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, June 28, 2011

Holding Pattern

Until this morning Hubby and I have been in a holding pattern for illness and caregiving.
Can't say anything was good, can't say anything was bad.
To me, everything seems 'normal'.
It's funny what caregivers consider 'normal' in our lives. Or at least what I consider 'normal' in mine.
Especially caregiving for dementia.
Lewy Body Dementia takes so many things away from Hubby and keeps them out of reach from me.

Hubby still struggles to admit his limitations. Sometimes I'm sure he knows he has problems and other times I really wonder if he is aware of them.
He can be quite stubborn about many things. For instance. I have been trying to get him to agree to a day facility for just a few hrs a couple of days a week. I tried to encourage him by highlighting the fact that he can get out of this house and associate with other people and have some time away from me.
I tried to argue (I know I know!!) the point that it would give me some time to get out too and maybe even join a health facility again. Something I need to put back into my life.
I could do things alone at home but lets face it. The reality is I really suck at self motivation.
I need people in my life.
But Hubby will have no part of it.
His reason?
He doesn't want or need to go there but if I want to go alone I could.
Uh, sorry Hubby but that's NOT happening.

Then there are the other times Hubby will admit he can't do something like ride his bicycle or walk up the driveway with me to check the mail. There are times he struggles to just walk across the bedroom and asks for help.

When we get the lap over is when he is insistent ( a mild word) that he has the ability to drive, stay alone, etc etc in one breath and in the second, needs me to fetch him something to eat or drink because he can't get it himself.
Truth - This is the times when I'm annoyed with caregiving.

This is our normal though.
This is the holding pattern we seem to have been in for a little while.
This is also the time when I seem to collapse in on myself.
Feeling suspended in time and finding it difficult to move forward.
Wanting to hold on to moment yet waiting for the next change.

Hubby's most recent loss has been the placement of his wedding ring.
Hubby doesn't wear his rings all the time and the last couple of times he has, he has asked me which hand the wedding ring goes on. He says he can never remember. I tell him, believe me, I will remind you and not let you forget. We smile.
This morning he can barely walk and needed chair assistance to and from the bathroom.
There seems to be no reason to this sharp decline but Lewy doesn't really need a reason for anything.

In our holding pattern Hubby has felt like sitting out on the deck with me a couple of times in the evening.
One night we sat out and dreamed about things we would like to do. They weren't big travel plans, just home remodels and yard work. The expensive kind of course LOL! Hey, I said dream!
It felt good to dream with Hubby.
He still holds hope for his future.

Tuesday, June 21, 2011


I invested heavily in some 'me' time and took a 3 hr nap today.
Hubby morphed into his wander mode.
I woke twice during that time, once to do an auditory survey of Hubby's shuffle and once to roll over.

When I finally woke up I realized that there were some of Hubby's candy bars on my table.
He had been saving them and surprised me with them.

Thanks Hubby,
I love you too.

Saturday, June 18, 2011

Stand up, dust off, get back on the Lewy Body Dementia train

SOoooo, how do you handle a ghost in the bed?

I don't know either so I just left it there.

When I was a little girl I lived in NY state.
The winters are cold and snowy.
Ice skating is popular.

In winter our long and rutted out driveway had ice in the dips.
To an 8 yr old this was prime ice skating property.
Bundled up and wearing my skates I spent some happy moments driveway skating.
Then the unexpected happened.
I slid and fell.
I fell hard.
I cried a lot.
Sitting on the ice, cold and hurt I couldn't imagine anything hurting more.
I couldn't get up.
Then my Daddy came outside.
He checked me over to see if I was okay then he picked me up and carried me into the house.
He helped me get my skates and coat off. He placed me on the couch with a blanket and brought me hot chocolate that he had made.
That feeling of safety and comfort still remains with me.
That was 40 yrs ago.

