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.

Showing posts with label delusions. Show all posts
Showing posts with label delusions. Show all posts

Tuesday, May 7, 2013

Oh His Aching Back And My Aching Head

Poor Hubby. He took another fall 2 weeks ago, had another back x ray and a week later we finally received the results and only after I called  4 straight days in a row. I didn't have to stage a sit in either! The last time I finally went to the Dr office and sat in the waiting room until someone spoke to me. Progress! ;-)
This makes the second compression fracture from falls this year. The first in Jan.Hubby received a steroid shot and some muscle relaxers. This time I learned something I did not know. I asked if he could have another shot but was cautioned against it because, this is what I learned, steroids will weaken the bones, and since he has already had two fractures from 2 falls he didn't want to risk more bone weakness. He did prescribe the muscle relaxer again.

The last few days have been a bit trying with Hubby's back pain. Hubby finally managed to go to his eye Dr appt. we had to cancel a few times before due to various dementia related issues and once weather. It's so difficult to get into that clinic and I just about have to accept whatever appt time they give me. I was NOT looking forward to the hr drive to the VA but more than that, I was not looking forward to the drive home that would come come during rush hr traffic, or more like rush hrs!

Hubby has complained with eye problems for quite a while. His glasses weren't worth anything and he couldn't see. He complained enough that I finally got tired of hearing how slow the VA was, I took him to an outside eye Dr and paid out the nose to get him new glasses and the frames he wanted. Funny thing though, they are almost an identical prescription to the ones he already had, and when he took the eye test wearing the new glasses, he passed so well that even I was amazed. But Lewy took over and convinced Hubby that the glasses were worthless. He refused to wear them put on the old glasses and decided they were perfect. sigh

I know that Hubby has very mild glaucoma. He has drops he uses for it and when we attended the Dr appt the eye pressure had gone down some. Eye Dr suggested 3 options. One was a laser procedure, one was the drops and another was wait and watch. I suggested that the laser option may not be a very good choice because Hubby had the tremor that was quite pronounced and getting him still enough might be a problem. Since I don't know much to anything about lasers, my concern was that Hubby would shake and they would burn a hole through the back of his head. Perhaps I should have waited before speaking because Hubby, who started the day out having a testy morning anyway, became a jerk (no pun intended) and started gruffly telling eye Dr that I was opposed to anything he wanted to do because I was afraid they would let him drive again.
He continued to say I wouldn't let him do anything because I was in charge and I liked it.

Eye Dr just listened and then explained how the laser procedure was fairly simple and he felt confident that he could do it on Hubby. He also said the procedure wasn't a sure thing and drops might still be a necessity but he was happy and willing to give it a try.
I asked Hubby what he thought, he wanted the procedure, I said, lets do it. I was annoyed enough with Hubby that I almost didn't care if they burned a hole all the way through his head and out the back of it. So they did the procedure in less than 5 mins and we walked out 3 hrs after the initial appointment time, with drops and a return appointment to do the other eye. Oh and no holes through the back of his head that I could see.

Before we left the facility Hubby made a pit stop. I have decided that this facility needs a family friendly bathroom. I couldn't accompany Hubby inside so I waited for him out in the hallway. Still annoyed at Hubby's attitude and anxious about the drive home at that time of day I didn't even notice when he walked out, which is actually translated as clutching everything in sight and scooting his feet, and he was not wearing his glasses. It wasn't until we were several miles down the road when he asked me about them. I scoured my purse 3 times eventually emptying it in my lap only to come up empty handed for glasses.UGH! But there was no way I was turning around and going back. I fought the stop and go traffic for about 15 miles and was determined it was free sailing for home when we escaped it. Besides, we had to go back in a week.
As late as it was, as anxious as I was, and as testy as Hubby was, I made an executive decision to stop for a take home meal. The weather here had turned cold. It's May and we had to wear warm jackets to hos Dr appointment and run the heater in the car, so instead of sitting at the drive thru I told Hubby I was going inside. I asked him if he wanted to go in with me or sit in the car, He said, "We'll sit in the car." I laughed, by now I was settled down a little, and asked who "we" were. He said the guys in the back seat.
I turned to see.
YES, I KNOW I KNOW!!! But it was a moment, ya know?
I asked him if he really saw people in the back seat and he said yes so I said well you guys wait here and I'll be right back.

