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, February 23, 2013

Fat Lip, Big Mouth

The other morning Hubby woke with a fat lip.

It was quite a surprise because he hadn't fallen out of bed, nor was there anything that he could have hit in the night. But BAM! There it was as big as all get out. 

Hubby said he bit it in the night. I thought that he had his Lewy Body Dementia REM sleep disorder in full swing (pun intended) hitting his own face during a “fight”. 

I had even thought he might have had a stroke so I had him do the S.T.A.T. signs for me - 

Smile (looks weird but both sides are moving check), 

Talk to me (jumbled but understandable, check), 

Arms up (check), 

Tongue out (sticking straight out no down angle, I bet he enjoyed doing that, check) whew no signs of stroke.

Whatever it was, there was no denying something happened to him.

Perhaps this was a “payback” for the hateful way he's been treating me as of late. Not just privately but in the presence of others. And harsh enough to be scolded by Oldest and Youngest Daughter on 2 separate occasions. Accusations of theft, personal insults, his insistence of leaving and moving out on his own, driving, the list goes on and on so you get the point.

Yes, I know he can't help it and he can only react to the things his brain is convincing him of but for the last 4+ years I've been a 24/7 caregiver to Lewy Body Dementia, a year before that a watchful wife/caregiver, a few months before that a concerned wife, a couple months before that we were working on repairing a damaged marriage, 17 months before that I was fighting undeserved divorce proceedings, learning how to live alone and deepening my relationship with the Lord. A while before that Hubby had an ongoing affair that shattered our world and the 24 yrs before that I was a homemaker, mother and wife living with and buffering for Hubby's PTSD.

So, separating the man from the disease isn't always easy especially when I'm feeling emotionally beat down by his harsh and hurtful words. I've shook it off, walked away, run it out, and yet there are times that my feelings get hurt and I run my big mouth.

These deep feelings have kept me away from blogging. The deepest hurt is his insisting that Hubby wants to leave. He even wanted to look into placement.

I feel like I've tried so hard to keep things easy for Hubby, yet he continues to reject me.

I wrapped myself in prayer but admittedly I don't even know what I needed to pray for so I asked for a Spirit of calm to make the contacts necessary for Hubby.

Eventually I did receive that calm and leading to make the contacts and this was actually before the big melt down with my mouth, just needed to throw that in.

Wouldn't you know it though, when I told Hubby I had made the contact he changed his mind about leaving for placement. Imagine that! He is cognizant enough to understand what it means if he chooses to go into a Nursing Home. I told a friend I felt like I was on a hamster wheel because he doesn't want placement but still wants to live by himself. Squeak! Squeak ! Goes the hamster and the wheel.

Contact about placement was only for information. I wasn't sure what the process was or where or how to even start. The social worker at the VA was new so even she wasn't sure and referred us elsewhere, to another new person, who wasn't sure where we were even located on her map.

To my surprise none of our 3 local facilities were contracted through the VA. One never has, one sold so they don't and won't have a contract and one lost their contract due to issues. The SW didn't say why. Because I was almost in disbelief of the local facilities I actually visited the 3 places . She was correct and after walking into the one that lost their contract, if the greeting I received was any indication as to why, I could see! I would never want Hubby there!

The SW did give me the names of 3 facilities they did contract with that were the closest to us. But each one was at the least 45 miles away! She suggested I look on the Medicare.gov site to compare and research the 3 suggested facilities.

The first and closest one I looked up was an absolute No! No! No! A 2 and 3 star rating out of 5 and complaints on the medicare website was enough to dismiss that idea without ever seeing the facility for me. So Hubby has 2 choices if he chooses to go into a home closest to our location. The other 2 places were higher on the rating scale so if Hubby decides this is what he wants, we will be taking a trip to each one. This is breaking my heart apart in small pieces at a time.

I also had to ask questions that were hard for me to ask. How would it need to be paid for? Would I lose my home, would I need to find employment? Would placement nullify the guardianship?

I was assured that if Hubby chose placement nothing would change except his location. Being 100% Korean War era Service Connected Veteran qualified him to Nursing Home Care and if he decided he didn't like it, he was free to leave and come home. Nothing was permanent. That eased my mind a little.

