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.

Saturday, May 25, 2013

Rude Awakening

Odd how our emotions can switch from one extreme to another.
The other morning Hubby took a really hard fall from the bed hitting the bedside table, busted his lip open, scraped his nose, eye, chin, knee. Blood everywhere. ewwwww

And all before I even had a cup of coffee!

I got him off the floor and into the bathroom so I could tend to him. He wouldn't cooperate and my frustration, anxiety and BP started rising I'm sure.
After finally assessing his injuries as non emergency I got him cleaned and re settled in the bedroom. Poor guy looks terrible!
I walk into the bathroom to clean it and hear him tell the dog,
"Did you see Daddy's face? People are gonna think I was drinking and got in a fight and didn't win."
Oh sheesh! LOL!!!

 Our reality is that the declines in Hubby have been coming slow and steady but coming non the less and coming much more frequently that making adjustments to any new normals feel out of reach.
Essentials for packing
LOTS of confusion, 
LOTS of repetition, 
LOTS of hallucination, 
LOTS of feeling displaced and wanting to leave, LOTS of conversations that seem to make no sense to anyone but Hubby and at times not even to him only leaving him frustrated. 
I even found a collection of items Hubby had gathered for packing so he could leave. Smart choices on his part as they were necessary items, well I don't know about my bottle of perfume. 
But I continue to pray for peace of mind, heart and spirit and to look for the humor in the confusion because I don't know any other way to deal with the sadness of the situation.

I haven't blogged much as we seemed to be coasting along with little to nothing to talk about. Not many humorous moments to share either, bummer. 
I did a couple of DIY's with PVC I will happily share. 
Hubby has chosen to sleep in our bed at nights now. There are no rails on that bed so I made some. $15 worth of PVC and so far so good. I am thinking I may have made it a little long but that's an easy fix. I used the hospital bed rails as a pattern but had to make the pvc rails taller for our own bedside.

During the day Hubby sleeps in his hospital bed. He can see outside his window during the day so I wanted to give him some aromatherapy at his window. I built a PVC stand, window high, and set a planter of lavender in it. Now when the lavender blooms Hubby will have a soothing aroma as he gets some fresh air and watches his birds! It was an inexpensive and fun project to do too.

I do have a couple moments AND I want to share some news about a trial that researchers at Georgetown University Medical Center are doing. A small dose of an already approved chemo drug that might help reduce or get rid of some plaques in the early stages of people with Lewy Body Dementia. According to the researchers "(The Study) offers a unique and exciting strategy to treat neurodegenerative diseases that feature abnormal buildup of proteins in Parkinson’s disease, Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), frontotemporal dementia, Huntington disease and Lewy body dementia, among others."
I will let you read for yourself here.  
I don't normally get too excited in all the news of "might" but this one had my attention. And although I believe it is too late for Hubby to receive the best benefits, it might help someone else just starting.
For anyone interested in joining the trial registry, here is Dr. Turner's email address:

Now on to what IS.
When Hubby isn't driving me up a tree with the never ending looping questions, he is cracking me up with his confusion and hallucinations. 
More cracking up than driving up the tree.
He asked me if we changed hands since he has been here.
I asked what he meant by that and he said, "Have they got a new manager?" 

Hubby thinks he is in a VA Home and I am the caregiver so again, I explained that this was OUR home, we are the people that live here and it belongs to us, to which he replied "Oh No! I'm not going to be the manager. I'm not going to manage all you women!"

And my favorite - One night, Hubby was sitting on his bed looking at me and said, "You know, I love you. 
I don't know why but I'm glad I do." 
Me too Hubby, me too!


  1. Hi Kathy,

    When Lilburn was still in our king bed, I put on bed rails. After several incidents that could have caused serious injury and a discussion with his geriatrician, I removed them. Seems they can cause more problems than good - namely, entrapment. See http://www.fda.gov/MedicalDevices/Safety/AlertsandNotices/PublicHealthNotifications/ucm062884.htm and http://www.npr.org/templates/story/story.php?storyId=5519589.

    If you use bed rails, the guidelines are to allow minimal open space for potential entrapment, use pocket pouches or bed rail covers that cover entrapment areas and have safety straps that secure the bed rail to your bed frame.

    Lilburn's hospital bed has only partial bed rails (about 18 inches long at the head of the bed, and we haven't had any incidents.

    I don't see how you have yours attached. Maybe you could modify so that there is not such a large space between the bars in the rail.

    So many challenges!


    1. Hi Ro,

      Thank you for the info :)

      I used the hospital bed rails as a pattern. The space between the rails looks larger than it really is. The part I extended was the bottom to raise it to mid mattress.
      The rails are held by 2- 2 1/2 ft poles that slide under the mattress.
      Thus far I have not glued anything but when I do it will only be the elbows that come up from the mattress poles. I'm giving it a test run. The rest fits together snugly but can be disassembled in a jiffy if need be.