We made our final drive home and got settled in the safety of our room.
Youngest daughter had a brilliant idea to call the facility and ask for the lost and found! She's so smart, I think I will keep her!
I called but had no luck getting through over the weekend.

I also had no luck getting through to Hubby over much of the weekend. He was just generally out of it and confused. By the time Monday rolled around things for Hubby weren't much better. A "No" from the lost and found dept didn't help either. I do not contribute his issues specifically with the muscle relaxers. The last time he took them we did not have these issues and he was actually feeling so much better he thought he was getting better. You can read about the False Hope here.

I contribute the issues specifically to Lewy body Dementia.
Just yesterday as I was drinking my morning coffee and catching up on my FB, or more specifically deleting the unnecessary "middle school drama" from it that does not benefit me or my emotional self care. He was having a REM sleep dream. I could tell he was engaged in an argument with someone and he nearly threw himself out of bed to fight them. I gently woke him up before he took a fall. He roused, changed positions then sat up. I walked out of the room and when I returned he told me he had been out of town, bought a truck and got into a fight with some guy there.
I could tell he was serious about by the way he spoke about it. He then asked me where we were, "We are at home" I answered. Then he asked me if his truck was out there. I told him we didn't have a truck and he got mad at me, furrowed his brow and said "BULL!" Still upset by it later he asked his aide to tell me he wanted  the phone number to the place he bought the truck. I was busy getting ready for a dentist appointment so I didn't answer him right away and scooted out the door. By the time I had returned he had forgotten the truck but was upset I was gone too long for him. I gave him the rundown of where I was but it didn't seem to help. He stayed in that mood for a while and later admitted he was jealous and afraid I would leave him. I don't know where all that came from but I assured him that I had no intentions of leaving him. I hugged him tight, offered him cake and ice cream which he happily accepted and all was right with the world again, for the moment.

Friday, July 27, 2012

No Sure Footing

Have you ever been walking along and lost footing and it's taken several awkward steps to regain your balance? That's how it feels with Lewy Body Dementia these days.
Hubby has had what feels like so many small yet steady declines over the last few weeks, trying to regain a sense of balance is difficult.
This morning was no exception. What you are about to read will seem startling but I assure you that all ends well. I needed you to know this spoiler before reading, sorry for those of you that like suspense. ;-)

2 times in our 30 yr marriage I have ever been afraid of my husband.
Once when he had a bad reaction to some new night time meds and he got very very very (I said very, right?) mad about something, tore through the house throwing things and swearing. I prayed the kids slept through it (they did). I lay in bed pretending I was asleep as his tirade went on. Why didn't I call an ambulance or the police? Because honestly, I was used to Hubby getting mad and having a temper tantrum. Hubby has PTSD, Post Traumatic Stress Disorder, so dealing with anger issues had become so commonplace for us it seemed normal at the start. I don't remember what took the turn to fear for myself, I just remember that sick feeling I got and I hoped and prayed that his regular sleeping meds would kick in, he wouldn't hurt me and he would go to sleep. As long as I laid there pretending to sleep, he ignored me but his outburst continued on other things in the house. The next morning Hubby was back to normal. I was up early cleaning up some of the wreckage of the house when he came into the kitchen and asked me if I had seen his glasses. We eventually found them under the kitchen table. As soon as the VA was open I called the Dr and TOLD them that I was discontinuing the new meds and why. I didn't give them any opportunity to ask me to at least give them some time. And to this day it is a NO NO meds for Hubby. I don't know why but I was never in fear for the kids. If they didn't sleep through it I have never been told by them. That was many many yrs ago.

The second time was at the snapping point of our marriage. Hubby had already been gone a couple of days returned for some more of his things. It was a Monday I remember because I was leaving the house to meet a lawyer as he drove in. He walked over to my vehicle and told me what he was there for and asked me where I was going. I told him I had an appointment, I would be back if he wanted to talk. I started to drive away but he stopped me to tell me he had a lawyer. I think I said, well it looks like I need one too, or something to that affect and I remember he asked me who I was going to get. I told him who I was going to see and Hubby took on a whole other demeanor. He became enraged and started swearing at me, I started to drive but he kept stepping in my way and proceeded to withdraw his pocketknife from his pants. That same sick feeling I had once before came over me. He threatened to stab my tires with it so I couldn't go anywhere. I panicked and drove off and I'm pretty sure I spun him around as I did. I threw gravel and dust and squealed tires as I hit the road. I drove straight to the sheriff's office and filed a complaint then to my new lawyer.
Hindsight I believe this was part of his Lewy Body Dementia. That was 7 yrs ago.

