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, June 19, 2016

Visual Learning about Lewy Body Dementia

It's been 2 years since my husband passed away and I still feel heart led to be actively involved in caregiver support.
I know this will be the first post anyone sees on this blog so I wanted to share this visual lesson I have given on Lewy Body Dementia. If you can understand this, you might understand Lewy and other dementias a little bit more.
This is also a hands on activity for you to do at home and share with others, so here goes

You need
Bubble wrap
This brain photo *Thank you to Stephen Holland at hiddentalents.org for his permission to use it.
Brain Functions
Print this picture out on a regular sheet of paper
Cut a piece of bubble wrap a little less than the size of the paper
Play with the bubble wrap while you're reading the brain functions, you know you want to pop some bubbles!
Turn the bubble wrap to the smooth side and use the highlighter to mark the popped bubbles.
Turn the bubble wrap back over and place it over the picture.
THIS represents the beta proteins of Lewy Body Dementia!
Lewy bodies are diffuse, meaning scattered or spread over a wide area, not concentrated. 
Notice what areas of the brain are under the highlighted bubbles.
Now fill the bubbles back up with air.
What do you mean you can't? Just do it!
You see, the bubbles are broken so the best you can do it try to patch them (meds) or in some cases if the bubbles air was only transferred you might be able to shift some of the air of another nearby bubble into the highlighted one. THAT represents the fluctuations of LBD, seems to decline, now a rebound.
But you realize that over time the air will eventually seep out and the bubble will no longer be inflated.

Lewy Body dementia is a total body issue, not just a memory one.
We give meds to alleviate some symptoms, it's the best we can do.
Even meds for other things might not have the same effects on their intended issues over time.
We're trying to MAKE a dying brain that can not, function normally. Sometimes we can force it for a while but the brain, the mainframe of the body is shutting down totally, the bubbles continue to pop and as of yet, can not be reversed or repaired.

I hope this visual helps you understand a little bit more about what is happening to our loved ones.


  1. I saw your comment on Silverfox's blog as well as his comment about you in his next post. I have begun this journey with my husband and am looking for as much information as I can in order to understand more clearly what is happening. I joined a "caringspouses" forum which is highly informative and the members share their ups and downs. I just wanted to thank you for this blog and for sharing your experiences so people like me can become better caregivers. Donna M.

  2. Hi Donna,
    Thank you for reading.
    I am so sorry to know that your husband and you have to ride the lewy roller coaster. I'm sad for both of you. I hope you find something useful in this blog and it helps both you and your husband.
    I'm glad that you found a support forum. There is also some facebook groups if you are interested in joining any of those. The nice thing about those is that someone is always on no matter what time of day or night. We can never have too much support.
    Please keep in touch.

  3. Hi! Welcome back. So nice to hear from you again. I loved reading your blog before and have just realized you have returned. I am sure you can give and help others so much, drawing on your experiences. Hi!
    Amanda in Japan, still caring for my mother in law...

    1. Hi! Amanda,

      Thanks for checking in. I've been trying to keep up with your journey as well.
      I'd like you to know that even if at times it doesn't feel like it, you've been doing and excellent job caring for your mother in law as well as your own self.

  4. Hi Kathy, I meant to thank you for the visual and as happens so often, the days are not always my own. :) Dave is currently going through a bad case of diarrhea that we can't seem to get a handle on. When he goes from constipation to diarrhea it usually only last a couple of days and then things go back to normal until the next bout. This time it has been hanging on now for 4 days and Dave has lost control a couple of times which means soiled clothes not to mention the stomach cramps. Last night he had a dose of Citrucel and this morning I went to the store and got Imodium. It seems to have slowed down a bit now, I hope we are about ready to leave this particular symptom behind for awhile.
    Again, thanks for the graphic, my daughter and I looked at it with the bubble wrap, it gave us a very clear idea of what Dave is experiencing.
    We have an appt. with a specialist on August 9th at UNC at Chapel Hill. A bit of magic was worked and the VA actually referred him through VA Choice. Awaiting this with hope.
    Donna Moore, Mocksville, NC

    1. Hi Donna,

      I'm sad to learn that your husband is experiencing these intestinal issues. I know how hard it is to watch your loved one have pain and know there is nothing you can do about it even though we do try!
      I too hope this passes soon for him as well as you!
      I'm so happy the bubble wrap visual was helpful for you and your daughter! Feel free to share the lesson.
      We too dealt with the VA as my husband was 100% service connected Korean War Veteran. The VA can be slow to move but when you finally get them going they are fantastic! Keep advocating, you're doing a great job!

