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.

Tuesday, September 10, 2013

Whatcha doin?

I think I may need to invest in a security system. Not to keep people out, but to keep a certain someone in. This morning at 5AM I found Hubby outside at the end of the walkway. Our dog, Lady aka Elvis to Hubby since he can never remember her name, woke me up whining. Thank goodness for Lady.
No telling how long he was out there but he was pleasantly surprised to see me at "these people's house". I seated him in the wheelchair and we stayed outside close to 15 mins just talking about "these people's house" looks like ours including the old toolbox on the porch. And "will "these people care if we go inside?" I assured his nobody would care. Best part, I wasn't the least bit cranky! It was a miracle morning :D

This is the first time he has actually left the house and I'm most surprised given the weakness he has and the mobility issues. I would have expected this at the start of his Lewy Body dementia journey, not so far into it.

If you've been keeping up you know this is the flip side of the last few days. It's emotionally exhausting. Now I'm concerned about him getting outside and getting hurt without me knowing. UGH! Sonny Boy is giving me some ideas for our home. I have questions and he has suggestions.

Years ago, when we first realized we needed to care for his mother, she was dx with dementia but we knew little to nothing about it. She too made efforts to leave the home and was successful a few times, not far just at the door, before we bought door alarms to alert us she was trying to open the door. Her mobility was fairly good though, she didn't need support assistances to walk and although she was slow she could at times be fast as lightning! Those little door alarms were great.

In other news. Not long after Hubby's diagnosis, Lewy Body had taken my starched and pressed and perfectly quaffed Hubby and stripped him of his desire to maintain his spit polished appearance.  The home dress code is now just underclothing and socks. He is comfy like that and I don't force him to dress.
Yes, there is other news but you need the background for it.
Yesterday Hubby was taking his usual bathroom time, meaning, he has no concept of time so he can just stay in the bathroom for very long stretches of time doing nothing. Eventually I go in to assist with whatever he needs help with. Sometimes just directions on how to get out.
Back to yesterday, I walked in to see what Hubby might need and proceeded to help when he informed me had had just been to someones house. I didn't disagree with him, I just said, "Oh, yeah?" as I helped him get his underclothes on. Apparently, in his mind he travels to lots of places. This could explain his confusion about place. And as I was helping he said "You know, I go to a lot of places without any pants on."
It was everything I had in me to keep from falling over in laughter so I just smiled really big and said, "It's ok. Nobody cares what your wearing." Then I helped him into his wheelchair and settled him in bed.
I sure do love my Hubby!


  1. Kathy, We "met" previously when I discovered your posts a few months ago. Life has continued to "happen" and I've continued to cope on a daily basis often not accomplishing many things I've put on a "to do list" including connecting your blog to mine. I've also not read many of your more recent entries (will correct that asap) as I've continued to find ways to cope with my Mom's advancing or seeming to advance levels of physical and mental challenges. I need to post more often. I need to find forty eight hour days, too, but that doesn't seem to be possible. Really like to "talk" sometime; wish there were ways to gather together a small group of challenged caregivers providing home and facility caregiving across the country struggling to cope with LBD. Both scenerios are similar but each has great differences, too. My Mom is well into Aphasia (that's where she'll converse regularly but then substitute nonwords (combined sounds) believing she's talking using common, ordinary language. Know I should be grateful she can still converse even to some degree because the day will come when she's even more limited or loses that ability. I'm working on restructuring my blog; it helps to see there are times when you only publish once or twice in a month. Keep posting. So many more need the insight our experiences can provide.

    1. Hi Donna,

      In the beginning of my blogging, life has throwing us curves every time we turned around, something new was just around the corner and a new lesson had to be learned. I blogged more frequently about those days. Lately, even though we are still creeping and sometimes tumbling forward, there is less to write about anything new and admittedly, I get overwhelmed with the whole thing sometimes so I shut down and block out.

      If you are a FaceBook user, and I'm sorry if I don't remember this about you, there is a site for LBD caregivers. You might find some real time support there and lots of ideas and resources.

      Good luck finding that 48 hrs ;-) I gave up a long time ago and just started going with the flow LOL!

  2. You are a true angel Kathy :) <3 Crissy #teamkathy

  3. In my opinion you should use personal security alarms, they can help you in much better way, as there are varieties of them available in market, like alarm in key chain, pendant with speech etc.

    1. Hi Sam,

      Thank you for your suggestions.
      With Hubby a personal security alarm would no be feasible as he would not know he needed to use it or remember how should he have a problem. Leaving the house was a choice he made and he did not realize he could have been in any trouble.
      He also does not like to be monitored, who does, right? so I decided to get outside door alarms. It will be easier for Hubby to accept that they are in place for home security instead of his own protection and my peace of mind.
      But again, thank you for the suggestion. I hope others read it and consider if it is a good idea for their loved one.

  4. Have you thought about placing black throw rugs in front of the doors? He may perceive them to be holes and be reluctant to cross them on his own.

    Good luck to you. You're doing a great job and the door alarms are a great option. I like that you can explain it as a home safety issue to him and not make it about him in his mind.

    1. Hi LynsSister,

      Your suggestion is actually one I have heard of before and I've read it can work quite well with Alzheimer patients. The thing with Hubby is that he is still very aware of things around him and is not easily fooled into believing something. Even with his hallucinations he is mostly aware that they can't be real so he would not perceive a black rug as a hole and if he did he would test it first. This is what makes Lewy so very hard to care for.
      Some times I wish he could just forget everything, for his own sake.

      Thank you for your support and encouragement :)

  5. You are the best wife ever. Such an inspiration to us all. I recently admitted my mother for dementia care in Eugene OR and it was one of the hardest things I've ever had to do.


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