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.

Monday, August 22, 2011

***Angry, me this time but not what you think***

A call to the Dr this morning leaves me with an anxious heart.

Dr tells me that he and staff believe Hubby is in the beginning of end stages of his Lewy Body Dementia and recommended placement.
I was a little taken back by that.
In my mind Hubby needs to be bed bound in the end stages.
Unable to communicate and needs fed.
In my eyes, this is what end stage looks like.

But I suppose end stages start somewhere.

I've chewed these words all day.
I am not ready to hear this.
I am not ready to surrender.
My heart says I may not win the war but I can win the current battle.
Perhaps it's the fighter in me?
Perhaps it's my own superwoman complex?

I have seen & read where other caregivers were at the end of their ropes dealing with difficult combative behaviors, be they  physical or verbal from family members.
My heart ached for them as they struggled to hang on one more day. I prayed for the peace of not only them but their caree.
There were times I questioned, to myself, if they held on too long before placement.
Their own health seemed to be fading and their peace of mind was slipping away.

I remember the decision we had to make concerning my MIL when she had to be placed.
And I remember the reasons we made it.
All logical and in her best interest.

I've wondered all day, am I not seeing something others are?
Did Dr rush to a solution?

His points were valid and I acknowledge them.
One concern was that Hubby "may" get agitated enough to want to cause me injury but hurting himself in the process.
Dr was right, if that happened I would feel terribly guilty if Hubby fell and broke a bone because he was mad at me.
We never know what a person with dementia is capable of.

He thought it would be better for placement while Hubby could still make the adjustment with lesser distress.

My mind is racing and my heart is screaming NO!
I am not ready, not now.

I'm angry.
I'm angry because even though I thought I was, I am not emotionally prepared to deal with this thought.
I am angry because I can't find a way around the anxiety without feeling like I am jeopardizing Hubby's condition and making it worse.
I'm angry because Lewy caught me off guard and left me rattled.
But I'm most angry because I allowed myself to be swept up in the feeling all day and evening.
 A complete waste of a day.

The good things about days end, is another is on the way.
Today I may be shaken, but I'm not going down.


  1. Dear Kathy... I know your pain.

    The toughest decision that I had to make was placing my mom in a facility. Like you, I've read accounts from other Carers regarding their loved ones in facilities. The stories are frightening.

    It was exhausting, as I'm sure you remember from reading my blog posts. The stress was killing me and keeping me physically ill. I had to honor my own life, it was just as important as my mom's.

    I had mom on wait lists, I still do. I visited nursing facilities, I did my research. Unfortunately, homes that are highly rated have long waits that seem unattainable.

    At the end of my rope, I googled and found my mom's current home. I didn't check it out as well as I did other facilities. It wasn't on my radar for potential homes.

    I felt that I had made a mistake but I also knew that I couldn't care for my mom by myself at night for another minute.

    People always told me that I'd know when the time was right. I knew months ago. I waited and waited for a bed to open in one of the homes that I had found for her. I called and pleaded for help. None came.

    I cried a lot.

    I prayed even more.

    My prayers were answered. I found a bed for my mom, even if it was in a home that wasn't very good.

    I visit. I visit a lot. I observe. I help my mom as much as I can to take the strain off the aides so that they can have time to help mom's new friends.

    It's time consuming, visiting the home for 4-8 hours a day. Typically, I split it into two visits, morning and night.

    I walk with my mom. It helps her agitation. I bring her food from home. I bake her special gluten free treats that are low glycemic. She loves them. I bring in ice cream. I have a fan club.

    Mom never asks to come home. Having people around her all the time is helpful. My daily visits helped her adjust very well.

    I am finally able to think. I have time for me, to do things that bring me peace. For the first time in a few years, I am able to work in my garden. Most important to me is that I have time for my husband.

    I had doctor's tell me that Mom needed to be in a home. It did shake my world, like it had shaken yours. No one wants to put anyone in a nursing home, but sometimes we have no other alternative.

    I cope with my decision by visiting my mom every day. It seems not to make a difference where she's living as long as she sees my face everyday.

    It's different with my Mom in a facility. I do worry, I can't help it when I've seen stuff going on while I am at the home. I use my mouth. I speak up. Mom's care is getting a little better. She has friends which makes me happy for her.

  2. To Susan: Having spent over 2 1/2 years in a nursing home myself (between November 2002 and July 2005), I am very glad you are there daily with your mother. Knowing that there is someone there regularly watching out for her is the best thing you can do to ensure the best care for her in that circumstances. I hope at some point a bed in one of the nursing homes you preferred will open up and you can move her.

    To Kathy: I am very sorry that you got this shock. The doctor made good points and you need to consider them but you also need to listen to your heart. You will be in pain every day if you feel you were pressured to place your husband before it was necessary. Make your preparations and watch the situation carefully and trust yourself to know when (for his safety and your own) you need to make changes.

    *sends best wishes to both of you*


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