After our big fiasco the other night I spent a day decompressing.
The pressure was all coming from myself and that had to change.
I cried a lot, I was hurt and I couldn't think of anything that could hurt more.
I prayed for comfort but I couldn't get up.
Then my Father in Heaven heard my cries.
My support team came running,
err typing,
prayer warriors, well wishers, encouragers, family, friends, my list is long for emotional support and I am so blessed to have them/YOU all.
You picked me up, helped me remove the constricting feelings of guilt and wrapped me in your love and offered me emotional hot chocolate.
Thank you for caring.
Thank you for reminding me to be gentle with myself.
I am.

Yesterday Hubby slept all day.
Today he was having a good day.
He recalled with ease several things and incidents of long ago.
Communication has been good too.
He willingly participated in a family gathering when his daughter came to visit us.
We hadn't seen her for quite a long time and it was good to catch up.

Today is an easy day. That is not to say it doesn't come with it's challenges and odd questions or proclamations but I deal with each thing as it comes with my own self awareness for reaction.

I will try, try being the word of the day, to react to upsetting words in a different way.
I think 3 yr old grandson taught me this lesson.
When 3 yr old is upset because he can't have more candy he pouts, he whines, he cries and pleads to have his way. Most of the time I ignore him and tell him if he chooses to behave that way he needs to do it in another room away from me. Other times it means he is ready for a nap and this upsets him more and he declares that he hates me.
I know 3 yr old does not hate me.
His words do not bother me. He's 3.
I just remind him it is his right to feel that way and there are no laws against it but I still love him anyway.
My heart doesn't ache when this happens, my anger doesn't flare.
It is what it is and it doesn't last long before I am reinstated back to the "Happy" that 3 yr old loves "big".

This will need to be the attitude I develop with Hubby.
It wont be as easy looking into the angry face of a grown man.

Will I succeed?
Probably not all the time.
I'm not superwoman.
Thinking I can handle all things all the time is a false idea.
The best I can do, is the best I can do.

I'll fall apart and fall down.
I'm not perfect.
I'll make mistakes.
I will use and have regrets for harsh words.
I will forgive myself and continue to love.
Oh my goodness...
I'm human with human feelings.
And you know what?
It's okay to be human.

Friday, June 17, 2011

My own worst enemy

Feeling the need for a little "me" time I made a trip to the hairdresser and got my hair cut.
It has been more than 2 yrs since I had taken the opportunity to do that.

My biggest concern in doing it was the thought,"Will Hubby get more confused as to who I am?"
I decided to do it anyway and cross that bridge when I got there.

Upon my return home Hubby's first reaction was "I like it" YAY no strange looks or weird behaviors so any second thoughts about doing it were laid to rest.
The evening and the morning came.
Hubby was feeling good and decided he wanted to go have lunch and find some green tomatoes.
I was eager to do those things with Hubby and had no fears about our outing. The last couple have gone pretty well so I felt at ease in the decision.

The day was really good. :)
Hubby was more mobile. He wasn't anxious. He was more chatty and clear on the topics he engaged. Granted they were few and most of lunch was eaten in silence but that was okay.He was feeling good, wanted to get out and I was happy to be able to provide the opportunity for him to do just that.

Our return home found me looking for a nap so I snuggled into our bed and feel asleep with a peaceful feeling.
When I woke Hubby was up and sitting in a chair. He suggested we go visit his sister.
Since I'm always happy to go visit SIL I was eager to go and we did. We had a nice visit, Hubby did well just got tired as the evening wore on. We sat outside on her deck and listened to the thunder and lightning.
It was a good evening and we made our way home.

I joked on my facebook page that we had such a good day because maybe Hubby didn't know who I was with my new haircut and wanted to be seen with his new 'lady friend'. 74, dementia and still got it going on! ROFLOL!

Through the rest of the night Hubby and I made chit chat conversation which for us is a lot. Then in a sudden blindsided blow, Hubby announced that we needed to talk.
I did NOT see this coming.
My standard prayer to keep me reminded of the situation and to act accordingly must have been said without actual feeling because I let Hubby get to me with his words.
Angry at and suspicious of me.

