into the room  with my presence.
I have faith that God won't give me more than He can handle when I turn it over to Him.
I wear a helmet of knowledge and continuing education to better care for Hubby.
I carry a sword to fight the systems and cut through red tape.
I pray what feels like non stop. I pray for peace and understanding (I never pray for patience because i don't want trouble) I pray for rest and good days and a plethora of other things.
And I watch and stand guard against illness and side effects and too much noise and excitement.
Always watching, always on guard

I thought anyway

I let my guard down.
And I got shot with an arrow, right in the behind
and it hurt

I had to break sad news to Hubby about a very close and very well loved family friend.
Hubby took the news of Friends passing very hard.
We knew Friend was seriously ill and had made a few attempts to get ready and go see him while in the hospital, but Hubby couldn't ever follow through this last week. It was a stressful week for Hubby. We even had to cancel a dr appt because we just couldn't get out.
There is some news I don't relay to Hubby until it's a have to. It's my, I'll cross that bridge when I get to it, attitude. And some news I never have to tell Hubby, or haven't had to yet. I try not to bring worry into Lewy's world.
But the news was very evident apparently on my face because Hubby sensed something was wrong.
Hubby had a pretty rapid decline in cognition after that.
I actually expected it and tried to prepare myself.
I handled it pretty well through the day, and the afternoon.
Then the evening came. The time of day when cognition melts away into the sunset and confusion settles in like the dark.
I suppose in my own sadness and effort to remain settled for Hubby I didn't think the day could get any worse for confusion.
My mistake.
Hubby had mobile meltdown when he was leaving the bathroom.
As usual he called for help.
This time he substituted me for someone else.
I would so much prefer to be forgotten than substituted.
I will honestly say that it hurt so bad I burst into silent tears.
I walked over to Hubby, calmly said , My name is Kathy; as I took his arm.
To which he replied, Oh I know that. I don't know why I said it, really I don't.
I assured him I knew he didn't mean to say it and helped him to his bed.
I washed my face and offered Hubby a beverage.

I had to find a way to get my guard back up against Lewy and not against Hubby.
As we lay in the semi dark I heard Hubby get up and saw and felt him as he walked the length of my bed.
He came to get a good night kiss.
Then he went back to bed.

Hubby is not the disease, the disease is not Hubby.
Even though I repeat that over and over, my guard still goes down sometimes and I take a direct hit, right in the behind.
Who knew that was where my heart was ;-)

Saturday, March 17, 2012

What a day

Hubby has had a very interesting day today.

But it all started back a few days or maybe I should say nights.
I have been keeping a close eye on Hubby since he started his new seizure episodes. Not overly worried or concerned about them just yet. I've been monitoring his BP and it has all been in a normal range laying, sitting and standing. His pulse rate has been elevated though. His last episode was Friday while he was with his aide.
For some reason I am always comforted by the fact that someone besides me, sees what is happening with Hubby.
When I should be thinking, "Oh poor Hubby and poor you, I'm sorry you had to witness that"
Instead I'm thinking "YAY, something happened while you were here. I am NOT imagining things"
Weird I know.
The night was followed by lots of extra confusion.

Hubby's normal, but less so lately, nighttime behaviors have consisted of night time snacking and trips to the bathroom. His normal movements have become "white noise" to my sleep patterns and anything out of the ordinary sets off some type of alarm in my head and body and I immediately jump to the ready. I'm never off duty I suppose.
Lately however, Hubby has been staying up at night and wandering stumbling through the house. The parkinsons symptoms associated with Lewy Body make Hubby shake terribly. Results being that anything he touches is shaken and rattled since there is no way to control this movement.

That leads up to the last 3 nights. Hubby has not only been NOT sleeping at night again. He makes every attempt to get into the kitchen at night clutching everything in his path until he finally gets there. My offers to fetch for him are met with resistance as he feels he is quite capable.
I just wish he felt capable during the day and not during the middle of the night.
You see, as Hubby passes my bed he holds it, you know where I'm going with this so just let me start from his bed.

