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.

Saturday, March 6, 2010


I have worked closely with Hubby's Dr's to wean him from some meds I felt were not contributing to Hubbys physical and mental wellness. For the last few weeks Hubby has had no incidents of falling and he seems to be steadier on his feet and has a little more ability.
I fear that in my quest for Hubby's physical  gains the mental fluctuations have left me feeling like I am dealing with a double edged sword by the blade.

At a recent Dr visit with a mental health professional to discuss Hubby's feelings about his loss of independence, Hubby decided that I am the reason everyone is convinced there is something wrong with him. He is quite capable of taking care of himself and I have turned everyone against him. He then told his Dr that he was going to fix his car and divorce me.

Not a good day.

In Hubby's long silence between words and few word phrases to the Social Worker, Hubby announced, "I just found out about a house I didn't know we had".
The Social worker questioned Hubby about said house and I sat with a confused look on my face.
Asked where this house was Hubby couldn't answer so I asked him, "Do you mean the house we are living in now?"
Hubby answered "Yes"
I then asked "You mean the house we built 15 yrs ago that we are living in right now?"
Hubby looked confused and said "No"
I asked Hubby where said house was.
I gave him separate choices for deciding and each time he answered "No"
I asked what the address of said house was.
Hubby started giving the address but was having a difficult time recalling the numbers except for a couple I recognized so I asked him if they were thus and such and he, enlightened, said "Yes."
I looked at the Social Worker and he looked at me and asked me where that was.
I answered "That's our house we live at now.
Hubby insisted "No it wasn't"

Capgras delusional beliefs that people, places or objects have been replaced  with duplicates. 

After we left the Dr's office we stopped and had lunch and as I often ask whenever we have the opportunity to be out Hubby wanted to stop off at a friends place of business. Allowing Hubby to visit without my presence I sat in the car and waited for Hubby's return. Upon his return the friend told Hubby the tires he just ordered would be in Monday.
Stunned by this revelation and no legal authority to do anything about it, I simmered in my PMS.

Beating myself up for not shadowing Hubby. Refusing to make a stop and just bringing him home.
Then I would be beating myself up for keeping him captive. I feared that more than anything. I never want Hubby to feel like he is a prisoner. Sadly that is how he feels though.

So the double edge sword.
Hubby continued on the meds, stayed unstable sleepy and out of it not knowing who I am.
Not fearful or upset about his situation.
Hubby cuts back on the meds helping him become more mobile and more alert to some things, yet still with a mental decline incapable of making decisions. Anxious and upset about his situation. Feeling trapped and controlled.

Now it gets interesting.

Lewy (Hubby) decides he wants to talk to me about leaving and driving but can't decide what he wants to say.

PMS (me) says that between Lewy's confusion and her confusion she needs to try and sort things out.

Lewy doesn't agree and says there is nothing wrong with him and PMS is trying to convince everyone that there is something wrong.

Gloves On. DING DING

PMS throws a verbal left and then a right jab telling Lewy she doesn't have to convince anyone of anything as Lewy does a good job on his own.  Case and point, house comment at appointment today.

Lewy counters with a series of paused 3 and 4 word incomplete sentences.

PMS continues the verbal assault with another right and a bash with a left and a heavy thud right into Lewy's insistence on how Lewy intends to care for himself .

Lewy leans left to avoid the verbal jab proclaiming he could care for himself like he used to.

In a succession of beautifully placed verbal punches PMS gets nasty and reminds Lewy he can't even care for himself at home, then lists the dirty list of problems Lewy has.

Lewy with his gloves up insists that there is nothing wrong with him and he has every ability to care for himself.

PMS circles the ring asking Lewy why he doesn't do anything on his own then.

Lewy jabs with short stuttered incomplete sentences asking what PMS does for him.

PMS, taking a stunned shot to the head launches a tirade of all the things she does for Lewy from personal care to home improvement for Lewy's safety and comfort.

Lewy stumbles backward into silence for as while then takes a wild shot at PMS
keeping him under thumb, never wanting him to go anywhere or do anything.

PMS  deflects Lewy's hit by reminding Lewy he chooses to stay home and never wants to do anything but stay in bed.

PMS launches an uppercut at Lewy by informing him that he is the one that chose to give up and just die.

Lewy then swings in with a confused glancing blow that leaves PMS herself reeling in confusion as Lewy once again takes off about the capgras house.

PMS is confused and realizes this is a no win battle she grabs her crying towel and both she and Lewy complain with headaches and go to neutral corners.

I am not sure who got the TKO as neither seemed victorious.
PMS surely doesn't feel like a winner.
In Lewy World everybody looses.
And I feel like the biggest loser of all.


  1. Kathy, don't beat yourself up, it's really hard what we do as care givers. I've found the best thing to do in a situation like this, I have them too... is to suck it up and appologize. Give him lots of hugs when you see the gentle moments.

    My mom is 80 and still talks about driving and is mad at me for getting rid of her car when we moved 2 years ago when she couldn't find her way to our new house.

    A couple of weeks ago we still had lots of snow and ice on the ground. My mom wanted to go out. I asked her where she was going and she said, "out." I wouldn't let her go. I was worried that she'd fall. It turned into a horrible scene, sort of like the one you just described but with our own nuances.

    Later, I figured that if I let her just go, not stop her, she won't go. It's cold outside and she also worries about falling. So, she put on her coat, I said, "Where are you going?" She said, "Out." I said, "Ok. Call me if you get lost."

    She went out for 5 minutes, walked up the walk way and the driveway and came back inside. All she wanted was to know that she could go, that she wasn't a prisoner.

    I found that when my mom eats gluten, dairy and sugar, she gets extra agitated and has sleep disturbances.

    I'm writing a post about all the natural remedies that my mom has tried and currently takes. I'll post it on Dr. David Thomas' blog; he asked me to write about homeopathics and natural remedies. They work really well for my mom.

    You are doing a great job Kathy, it's ok. Everything passes with this illness, hug hubby and tell him that you are sorry. Let him do things on his own. He'll be ok.

    Big hugs and sunny smiles! ~ Sue

  2. Sue,
    TY for the words of encouragement :)
    It wasn't much longer after I posted that Hubby came needing my help and once again all was well. No anger or anxiety.

    I just hate when I get sucked into an argument.
    I'm a lover, not a fighter :)

    I have been reading your blog with great interest.
    TY for sharing it.

    Hugs~ Kathy


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