I was hiding things from him,
I ws stealing his money,
He didn't know who I really was,
He wanted to know how he got here,
He thought he had been moved into this house for only 6 months,
When he first got here there were 4 of me and we were trying to trick him and steal his mind,
He wanted to know how long I had lived here,
I was keeping him trapped,
Who said I could keep him here,
He didn't know why he needed someone to take care of him,
He was going to have me moved out by checking himself into the VA hosp and living there.
He was going to get a lawyer and get out of his trap.
Who gave me permission to steal his money,
I keep trying to trick him...
over and over until he finally wore me down with his accusatory words and hateful feelings.

At first I deflected his emotions.
Keep your cool,
He doesn't know what he is saying,
He will forget in the morning,
Try to change the subject,
Find somewhere else to go,
Offer him food...

I think that lasted all of the first go around.

This is where it gets ugly
the wifely caregiver apparently only gave it a half hearted shot in conversing with her husband/caree
but enough emotion sucked in the intimate wife dealing with her husband.

I didn't remain calm, I wasn't polite, he said things to try and hurt me, I retaliated.
Our frustrations were scattered everywhere.
I couldn't even make myself settle down and to be very honest, I WANTED to be mad at him so I didn't try extra hard.

At the end of out verbal rant he had the nerve to ask me to make him a sandwich.
I laughed at him, recapped what he said to me. I was supposed to be okay with it and just go about making him a sandwich?
I left the room by telling him to make his own stupid sandwich..

I slept in the recliner.
(WOW, I just realized, this is the FIRST time in our nearly 30 yrs of marriage that I have ever slept someplace else. I never gave up my bed in an argument)

I lay there in the dark and I heard Hubby shuffling toward the living room. I heard his presence in the door and then I heard him shuffle off.
He continued to do this the remainder of the night until I finally rose this morning.

Now he sleeps and I feel terrible.
I try so hard to preserve his emotional calm, his manhood and his pride and dignity, yet I am the one that can shred it faster than an industrial paper shredder.

My heart hurts today, I've cried a lot and I'm struggling to separate the intimate wife from the wifely caregiver once again.
I tried to read scripture for support but all I seemed to look up was about fools and their anger and keeping our mouths shut.
Some days it feels impossible to keep it all together.

Tuesday, June 14, 2011

Me And My Lewy Body Shadow

I was so tired from lack of adequate sleep I went to bed before 10:30 PM one night only to be waken shortly after midnight by a tap on my leg. Hubby was laying in an odd position at the end of the bed and couldn't get himself switched around.
Not immediately aware he was stuck there I asked if he was OK. He said he was, but that he had a big mess on his side of the bed. I got up and walked around to survey the problem and sure enough, a pool of ranch dressing, a whole bottle of it, poured all over the floor, all over the side of the bed. sigh

Hands and knees I cleaned it up, sputtering to myself and about the situation. Then I realized, I was grateful for the exercise mats I bought and placed on Hubby's side of the bed for messes and easy clean up. Then I went back to sputtering.

By the time I got it all cleaned up  I was wide awake and decided to watch a few netflix shows. Another sleepless night.
Side note, Netflix has been a wonderful addition to our lives since we don't have the ability to get up and go to the movies or run down to the local video store.

Morning brought it's own sputtering moments that were associated with coffee and breakfast orders but we got through them.

Aide arrived and while Hubby was getting cleaned up I overheard him talking to Aide about the house.
Hubby doesn't believe he is in his own house. He actually made me laugh when he told aide she wasn't going to fool him into thinking it was.

Perhaps the lack of sleep caught up with me in another way because I've been sick for the last few days. Actually sick enough to have slept for about 2 of them.
Poor Hubby has had to make due with what I was able to drag to him or what he could forage for himself, which hasn't been much. Good thing for snack foods.

