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, January 24, 2013

Dr Grumpy

In all of my married life, 31 yrs, Hubby has had maybe 3 ER visits for himself. broken ribs (fast shower half time of a football game), asthma attack and kidney stone (hated seeing him like that but funny as all get out when he got some loopy meds).
But in the last few months, Lewy had sent us to the ER 3 times.
Lewy Body Dementia presents itself with symptoms of Parkinson's Disease.
From the lbda.org website Parkinsonism or Parkinson's Disease symptoms, take the form of changes in gait; the person may shuffle or walk stiffly. There may also be frequent falls. Body stiffness in the arms or legs, or tremors may also occur. Parkinson's mask (blank stare, emotionless look on face), stooped posture, drooling and runny nose may be present.
Hubby lives with all of these symptoms and the one that scares me, is the falling.

As a matter of fact, it was the falling that made me decide to seek Home Health Care. The day I was gone from home and returned to evidence Hubby had fallen but even worse, Hubby didn't remember what he had hit. You can read about "That Wash Woman" Here.

Hubby had taken a fall in the bathroom the other night.
He's taken some doozies in the past but always was determined that he didn't need to go to the Dr. Our stubborn heads butted many times about this. He won all the times but 2. This last time he didn't even argue and agreed to a late night visit to the ER. You know it was bad when he said yes.

His complaint was his back, we called the ambulance for transport. I grabbed our Emergency Bag and the Folder I had put together with Hubby's info. See my folder items here.
When the ambulance arrived I gave them the short version of the situation and about Lewy. They loaded Hubby and turned to me for info and I smiled really BIG, handed them the folder and declared, I'm about to make your night! And apparently I did because the look of confusion went to delight when they realized the treasure trove of information they had and it was theirs to keep! They went on and on about it :)
Hmm, now I wonder if I should have been all smiles while they were wheeling my husband off to the ambulance for a trip to the hospital. #visiblyconcernedwifefail

Next stop the ER. I went inside to present Hubby's info as the EMT personnel carried Hubby to the back. I was informed that I would be notified when they had him in a room. I politely took a seat away from as many of the obviously sick wall to wall people in the waiting room. Seriously, the flu has hit our area hard. And a posted sign stated that the wait time for minor cases was going to be 3 hrs. ! People just kept coming as I sat there.

As I waited patiently to be notified what room Hubby was in, I overheard one man I truly believed was not a minor case as he spoke loudly and rudely to his grandmother on the phone. I doubted it wasn't his finger he needed looked at. It was obvious he needed a serious attitude adjustment, and quick! >:|

After a 20 min wait I finally walked back up to the desk and asked about Hubby's room. I was buzzed through and Hubby had already been to and back from X-ray.
Everyone that worked with Hubby or had contact with us was very kind and concerned and attentive. It surprised Hubby to learn that the man that came in and told us who the Dr would be and took Hubby's vitals was his nurse. 

Hubby asked "Who was that?" I explained it was his nurse and Hubby was confused and I laughed when he said "That GUY?" 
Yep Hubby, men are nurses too. LOL!!

Another man marched into the room. The results were in and they showed a very small fracture to Hubby's T12 vertebrae. The man held up his fingers to show the approximate size of the fracture. He gruffly continued, There was no danger of any spinal cord injury to worry about. It's going to hurt like crazy, but if you think he can tolerate the pain take him home and give him meds.  The man quizzed me on meds and I gave him a short lesson on Lewy and pain meds and what Hubby was already taking. At this point I'm deciding this must be the Dr. I didn't see a name tag so I named him Dr Grumpy in my head. Dr Grumpy told me to double Hubby's current meds for his pain, then he turned and marched out. No hello, no goodbye from Dr Grumpy.  

I didn't let Dr Grumpy or the circumstances distress me, I actually saw a positive in the situation. Since we have to live with Lewy Body Dementia I use every opportunity to educate about it. This was Hubby's first trip to the ER in the night. This meant a new group of people to meet and share. I did.
Hubby was discharged for home.