    2. Hi Kathy, (update)the stomach pain wound up being caused by a gallbladder attack. Surgery was avoided. Sheesh!

      Beginning a new day with expectations of what this one will bring. *smile*

    3. Hi Donna,
      I'm glad that a surgery was avoided!
      Every day is a new adventure with Lewy!
      Please keep in touch.

  5. Hello. My 83 yr old husband of 11 years (I am 58 yrs. young) was diagnosed a year ago with LBD. He has rapidly declined. He is vocalizing his hatred of what is happening to him. I guess I should be pleased he's able to speak of it, although I don't believe he understands it. He's having difficulty breathing. He says he is out of breath, not when he's walking (he's mostly sedentary) but when he sits at the counter using the laptop or when he takes the dog out. Is this a normal progression?

  6. Hi Kim,
    I'm sorry to learn of your husbands diagnosis. I hope you are able to glean something useful from this blog :)
    You have almost the same age difference as my husband and I did.
    Although I am not a Dr and I highly recommend that you speak with your husband's neurologist or PCP, I can share with you my experience with my husband. My husband knew that he had some problems. To what extent I can not say with any certainty. You know when you just know that you might be coming down with a cold or something You just feel "off". That's the best way I can describe how he might have known. Of course he never believed, or led me to believe that his issues were "that bad".
    He too hated all of the restrictions he felt were imposed on him because of his issues and his blame was on me for them.
    As far as breathing issues, I suggest you take your husband in for a PCP appointment. There could be a lot of different reasons your husband would experience feeling out of breath and ruling out anything serious like pneumonia and helping with his comfort will be beneficial to you both.
    Please stay in touch and update when you can.

  7. Seeing the neurologist tomorrow. Will check in again soon.

  8. Well, home health has been ordered and we are going back to the Exelon patch instead of Aricept to address decline in cognition.

    1. Hi Kim,
      Thank you for the update. I know it's frustrating and scary to change meds for cognition issues. I was always afraid to stop Hubby's galantamine for fear of where that would leave us. Eventually we did stop it and there were no immediate changes for the worse, just the steady lewy decline.
      Keep in touch,

    2. Update on my Jerry: His condition continues to decline. We are grateful our PCP ordered hospice last September. They have been wonderful. Hospice covers the Exelon patch ($285/month) and provides all medications respective to his diagnosis. I don't know what I would do without them. Jerry's condition continues to decline, however, we have good days and bad days, still. He has a lot of difficulty talking (its exhausting), swallowing and walking. He has deferred all decision making to me, but he can be stubborn about sharing his pain level. Yes, he has random pain. Some days a 10, others 5. He refuses any pain meds. We lost our little dog (13 yr old dauschund, Toot) and he is devastated. LBD is a constant challenge, but I'm happy he is still able to be at home.

    3. Hi Kim,

      Thank you for taking the time to update on Jerry.
      Hospice is a wonderful organization to have on your team! I'm glad you have them. They certainly can add life to days.

      How sad about your little fur family member toot. I'm sure you're pretty devastated about it too.

      The rollercoaster ride of lewy is tiring for both you and Jerry, I know. I'm sure it feels like the weight of the world on your shoulders knowing you have decisions to make alone. Every decision feels right and wrong at the same time. Prayers for some peace and clarity of mind for you.

  9. Hi Kathy,
    I just read your post about stopping your Hubby's galantamine. I hope you won't mind if I ask why. Dave was originally on Aricept which seemed to make him more agitated, the doc was going to put him on the Exelon patch but he sweats profusely when he is out and about on he farm. The other alternative was galantamine. Dave seems to have done pretty well with this. Just wondering if it begins to stop working or if side effects develop after extended use.

    1. Hi Donna,
      Thanks for asking. We stopped the galantamine because it had become non effective. Hubby never had any adverse side effects from it and right after he started taking it the cognition change was such that I wanted to hug the makers. Eventually it was increased to the full max dose and as his disease progressed it truly was no longer helping. To be honest it had probably stopped being effective long before we stopped it but I was afraid of what the decline might have been. When we stopped it, there were no changes, good or bad.
      Keep in touch.

