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.

Wednesday, May 12, 2010


I'm not a regular, as in daily, blogger.
Mostly because I don't think what I have to say is really that important.
Some days things here are quite uneventful so why share that?

I try to save up for the big things or at least interesting to me things.

Caregivers go about their lives doing what needs to be done daily with little to no self acknowledgment that what they do is actually worth talking about. That is until we reach a certain point and it's usually a snapping one. We have the deep desire and need to vent. Much like a lidded boiling pot.
Venting is good for our emotional well being.

I use blogging as my place to "verbalize" my feelings and thoughts. It helps me keep them sorted and re reading them at times opens my eyes to some negative thinking paths I wish not to take. My feelings and thoughts are honest and I hope most of them are of benefit to others struggling to cope and questioning their aloneness. You are not alone.

So today I think about caregivers while Hubby sleeps.

Because I am limited to what I can and can not do or when I can and can not go, social interaction with others is rare. My Online Support Spousal Group is my life line to in coping in the Lewy body world.

I've also come across other caregivers at various blogs that I have wrapped my heart around. Those caring for family members themselves, parents, grandparents, extended family.
Or family members of someone receiving care, sons, daughters, siblings, extended family.

I love how they make me laugh and think, educate and encourage me and at times I cry for and with them. Virtual strangers with a common thread of caregiving. These are precious people.

I am astounded by all the hard work they put into caregiving. Their dedication and steadfastness. Their heart and soul.
Some, many, most I would like to wrap up in my arms and say, You are not alone. I see and or feel your pain, frustration, loneliness. You are doing the best you can and doing a great job. You are important.
So a virtual hug and prayers will have to suffice. It's good to be acknowledged for our efforts.

1 comment:

  1. It's hard to be an everyday blogger with all that happens in life and as you said in the post about the bounce house, Lewy controls your schedule in big ways.

    I think your blog is more important than you know. Care giving is hard work and more people need to know that so they can help care for the caregivers. Your honesty and transparency helps to open eyes and it helps other caregivers know that it is okay to struggle with this calling. It isn't easy, the feelings and frustrations can overwhelm, but having people understand is important. And, as you said before, there are always those beacons of light in the midst of it.



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