It's been a few days since the melt down. Hubby has been in a nicer mood, for the most part. He still continues to need my presence even though her resents it. He won't ask others to do for him, just me. I'm heart tired and have neglected my own needs but this past week I'm trying to sort out what those needs are and working on them.

And to end on a good note, we FINALLY got the Home Health Aide hours straightened out and are once again receiving 10 hrs a week.  
Please continue to pray for us as we walk through this part of the Lewy Body journey.


  1. Excellent post and I can identify with a lot of it. So far, however, my husband treats me respectfully in public.

    Hugs and prayers,

    1. Hi Carol,

      I'm actually accustomed to his rude behavior to some degree. That's kind of sad.
      The girls however were not.
      I appreciated their defense :)

    2. Just noticed. Thanks for following my blog, Kathy. I am putting you in my list also on Plant City Lady and Friends.

      Hugs and prayers,

    3. For some reason I had trouible linking http://www.thieflewybodydementia.com/

      Do I have it wrong?

  2. Kathy, I know how you are feeling. I lived through all the fears associated with a nursing home. If I had it to do over again, I would only use the rating system as a guideline....based on my experience, all nursing homes have the same issues. The best way to keep issues in check is to visit the facility a lot.

    The benefit of having Hubby in a facility is you will have more help and you will get to rest a little. You will more than likely worry about Hubby but once you know the staff and teach them his nuances, visits become enjoyable.

    Don't be fooled by beautiful facilities which "look" nice because the home could be trying to make you believe something that isn't true.

    When visiting homes, look at the residents. Are they happy and clean? Does the place smell? What are the activities like? Don't fall for the home handing you a calendar of activities that don't happen. Visit about 11 in the morning or 2 in the afternoon. Are residents lined up in the halls? Are the residents left unattended?

    It is OK to place hubby in a home. What I found with my mom is that once she was around more people she hallucinated less and was happier. There was always someone awake if she woke up. She was safer in a home.

    You are doing a great job, Kathy. I truly understand every step you are walking. I lived a similar nightmare. My care giving job is now over. No regrets, I sleep well at night knowing I did all that I could. Life will get better. There are still lots of good days ahead!

    1. Sue,

      I've said this before and I hold firm that you amazed me with the diligent care of your mother. I know you can rest peacefully knowing you did everything and then some possible for her.

      Thank you for the tips. You can rest assured that I will definitely be looking closely into anyplace Hubby chooses. And blogging about them! ;-)

      Still praying for you my friend {{{hugs}}}

  3. Thank you Kathy I have taken the liberty of sharing this post on the Lewy Body Support Group Sunshine Coast FB page. I have been following your blogs quietly for some time and believe your blog will help many who follow our FB page. My Dad has LBDwP.
    Keep up the excellemt work.. Our motto is Lewy Body Disease Support Research Cure <3

    1. Thank you Dechen for sharing and quietly following.

      I mentioned to another blogger once that wondered if they even had readers due to the lack of comments, that many times we, the caregiver readers, just need to absorb the info that we read more than we need to comment on it.
      I appreciate your sharing on your FB Page, of which I believe I "like" anyway. If not I will be fixing that :)
      I'm always looking for ways to cope with and help Hubby and myself.
      The Lewy Body Support Group Sunshine Coast has a wonderful motto :)

  4. Kathy, you do not have a big mouth! I'm so sorry to hear about the challenging marital issues you've had; I'm sure you've heard this before, but he doesn't deserve your loving care. Remember that your life and what you need is just as important as what he wants, so don't hesitate to do what fits your needs. If that means placement, so be it. Take extra good care of yourself!

  5. I admire you, Kathy for being a good wife to your husband. He is so lucky to have you, despite his imperfections and shortcomings, you are still with him, taking good care of him and praying for him and for your relationship. I think your husband rejects you because he doesn't want to be a burden on you, and he doesn't want you to feel pity for him. I guess, in time, he'll be able to appreciate all the things that you've been doing for him. May you continue to be a strong woman.


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