  10. Hi Kathy,
    Thank you for your quick reply. I felt this was probably the reason but I appreciate you letting me know. Dave has good days and bad days. His temper is quite explosive and can be triggered unexpectedly. He has always been somewhat that way but LBD seems to make this particular trait multiplied and on steroids. He is obsessive about watching TV and if anything interferes with his ability to hear he can be pretty nasty. He is also quite protective of what he feels are "his things". The remote control, the check book, the debit card.

    I have noticed his ability to spell has greatly decreased and his ability to make good financial decisions is scary. We went through a period about 8 years ago where we almost lost our home due to some very risky financial decisions. At the time I didn't realize what was going on but looking back I think Lewy was already making himself known. He had a line of credit against our home which was paid for, borrowed money from our son and had purchased a beach house. He forged my name on a bank document. We managed to save our home by getting a reverse mortgage and paid off the debts plus sold the beach house. Now it seems he is heading back in that direction and thinks I am over reactive when I talk to him about using the credit cards or setting up the ability to borrow against what little money we have left in our retirement fund.

    Kathy, you and others who have been through all of this is what keeps me going. Thank you again for your reply.

    Many Blessings!

  11. People with Lewy Body Dementia are more likely to develop initial and early symptoms of sleep disturbances, hallucinations, gait impairment and also visuospatial impairment. Alzheimer’s shares some common symptoms with Lewy Body Dementia, coexists and contributes to the dementia which sometimes becomes difficult for the doctors to differentiate between them. Additionally, most commonly seen symptoms of Lewy Body Dementia include recurrent visual hallucinations or delusions, problems with dealing tasks, sleep disturbances, mental decline and spontaneous motor impairments. Autopsy is one of the ways of diagnosing Lewy Body Dementia in people and the core diagnostic criteria for Lewy Body Autopsy include; progressive dementia, visual hallucinations, rapid-eye-movement, sleep behavior disorder and signs of Parkinson’s disease. A diagnostic test known as Lewy body composite risk score (LBCRS) designed to diagnose Lewy Body Dementia and Parkinson’s disease Dementia. The test was simply designed of some questions asked to check the mental conditions of the patients with a simple answer of yes and no and also previously conducted test results authenticated and assured the clinical detection of Lewy Body Dementia and their contribution to Dementia with this test. Medicines over therapies, not a good idea. Normally medications used to treat mental disorders are mostly accompanied by other symptoms such as sedation, hallucination etc. Most of the times doctor recommends antidepressants to the Lewy Body Dementia patients which in my opinion should not be taken in excess. Better try behavioral and counselling therapies instead.
    Reference: http://bit.ly/2e5hYgU

    1. My mother passed away 5 months ago having had Lewy Body dementia for a number of years. The symptoms you have outlined are precisely those my mother exhibited and I agree that mild doses of antidepressants help ease the hallucinations but there isn’t much else that can be done other than distracting them with things they like.
      My father passed away after a short illness, 2 and a half years before her and Mum could never really take on board what had happened to him even though she attended his funeral. She often thought he was just out for a short while. Perhaps it was a blessing in disguise because she adored him still after 67 years of marriage. It was hard telling her over and over again what had happened and being rebuked for not telling her when it happened.
      They are now at peace together.

  12. This is a very comprehensive site. Thank you for your input.

  13. What's the Difference Between Dementia and Alzheimer's Disease?
    senior apartments

    1. Hi and Thank You for asking.
      Dementia is a blanket term that describes cognition issues. Alzheimer's is a type of dementia, as is Lewy Body , frontal temporal, vascular etc.

  14. Kathy,

    Thank you so much for your insightful website. I am sorry you've had to go through this viscous illness as well. This disease truly is a thief, well said. Our family flew to Maui (from LAX) with my father (I'm 40, he's 71) for one last trip to the family timeshare; what a big mistake. My dad became very confused and agitated on the flight and was ultimately subdued by an air marshal and taken off the plane on a stretcher with stiff legs that wouldn't bend, a dazed expression, and his mouth was ajar. Unfortunately, I wasn't on the flight to offer assistance. After two days in the hospital, he was discharged and here we sit in the timeshare trying to figure out how we're going to get him home. Well, I just wanted to personally thank you for this site you've created. Best wishes to you and your family.

    PS. To anyone thinking about traveling on a plane with a LBD loved one, please carefully consider the dramatic impact the flight may have on your loved one. There's always Facetime or Skype!

  15. Early and accurate diagnosis is important because LBD patients may react to certain medications differently than AD or PD patients. A variety of drugs, including anticholinergics and some antiparkinsonian medications, can worsen LBD symptoms.


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