Today, for a split moment I had that same sick feeling.
Hubby woke up in a foul mood. More mobile than he has been lately, He shuffles all around clutching everything for balance. He is so lost to location, always asking where we are and how we got there and who brought his clothes, are we going to stay here, is this a VA home ? etc etc.
Today he believes someone has stolen some of his things and has accused me of the same. Something I am used to by now I barely consider it as odd anymore. Oh the things we label normal when living with Lewy Body Dementia. I already decided I was not getting tangled up in the theft ring so I tried to change the subject by offering food. He agreed to that so I sliced him up some watermelon and set the bowl in front of him. There was no redirecting his thought train so I tried to assure him that nothing had been stolen and I sure didn't need to steal anything. I then walked out of the kitchen to my comp room and pulled up my prayer list. I can see the kitchen from my comp chair but I couldn't see where Hubby was sitting but I heard him when he got up. He finally came into sight and I saw him reach into the sink and withdraw the very large knife I was using to cut the watermelon. I got the same sick feeling for a moment as I watched him shuffle back toward where he was sitting. He stood at the counter and I slowly stood and stepped into the kitchen. My mind was racing as to every scenario and how I could play it out with a successful ending. I surveyed Hubby looking at the counter confused so I scanned the counter when I realized, he didn't have a fork for his watermelon. My heart still racing a little I walked in smiling and told Hubby “I forgot to get you a fork” Hubby agreed and said “salt too” I approached him talking to him the whole time about forks and salt and took the knife from him and locked it in the dishwasher. Retrieved the proper utensil for eating and the salt. Hubby sat at the end of the counter happily eating his watermelon.

I returned to my desk and blankly stared at my prayer list. I told God how thankful I was for Him watching over us. I could have been hurt (I know, I thought about me first) Hubby could have fallen and gotten hurt. I also said that I just couldn't concentrate on my prayer list at the moment but He knew what the needs and praises were so AMEN!

Now that I'm settled I believe that Hubby had NO intentions of doing harm, he was looking for something to eat his food with but got confused about which utensil he needed and where they were located. He took what he saw I had used.
There is however a REALLY GOOD lesson here.
When Hubby's Lewy Body Dementia was first diagnosed, a suggestion on the spousal support group was made to remove all sharp instruments. At first I ignored the idea, Hubby wasn't as bad as the husbands of those making the suggestions. After further reading and a few weeks passing I decided it might be in our best interest to do that very thing so I removed them from sight. Better safe than sorry. 
We may say to ourselves, Oh my loved one isn't that far along or my loved one would never do anything like that. But the truth is, we NEVER know what a person with dementia is capable of doing and when. Unless you can pinpoint what parts of their brains are dying we are walking in the dark. We should plan ahead and prepare for the worst and always be vigilant to their safety as well as our own. I was lax in that. I will know better next time. Scary lesson learned. I've always been a hands on learned though.

Now, Hubby is calmer, he shuffled to his bed and is feeding the dogs potato chips.

Saturday, March 3, 2012

How old am I?

It was the best of times and it was the bestest? bester? oh whatever, it was really funny.

I am enjoying Hubby's calmness as of late.
The angry words and accusations seem to have diminished quite a bit.
Perhaps Hubby is finally coming to terms with his Lewy Body Dementia.
Perhaps finding a good combination of pain meds to help lessen some of Hubby's chronic back pain, has helped.
Perhaps a combination of the 2.
Whatever the reason I am ever grateful to a loving God for the blessings of peace :)

Hubby has acknowledged some changes going on in his mind.
He told me his mind keeps going back to a time when 2 particular restaurants were in our town. Both of which have been out of business before I ever moved her 31 yrs ago and perhaps were in and out of business before I was ever born. ( 26 1/2 yr age difference between Hubby and me)
He also acknowledges that he knows they can't be around anymore but for some reason, his mind sometimes tells him that they are.

This insight into Lewy has been the first REAL insight Hubby has ever shared with me that I can remember.
Most of the time I am left guessing and deducting what he might think and feel.
You can imagine how happy I was that he felt secure enough to share those thoughts.
He and I talked about the restaurants for a short,very short, time.

