Wrapped Up
Dec 11 2012 in Caring for Spouses by Kathy
Over the last couple of months I feel like, no, I have been wrapped up in my own little personal emotional bubble.
Why do I do that? I’m not really sure. Perhaps it feels like a safe place to protect my heart and mind while I sort through the jumbled mess looking for solutions.
Hubby is dealing with some strong emotions from his Lewy Body Dementia his own self so as we sort through these together and separate I’m finding it difficult to blog about at this time.
gasp! I KNOW! Normally I’m an “everything out there no holds barred” kinda gal.
But this latest Lewy Body Roller Coaster ride is leaving us feeling some motion sickness.
I always know where to go for the support I need. I feel like we have a good team with Hubby’s Drs and I feel secure in knowing if I need them they are willing to work with me and Hubby to give him a better quality life. But the majority of my support comes from on line sources that I am so very grateful for. Besides my FaceBook family and friends, I have a Lewy Body spousal support group, a place I can find valuable information from spouses that live with, care for and love those suffering with Lewy body Dementia,
There are FaceBook dementia groups where we can give and take in real time.
I know my adopted caregiving.com family is there for whatever I need.
I have prayer warriors and well wishers and virtual huggers.
I cherish you all and I have no problems asking for the support I need. Yet at this time I’m not sure exactly what kind of support I need. I think what I need is less “Oh, I’m so sorry”, and more ideas, or solution, and lots of, I’m praying. I like the support that makes me feel like a stronger caregiver when I’m at my very weakest. Support that builds me emotionally, allows me to vent and cry then hands me a tissue and picks me up. Sometimes even snatches me up by the collar, shakes me a bit and sets me back down. That feels like support. That feels strong. That feels like love.
The sorrys make me feel unstable and not strengthened.
So I suppose I’m hiding from the sorrys these days because my emotions are sitting right behind my eyes and under my skin, ready to collapse and I need to get a grip on those.
So until then we’re making do the best we can and know how. One day at a time and seeking the smiles.
One BIG smile was very evident the other day.
I was given the gift of clarity from Hubby.
He and I were grazing in the kitchen. He sat down and started a serious conversation with me about dementia.
We talk openly and honestly about it, no secrets or hushed tones about his Lewy Body. He didn’t cause it and he can’t help it, there is no shame. We talked on and off for quite a while.
After a long silence he asked me a question about something earlier in the day.
I said; “I don’t remember”,
to which he replied, “Honey, are you getting dementia?”
Then he smiled and cut his hazel blue eyes at me!!
ROFLOL!!!!!
That my friends was a beautiful gift all wrapped up with a nice bow 
roaringmouse said on December 11, 2012
Kathy, You are feeling perfectly normal! Sometimes…”sorry” is what we need. Sometimes..the words, “what can I do to help?” are better or “I’m right here for whatever you decide you need.”
They are few and far…aren’t they.
So if you ever want to chat, I’m here…yes…even at 12:30am as I had one friend recently take me up on a “cup of coffee”.
The Roaring Mouse
Kaye Swain said on December 11, 2012
Oh Kathy, those seconds of “normalcy” are so precious, aren’t they. By the by, have you ever seen the site, A Psychiatrist with Lewy Body Dementia – http://knittingdoc.wordpress.com/ – sadly the writer had to quit writing over a year ago due to the progression of his Lewy Body Dementia. But his site is still up and continues to be a valuable resource. Have a lovely time at the Caregiving Holiday Progressive Blog Party.
Denise said on December 12, 2012
Hi Kathy, I think when times are intense, it can be natural to want to lick our wounds, so to speak. And, when the emotions seem overwhelming, we may simply prefer to keep to ourselves rather than take the risk of being pitied. For me, when it seems too much, I do prefer to find a quiet corner.
I think you are wise and insightful and know just what you need. And, know we’re go just where you need us to. We’ll go to the corner with you, even if we make it too cramped and crowed.
Your sun is rising. I see its rays shining on your home.
ejourneys said on December 12, 2012
Hi, Kathy — I identify strongly with that need to withdraw so that I can get centered. I know what it’s like to be unable to articulate things and all I want to do is something mindless that doesn’t require thinking on my part. Being “out there” also means that we are vulnerable, and being vulnerable takes strength. Sometimes we just need to rebuild our strength first.
I like to compare it to weightlifting. When done right, it tears the muscle a bit. The muscle then needs to rest so that the body can repair it, but those repairs then make the muscle stronger.
I love the gift from Hubby! And I love the absence of shame. That’s a “biggie” that my partner is working on with respect to her MS.