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, January 5, 2013

Kat in a bag

Somebody dropped a young cat off in Sister in law's neighborhood.
It found it's way to her home and to her dogs food and decided to take up residence.
SIL, not being a cat person, needed to get rid of Cat so she called me, Cat Lady, and I agreed to take the cat if it could be caught.
A few days later Brother In Law shows up at the house, bright and early wearing gloves and carrying a pillow case with, 
you guessed it, 
Cat inside.
We decided to put the pillow case down next to the cat food and open it.
Sure enough as soon as that pillow case was opened, Cat jumped out, straight up a wall, across a window screen, off the porch and shot across the yard into the woods.
I think the cat was black.

I called and called for it throughout the day, hoping it would come back or I would see a glimpse of it.
I finally gave up, hoping Cat would come back to the food once it settled down.
A couple of days later it did. Very nervous but hey, if your life started out as a drop off then a pillow case trap and dump, you would be nervous too!
It's been a few weeks since then, it finally settled in to a box I set up for it and food. It's even friendly enough that I can pet it and lately it will run up to me for attention. Every now and then it will try to get inside the house. I think it likes it's new home and we are all adjusting.

You're saying to yourself, “This has NOTHING to do with caregiving, Kathy!”
Ahhh, but read on my dear friend and you will see.

Yesterday Hubby had a Mental Health Dr appointment. The appointment I've been dreading because Hubby had decided he wanted to talk to Dr about placement.
Over the last few weeks Hubby's desire to leave has increased. He even decided to stop taking ALL of his meds. Just like that. So he did.
I can hear some of you gasping, but think for a moment, what is is REALLY going to do that's worse than dementia?
I didn't fuss or insist. The inner struggle to hold on had to loosen it's grip. It is such a very difficult thing to do.

Some of the meds he takes such as Depakote relieved his anxiety and anger issues he experienced as a result of his PTSD. Since stopping I haven't noticed an increase with those issues any more than what he was already experiencing before stopping. I know there is nothing physically he can do to anyone or himself and I can walk away when the hurtful words come.

The Galantamine he was prescribed when he was diagnosed with his Lewy Body did such a wonderful job at the beginning that I wanted to kiss the makers. I saw such a positive change in Hubby's cognition and as time went on, the dosage was increased to it's max and although I was not seeing any positive's from continuing that med, I was afraid to have it stopped because I saw what it did and was worried about where he would be without it. Apparently it was no longer effective because I have not noticed any sudden(?)different declines in cognition.

I said in an earlier post that Hubby and I have had some serious talks and we have cried separately and together over some of the things he is experiencing.
Because of these emotional breakdowns I was able to talk Hubby into taking his antidepressant to help him feel a little more stable. He agreed. Because of the pain he experiences in his back and neck he also agreed to take his pain meds. I said there was no reason for him to suffer with pain.

At the Dr appointment Hubby mentioned that he felt a little more shaky. Part of his LewyBody symptoms is shaking. When asked he said he thought more about death and dying and he had no thoughts about how to make things better. When I was asked how he was I explained about the meds stopping and how Hubby had been angry and sad and how he wanted to leave even if it meant placement. Hubby agreed.
The pillow case was opened,
I think my brain exploded and leaked out of my eyes so I wont be able to tell exactly what all conversation was said.
I was asked if I had spoken to the Social worker. I jumped out of the pillow case, straight up a wall, across the window screen and porch and off into the woods, just like Cat. I shook my head, I can't talk to her.
MH Dr was so supportive. He said the same things I did, Nothing was permanent. If you voluntarily check in you can check out. Lets just get the info we need to make an informed decision. There is no right or wrong with these decisions. We are doing the best we can and it's smart to think ahead.
He said all the things I have said to myself and in support of others. But I wasn't coming out of the woods.

We all agreed that it was okay to have stopped the meds if that is what Hubby wanted but he was keeping them active in case Hubby changed his mind about them.
Side note: I LOVE my team! Always having Hubby's best interests at heart.
MH Dr. offered to have the social worker call us to get the info we would need for placement should we choose to go through with it.

So, right now, there the food sits on the porch and I'm waiting in the woods, just like Cat. Afraid to move and hiding out.