Mobility continues to decline at a quicker pace and that seems to be the most frustrating thing to Hubby.
The parkinsons type symptoms of his Lewy Body have made walking nearly impossible for even the short distances now. Fortunately Hubby has something to hold on to every couple of feet from our room to out adjoining bathroom. He clutches with a life grip, yet the other night he took a middle of the night fall in the bathroom. I jumped straight out of bed to get to him but he was wedged between the 2 doors.
Fortunately when we built our house, we put one door in that swings in and one door that swings out.
Isn't it amazing that God had the bigger picture in view when we did this?

Realizing I couldn't get in the one door, I leaped across my bed and through the kitchen and washroom to the other door. Hubby was able to move all his limbs. He had a spot on his knee and a pretty good sized goose bump on his head. A thin scratch on his back.
It took a good 20 mins to get Hubby uprighted and back to his bed. He is a stubborn and prideful man and refused to let me call for help from SonnyBoy who was sleeping in the other room. I finally demonstrated what Hubby needed to do in order to get up and Hubby was finally able to understand and rise from the floor.
I helped him into his bed and tucked him in. We slept the remainder of the night.

The next day we visited the Dr for medication follow up and lad test results. Hubby passed with flying colors all his lab tests and my good report of Hubby's behaviors and medication combination for pain easement made the Dr smile. He even laughed when he said "Good, we wont need to make any more medication changes:. To which I replied, "No, no changes, BACK OFF!" We both laughed actually :)
Dr said he was going to go ahead and schedule an appointment but if I felt like it wasn't necessary to be there, I could just call him with an update as he felt confident that if there were issues I wouldn't hesitate to contact him. I assured him he was correct :)

Communication comes and goes for Hubby.
He gets lost in his thoughts and easily sidetracked.
Words don't come even though he knows what he wants to say.
Many times he asks me if I know what he is thinking or will call me in to ask me if I knew what he wanted.

Sorry Hubby, I wish I was a mind reader :)

Simple every day things get incorporated into Hubby's conversations.
A word or phrase I might say will become part of a sentence Hubby is saying. Then he gets stuck on the word like a skipping record player.
Television is even worse!
When Hubby wants to talk to me or I need to say something complicated to him, I must try and remember to turn the TV OFF. Just down doesn't help because he can still see the movement and that distracts him.

Now for the fun stuff.

The day after our his Dr Hubby wanted to make a trip out to eat one afternoon. We eat a very late lunch or very early supper. I lovingly refer to it as "Old People's Supper".
On the way home Hubby made comment about his head still hurting and cupped his hand to his head and ear.
At this point I can only guess what was going on with Hubby and my guess was that he had a ringing in his ear because he said, "My phone is ringing"
Hubby pulled cupped hand off ear and looked at his hand.
I said "What?"
Hubby repeated, "My phone is ringing".
What could I say besides "Say Hello".
So Hubby did. He raised his cupped hand back to his ear and said "Hello?"
Then lowered his hand, stared at it, commented "That was weird" put it back to his ear and listened again.
It took every ounce of self will to keep from laughing out loud at this.
I just glanced out the drivers window occasionally and continued the drive home.
Hubby never realized he was not holding a phone but was not upset that nobody was talking to him.

Still having communication issues a couple of days later, Hubby and I were watching an old TV show.
In the show a girl screamed.
SonnyBoy, who was in a nearby room laughingly said "She screamed just as I sat down.!"
Apparently she startled SonnyBoy and he and I laughed about it.
Hubby didn't understand what SonnyBoy said so I repeated.
Hubby said, "SonnyBoy sat on her and that's why she screamed?!"
SonnyBoy and I both thought this remark was hilarious and through near tears I tried to explain that he did not sit on the woman, but Hubby never could get it straight in his own mind and seemed a little disgusted that SonnyBoy would do such a thing.
I have to agree that it is not polite to sit on women.

Some days, living in Hubby's world is a little more entertaining than the real one.
And Hubby's more comfortable when we can meet him there.

Today is Hubby's 75th Birthday.
It seems that Hubby has forgotten his age, not just by a yr or so but by the 10s of years, and over the course of the last few weeks, occasionally, he will ask how old he is.
Today when I wished him Happy Birthday, he asked me how old he was.
I replied "75"
His response, "Well, I'll take your word for it."
Happy Birthday Hubby. I love you very much :)

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.

