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.

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, July 21, 2012


One of the truths about Lewy Body Dementia. Tonight Hubby told me (slowly, repetitiously and broken up) "I think I have something in my hand, it feels like it, but I know I don't. I can see I don't, but I think I do"

Hubby has had a permanent decline.
I say permanent now because I've seen it coming but we always had a bounce back, like Lewy Body Dementia likes to do. This time however, the decline is constant and has been for a while now.
I'm talking about location. Hubby is completely lost when it comes to where he is now. He will ask repeatedly through the course of a day, Where are we?
Always I answer matter of fact that we are at home. I'll give our address and answer any questions about it for him short sweet and to the point. Hubby accepts my answer, sometimes with confusion but acceptance anyway. For that I am grateful. It wont be long before he is asking again and after the umpteenth time of hearing it I still answer the same way. I remind myself that to Hubby this is the first time he has asked and he sincerely does not know he has asked before. It's not like he forgot and it will snap back and most of all it's not like he keeps doing it to annoy me, although I can see where it could grate my nerves to snapping if I didn't keep reminding my own self about that truth.
A funny thing happened the other day, I've been assembling a photo album for Hubby so he can flip through the pages. I asked him to join me so I took him into the dining room with me where I had the pictures scattered about the table. As Hubby looked through the photos, I put every one he recognized into the album. After a while he asked me where we were and when we were leaving to go home. I tried to assure him we were home but he wasn't so sure with me this particular time. I told him we were in the dining room and that was probably why he was more confused. Still unsure he asked me when we were leaving to go home. I told him we didn't need to leave because we were staying here where we live. In a huffy tone Hubby insisted "Well we can't stay here!"  Raised his arms and looked around the room. I got tickled and escorted him back into our bedroom where he was more content. Perhaps he thought I was going to make us sleep in the dining room :)

Update on the falls specialist orders. The alert mat for the floor finally arrived and I got it installed. What I've observed about the mat is that it does a good job when it is walked across, BUT Hubby steps ACROSS the mat to avoid the sound it makes. No matter where I place it, he insists on stepping over it. One very early morning he got up and made the attempt to step over the mat, in the process he fell. He wasn't injured thank goodness. When asked why he tried to step over he told me that he didn't want it to bother me LOL!!! At least he still thinks about me :) I haven't taken it up yet and assured him I WANT him to step on it. It's a work in progress.

Now the hip protector shorts. They are very nice, similar to athletic shorts. They have the bulky padding for the hips sewn in the sides and Hubby wore them once, backwards, and has refused to wear them again. He shuts down when I try to explain their function. sigh. I'm not so sure there will be any progress in this area.

My own Dr appointment left me knowing nothing more than I knew when I went in. Appointment day after arriving early and getting all my paperwork filled out I still had to wait before seeing the Dr. When I got in to see him I felt like I was chatting at 100 mph, this is what I do, this is what I don't do, this is what I feel this is what I don't feel. We decided a blood workup was in order but I had eaten so it was a no go, I had to go back. Apparently the only time they would do it was during the hrs I wasn't able to and their lunch hr(s 2 of them to be exact) fell in my aide time. After explaining that I was a caregiver and to my husband with Lewy Body Dementia, Dr was nice enough to make sure someone would be available to draw my blood when I could get in. At my return nurse and I were conversing and I told him I appreciated his time, I knew it was his lunch and I thanked him and told him I was a caregiver to my husband with Lewy Body Dementia. Nurse was intrigued. He didn't think he had ever heard of it before. And stupid me forgot to bring the print off I keep for times such as that. UGH!! (note to self, print off and carry extra copies in car) So I gave him a mini course and we discussed a family member of his that had alzheimers. Being the scardy cat I am of needles anyway and willingly at that, I was very relieved that I felt little to no pain. He hurt me more when he squeezed my arm :/ I was told results would be back in 24 hrs.
I waited, no call
I waited another day, no call, maybe I was supposed to call them
Next day, I call and am told nurses only work on Mon Tues Wed, so now I have to wait and someone would call me. it's Friday.
Mon, no call
Tues, no call, Wed, you got it..
The next Mon I call and inform them I have waited 2 wks could a nurse please call.
Mon afternoon the phone rings, finally, oh but not so fast, apparently they wont talk to me on the phone so I have to go back in. It's a good thing I am not a paranoid person otherwise I would have diagnosed myself with a life threatening disease with days to live and they were afraid to tell me! Ok so maybe I thought about it. once.
Turns out all my labs came back glowing. On paper I looked great except for 2 numbers, weight and cholesterol. The 2 things I already knew. I need a cholesterol med to help speed along the process of ridding myself of the yucky bad stuff. So my question was, "Will this help me feel less tired? (remember the reason I was there)
Oh you will love this part
Dr said, If I lost weight by eating a low fat diet (already been working on it I told you last time I was in here) exercising ( I mentioned that I was doing that too and had taken up my running again since the weather cooled down) drank plenty of water ( that too) I would feel better. The heat probably isn't helping either. Come back in 3 months and lets do it again.
The GOOD NEWS about this return is that I took my print off and asked the nurse if she would care to read it and share. I told her about the other nurse and she was happy to have it and promised she would, (I like to believe people do what they say) I walked out with a feeling of pride at educating the medical community about Lewy body Dementia. So it wasn't all bad.

Oh I wanted to share this status from my FaceBook: 
Hubby has been sitting in the room with me and we have been semi engaged in many conversations. In other words, he has sat here and tried talking with me for a long time. I see his attention is diverted many times for various things but continues to be directed to a certain spot more than one. All of a sudden he yells, "Stop staring at me cat!" I jump, at this outburst but smile thinking he has mistaken the dog for a cat so I look at where he is looking and realize, he's seeing my ceramic cat and it's facing him. I turn the cat and ask if that's better, he says yes and continues his talks. I even amaze myself at how quickly I can fix a situation ;-)

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