I'm feeling a little better today but still not quite well enough for me.
I have learned a few things while ill.

One of those is when people were talking to me theirs speech sounded all garbled and I couldn't understand what they were saying. My brain chose not to assemble the words into coherent sentences leaving me to stare blankly trying to sort it all out. I actually could not finish a conversation with my daughter because I couldn't concentrate on what was being said. It was terribly frustrating.
I wondered if this was the same thing that is happening to Hubby?

And even though today is better for me, Hubby still continues to have communication problems.
He can't hear me or understand my words. He has said some off the wall comments.
He wanted to know if the UPS man brought a box of green tomatoes (Hubby's fav)
Then he wanted to know if I was going to call State Farm to see if they had any green tomatoes.
Uh, No and No Hubby but if I'm feeling up to it tomorrow I will go to the local fruit stand and see if I can find some for you.

Another thing I learned is that Hubby sleeps the majority of the time EXCEPT when I am sleeping or not in the room.
I have come to realize that as long as I am seated at my desk where when he opens his eyes he can see me, he will sleep. BUT if I'm out of the room for any reason and he wakes, he comes looking for me. The other day I had stepped outside and he didn't know where I was. When I came in I could tell by looking at him that something was wrong. I asked if he was OK.
He wasn't angry or scared but had a concerned tone and he said "I just didn't know where you were."

Then I realized that while I sleep, he was up more, wandering the house.
Most of the time I just woke up when he got up to notice him gone but at other times there was evidence of him being up (dishes, trash scattered around, etc).

I worry about him wandering around since he is a fall risk. He's already taken enough falls without serious injury but I wonder just how many more he can take. I really don't want to know, but I can't keep him chained down. 2 falls in the last 2 weeks and today I just noticed that one of those times he had fallen and broken our bathroom scale.
Actually I have been saying it has been broken for quite  awhile now but that's a whole other story.

And just today I woke much later than normal. Hubby was already up and out of bed and was wearing his cap.
I asked if he was going outside to which he answered he already had been.
Apparently he HAD been outside to try and ride his bicycle.
He pushed it off the porch across the drive onto the grass but realized he couldn't do it so left it there and came back into the house. All the while I WAS SLEEPING!!

Our son, who was here, watched his father and told me of the struggle that Hubby had in his short lived effort.

Hubby also told me that he knows there is no way he can ride his bike.
I sympathized with him and left it at that.

But I wonder. Will I need alarms on my doors now to alert me?
When we cared for Hubby's mother we had to have them as she was always trying to get away. She would fight you to get away. Hubby isn't like that. Although he doesn't really believe that this is his house and he is always talking about moving, he has never tried to get away. So I don't believe his outside experience was an attempt to escape but more an attempt to do something he thought he could, like, ride a bike. I just wish he would let me know when he wants to try things. His independent spirit is very strong though so I doubt he would let me know.
It's hard to know where the line is when dealing with the independence of a person with dementia. Especially when their safety is priority.
My prayer is to maintain the balance between Hubby's independence along with his dignity and pride. It is very important to me and I struggle terribly in this area.What feels easier and safer to me may not be what Hubby needs.
Hubby may not remember me, or the house or how to ride a bicycle.
And perhaps 'Hubby' himself is gone but 'the man' is still there, somewhere trapped in Lewy's world.

Thursday, June 9, 2011

2 coffee pot day

Hubby had a busy night last night.
Many shuffling trips to the kitchen to raid the refrigerator and of course needing all the support he can get by leaning on various noise producing things.
Scooting chairs,
frig doors with misc jar items in them,
fully top loaded dressers with clinking things on them (UGH note to self, CLEAN OFF THE DRESSER!)
the foot of the bed where MY FEET ARE!  Both ways. Although this wasn't noise producing the wakening seemed unnecessary.

Lewy body causes Hubby to shake without control. So when he clutches the bed it's almost like having a vibrating bed. That used to be fun when I was young. Not so much now.