He has a metal over the bed bar on a chain that he uses to help himself rise. (can you hear it clanging?)
Next to that is a bed table, with misc items on it, that I move out of arms reach to keep it from getting beat up at night and knocked over.
Then he moves from the table to my bed side.
I wake and move, mistake, he thinks I'm talking material, I'm not, other than, "Are you ok?"
Hubby pauses to say something I don't understand and probably if I were forced to tell the truth would say at that hour, I could care less about besides, "Yes I'm fine" but I'm not forced to tell the truth so I wont mention it.
Hubby moves from my bedside to our dresser. Seriously I NEED to get that thing cleaned off!
Hubby walks along the edge of the dresser and makes it to the door frame, where he stands and mumbles something. I roll over.
About 3 feet from the door frame is an old family dry sink with glass jars displayed on it. (Who's ides was that?)
4 feet from the drysink is a counter chair. Our floors in the kitchen are tiled.
As Hubby makes his way around the counter a couple of feet he finds the fridge. Another item with glass pretties on the top.
From the sounds of it, Hubby uses the door as leverage.
Then Hubby must make his way back to his bed.

Once settled he realizes he needs to go to the bathroom.

Metal bar on chain, bedside table, my bed, talking. This time he has to walk the length of the end of my bed to get to a doorframe. Lights, squeaky door, shuffling, dozing off until I hear the squeaky drawer (what is he doing?), then the squeaky door, the aroma of my body spray, Hubby makes a stop to sit in the chair by the door and ask if I'm awake. I am, he might need me. More talking (I think, mostly I grunt uh huh and uh uh), the end of my bed, his bed table, his bar on the chain then silence. For all of 3 hrs IF I'm lucky. Then he repeats the processes!

Now I'm one that needs straight hours of sleep by 5 or more. Preferably 8.

This has been going on for the last 3 nights. I even had Hubby stay up ALL day on Friday hoping he would sleep Fri night but Noooo.
So here we are today, Saturday.
I'm tired.
Hubby was too because he decided to go to sleep this morning. I woke him for coffee and breakfast and took advantage of the beautiful weather to do a couple things outside close to the house. I also had my video monitor tucked in my shirt so I could hear him or see him :)
I came in for water and checked on Hubby and he had chose to go back to sleep and was snoring.
I wanted so much to shake his bed and yell GET UP!, but I didn't :/

When Hubby finally did get up early afternoon, he was in a great mood.
He was chatting up a storm. Laughing and carrying on with 2 of our grandsons.
I fussed at him for drinking his coffee lying down and spilling it all over the bed.
He told the boys he was in trouble and they laughed.
I stripped the sheets and remade the bed.
Hubby was sitting in a chair and announced,
"You know, I had a great time yesterday. I don't know what I did but I had a great time"
Hubby was pleased as punch and who was I to say he didn't even though I had no clue what he might have done. It's a positive and I'll take it.

A couple hours later everything changed.
Hubby realized he was having a problem and commented to me about it.
He didn't remember where he was or how he got here.
I spoke with him about this and he told me that he knew where he was earlier but not now.
I asked him if he was worried or scared. He said no but he knew it wasn't right.

I received some helpful suggestions from some of my Lewy Body FB friends.
I'll look into finding a way to bring some rest not only to Hubby but for myself.
Oh how I appreciate those waking this path of Dementia and their willingness to share ideas and suggestions.
It's so reassuring to know that we are not alone on this journey.

Monday, March 12, 2012

Things that go Bump in the night

Hubby and I had the pleasure of hosting our youngest grandsons first birthday party at our home :)

We had a house full of family, friends, and small children.
Hubby participated as much as he could and sometimes just his presence in the room was more than we expected.

It was a great day :)

Then the evening came.

Hubby's participation in family gatherings or anywhere several people are gathered together take a toll on him.
He has a difficult time processing the noise and chatter around him.
He does the best he can though.
The end of events leave him exhausted and cognition takes a bit of a hit. We usually get a bounce back the next day or so.
All these things I am well aware of and have learned to take them as they come.

