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.

Sunday, February 28, 2010

Missing the clues

Hubby seemed to be experiencing a few days of extra confusion. He had a full day of wake one day. He had woken early and ordered his Malt O meal. He wandered around the house and decided he would go outside and look around. I haven't worried about him wandering away as he seems to feel pretty safe right here.

Later in the evening Hubby tried to engage in conversation. He wanted to know how long the 2 storage boxes in the front yard had been there.
They are actually old semi truck boxes that we purchased and he had delivered and set in the front yard.
Hubby then asked me "How long have you had them?"
I recalled to him where WE bought them from and approximately how long they had been there. I also told him about his having them placed and me not being here when they were or I would have had them placed elsewhere. I smiled at Hubby, he smiled back.

He then said "Yeah, they were telling me that they were mine"

I inquired as to who told him and when. His answer was he didn't remember but it was the other day.
Knowing we hadn't seen anybody the other day left me suspect to hallucinations.

This hasn't been the first time Hubby has talked about "they" telling him something. One of the distinguishing features of Lewy Body is the hallucinations.
Visual (seeing) auditory (hearing), olfactory (tasting), tactile (feeling something that isn’t there) or even precieved (A false or mistaken idea; a delusion).

Have you ever had that moment when you thought you heard someone call out your name so you went to that person to see what they wanted but it turned out they didn't say anything? You say "I could have sworn" and then pass it off as a different noise, perhaps something from the TV.

Hubby has had hallucinations before. Mostly the idea (delusions) that there are people in the house. Sometimes, to Hubby, actual people (visual), once a dog, have been in the house that he sees doing things. Once they took up my bed and left no room for Hubby. I informed Him that there was no room for anyone but him and me. Satisfied Hubby got into bed.  Seldom does he talk about them, as somewhere in his mind Hubby knows these ideas are not quite right. But he does make reference to them on occasion that leads me to suspect hallucinations.

Like I said Hubby has had some more confused days but I almost had him convinced to attend a movie I have wanted to go see with me the other night. He backed out though. (clue #1) Our son supplied me with a much needed break so I could attend the movie. (the last movie I attended was 3 years ago with Hubby) I invited my sister and we had a wonderful time sharing popcorn and candy, giggling at each other in our 3D glasses and trying to reach out as if to touch the objects that appeared to be floating right by our face. It was a a wonderful break.

When I returned home, Son and Hubby were sitting up visiting. YAY! Before Son left Hubby was admiring Sons new wedding ring (his other got lost). At one time Hubby used to buy and sell jewelry and he began a conversation about it. The conversation led to another person now deceased and when I made that remark about them being gone Hubby argued with me about it. I back tracked everything I knew about said person and Hubby agreed with me just not the deceased part. Son only remembered vaguely  this person so offered what information he had. After a while Hubby tried telling us about this persons 2 businesses. We were finally able to sort out that Hubby had 2 people merged into one. Hubby eventually realized his mistake. We all laughed about it but I guess I won't be getting the money Hubby bet me about deceased person.
Hubby went to the bathroom and Son told me that Hubby talked and talked while he was there (another YAY)
Son also said that Hubby was lonely.
This I know and have NO idea how to fix it beyond what I have tried to do. Sitting here now I wonder if it would be possible to hire a male companion to take Hubby to town once a week for coffee or hang out time.

After Son left, Hubby and I went to bed. Having a miserable night myself I was not surprised to find Hubby missing from the room when I woke completely and early. Since my snoring kept me awake most of the night I know Hubby was put out by it and went to find a quieter place. (I wish I could have gone with him)

This was the day we were going to take our road trip. As the morning moved on and my frustrations set in with each passing death of the precious get ready and go time, no Hubby emerged from the quiet room. As the afternoon passed still no signs of Hubby. That was fine with me because I was still hurt and annoyed about missing our plans. I had been in to check on him but asleep he was so I stood there long enough to make sure he was breathing. I don't get too alarmed at Hubby's staying asleep for such a long time, it happens. My aggravation and confusion came as a result of his refusal to get up when we (perhaps I should say I) had plans (clue #2). The planets all seemed to be aligned just yesterday :-/ (clue #3)
Suppertime came and went and darkness settled in.

 I called Son to ask if Hubby seemed upset or distressed about anything in my absence. Son assured me all was well so I chalked it up to just a Lewy mood.

Once more I went to check on Hubby and deposit some things into the storage bedroom next to where Hubby was. I made the deposit rattling and moving boxes and bags. Then walked down the hall to where Hubby was and stepped in the door. It was dark so I stood there a moment trying to adjust my eyes to where I believed Hubby was sleeping. I called out to him and asked if he was OK and wanted anything. Upon hearing my voice Hubby stepped out of the closet. I never questioned him as to why he was standing in the closet in the dark. I can only think that he got scared by my movements in the other room and then heard me walking in his direction.

Hubby has never felt insecure here even though he doesn't know where he is much of the time.
This moment I felt he was. I have always taken comfort in the fact that he has never been afraid of being here or with me. This incident has now thrown a red flag for me.

Hubby answered my question with "yes' and that was all. I said OK and left.
Hubby emerged from the room to raid the refrigerator of the supper I had prepared and he ate standing up over the counter.

By this time Daughter, we were supposed to go and see, started her trek to come to us. What a blessing our children are. 3 grands in tow she arrived fairly late after a long days work, packing babies (ages 7,3 and 8 mo) and driving 3 hrs. She commented that having all boys made it easier to travel as she didn't have to try and locate gas stations ;-)

When she arrived Hubby came out of our bedroom, said hello and retreated. He stayed in there all except a few times her entire stay. Daughter is a Daddy's girl. I know this was hard for her. We had a wonderful visit and I got the opportunity to love on and spoil some boys. Life is good.

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