Sunday, January 24, 2010

How long have you lived here?

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.

Wednesday, January 20, 2010

Hello? Is anybody here?

From LBDAHallucinations 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. ;-)

Friday, December 4, 2009

For Better or Worse, in Sickness and in Health

Bobby and I have been married for 28 yrs.

We have a large age difference. He is 26 yrs older than I am.

At age 16 his parents signed for him to join the US Navy where he learned to be a gunners mate during the Korean War. Sadly that experience took it's toll on his mind and he has suffered with the effects of PTSD(Post Traumatic Stress Disorder) for very many years. I focused mainly on his anger issues although he had other problems too.

As a result emotional problems have been a regular part of his life. These problems have have taken their toll on many relationships he has had, relationships with spouses (I'm wife #4) children whom have a very detached with him, friends who are actually only acquaintances, jobs he couldn't keep working for others and then he found his nitch in life. CARS. A man with the gift for gab, an endearing personality and charm. He found that he was good, very good at selling used cars. He opened his own business and did this for many many years until his emotional problems caused him to be unable to continue. He closed his business. Such a sad sad day for him.

During our marriage he had been seen by a neuro about a shaking disorder. Nobody ever said definitely what it was.First they thought Parkinsons, then decided it was just an essential tremor then they weren't sure. So he lived with the shaking.

As I said we have dealt with his emotional problems our entire married life but over the last few years things started to take a turn for the worse. He separated from me Sept, 2005. 

 After our separation I had heard these very odd and out of character comments about him. He was thought to have started drinking (he doesn't drink) He was thought to have gotten into a fight due to his bruised and cut face and arms and broken glasses. (with his anger issue anyway it was possible)

After 17 mos we reconciled and he returned home March of 2007.

When we reunited and he returned 2 yrs ago we had such plans to honeymoon and travel. I quit the job
I had and it was going to be our time. The kids were all gone so with no ties we
were free. Oh I was so happy with the prospect of our lives together!

Then just a couple short months later, Lewy obviously crashed down like a hailstorm and there was no where for us to seek shelter.

I had noticed that he shaking was worse and he was having trouble walking and stumbling quite a bit. His speech and train of thought were 'off'. Substituting words, slow response. (Perhaps why he was thought to have been drinking).

He wrecked his truck twice, both times in our own yard.

We saw a neurologist in mid April and started on CARBIDOPA-LEVODOPA. It made him so sick he couldn't even get out of bed some days. He said would rather live with the shaking and I agreed.

Things didn't get better, if anything they got worse. He was "beating me up" at night (Dreaming and acting out) more than usual when he finally did sleep.  He started falling down for no reason. Around that time I took over the driving anytime we went someplace together.

A late Neurology appt  brought a different med for the shaking, CLONAZAPAM.

It was at this exact time my mother was diagnosed with Cancer and died less than 2 weeks later. Everything happened so fast. We had a house full of people coming and going and my attention was totally directed to my mother at that time so sadly I cast Bobby to the wayside. He appeared stable and stayed in his room all the time so that was to my advantage taking care of my mother.

Because of all the hurried activity I didn't tune in to Bobby. Always asking about the people in the house and when they were leaving. What day it was, what time it was etc etc

But after it was over and done and everybody and everything was gone within a few days it got crazy. Falling, forgetting, confused, time and space had no meaning, walking about 'lost', looking for people that weren't there...
I called the neuro and said HELP!

We weaned him off the Clonazepam and saw the Neurologist in August. The Dr said he was thinking one of 2 things. Multi System Atrophy OR Lewy body. At the appointment they did a resting /standing BP check and it was normal. After my research and taking that test into consideration I believed they would say LB.

They started him on GALANTAMINE to help with his confusion and thinking.
I was SOOO happy with this med I could kiss the makers. What a difference it made in his cognition at the time.

Then in Oct 2007 they gave him a diagnosis, Probable Diffuse Lewy Body.
I knew in my heart that would be what they said and yet it was like
someone stole all the breath from me when they did.

I don't know how he felt he has a stone face and he doesn't like to
talk about things. But it must be terrifying.

It felt like the end of the world as we knew it.

WAKE UP!! I think you fell asleep ;-)