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.

Thursday, April 29, 2010


Everything I say must be repeated.

Lewy has taken Hubby into the world of garbled language. He doesn't always hear what I say. I don't know if it's my tone he can't hear or if his brain can not process the words correctly. The latter is actually my guess. This has been going on for some time but is increasingly worse.

I admit I am tired of constantly repeating myself to "Huh?".

Being more aware that Hubby had this hearing difficulty I try to speak up when I'm talking. I have even tried saying his name and getting his attention on me before I speak. I don't always remember to do that but I do try. I try and remember to speak slower, something that has always been a difficult thing for me as I grew up in the North and transplanted myself to the South. Some habits are difficult to completely break.
The main thing is I still try to converse with Hubby.

Conversation is becoming increasingly difficult though. For one I have never been much of a conversationalist. I steered away from politics as Hubby, who loved politics, had enough opinion for both of us and mine wasn't necessary. That's fine. News headlines don't make there way into the home by way of TV as I have found that Hubby gets more anxious when he watches the news. When state or world news became part of his own personal reality I took the easy way out of avoiding distress by avoiding the news or any other program that evokes thoughts of insecurity or danger.

Since we are basically home bound we don't get out and see people. So our social conversations are lacking. And those we do see on the rare occasion get as confused as Hubby when he tries to converse with them. They look at me and I just shrug, smile and divert the topic.

Mail or pamphlets that Hubby tries to read frustrate him. He was looking over a piece of mail we received and told me he couldn't read it. I asked him why and he said he couldn't see it or understand it.

We don't converse about TV programs either. As time went by Hubby's ability to keep up with a show plot diminished also. It's no wonder he can't keep up with a conversation. Even a short one.

I do get tickled at some of our conversations we try to have. I also get annoyed at having to repeat everything I say. Mostly I get tickled.

For instance,

Setting: End of a tiresome day. Hubby has been awake and needy all day and I have had to repeat myself to Hubby's "Huh?" the vast majority of the day.

We have had a few chilly nights lately. Hubby complains about being cold ALL the time so this cold snap has been a little extra chilly for him. As we were calling it a night I asked Hubby if he wanted another blanket on the bed for his feet.

Hubby said "Huh?" (Seriously, again?!grr)

Louder, I say "Do you want another blanket on the bed for your feet?"

Hubby gets a confused look on his face and says, "Do I want a bucket?"

I get a annoyed look on my face and glare at him. With agitation in my voice said "NO! Now why on earth would I put a bucket on the bed?"

Hubby's answer. "I don't know, you said it."

Dumbfounded I just stared at him and fell out laughing.

And thus is how many of our conversations go :)

So much better than comedy TV!

Friday, April 23, 2010

Hate/Love Relationship

I hate mowing.
I love mowing.

I hate mowing because it's usually hot and if it isn't I know it will be.
It's dusty and dirty and a job that has to be done often and it takes a long time. I usually have to dedicate a couple of days for it.
Gas can be expensive and mowers require maintenance I am learning to give. Our inability to just get up and go pinches me when I need stuff to repair flat tires or change oil or replenish gas etc etc.
One of my big fears is that while I am taking care the yard, Hubby will be in the house and fall down. I will not hear him if he does. That fear keeps me coming back into the house every little bit to check on Hubby and continually watching the doors in case he attempts to come outside to find me. I've nearly run into a tree straining to see the back door once. Call me George ;-) LOL

I love mowing because it is a solitude away from the phone and the monitor. It is a time I pray and reflect and have some 'quiet time' enjoying the beauty of the earth around me and the sky and the sheer awesomeness of God's handiwork. It's when I mostly appreciate the trees and the shade they offer when I'm hot and need to find rest under one for a short time until I continue with my chore. The sound of the mower drowns out the passing cars and other noises. I once made a comment that I enjoy praying while I mow because I know God can hear me even over the noise of the mower, Heart sounds are louder.

So God and I mowed yesterday and I talked and listened to a great many things.

The update on our bank fiasco has good news. Our income was returned to the sending institutions and placed in suspended status. We now have them un-suspended and should receive an income again in 10 days. YAY! Did I happen to say YAY?!

Our sleeping situation has not improved but I was woke only a couple of times last night. I tried to go to bed early and catch up on a few zzz's. I feel less brain dead today.

Hubby has had a few tough physical days. We took a pleasurable opportunity to have lunch with our baby girl and her hubby. It's strange when your children fight with you over who is going to pay. I offered but conceded her insistence as I know they are aware of our situation and want nothing more than to help in any way.
Hubby was barely able to make it into the restaurant but didn't want to use the wheel chair. We asked to be seated at a closer table than they originally gave us.
Daughter and Son in law gathered up the drinks and utensils and brought them to our new table. After our meal Hubby needed to find the men's room and I was able to get him there. As he went inside I scooted out to the vehicle and retrieved the wheel chair. He did not fuss about the ride out.

