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.

Friday, January 20, 2012

This is all about me.

I'm a caregiver statistic.
I eat poorly,
I haven't seen a medical Dr in 5yrs maybe more,
I don't exercise regularly,
I put my own self care last or completely ignore it until it screams for attention,
I was 4 yrs before I used any respite time that the VA had available. 

I do not suffer from depression, and I try to avoid it in all forms, but I do have some anxiety at times. Especially when significant and sudden downturns come.

I can tell I'm a little snappier in my responses to others.

My mental health is hanging on. For now.
My physical health is another story.

I'm a terrible self motivator.
Just take one look at me and my house and you will see that.

I've tried the home exercise and home hair cuts and home cooked meals.
I use my stability ball as a seat, I think I can rock a pony tail and since I found Schwans home delivered food, well, need I say more there?

I feel bad when I can't stay on course for myself.
I feel bad when I wish for more time away from Hubby so I could do some things I want.
I have learned the value of time. It is a precious commodity when it's in short supply for yourself.
As a 24/7 caregiver all the time is Hubby's except the 8 1/2 weekly hrs I get through the V.A. for an aide.
in this 8 1/2 hrs errands must be run groceries must be purchased, travel to and from must be included and where we live its a 20 min trip one way to our largest store, etc etc. I must find a way to fit in all the things I HAVE to do and still find some time for me in there. Occasionally I get a lunch with a family member or friend. Hurriedly of course but I still do it. Think about the expression, Eat and Run :)

Now this all sounds mighty whiny of me. But that isn't my intent here.
I am very blessed to have this time.
I know what it's like to have none, especially when the VA doesn't renew Hubbys Aide service for a month! breathe in, exhale slowly ahh

Available family have filled in for important things and run errands if I ask, so again, I appreciate the knowledge I can call when I have to.

But I don't like being a statistic. It's happening though and I can tell.
I thought of all the ways I could prevent it. I started doing small things, walking/jogging in the driveway.
A dual trip to the eye dr, Hubby was there so I squeezed in too.
Much needed dental work. (Remember the neglected self care and screaming, almost losing a front tooth due to neglect is a screaming issue ).
And just the other day, after much consideration and serious thought, lots of praying, mostly consisting of please let me find a way!, Weighing all the odds and planning the timing more than once, it occurred to me, I can start working out again! The gym I was once a member of had relocated several months ago. Their new location is ideal for me and my errand needs. Grocery store, drugstore and place to get my oil changed all within a stones throw! I am SO EXCITED!
Today was my first day back in 4 yrs! I was able to get my workout in AND pop in at the grocery store (right next door) with time enough to get home and not feel like I was running through myself :) it was a glorious feeling.
A funny thing happened at the store, I grabbed a cart, made a quick run through produce, went up the soup aisle rounded a corner and BAM wobbly legs got me and my knees buckled. LOL! I didn't fall down and was able to upright myself in plenty of, save myself from embarrassment, time. Good thing for shopping carts! I thought it was funny and I can't wait to get back to my workout Mon!

Now if a hairdresser would move in close by...


  1. So happy to see that you are starting to take care of YOU. It was my biggest challenge when my mom was here 24/7.

    Kudos for your efforts!

  2. You said it so well for us caregivers. I have been one for three years and it is so easy for others to say, "Take care of yourself," and so hard for us to do that.

    Thanks for this post, Kathy, and here's to hairdressers who will make home visits like doctors used to.

  3. Oh Kathy thanks for visiting my blog and leaving such a kind comment! :) And yes girl you must take care of your self....too bad we don't live closer we could help each other out, and scream a lot together too!! LOL
    I work hard to get that workout in also, it gives me more energy to live with this disease. Don't know what I will do when hubs needs more care....but that worry is for another day!! :)


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