I suppose a night of "Partying" was a little more than Hubby could tolerate though. I was summonsed out of bed by an out of the ordinary noise.
I ran to the bathroom to find Hubby standing at the bathroom sink with a death grip on it.
I helped him to a chair a couple feet away and watched him as he became glassy eyed and then shut his eyes, leaned back in the chair and proceeded to convulse like he was having a seizure of some type.
I pulled him forward into my chest and held on to him tightly, speaking reassuring words that he was ok and I was there.
I did this to keep him from stiffening out in the chair, banging his head on the wall, and sliding out into the floor. My hold on him would allow me to ease him gently down should that have become necessary.
I remained fairly calm.
I attribute this to my recent education on seizures from my friend Trish, who is a caregiver for her disabled brother Robert. Robert has epilepsy and experiences seizures. Through their willingness to educate and my willingness to learn, I feel like I was able to better handle the situation with Hubby. Knowledge is power.
You can read about Robert through Trish's blog, "Robert's Sister" here.

Hubby was able to stop the shaking he was doing. He realized I had him in the bosom of my chest so taking advantage of the situation, he plunged face first into it! I knew he was fine after that.
Hubby was extremely exhausted and after making sure he was stable I retrieved the wheel chair to escort him back to bed. I helped him settle in and tucked him in, gave him a kiss goodnight and we slept the remainder of the night.

The following night, last night, I was once again summonsed from my bed to find Hubby standing in our bedroom doorway. I asked if he was ok and he replied "No" then proceeded to convulse. I'm not sure if super fast is the proper phrase in describing how quickly I was able to envelope Hubby in my arms and hold him upright. Prepared to ease him to the floor if necessary. The wheelchair was so close and so far away to slide underneath him and if I could have maneuvered  Hubby around I could have grabbed it with my foot and pulled it, but we were stuck in our position until Hubby stopped convulsing.
Still in my tight grip embrace I was able to move Hubby around just enough to lean on the door frame, get my foot on the wheelchair and pull it to us. In the process I tangled my foot up in the wheel, ran over my toe and crashed into my knee.
Then I was able to set Hubby down assess me him and take him to bed, settle and tuck him in, get a good night kiss and sleep the remainder of the night.

I sure hope these incidents do not continue, but something in my heart says that this is just another decline in the course of Hubby's Lewy body Dementia.

Dementia doesn't happen only to the mind, but to the entire body.

Saturday, March 3, 2012

How old am I?

It was the best of times and it was the bestest? bester? oh whatever, it was really funny.

I am enjoying Hubby's calmness as of late.
The angry words and accusations seem to have diminished quite a bit.
Perhaps Hubby is finally coming to terms with his Lewy Body Dementia.
Perhaps finding a good combination of pain meds to help lessen some of Hubby's chronic back pain, has helped.
Perhaps a combination of the 2.
Whatever the reason I am ever grateful to a loving God for the blessings of peace :)

Hubby has acknowledged some changes going on in his mind.
He told me his mind keeps going back to a time when 2 particular restaurants were in our town. Both of which have been out of business before I ever moved her 31 yrs ago and perhaps were in and out of business before I was ever born. ( 26 1/2 yr age difference between Hubby and me)
He also acknowledges that he knows they can't be around anymore but for some reason, his mind sometimes tells him that they are.

This insight into Lewy has been the first REAL insight Hubby has ever shared with me that I can remember.
Most of the time I am left guessing and deducting what he might think and feel.
You can imagine how happy I was that he felt secure enough to share those thoughts.
He and I talked about the restaurants for a short,very short, time.

Mobility continues to decline at a quicker pace and that seems to be the most frustrating thing to Hubby.
The parkinsons type symptoms of his Lewy Body have made walking nearly impossible for even the short distances now. Fortunately Hubby has something to hold on to every couple of feet from our room to out adjoining bathroom. He clutches with a life grip, yet the other night he took a middle of the night fall in the bathroom. I jumped straight out of bed to get to him but he was wedged between the 2 doors.
Fortunately when we built our house, we put one door in that swings in and one door that swings out.
Isn't it amazing that God had the bigger picture in view when we did this?