He barely walks around the house the last few days due to this difficulty. I try and encourage him to use his walker but I truly believe he doesn't know how to use it properly. No matter how many times I try to explain and demonstrate he wants to "push' the walker. I fear he will topple over and tangle himself up in the walker. That would surely be a site. He uses the walker as a place to put his housecoat. At least it isn't on the floor for him to trip on.

Last night in an attempt to get to the bathroom he spilled a glass of milk and didn't make it in time. A more frequent problem. He went in to clean up and change and upon his entrance he announced there was a big bug in the bathroom.
Normally I would jump up, collect the necessary killing tools and go concur the beast but instead I asked him if he killed it. Hubby happily answered "Yes!"
To which I responded like a damsel in distress, "MY HERO". Hubby smiled and laughed and said "Yep!"

Those are the moments I want to and hope I focus on in the midst of all the confusion and tiredness. I want them to be beacons in the storms of this Lewy Life.
it hasn't been easy this past month to find the light so I am learning (not there just yet, may be a long process) to be calm and listen to the small gentle voice of God. He can show me what I'm missing and more often than not asks me if I'm finished throwing a tantrum so HE can show me.

Thursday, April 22, 2010

Night time feedings, security blankets, needyness and loss of sleep

Sounds like a new parent and baby doesn't it?

Nope, it's not. It's me and Hubby :)

Hubby sleeps so much. Even though he takes a night time sleeping aide he STILL has nighttime house wandering. He can even be in a wake pattern for a couple of days in a row and have the need to completely crash yet still have the night wandering. I am blessed that he never tries to leave the house. One thing in our favor may be that we live in the country so to speak so it's pretty dark and difficult to see at night. That compounded with his poor eyesight anyway may make him feel safer in the house, even if he isn't sure if it is his house or not.

Hubby likes to eat at night also. With no sense of time he has announced to me in the middle of the night that he wants me to make him some Malt O meal.
Umm... NO.
He raids the refrigerator for anything he can find. I am happy he still likes to eat but his lack of movement and limited intake of fluids due to the excess sleeping cause him constipation problems. I can not make him understand that.

I have realized that when Hubby is awake he is very needy. From the moment he wakes until he lays back down he needs me to do this or do that. He never asks, he never has come to think of it, but tells me what he needs or wants.

I need something to eat.
I need this junk fixed (remote) so i can watch that (TV).
My feet are cold. Turn up that thing (heater)
The toilet is stopped up.
I need this blister fixed.
Hey Honey?... (complete silence and conversation never started or if it is, never finished)

Of course I jump and run and tend and do and fix and turn and find and suggest and wait.

At night when I get to sleep he will poke and prod and spat and touch me all night. Making sure I am there. Like a security blanket. And he won't stop until I acknowledge I am awake. Then he starts again when I fall asleep.

My mind and body need continuous hours of sleep. Straight, in a row hours. Not divided up in segments. This broken sleep pattern causes me to have brain fog and irritability problems. I nap during the day but it just isn't what my body needs.

I remember when our children were babies I did the same thing when they first got here. In my head I remember reading it wouldn't last long. I remember some family telling me the same thing even though it felt like forever until they grew out of it. When the next child came the same cycle of crazy sleep occurred and I remembered it wouldn't last long.

I don't have that same feeling now. I don't know how long Lewy will keep my sleep disrupted. I am tired and stagnant. That sounds pretty pitiful but truthful :-0

On a good note...
I'll have to think on that one right now and get back with you ;-)

Sunday, April 18, 2010

How can I be angry at him?

Yet I find it happens so I try to change the focus of what I am angry at.

I have learned, for the most part, not to make plans for anything and NEVER promise anyone we will attend, meet, go. I have been disappointed too many times and do the best I can to avoid the emotion.

We make plans to do things. We talk about them and plan out our schedule for accomplishing them only to lay them aside in the end. The emotional effort that goes into planning a trip just to the store is pretty big around here.

Today though, I find myself once again in the throws of disappointment and yes anger. Anger I am trying not to displace.
Last night we made all the plans to follow through with a trip to our grandson's 4th Birthday Party.
I have told all of our children do NOT count on us to be able to join you in anything. I don't want them to be disappointed if I say we will and then turns out we can't.
Hubby carried on a very clear and concise conversation about it. We planned the attire and timing for the 3 hr trip and it was set that we would go. I went to sleep excited at the prospect of not only getting to see our grandchildren, and daughter, but seeing the surprise on our daughters face when we arrived. I knew we would be greeted by all sorts of hugs and kisses and maybe a few happy tears. Now all of that is dashed into the ground this morning.

