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.

Thursday, June 9, 2011

2 coffee pot day

Hubby had a busy night last night.
Many shuffling trips to the kitchen to raid the refrigerator and of course needing all the support he can get by leaning on various noise producing things.
Scooting chairs,
frig doors with misc jar items in them,
fully top loaded dressers with clinking things on them (UGH note to self, CLEAN OFF THE DRESSER!)
the foot of the bed where MY FEET ARE!  Both ways. Although this wasn't noise producing the wakening seemed unnecessary.

Lewy body causes Hubby to shake without control. So when he clutches the bed it's almost like having a vibrating bed. That used to be fun when I was young. Not so much now.

So after Hubby tires of the kitchen trips he decides to raid his candy drawer.
Candy that has rattling wrappers. Wrappers that have been glued with never get it open in the night glue!
Hubby fought the candy for what seemed an eternity until I wanted to throw the candy out the back door!

So needless to say, my night was busy too and my interrupted sleep made for a cranky Kathy this morning.

To add to my attitude I had forgotten to set the timer on my coffee pot. This means I must wait for my coffee instead of it waiting for me in the morning.
At this point I am not sure who I am more annoyed with, Lewy, or myself.

Yes, I know I have a bad morning coffeeless attitude, and no, I don't intend to do anything about fixing it. So deal or stay away until I have had at least the first cup ;-)

But does Lewy remember this? NO! Lewy rises and makes a trip to the bathroom. Then he sits on the side of the bed and wants to know where his coffee and sausage biscuit are.
Are you kidding me?!
You walked all night getting things for yourself and now you are placing orders?!
Well I will have you know right now that I took a deep breath, sighed, and grumpily mumbled, ok as I retrieved his breakfast.

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

I hope low tone mumble counted as soft.
In the 60 seconds it took to get his coffee and bisc, (and my second cup) I recalled a time Hubby woke up and asked me what time they served breakfast around here not realizing he was in his own home. Maybe this was a time like that.


By the afternoon the coffee had already made it's internal round and bathroom trip so all was well with the world again. :)

Hubby has been quiet and or sleeping.
After a bathroom trip he decided to put on a pair of shorts that had buttons.
I watched him attempt to button them for close to 15 mins.
It saddened my heart to see his struggle. I weigh heavy the options of when to help and when not to. I don't think I'll ever master that decision making.
Finally frustrated Hubby announced, "Well I can't get these things done."
I offered to help which he accepted gladly.
He then sat down on the end of the bed and in a disgusted and defeated tone said, "And I think I can ride a bicycle."
I looked right at him and smiled real big and told him, "Well Honey, We all need to dream."
He thought this was quite funny and started laughing and said, "I guess you're right".
Then in a matter of fact tone, I added, "Of course I am."
A remark that made us both laugh.


  1. I am glad hubby can still talk to you and tell you what he wants. The hardest part of caring for my mom in the final days she was home was her inability to talk and walk. :(

  2. Oh girl!!! We all have those days...Proverbs 15:1 is my motto. I have to replay it over and over in my head daily when dealing with my three children (AND hubby!!!).

  3. Sigh; My Hubby is Diagnosed last June as having met up with Mr.Lewy Body somewhere or other.I did not meet him but Boy am I getting to Know Him! The Mood swings and ANGER are the Hardest to deal with for me.My hubby was Never ever

    Angry or Ready to start Punching and Kicking before old Lewy showed up! I wish there was a way to Erase Lewy Body as silently as he arrived! My biggest concerns are his endless Nightmares of strangers with no Faces attacking him and the Constant yelling he does that scares the Dust out of our three pets! Why must he Yell out the questions? I'm Right here with Perfectly good hearing! I must confess I have a little sign on my Fridge - It says I haven't had my COFFEE YET!
    Don't make me Kill You! I show it to him every Morning although recently he is now SUNDOWNING and that means Day is NIGHT & Night becomes DAY! Oh my lord what is next in this Disease? He also suffers from PTSD.From being a young 5 Year old child during the beginning of WW11 to 14 when it finally ended.
    Yes my husband has Lots to feed on if it is Negative & believe me he Finds it!
    Sorry for your stress but just wait Love it gets Better....Not.

  4. Hello all;
    Well last night was up & down and Nightmares! So Today at 1:30 p.m. Sunshine is still SLEEPING???It will be another all nighter tonight too I Guess if he keeps sleeping during the Day! I hesitate to wake the sleeping Calm Hubby & awaken what the BEAST?? I shall let you know later.

    1. HI Maggie,

      I'm sad to hear you and your loved one have to take this journey on the Lewy Roller Caster.
      Caregiving is hard enough with plenty of sleep, much less the up all night wandering. I wasn't a happy camper when Hubby did.