We all think we know exactly what we will do in any given circumstance but until you are actually faced with it, we just do not know how we will react. Right now as long as I don't have to think about it too much all is well. But in those still quiet moments, or when Hubby is having a moment those feelings rush in and overtake my heart. I keep reminding myself that my plans are not God's plans. He has a bigger and better plan for me and for Hubby. I need to trust Him and follow keeping my eyes on Jesus and not on the storm. It looks like a pretty big storm brewin. So I'm in prayer that the Spirit calms my heart and clears my head so I can walk out of the woods, like Cat. 
I know when I do I'll find a warm box and a bowl of food. 
Just not today though.


  1. Oh Kathy,
    You put your stuggles so well. I know my tough days are coming with my husband's Alzheimer's, and it sounds like you have great support and options for the future. Your husband is willing to talk about it. Thank you so much for being able to write this today.
    Hugs and prayers,

  2. Discovering your husband's post and now yours ... cannot tell you how much it means. Today marks the exact second year of my husband's passing -- not LBD but complications from MRSA (it's referred to as the "flesh eating" disease, a form of Staph). Too long, too detailed; too many complications and so many twists and turns. I'm ready to start blogging and will check out more of yours and those you've found helpful. Let's skip forward because I feel I must share what I've learned. PLEASE, please go yourself to every facility near where you live where you both might consider "placement". Not meaning to be so personal but care is expensive, you really need to know a lot more than a Social Worker will tell you. Sadly, most Social Workers (imagine yours is through the State you live in?) may not even be licensed or accredited but are given that "job title" in many states. Even the best intentioned SW's usually do not continue on with patients once they enter a "facility" because each facility has their own SW or more than one. And, please do not accept remarks at face value, especially about getting out once you "get in". Consider home help vs a facility. Consider Day Care. Consider any and all other options. Unless you can afford the best care, the facility with the lowest patient/caregiver ratio and one that has won awards for their Dementia Care Programs, it's not as "easy" as it seems. I know. I've been through it for almost two years with my Mother who lived with our family for almost four decades so the same challenges and feelings you're experiencing with your Hubby have been my feelings with my Mom. My Mom was diagnosed with mid to late stage LBD almost a year ago. Your husband sounds like he's still in mid stage; LBD is not an easy journey for the person diagnosed or the family. Sounds like more than anything he's aware of what's happening and wants you to have relief from the everyday challenges of LBD and thinks by going into a facility now you'll get them. For me, my Mom's diagnosis and all we went through has been another level of grief and personal challenges with facilities that simply do not understand nor provide service for LBD patients -- it's getting better and I'm actively involved in educating ours but it's still a daily challenge. Above all, talk to others about options; people who live with LBD and other forms of Dementia. State Areas on Aging can be helpful but as with other life experiences, those in the know are those on the frontline who have travelled a little farther down the road you're experiencing. When I do my blog, I'll write about the dog we took in while all of this was going on -- and we have a cat! Know you'll find the answers because you're looking for them.

    1. Kathy,
      I just want to add that I agree with Donna...look into home care or adult day care. I know every situation is different and we all have our paths to follow... But from my husband's experiences being in two different rehab/nursing homes last summer, I know that even highly rated nursing homes are miserable places for anyone with any lucidity.
      I hope this helps.
      Thinking of you and sending hugs...

  3. Oh, Kat, oh, I mean, Cat, oh, I mean, well you know. I can relate to running up a wall and out into the woods. Just get away! I'm praying for you and know the Lord will strengthen you for whatever He desires for you and Hubby.

  4. Stumbled across this blog today - I guess too late because my uncle just died from LBD(pneumonia) on Sunday. He only had four years since his diagnosis.... and he was only 65. I hadn't even heard of these meds you mention - I don't think he was offered any treatment at all. LBD is definitely a thief and a cheat and just so damn unfair. thanks for your blog... thanks for sharing.

  5. Oh hoping, hoping for peace and calm heart for you both. Come out of the woods and venture inside...a bit....

  6. I found you at caregiving.com. I'm compiling a list of caregiving blogs and wondered if you would like to add your name and url to it. You can find the page at http://www.ifeelsounnecessary.com/p/caregiving-blogs-link-exchange.html

    Lisa Renea DuVal of I Feel So Unnecessary


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