But I have to keep asking myself. How can I be angry at Hubby?

If I woke up or found myself in a strange place with people I really do not remember how would I feel?
If someone told me something I was supposed to have done and I didn't remember it, how would I feel?
If a stranger I was told I was married to announced we made plans and started telling me I needed to get ready to go but I didn't remember, how would I feel?

How would I feel if every day I was lost in partially familiar territory not knowing how to find my way out and only being comforted by the few things I did remember. If I couldn't distinguish between my dreams and my reality. "Did I dream that or did it really happen?" If I thought I had conversations with people that seem real to me. If my mind told me I could do something and my body disagreed.
How would I feel?

So I MUST daily remind myself of those things for Hubby's sake.

I am however, mad as hell (sorry) about Lewy bodies.
It steals so much and the harder I try to fight it the harder it fights back.
Mocking me that it will win in the end. I just want to give it a run for the money. It just really beats me up some days.

There is only so much one person can deal with and some days I think I may be at the end of my rope.
Hubby's Home Health Contract expired and he was booted out of the system until the V.A. catches up with the authorization for renewal. This means no aide for him and no quick errands to town for necessaries. (Thank the Lord for family willing to make a milk run) Why it may take more than 2 weeks to renew is beyond me. Especially since I was on the phone with them as they put in the request. But This person has to OK it and That person has to double OK it. (rolling eyes).
Of course I have every capability to tend to Hubby's personal care and I do. I think the aide is more for me than Hubby :)

We are also on 3 weeks since the horrible bank incident.
Still no funds available for us and although I was able to scrape up enough money to get the bills paid, next month's crop of bills are coming in with no resources available to take care of them. **This is not a cry for help. This information is strictly for an update on the situation. I truly believe things will be taken care of in due time.**

Today I still have some rope left to cling to.
I don't know who reads this thing but I do know it is a pretty good therapy for me.
Just getting the words out of my head helps.

It's a beautiful Sunday. Cool and crisp.
Hubby sleeps quietly and peacefully as opposed to thrashing and talking.
Grandson will have a wonderful time with his friends, brothers and parents. They will know I am thinking of them.
I have a roof over me and food in the house.
My internet is connected (very important) ;-)
I am loved and prayed for.

In everything give thanks.

Saturday, April 10, 2010

A few hurdles jumped

You would think with as much hurdle jumping as I seem to do in this Lewy life I would lose weight.
No, not me. I have to sit down and eat as I contemplate my next move in overcoming the obstacle in my way. Feed my stress. I wish my stress liked raw carrots instead of carrot cake with cream cheese icing.

When I last left you Hubby was successful in closing our account and cutting off our income. I sent the judge a request for a temporary emergency guardianship but since Hubby's life was not in eminent danger the judge wouldn't grant it. I suppose it's Ok if we have no utilities as long as Hubby is in no danger.

God ALWAYS provides a way. I was successful in convincing Hubby to cash the final funds check and was able to pay all the outstanding bills for the month. We may be eating tuna and cereal for a while but protein is good :) Of course our prayer warriors and family and friends have offered whatever help we need until we get this situation straightened out. The Judge I serve can out rule anyone.

Hubby had an 8AM appointment with his Neurologist the other day. We have a 70 mile trip to the "BIG CITY" YIKES!! 8AM!! Besides morning rush hour traffic to consider we need a 2 hour window to get ready and out the door. I suppose I prayed enough about it and should be grateful that Hubby is a night wanderer so he was up anyway by the time we needed to start getting ready. As a matter of fact we left early enough to get there with enough time to beat the traffic and have breakfast in the cafeteria.

Getting ready presented it's own set of problems as Hubby was having an extremely terrible physical AND mental day. Much help was needed in getting him dressed and  out the door but we did it.

A few days earlier Hubby had a list of things he had said he wanted to talk to that Dr about. One was his insistence that he should be able to drive. I promised I would write it down so Hubby could ask about it. While waiting for our (Hubby's) appointment Hubby decided he needed to use the rest room. He was insistent on walking by himself but the room was quite a ways off. Determined to go on his own he only got a few feet before someone offered to assist him and Hubby took him up on the offer. I took that as my que to approach with the wheelchair and transport him the rest of the way. Hubby was happy for the ride.

When he shuffled into the men's room he seemed to be in there quite a long time. I was glad it was a busy restroom as a nice man that emerged asked me if I was with an older, confused man. I said I was and he reported that Hubby seemed confused and was moving slow. I thanked him for the info. Hubby still didn't appear so I asked a random stranger if he would walk into the men's room and check on Hubby. He agreed. I described Hubby and told him Hubby's name.
 When the kind gentleman walked in he loudly said, "Hey, Bobby" at which point I heard Hubby happily and excitedly say "Hey, I haven't seen you in a long time." The kind gentleman laughed and said "Yep" I took the chance to yell through the open door that they had called us for our appointment and Hubby emerged happy that he had run into an "old friend" Hubby's day was made :)

We scooted into the exam room and our kind, compassionate, caring and thorough Neurologist addressed Hubby asking him many questions about life at home and how he was able to do things. Many of the answers were that I assisted or did almost everything for Hubby save feed him. He still has that ability just modified for his convenience.

