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Wikipedia describesThe Capgras delusion

 (or Capgras syndrome) is a disorder in which a person holds a delusion that a friend, spouse, parent or other close family member, has been replaced by an identical-looking impostor. The Capgras delusion is classed as a delusional misidentification syndrome, a class of delusional beliefs that involves the misidentification of people, places or objects.

The 's' is silent.

Ever wake from a dream in the middle of the night and find yourself twisted around in the bed and for just a moment you aren't sure exactly where you are? That has happened to me but I was always able to gather my bearings. Unfortunately this is the only description I can give as to what it might be like to have dementia and feel lost in your own house.

Hubby started having house problems before the Lewy Body diagnosis. His confusion as to where we were was mostly at night but just as easily sorted out when he said it. Hubby was aware he was mistaken and corrected himself, in the beginning.

Then he started asking where we were, who owned this place and how we got here. I told him we were in our own house. I asked him where he thought he was and he suspiciously told me I was trying to convince him he was someplace he really wasn’t. He finally told me we were not at (our address). I tried to reassure him we were but he wouldn’t ever be satisfied with the answers and he got up and slowly walked into each room carefully looking to make sure nobody was here and checking out everything.

He eventually became convinced we are in a double wide. (we live in a 2 story house) He can’t decide where it is located or who owns it. Trailer talk was a nightly conversation

“How does this thing go together?”
It doesn't, it's a house
“Who owns this?”
We do
“What’s in that room?”
The bathroom, still
“How did this trailer get here?”
It's a house and we built it
“Where is this trailer located?”
The same place it's always been for the last 15 yrs
etc etc

Now mix in me. My first episode of Hubby not knowing me came in April of 2008, 6 mo. after his diagnosis.
He was looking at me very hard as if studying me so I asked him if he knew who I was and he said ‘No’
Then he said I was his sister. He went to sleep right after that.I was left feeling alone and sad.

Hubby started talking to me about me. I always find it amusing when he does that for some reason
He once told me that his wife had all the sets of keys to the trailer. I asked him what his wife’s name was and he replied that he had so many he couldn’t decide. I asked who he thought I was and he said Kathy. I asked if he thought I was his wife and he said I fit in there someplace.  LOL! Those are all logical statements as I am wife number 4 and my name is Kathy :)

I think our husband wife relationship took a turn the night in bed he got up, rolled over on top of and sat on me. He looked straight at me and asked me, “What was your name?”  I told him Kathy. He said “I thought that’s what it was but I wasn’t sure.”

I'm sure you have all heard the jokes about that happening but it became my reality and for a second it wasn't funny, just very very sad.

Of course I try to cover negative feelings with humor and although I NEVER said it out loud my thoughts were, It doesn't matter. Just leave the $200 on the table and remember, you're getting the Sr Discount ;-)

 After that incident I found it difficult to be intimate with him. Overwhelming in my mind was the thought he might not know who I am or worse, think I’m someone else. My heart could not take that. My affections have changed to a more nurturing love from an intimately passionate one.

The strange house and the different wife are not scary issues for Hubby. Hubby seems to accept the fact that most of his furniture is here in this strange house. It's seems perfectly fine to him that he has another house "just like this one" but does not live in it. He is OK with the fact that I live here and take care of him and he lives with me. He knows I am his wife but doesn't remember getting married to me and since everyone has told him we are married he just accepts it.

So in looking for the good in these situations I must say Hubby feels safe and content today. He is not stressed nor agitated about these things. He never tries to leave or wander off looking for the other house. He knows if he needs anything I am here for him and that in itself is a blessing.

That Wash Woman

Sometimes,
OK lots of times,
Hubby can not remember the name of his personal care aide so He calls her That Wash Woman.
She and I think it's very sweet :-)

Our life before her;

Hubby has gradually forgotten how or was unable to perform his basic care needs. There are times he can function quite well in remembering them but less and less. Shaving was one of the first to go. Mostly as a result of his shaking and trying to use a razor. I purchased him an electric shaver to use but eventually I started shaving him. Hubby is a fall risk so I took measures in trying to prevent that by placing anti slip strips on the bottom of the tub and I purchased him a shower chair to sit on while taking a shower. I also installed grab bars. In addition to what I purchased, the Veterans Assoc supplied many medical supplies that Hubby needed or would need in the future.

Concerned with falling, helping Hubby in and out of the shower was all that needed to be done with shower needs. As Hubby lost the ability to wash his hair and tipping his head back caused him dizziness I started helping with that. Now you wouldn't think that would be such a difficult job would you? Well I assure you that it is very different than sharing a shower ;-) We were both drenched along with the floor and everything else around us. It looked more like a dunking than a seated shower. :-)

We ,OK OK, I, eventually got the hang of it and shower assistance went much smoother.






So now more things to add to my list of caregiver duties.
Some days it feels like raising a child in reverse.

In the beginning leaving Hubby at home alone wasn't a huge ordeal. He was never without his cell phone and was always able to call me if he needed me. I wouldn't be too terribly far from being able to get to him myself or call emergency personnel if necessary. On the rare occasion I was a great distance away I would have our son call and check on him. I felt comfortable in doing this UNTIL
a day of shopping when I returned home Hubby was asleep in bed when I returned, That was normal.
I woke him and let him know I had returned and gave him a kiss on the forehead and he acted like I sent electrical shock waves through his body and grabbed his forehead.