  5. Hi Kathy;
    Is Your husband still the same or at a worse stage now? How are You holding up?
    I am Fast Learning all the Doctors Claim is Helpful really is NOT!! Have you found this also to be the Case? For Instance The Doctors CLAIM there is a Lovely Little Patch Called Exelon - Rivastigmine 10 That supposedly Stops Lewy Body in the
    Track it is In NOW for approximately - 10 - TEN YEARS???!!! Now Wouldn't that be NICE if it Really did That!! My husband is on it & sometimes He just was way out there on another Planet so Me being Bold & Daring put a Second Patch onto his Back & lo & Behold between 30 - 45 Minutes later he is All Clear & Making sense in his Thoughts & Speech Process .!! WONDERFUL I Have the Answer!!! Okay now Go and See The Specialist & tell him what is What & How I have solved it & out of his MOUTH comes Well...His BRAIN can only take in so Much Medicine at a Time so I don't Think a second Patch is the Answer!!! I am READY to loan my Husband to him for an entire WEEKEND during which I'll Hibernate!! Honestly! I absolutely HATE all the Scraps & Arguments it takes to get my Darling to get DRESSED, but if we need to go up town I am quite sure the old Tongues would really start wagging if he were Nude or nearly so??!! I also find sunshine seems to almost wait Subconsciously or not until I just fall asleep & up he Pops out of Bed Trying on different Outfits , Putting on his Hiking Boots Ready to get Going somewhere & Then he YELLS ....HELLLOOOOO .... ANYBODY HOME???? Now our Cats are hanging off the ceiling & the Wolf Chow Dog is Growling & I'm Fighting out of the Bed Covers in a PANIC for WHAT ??? Oh Yeah His Highness Roared!!! Honestly! Last Week he wouldn't Shut up so I went to my Tool Cupboard & got out the Roll of Duct Tape..I then Told him to SHUT UP OR I"LL TAPE YOUR MOUTH CLOSED!!! He kept very quiet after that episode until 11:30 a.m in fact!! I just do not feel that is the correct way to deal with someone who is sick & uncooperative however it did work!
    MyPsycho Birth Mother was a suicide on December 23rd,2013 & Boy what a FUN TRIP that was over to Vancouver for an entire Week trying to sort through emotions & hatreds & Keep Hubby from running out into the Traffic!!!
    Oh well I did manage to Finally stop the Truck Calm honey down & Then put a Pin into the strap of His seat belt so it could not wind in past a certain Point! Sometimes my old brain fires up & works! That only left Locking the Doors Automatically as soon as we were all in otherwise Honey was opening the doors yelling for help to passers by in their cars scaring at least one life off my poor brother & our Dog Mariah ... Well she would just look at honey with an expression of absolute disbelief ...You actually Open Doors and Yell while the Truck is Moving??? Stare towards Honey!! Yup we made it there and all around the Dumpy areas we needed to go & back Home to Peace & semi Quiet again.
    So how is Life for the rest of you who have a Loved one with Lewy - Body??? I happen to Know this disease does not care if you are Male or Female & also could care less what age it attacks your Brain in either. Take care all of You others out there You have my Love & Support for whatever it is worth. Kathy thank-you for giving some of us a Place to Whine in so we can maintain
    Peace & semi quiet with our Loved ones with Ole Lewy Body.Sincerely;
    Maggie Mae = AKA Mrs.Lewy...

    1. Maggie, this particular blog post is 2 1/2 yrs old. There is still a great deal more to read with this blog. It offers real life glimpses into our challenges and triumphs. To see the things we dealt with and learn what worked and what didn't.
      My goal for it is to offer hope to those struggling with Lewy Body caregiving, share my faith and encourage you to look for a positive even when it seems impossible. I know there were many days it seemed hard for me.
      I hope you are seeking out solutions to help you and your loved one. Be it home health, respite time, personal time, support or even attitude adjusting, all of which I had to do to make it through. It's not easy I do know.
      My caregiving ended for my husband on Feb 11, 2014.
      I can look back and say, I did the best I could with what I had and what I knew. I was willing to learn and change if I had to so I could make things better for us both. I know my husband was not capable of doing that.
      Prayers that you and your loved one are able to find some peace, Maggie.


  6. Kathy;
    Thanks for Your encouragement. I have taken the Course on Caregiving at home & I still feel Lost!!What sunshine is going through seems parallel with what you & your Husband endured Only in Much Less Time. My Sunshine has only just been diagnosed with Lewy Body last JUNE & already I see signs you did not experience for at least Five Years in?. I also can tell you my Sunshine has PTSD from being a CHILD during the war in Germany & it started as he Turned Five & ended when he turned 14 years old.He wa snever diagnosed or treated for it & now The doctors think it may SPEED Up good old Lewy Body but they don't know by how much.??? Yes it can be a real Challenge & that is especially hurtful when he Blames me for things not getting done or Missing documents when he has been up sometime when I was sleeping & hidden them in a SAFE Place away from Prying eyes.Oh well if God Brings me to it I trust him to Also bring me Through it. I Believe in our Father on High and always Speak to him on whatever it is I am troubled by or Saddened from.He always helps in some way or other & I find Solace in that.Maggie Mae.

  7. Hi everyone;
    Well we have Sunshine on New Meds & so far he is sleeping at Night & all the way through each night!! What a relief that is although as you can see I am still untrusting
    to this New Sleep Pattern & find myself still awake Listening for any Moves or Coughs or Disturbances whatsoever so Sleep for me is still hard to come by.Ahh well as long as Sunshine sleeps then I too will eventually RELAX & sleep I hope.
    I have no New Problems to write but I must admit we have seen " The Nurse" & I am apparently up for about Four Hours Respite This coming WEEK!!!Now what should I do??I have not had any Breaks since May 2013 & do not know if I can Really handle one now that I may be getting it??!! Silly isn't it?? Well to any of you who do read this I sincerely Hope Good Ole LEWY Misses You & Your Loved Ones!! He is the very Demon Damian Lewy from HELL!!! I am SURE!
    Maggie Mae - AKA Mrs.Lewy bidding you all a Good Night now.Sweet Dreams.


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