So after Hubby tires of the kitchen trips he decides to raid his candy drawer.
Candy that has rattling wrappers. Wrappers that have been glued with never get it open in the night glue!
Hubby fought the candy for what seemed an eternity until I wanted to throw the candy out the back door!

So needless to say, my night was busy too and my interrupted sleep made for a cranky Kathy this morning.

To add to my attitude I had forgotten to set the timer on my coffee pot. This means I must wait for my coffee instead of it waiting for me in the morning.
At this point I am not sure who I am more annoyed with, Lewy, or myself.

Yes, I know I have a bad morning coffeeless attitude, and no, I don't intend to do anything about fixing it. So deal or stay away until I have had at least the first cup ;-)

But does Lewy remember this? NO! Lewy rises and makes a trip to the bathroom. Then he sits on the side of the bed and wants to know where his coffee and sausage biscuit are.
Are you kidding me?!
You walked all night getting things for yourself and now you are placing orders?!
Well I will have you know right now that I took a deep breath, sighed, and grumpily mumbled, ok as I retrieved his breakfast.

Proverbs 15 :1 A gentle answer turns away wrath,  but a harsh word stirs up anger.

I hope low tone mumble counted as soft.
In the 60 seconds it took to get his coffee and bisc, (and my second cup) I recalled a time Hubby woke up and asked me what time they served breakfast around here not realizing he was in his own home. Maybe this was a time like that.


By the afternoon the coffee had already made it's internal round and bathroom trip so all was well with the world again. :)

Hubby has been quiet and or sleeping.
After a bathroom trip he decided to put on a pair of shorts that had buttons.
I watched him attempt to button them for close to 15 mins.
It saddened my heart to see his struggle. I weigh heavy the options of when to help and when not to. I don't think I'll ever master that decision making.
Finally frustrated Hubby announced, "Well I can't get these things done."
I offered to help which he accepted gladly.
He then sat down on the end of the bed and in a disgusted and defeated tone said, "And I think I can ride a bicycle."
I looked right at him and smiled real big and told him, "Well Honey, We all need to dream."
He thought this was quite funny and started laughing and said, "I guess you're right".
Then in a matter of fact tone, I added, "Of course I am."
A remark that made us both laugh.

Sunday, June 5, 2011

Broken Dictionary

Since living with Lewy Body Dementia, I realize more and more that, to Hubby, I am literally his everything.
Yet somehow, the meaning does not look or feel like the mainstream romance definition for movies, books and music for some reason.
We need a song :)

Thursday, June 2, 2011

I want to ride my bicycle

OK so I know this is a double post for the day.
But I promise my apology for 2 in a day is probably  longer than what I want to share.

Hubby had asked for a bike for weeks until I couldn't avoid any longer. 
FedEx pulled up with his freedom box this evening. 
I assembled it in the heat, sweat pouring off my nose. 
Hubby sat on the stairs inside the house with the door open to watch. 
After I got it assembled, aired the tires up and gave it the once over I proudly announced,"It's ready to ride".
Hubby's response, "I don't feel like it." 

Looks like I got a new bike ;-)

Spontaneous combustion?

I love being spontaneous!
Or I used to love it.
These days with Lewy Body Dementia running the show, being spontaneous raises my anxiety level.

A couple of days ago Hubby decided he needed a haircut.
He refused my offer to buzz it and wanted to see a professional.
I  don't blame him there. I really stink at barbering, and I know it!!

So a haircut doesn't sound so bad, does it?
Immediately my "sneaky devil' radar started blipping.
We've already had a terrible round of trickery from Hubby under the guise of a haircut.
I get nervous. My pulse quickens and my palms get sweaty. Every scenario runs through my head.
Anxiety creeps up the more he insists and me with no really good reason why we can't do it.
Lewy doesn't help matters either when he gets completely ready to go!
Completely dressed, alone, shoes socks. He's waiting on ME!

