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.


  1. Watermelon calms my mom too... It has a positive effect on blood pressure. Beet juice works to keep her happy ... Since she started drinking beet juice, every day has been a good day for her.

    I remember scary days with knives ... Your story brought me chills. Please stay safe.

    1. Hi Sue,

      Yes we are doing well. I'm glad to hear your mom is having good days. But I'm not so sure about that beet juice. I think I'll stick with watermelon ;-)

      Hope you are well your own self :)

  2. tracy.rose@healthline.comAugust 6, 2012 at 1:43 PM

    Hi Kathy,

    Healthline editors recently published the final list of their favorite Alzheimers Dementia blogs and your blog made the list. You can find the complete list at: http://www.healthline.com/health-slideshow/best-alzheimers-dementia-blogs (in no particular order). We encourage you to share your status as one of the best blogs on the web with your friends, family, & followers.

    We also created a set of badges you can easily embed on your site & anywhere else you see fit:


    Please let me know if you have any questions.

    Congrats & continue the great work!

    Warm Regards,

    1. Tracy,

      What a wonderful honor! Thank you to the editors for taking the time to read my blog and help me reach my goal of helping others :)

  3. Interesting yet I did NOT think that Lewy Body had a violent streak. To me, that sounds more like a Frontal Lobe Dementia. We believe my father has Lewy Body (of course, all dementias are undiagnosable until autopsy) but he has NO violent streaks at all. He canNOT however take ANY medication as the side effects (illness, dizziness, bruising, etc. etc. are awful)

    1. Hi :)

      Thank you for commenting.
      I'm saddened to hear about your father. It's a tough road for sure and I hope you and your family are lining up or have lined up a great support team.

      I believe Hubby's outburst was due to his frustrations of lack of control and the last incident was nothing more than getting his utensils mixed up. It was me that did the split second panic. Of course as you know, we can't pinpoint what areas of the brain are being destroyed or how a person will react to any given circumstance. so, better safe than sorry. I'm just glad it all ended well.
      Please keep in touch, I'd like to know how you are doing and what you find useful or not.


  4. My father has Lewy body as well and I believe my sister has been going through the early symptoms for some time now. Her spouse is still in that mode of thinking it's just her upbringing and PTSD from childhood. My dad had the serious sleep disorder which I remember as far back as 20 years before they diagnosed him with dementia. They wrongly diagnosed him with Alzheimer's at first, and then 5 or 6 years later he was properly diagnosed with Lewy. Lewy body is MUCH different than Alzheimer's. Carbidopa/Levodopa was a miracle drug for my dad though it doesn't really slow the process. It does help with his quality of life. Early stages of Lewy can be anger. My dad had these outbursts over ridiculous things that most people would never conjure up to be mad about. The saddest part for me is the early stages where people are hurt because they don't understand that this brain change is occurring so when the person is saying the most awful, abusive things to family members, no one can figure out why. This is the stage my sister is in. She is far worse than I remember my father being, yet she was a very kind, loving person before this disease process began in her. You keep trying to answer their angry questions, arguments, etc. and get them to understand until you finally realize that you are explaining something to a person that is not comprehending language because they bring up the same instances over and over and over. It's as if she's stuck in a decade of time and a record keeps replaying. It sometimes seems like Lewy has peeled back layers of her memory and she can recall things that happened in youth that the rest of us have long forgotten. Yet she can't retain new information. Lewy body is preceded by a severe sleep disorder in many of the patients and that disorder can begin up to 20 years prior to the onset of dementia/Parkinsonian symptoms. There is no doubt in my mind that the brain has been changing slowly by the time that sleep disorder appears. The sleep disorder to me is just the first objective symptom in those patients, but change has subjectively been taking place prior to that in order for that symptom to become objective. For my dad, the sleep disorder appeared around age 40. I have letters from the 1960s and 1970s which my dad wrote to my grandmother. She saved these letters and they were returned to my dad upon her death. This is important to me because I saw that his first letters had very nice, beautiful handwriting and as time went on that handwriting seemed to have completely changed. He went from very nice handwriting to very small handwriting and I wondered why. Small handwriting is a symptom of Parkinson's. I only ever knew his handwriting to be this small, squarish writing. I never knew that at one time he had beautiful writing. This leads me to believe that my father's symptoms actually began as far back as his 20s because that is the age where the handwriting in his letters changed. So that's my take on Lewy from the evidence that I have seen with my family. It's a roller coaster ride. My dad is approaching final stages where he sometimes remembers my name and other times just knows me as a familiar face but isn't sure why. He's 69 years old. My sister is 47. I wish I could help my sister, but her spouse refuses to believe us when we tell him something is wrong. Everyone has expressed their concern to him, but he won't take it seriously and we can do nothing because he has all the legal rights as her spouse. grrrrrrr

  5. As I've read your blog, it feels like I've written it myself. My husband was diagnosed only a couple of weeks ago with LBD. I've "diagnosed" him over a year ago. I'm Not a doctor, but, research the poop out of this nasty disease. I read all I can about LBD, caregiving, etc.
    I, too, pray. Its the only thing that's helped me cope.
    My hubby is hallucinating more. Had fallen, I couldn't TELL ya how many times. Sometimes he'll sleep for several days, to where I've had to stay home from work to tend to him.
    I go through the same emotions that you've written about. God bless you. I am praying for you.

    1. Hi and Thank you for taking the time to read and comment.
      I am sad to know that you and your husband must travel the lewy journey. I hope that you can get a proper diagnosis as I'm sure you know through your research that some meds that work on other dementia symptoms can actually make things worse for lewy.
      I hope you can find some useful things in this blog that can benefit you as well as your husband.
      Please keep in touch.


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