Dr asked Hubby if he was driving and Hubby looked right at Dr and said. Well, I think I took myself off that list.
WHAT?!!!! Dr should have been at my house for the last few weeks!!
I sat there not sure whether to let out a disgusted breath, laugh or say WHAT?!! I chose to remain silent and appreciate that Hubby has decided to give up his driving voluntarily. (rolling eyes)
Dr agreed that driving was not a good idea any longer and that Hubby made a wise decision.

Dr told Hubby he was going to test his memory. Hubby failed SO miserably that I wanted to cry. Just from the last time we saw Dr 5 months ago there has been a dramatic decline in Hubby. I suppose when I am in it every day I don't REALLY notice the huge decline. We adjust and it becomes our normal and we move on.
Dr asked Hubby a few more questions and told Hubby that his memory had really worsened. He then asked Hubby , since I was the one taking care of everything what did he think about me being Hubby's guardian. Hubby scooted in his chair, looked right at Dr and said. "I guess that would be all right"
Again, WHAT?!! When did Hubby change his mind? I am just grateful he did and Dr filled out our legal paperwork for me to take to the Judge. Looks like it's just a matter of waiting and formality now.

As we were leaving the V.A. We have to pass through pharmacy area.  Hubby started looking for his "old friend" when we went through. I told Hubby I thought he would already be gone. Hubby said "Probably."
Hubby was happy the rest of the day though. For that, I am thankful.

While there we took care of some other medical things such as the Home Health Care renewal. The V.A. drags it's heels so I have learned that it may take up to 2 weeks to get Hubby back into the Home Health Care system as his contract expired and the system kicks him out once it does. Paperwork, paperwork!!I WAS however able to get my needs met for the Home Health Care time. Same hours per week, less days just more hours in the day. Time to actually DO something. BIG SIGH OF RELIEF! Now just to get it kicked in again. I'm back to having to depend on family members once more. I am blessed to have willing and supportive members :)

So while I figure out this hurdle, I think I shall have some ice cream ;-)

Monday, April 5, 2010

So much for that

Apparently when a check is issued to two people using the word AND they BOTH must be present to cash said check.

Sufficient Day

"I messed things up, didn't I?"

I had to agree with hubby's statement. We were in a fix.
The next statement made me laugh,

"You didn't have to agree with me."

I had to laugh and hugged him tightly. He then said "I know I can get hateful sometimes." his way of apologizing.
I said that I understood that it isn't always him and he can't help it, for the most part. I hugged him again and reminded him I loved him. He said he loved me too.

I have this very deep faith. I follow the leader of my heart. Even with this faith, many times I see a road that looks easier to take and attempt to travel it only to find myself in a mess for sure. I run back to the leader and find Him waiting for my return and happy to see me. I follow and the way looks steep, narrow and scary. I cover my eyes and ask "Are You sure, are you sure?" but I keep walking. I wonder if He sighs as we pass another pretty path and I point to it with anticipation to go that way. Forging ahead there are times I find myself mired down in the day to day monotony so I sit on a stump and just sit and sit. Absorbed in myself  and my situation until I get knocked off by some strong event. Again I follow for fear of being swallowed up in fear, depression, anger and bitterness. Not that I'm not chewed on by them, I just don't want to be swallowed.

One day I know I will come out on the other side until then I take one day at a time. I try and do the best I can for the day and let tomorrow worry about itself.

Truthfully I wasn't sure how we would get out of our fix. I just knew that I would do what I could for the day. Blessed beyond words by the most understanding people, prayer warriors and family. Our youngest daughter and our blessing of a son in law took it upon themselves to pay one of our bills. My heart rejoices that they want to take care of us, at the same time my heart hurts that they felt it necessary. All of our children and family and friends have rallied to offer help in whatever way. I believed it would all work out some way and to some degree it has.

Hubby had the bank check from the account he closed. He never signed it for me to use as it is in both of our names. He even hid it from me by putting it under a drawer. He later revealed it's location to me after we had the mess conversation. He finally signed it and I shall carry it to the bank and open an account in my name and pay our due bills. Of course it will only go so far and when it's gone it's gone but at the very least the bills will be paid this month. God is always an on time God :-)

The next obstacle is his monthly checks. When will they arrive and how will we be able to use them if he hides them also? But that's a problem for tomorrow.

Matthew 6:34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.