Between Hubby's shot of Demerol at the hosp and his pain meds at home he slept the rest of the night. Good for us both.
The next day Hubby did well, still in pain but he slept most of the day.
Then the night came.
Hubby was calling out every couple of hours, even in his sleep. Neither of us rested well. 
I have a call in to his PCP to see if we can do something else for the pain.
Of course I'm worried about meds and worsening cognition changes but after last night I'll do whatever we need to keep Hubby pain free. I'm praying hard.

Today Hubby is still suffering with pain and is extra extra needy. 
I'm afraid to touch him because he hollers out but he needs my help with everything. Like getting up to go to the bathroom, getting in and out of the bed and the wheelchair, covering up and most recently he called me to help him divide a piece of candy evenly for the dogs to share. Really Hubby?! :/ LOL!


  1. Thanks for sharing, dear. Wishing you a good nights sleep and hubby a painfree night.

    1. Thank you for your well wishes. I appreciate them so much :)

  2. Walking alongside you Kathy as we travel the road of LBD. One concern, however, you state LBD presents itself with changes in gait. LBD, from what I've learned and seen in my mother and others, presents in different ways.

    Just as the disease has no "set" progression it begins and develops as an individualized journey. Many people take various meds and experience more susceptability to infections and other health challenges all having an effect on LBD. Providing even the "ordinary" meds because of the new directives Dr's provide a higher dose for a shorter period of time due to possible side effects making the meds ineffective in future is a really wrong decision for LBD patients. My Mom recently was given a "regular" dose of amoxycillin and fell two times in three days plus was hallucinating far more often.

    You mentioned this was your third visit in a short period of time. What surprises me about your ER visit is you were very prepared with your "kit" yet "Dr Grumpy" told you to double his existing meds for his pain. What is it going to take to get the word to Dr's what may work for the "average" patient can be fatal or at least highly detrimental to LBD patients?

    We had an even more serious "error" made in the ER with my husband and I no longer feel the ER provides the overall medical expertise or at least the medical supervision it once had in all medical facilities. Have you considered perhaps you're working within the wrong medical system for your ER choices? I guess my question is if your husband has had ER visits for falls before and they've been a part of the LBD experience, what's in his record? My suggestion is you need to review his hospital records from the ER to ensure there's no "personal comments" about you being "overconcerned" or notes that do not include your husband's LBD diagnosis at the top of the list when they pull up his name. I've done it and it's amazing what misinformation is in these records. My husband's said he was an amputee (he wasn't) and he'd had a complete gynecological exam. Right! Two things I never discovered in over forty years of marriage! Errors are made every day. Misinformation can be rampant. Opinions, comments and even medical information as I cited can be put into even the most "advanced" hospital system's record. Check it out. You may also be surprised what you find.

    1. Hi Donna,

      Thank you for your input :)

      You are correct that no two LBD patients are alike. Those words, may, could and might should not be overlooked. There may very well be overlapping issues and differing presentations in symptoms. What I pulled was just a short list from the lbda site. There should have been a click link to the site. If you couldn't follow it, please let me know. I may have done something wrong. I've been known to :/

      I also understand what you are saying about increasing meds for even short periods could bring the effectiveness of said medication to a halt. I will keep a watch for this.

      Dr Grumpy's decision to increase the reg pain meds was more of my leading since I already knew that Hubby tolerated them at the level he was at. His PC Dr had prescribed them so he was familiar with Hubby's reactions to them. Something new ALWAYS makes me nervous and if we try something new I would prefer it was under the supervision of the PC Dr.
      The last time we had an ER visit and decided to give pain meds, I insisted that a very small dose of the demerol be given first and we would see what negative changes if any would be immediate. Then it was increased until Hubby's pain decreased yet he was still at "his normal".
      I knew this time around that demerol would be tolerated.

      I will get a copy of the ER notes. That was a great suggestion. Thank you!
      I giggled so hard at your Husbands intake information!

