Disclaimer

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.

Showing posts with label Galantamine. Show all posts
Showing posts with label Galantamine. Show all posts

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.

Friday, December 4, 2009

For Better or Worse, in Sickness and in Health

Bobby and I have been married for 28 yrs.

We have a large age difference. He is 26 yrs older than I am.

At age 16 his parents signed for him to join the US Navy where he learned to be a gunners mate during the Korean War. Sadly that experience took it's toll on his mind and he has suffered with the effects of PTSD(Post Traumatic Stress Disorder) for very many years. I focused mainly on his anger issues although he had other problems too.

As a result emotional problems have been a regular part of his life. These problems have have taken their toll on many relationships he has had, relationships with spouses (I'm wife #4) children whom have a very detached with him, friends who are actually only acquaintances, jobs he couldn't keep working for others and then he found his nitch in life. CARS. A man with the gift for gab, an endearing personality and charm. He found that he was good, very good at selling used cars. He opened his own business and did this for many many years until his emotional problems caused him to be unable to continue. He closed his business. Such a sad sad day for him.

During our marriage he had been seen by a neuro about a shaking disorder. Nobody ever said definitely what it was.First they thought Parkinsons, then decided it was just an essential tremor then they weren't sure. So he lived with the shaking.

As I said we have dealt with his emotional problems our entire married life but over the last few years things started to take a turn for the worse. He separated from me Sept, 2005. 

 After our separation I had heard these very odd and out of character comments about him. He was thought to have started drinking (he doesn't drink) He was thought to have gotten into a fight due to his bruised and cut face and arms and broken glasses. (with his anger issue anyway it was possible)

After 17 mos we reconciled and he returned home March of 2007.

When we reunited and he returned 2 yrs ago we had such plans to honeymoon and travel. I quit the job
I had and it was going to be our time. The kids were all gone so with no ties we
were free. Oh I was so happy with the prospect of our lives together!

Then just a couple short months later, Lewy obviously crashed down like a hailstorm and there was no where for us to seek shelter.

I had noticed that he shaking was worse and he was having trouble walking and stumbling quite a bit. His speech and train of thought were 'off'. Substituting words, slow response. (Perhaps why he was thought to have been drinking).

He wrecked his truck twice, both times in our own yard.

We saw a neurologist in mid April and started on CARBIDOPA-LEVODOPA. It made him so sick he couldn't even get out of bed some days. He said would rather live with the shaking and I agreed.


Things didn't get better, if anything they got worse. He was "beating me up" at night (Dreaming and acting out) more than usual when he finally did sleep.  He started falling down for no reason. Around that time I took over the driving anytime we went someplace together.

A late Neurology appt  brought a different med for the shaking, CLONAZAPAM.

It was at this exact time my mother was diagnosed with Cancer and died less than 2 weeks later. Everything happened so fast. We had a house full of people coming and going and my attention was totally directed to my mother at that time so sadly I cast Bobby to the wayside. He appeared stable and stayed in his room all the time so that was to my advantage taking care of my mother.

Because of all the hurried activity I didn't tune in to Bobby. Always asking about the people in the house and when they were leaving. What day it was, what time it was etc etc

But after it was over and done and everybody and everything was gone within a few days it got crazy. Falling, forgetting, confused, time and space had no meaning, walking about 'lost', looking for people that weren't there...
I called the neuro and said HELP!

We weaned him off the Clonazepam and saw the Neurologist in August. The Dr said he was thinking one of 2 things. Multi System Atrophy OR Lewy body. At the appointment they did a resting /standing BP check and it was normal. After my research and taking that test into consideration I believed they would say LB.

They started him on GALANTAMINE to help with his confusion and thinking.
I was SOOO happy with this med I could kiss the makers. What a difference it made in his cognition at the time.

Then in Oct 2007 they gave him a diagnosis, Probable Diffuse Lewy Body.
I knew in my heart that would be what they said and yet it was like
someone stole all the breath from me when they did.

I don't know how he felt he has a stone face and he doesn't like to
talk about things. But it must be terrifying.

It felt like the end of the world as we knew it.

WAKE UP!! I think you fell asleep ;-)