I try to delay in hopes that he will tire and wish to nap.
I change shirts and run a comb through my hair.
Add to the equation 2 of our grandsons (ages 3 &5) that are here with us also.
We find socks and shoes and of course they are easily found because Happy (my grandma name) has taught them to put their shoes in the same place every time!
I mean, when did they start paying that much attention? They are 3 and 5 afterall.

So the boys proudly present their shoes and get them on the right feet.
oh yay :/

I ask Hubby if he wants to ride to the car in the wheelchair.
No! (firmly)

I decide to load the wheelchair anyway despite his insistence that he doesn't need it.

Once loaded and buckled in we make the trek to town. Chatty boys in the back seat, Hubby talking about the unfamiliar scenery and my mind racing.
Gripping the steering wheel tighter as we enter town, I suggest we go to a larger facility than Hubby wants so I could use the wheelchair.
Guess what he said?
Go on, guess.
Yes, he said no.

I get annoyed and Hubby asks why so I explain that he insists on doing things the hard way and it frustrates me, then I stop mid explanation and  tell Hubby, "You know what? Instead of being upset I should just appreciate the fact that you want to go out and do something. I'll stop complaining about it. I'm glad you want to get out with us." Hubby and I ride silently the rest of the way listening to the chatty boys.

I park as close to the door as I can for Hubby who still refuses the chair.
The boys are excited and as young boys do, they must investigate every thing they see and come back to tell me. Apparently their behavior distresses Hubby enough to throw his walking off and he freezes every time he concentrates on the boys. Or so he blames them for it.

(personally any activity Hubby concentrates his attention on does the same thing but I'm willing to let the boys take the blame as long as he isn't mad at me right now)

I send the boys to stand by a large flower pot and look at everything there while waiting for us.
Off they go.

I finally get Hubby inside and get his hair cut while the boys chattered about everything.

Oh great, now we have to leave. Boys scramble from their chairs and out the door.
Their little legs and feet are moving as fast as my pulse knowing we are going back out into the world. Away from the safety of home. Once we finally get to the car Hubby decides he wants to go get something to eat.
I only ask where, already knowing the answer because I am the one that will make the decision anyway.
Once there it takes 3 of us to get Hubby inside. And yet he STILL refuses the chair all in the name of his pride.

Food ordered, Drinks served in to go cups, food served, everyone's meals cut up.
Once we all finished I suggest that Hubby may want the chair to ride out in.
He agrees!!!!
I didn't give him time to change his mind before retrieving it from the trunk.

Loaded and locked in we head for home, but I'm still on edge about being out. We aren't home yet and the day is still young enough for Lewy to make trouble. With every thing Hubby suggests he do I fret inwardly so not to show him my frustration.

A stop at a friends place of business had Hubby trying to get out of the vehicle but unable to finish his attempt. Melt down had occurred so I put his legs and feet in the vehicle, buckled him in and away we went to the safe harbor of home.

Once home, even 5 yr old took Pappaw's hand as he got out of the car. I unlocked the house, threw down my purse and got the chair for Hubby to give him a ride in.
Since then Hubby has pretty much been wiped out and slept.

No serious incidents so I was fraught for nothing.
Serves me right worrying about something I had no control over.

One of the difficult things about being a spouse caregiver to dementia, at the end of the day, I have nobody to pillow talk with and bounce the events of the day off.
Nobody to hold me and say, you got through the day just fine, or, tomorrows another day.
The loss of intimacy, both physical and mental, is painful even if you think you have moved past it for the most part.
I think it's like having your heart picked apart in small pieces, like a crow on roadkill.

I can't leave this post like this so I'm adding something I found from an earlier time that I forgot to publish

Hubby: "I don't feel good."
Me: "What's wrong?"
Hubby: "I don't know."
Me: "Are you sick to your stomach or just general feel bad?"
Hubby; incoherant
Me: "Are you , Go to the Dr sick?"
Hubby: "No, I just need to be babied."