      Thank you for keeping up with us :)

  3. Kathy...

    Hi! I'm an occasional reader and just checked in. My mother, who was LBD, fell 2 days before Christmas. X-rays didn't show anything, but she had an MRI already scheduled and it caught a fracture in her T12. Her neurologist suggested she have a vertebroplasty. We consulted with the doctor who would do the procedure and thought my mom wasn't hurting that badly and not to risk it. Then I learned my mother hides her pain very well. Two weeks later she finally admitted the pain was the same level as childbirth, plus she was extremely unsteady on her feet.
    She had the procedure this past Thursday and it was a success. Physically, she's back to where she was before the fall...and more likely to use her walker. Of course, Lewy really showed up when she woke up from the procedure, but he hasn't been any worse than usual since then.
    Just thought you'd appreciate an alternative other than medication.
    Take care....

    1. Robin,

      Thank you for the info! I'll check into it and Hubby has an appointment with the VA next week, I'll ask about it.
      I've never heard of that procedure before so I'd appreciate knowing your experience about it.

  4. So glad to have found this. I have a 45 yr old, mentally handicapped, son who was diagnosed with early onset dementia in 2009. A year ago, it was further diagnosed as being Lewy Body.

    Just this past week I had to make a decision, strongly advised by his caseworker, to move him out of his apartment & into an Adult Family Home.

    I am already somewhat familiar with it because my dad also had it. His symptoms began in 2002 & he passed away in 2006. He was just shy of his 86th birthday when he passed.

    Reading this has really helped me a lot.

    1. Thank you for sharing with me cherielyn,

      My heart aches for you having to endure this twice in your life.
      I know your own heart aches for your son I do hope that you can feel some ease in your decision to move him into an Adult Family Home with the previous experience. You probably have advice, wisdom and support to share. I hope you will continue to stay in contact and offer what you are comfortable in sharing with me :)

  5. I was researching on Google and ran across your blog. I am very thankful I found it because my husband was diagnosed in 2011 by the VA neurologist with LBD and Parkinsonism. Everything you say is so familiar. Very few people or doctors know about LBD so my husband has had some strange reactions after cataract surgery in 2012 and then after being put to sleep for a throat biopsy. Finally after researching I realized that for LBD patients one has to be cautious about medications and anaesthesic. After something like 30 plus falls in 2012 I took him to the ER and explained that he was falling constantly and could not walk like he had been. They ran some tests and found what they thought was throat cancer. After tests, biopsies, PET Scan it was determined in September 2012 that he had tongue cancer with metastasis. Now having completed radiation and Erbitux for 7 weeks in December the chemo doctor says the current CT scan indicates remission. They cannot find any explanation for his extreme weakness and sleeping 18 hours a day. He is lucid at times but so weak and uses a wheelchair to get around the house. He requires my assistance in nearly everything. He had to have a feeding tube inserted because of the radiation and is unable to eat but can drink water by mouth. My question is do you think it is the LBD that is causing the excessive sleeping and weakness. I have asked all the doctors and they just say to wait another month and see how he feels.

    Thanks again for your blog. It has been a great help to know how someone else is dealing with LBD.

    1. Thank you for taking the time to comment.
      My apologies for not getting back to your question sooner.

      My husband does sleep so much. Much of the time he can sleep 20 hrs. Not straight through as he gets up to go to the bathroom or find a snack. I keep a container of candy by his bed. Or rises to eat something prepared for him.

      Hubby also has difficulties walking. This makes him a fall risk but he is stubborn to insist on doing it so from our bedroom and into the bathroom there is something withing every 3 ft he can grasp. We ALWAYS use the wheelchair if we leave the home though. He has clutched too many people for support.

      I believe that the sleeping and the weakness are contributed to the Lewy body.
      I was concerned enough about the excess sleeping at the beginning of this journey I asked his neurologist about it. He told me not to worry about it. It was the bodies way of coping with the shutting down process. Those weren't easy words to digest but it made sense to me so I let Hubby sleep.
      There are days however that he can stay up all night and all day and all night again so the fluctuations never cease to amaze me.

      Have you tried the lbda.org site? There is a wealth of info about Lewy and a forum to be involved with or just read.

      Please stay in touch and let me know how things are going with you and your husband.


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