Realizing I couldn't get in the one door, I leaped across my bed and through the kitchen and washroom to the other door. Hubby was able to move all his limbs. He had a spot on his knee and a pretty good sized goose bump on his head. A thin scratch on his back.
It took a good 20 mins to get Hubby uprighted and back to his bed. He is a stubborn and prideful man and refused to let me call for help from SonnyBoy who was sleeping in the other room. I finally demonstrated what Hubby needed to do in order to get up and Hubby was finally able to understand and rise from the floor.
I helped him into his bed and tucked him in. We slept the remainder of the night.

The next day we visited the Dr for medication follow up and lad test results. Hubby passed with flying colors all his lab tests and my good report of Hubby's behaviors and medication combination for pain easement made the Dr smile. He even laughed when he said "Good, we wont need to make any more medication changes:. To which I replied, "No, no changes, BACK OFF!" We both laughed actually :)
Dr said he was going to go ahead and schedule an appointment but if I felt like it wasn't necessary to be there, I could just call him with an update as he felt confident that if there were issues I wouldn't hesitate to contact him. I assured him he was correct :)

Communication comes and goes for Hubby.
He gets lost in his thoughts and easily sidetracked.
Words don't come even though he knows what he wants to say.
Many times he asks me if I know what he is thinking or will call me in to ask me if I knew what he wanted.

Sorry Hubby, I wish I was a mind reader :)

Simple every day things get incorporated into Hubby's conversations.
A word or phrase I might say will become part of a sentence Hubby is saying. Then he gets stuck on the word like a skipping record player.
Television is even worse!
When Hubby wants to talk to me or I need to say something complicated to him, I must try and remember to turn the TV OFF. Just down doesn't help because he can still see the movement and that distracts him.

Now for the fun stuff.

The day after our his Dr Hubby wanted to make a trip out to eat one afternoon. We eat a very late lunch or very early supper. I lovingly refer to it as "Old People's Supper".
On the way home Hubby made comment about his head still hurting and cupped his hand to his head and ear.
At this point I can only guess what was going on with Hubby and my guess was that he had a ringing in his ear because he said, "My phone is ringing"
Hubby pulled cupped hand off ear and looked at his hand.
I said "What?"
Hubby repeated, "My phone is ringing".
What could I say besides "Say Hello".
So Hubby did. He raised his cupped hand back to his ear and said "Hello?"
Then lowered his hand, stared at it, commented "That was weird" put it back to his ear and listened again.
It took every ounce of self will to keep from laughing out loud at this.
I just glanced out the drivers window occasionally and continued the drive home.
Hubby never realized he was not holding a phone but was not upset that nobody was talking to him.

Still having communication issues a couple of days later, Hubby and I were watching an old TV show.
In the show a girl screamed.
SonnyBoy, who was in a nearby room laughingly said "She screamed just as I sat down.!"
Apparently she startled SonnyBoy and he and I laughed about it.
Hubby didn't understand what SonnyBoy said so I repeated.
Hubby said, "SonnyBoy sat on her and that's why she screamed?!"
SonnyBoy and I both thought this remark was hilarious and through near tears I tried to explain that he did not sit on the woman, but Hubby never could get it straight in his own mind and seemed a little disgusted that SonnyBoy would do such a thing.
I have to agree that it is not polite to sit on women.

Some days, living in Hubby's world is a little more entertaining than the real one.
And Hubby's more comfortable when we can meet him there.

Today is Hubby's 75th Birthday.
It seems that Hubby has forgotten his age, not just by a yr or so but by the 10s of years, and over the course of the last few weeks, occasionally, he will ask how old he is.
Today when I wished him Happy Birthday, he asked me how old he was.
I replied "75"
His response, "Well, I'll take your word for it."
Happy Birthday Hubby. I love you very much :)