      I don't expect that he will sleep in this bed with me a long time. He hadn't slept in it for more than a year but decided to when he had his positive fluctuation a few weeks ago. I foresee him moving back to his hospital bed in the near future.
      Again, Thank you for the links to safety information.

  2. Kathy you are an ANGEL <3

  3. Kathy,

    I am impressed with your projects.

    My husband fell out of bed recently also and he was taken by non-emergency ambulance to be checked out. ER did everything but apply ice to his knee: not a stroke, not a broken bone, and not another UTI.

    I put a chair by the bed that actually helps him get up and spaces where he should sit when he lays down.

    I love your humor and thanks for that link which I pinned on Pinterest.

    Hugs and prayers,


  4. Kathy,

    My husband and I just returned from three weeks at Mayo Clinic in Rochester, MN. In the last year, his speech has become very fragmented and is having a lot of problems with balance. After all the testing he went through, the diagnosis is Lewy Bodies with Parkinson's. What the heck it Lewy Bodies?

    Well, by the time we left, we were thoroughly informed what it is and what to expect. I immediately felt stressed as I had previously gone through Alzheimer's Disease with my former husband who succumbed to the illness. I went through unbelievable stressful times and am not looking forward to the future.

    With my Alzheimer husband, I would be awakened in the middle of the night and he would be gone. He had decided to take walks around the neighborhood at 2am and I would be searching the streets in my nightgown and robe to find him. Other times I would come downstairs and find every burner on the stove on and red hot! Those were just a sampling!

    He was never mean and when I look back, I think he too, had Lewy Bodies since he hallucinated all the time. In those days, most doctors didn't even know what Alzheimer's was. Now Lewy Bodies is a recently new discovery in the last 15 years.

    To even contemplate the future is disheartening for both of us. As yet, my husband has no signs of dementia but does have the masked face. His temper is quickly aroused and he feels very insecure when I am gone for short periods. He calls my cell phone to find out where I am. Something new. He watches the news, does crossword puzzles every Sunday, and reads 2-3 books a week. He also goes to the gym and works out daily for at least 1-1/2 hours. He is confident he can beat this ! I wish it were true.

    I see you have been at this for the last 6 years. My husband is 84 and this just became noticeable in the last year when he had to give up golf ( a daily routine) because he had weakness in his left hand and could no longer hold a club. I wonder how many years it will be before my husband loses his cognition to dementia. At 76 years old myself, it is going to be difficult for me to take care of him when that time comes but we both promised each other we would never put the other in a nursing home. I wonder how realistic that will be when the time comes? I dread the thought since we put my father in a nursing home as a last resort...the best but even the best is not good enough.

    I enjoy reading your blog and your humor. Keep up the good work even though I know your daily life is not peaches and cream. There are people like me who care as we are all in the same boat and need to communicate with each other. Looking forward to your next episode!


  5. Sure enjoy your blogs! Thank you

  6. Thank you for your blog. My husband of 43 years was diagnosed last August with probable LBD. He is on no medication and is a joy to be around. I am learning to interpret what he says as to what he means. I am learning to interpret his actions as to what he is feeling and trying to express, rather than what he is actually doing. We are blessed and making every day the best one for the rest of our lives. The first years were tough before I knew he was ill. Once there was a diagnosis, and I knew there was a problem, I could look at the situation quite differently and not take offense. This does not mean I don't have snippy days when I try to take on more than I should and try to push his needs to the back, but I am learning to monitor that too. I am learning that I don't have to do everything he insists on doing when he wants to, that there are ways to redirect his interest and do it in a way that is respectful (which I am learning)or postponing it in a pleasant way, giving him something to look forward to another day.
    Kathy, there is life with LBD, and there is life after LBD. I want it to be without regrets and with fond memories.
    Best to you and Sonja and the others who are facing this. I will look forward to following your blog. I am a computer illiterate so I don't know how to do the one part of what they ask so if anyone wants to e-mail me, I would be happy to correspond. My e-mail is cmckinley4967@yahoo.com

  7. I admire you for being a very understanding, loving, and patient wife to your husband. He is a one lucky guy to have you by his side. That even though, he has a deficiency, you still manage to take good care of him. My favorite part also would be the last part of your blog, that is such a sweet words from your husband and I'm happy for you. Keep on fighting! I hope that the news that you've read would have a great benefit for your hubby.

  8. Hi Kathy,
    I really enjoy your site. It's a great platform for people to share their experiences with this disease.
    I contacted you previously as I was wondering if you'd consider guest posting on your site? I would have a great idea for a piece on Alzheimer's. I'd love to discuss this idea further with you. Please contact me on my email (ihunkeler@blueglass.co.uk), I'd greatly appreciate it.
    Warm regards,


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