I asked what was the matter and he tried to tell me his head hurt. (I guessed, go me!) I turned on the light to examine him closer and he had a bump and red spot just over his eye. I started twenty questions and by process of elimination surmised he had fallen down but he doesn't know what he hit. I surveyed him for other damage and limb movement.

Then it hit me like a panic, All the horrible "what if?'s " crept into my mind. I called the VA and they made a home health recommendation. I was afraid to leave him alone, no I would NOT leave him alone. I bought a monitor to have so I could hear him if he needed me and I was in a room too far to hear him easily. His safety became paramount. and still is.

Hubby was ambivalent to the idea of someone coming. I just needed a respite so I could run to town and grab milk, toilet paper, and coffee along with other necessities and know he wasn't alone should he fall again. The intake process was slow (dealing with the V.A. imagine) but when we finally got all the red tape ironed out he qualified for a personal care aide. I was so happy to have some relief and willing to let go of some of the responsibilities I carried. Or was I?

After the Nurse left, my emotions became jumbled up.

I was truly grateful to be getting the extra help. Help I had prayed for. I knew how much good it would do physically and emotionally. But at the same time I was stressed about another person caring for my husband in such an intimate way.

This is going to sound so silly and I can just hear your remarks now but my feelings were very real.
The fact that another woman would be in my house, my bathroom, my bedroom to assist my husband with bathing and dressing had me in an emotional spin. I don't know why either. I never ever felt like that when he was in the hospital or had female drs he needed to see. So why? I didn't understand my reaction.
It never even hit me and I never even thought about it until the nurse left. I was so ready for the help that I needed and need. I felt foolish about it.

I cried and prayed that I was doing the right thing.

I realized after much thought that I needed to move mentally from a 'wife' to a 'caregiver' frame of mind. I suppose I worried that in such an intimate setting I would lose the affections of my husband to this other person as she cared for his personal needs. I have lost so much of him to Lewy already I wanted to hang on to what was left.

So I made the emotional transition from physically intimate wife to wifely caregiver and this makes it easier for my heart to endure the things I must concede for his well being and mine. It feels like I have grieved for so many years already.

Please do not think for moment of time that I do not love Hubby. I most definitely do. He is the other half of my heart. It just hurts my heart when he doesn't remember who I am. Lewy Body has forced our relationship to change.

And That Wash Woman, she has been with us more than a year now. We all hit it off quite well and I am more than happy with her. She conducts herself in a very professional manner. Both Hubby and I are comfortable with her and he seems to be more cooperative for her because he knows she will only be here at certain times where I am here all the time he can just put things off until later.

She has certainly been a blessing to our lives :-)

Hello? Is anybody here?

From LBDA:  Hallucinations are usually, but not always, visual and often are more pronounced when the person is most confused. They are not necessarily frightening to the person. Other modalities of hallucinations include sound, taste, smell, and touch.

One of the core features of Lewy Body dementia is hallucinations.
When Hubby started having hallucinations I really didn't recognize it as that as it started at a time when we actually had several people around. After those people all left and the only ones left here at home were Hubby and me, he still asked about the "people" in the house. There were times he would wake me in the night and ask me if there were people in the house. Always 'looking' and making sure the doors were locked. But somewhere and somehow in his mind the ability to know that they couldn't be real, could they?

To Hubby, what he saw or sensed seemed very real. Non threatening but still an annoyance to have here. He wanted his privacy. Those people have occupied the bathroom when he has needed to go resulting in an unhappy and embarrassing situation. They have built churches in our bedroom and airplanes in the back yard. They have even put new doors in the ceiling. The conversations of the people have been so loud they have woken him from his sleep and that really annoyed Hubby, who in turn woke me to complain. I complained myself.

Some times he thinks there are children here and only once we have had a dog in our bedroom (Our dogs are outside dogs). Since we have animals anyway I can't really decide if the animals are real or imagined.

So how do we deal with hallucinations? Medications? Argue? Reasoning?

Neuroleptics, also known as antipsychotics, are medications that are used to treat hallucinations. A person with Lewy Body can not tolerate those meds resulting in a rapid decline or worsening mental condition that they may not bounce back from. Lewy is famous for it's ability to go from complete confusion to logical reasoning and back again in a matter of moments, hrs, days, weeks) Why make a bad situation worse? I always consider Lewy Body and  neuroleptics like mixing bleach and ammonia. TOXIC!

Arguing  only results in Hubby getting more confused, upset and anxious. In turn that seems to make his shaking and his cognition worse. No sense in rocking the boat in already choppy waters. (Hubby was in the Navy, I wish I had a great Navy saying)

Reasoning, maybe. Somewhere in Hubby's mind he is aware that he has a problem He does not like to talk about it but he is aware. There are times he will ask about the people only to say, "No, that can't be right". I have seen him looking around corners or into rooms. When asked what he's looking for he just stares at me and says, "Nothing". So I believe he knows. But there are the times when he is very sure that the doors need to be checked that they are locked so nobody can get in. (I agree) He has complained that there were too many people in our bed for him to find a place to lie down. I just assure him that there is plenty of room because I only want him in the bed. I also inform him that there better not be anyone else in the house as at times I am in my pajamas. He is almost always satisfied with my responses.

He doesn't seem distraught by the people. They are just there or not. I on the other hand wish the lazy bums would do something to help out around the house. ;-)