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.

Saturday, January 1, 2011


I bet I've tried to update this blog a hundred times. There seemed nothing to say.
Life has just run it's downhill course and I didn't want to capture it forever in the negative thinking I have had lately.

Some days I have wanted to run screaming.
Remember the expression, if you have nothing nice to say...?
Of course I don't always follow that rule, like now.

I feel like somewhere along the way I lost my direction and my focus. Perhaps it's just this time of year.
Whatever it is I do hope it passes soon. I don't like feeling this way.

2010 is ending. Many have celebrations planned and many are staying home. LOTS of well wishers for the new year to come have expressed their thoughts and yet mine are seeped in a blank feeling.
I feel like there is no hope for a happy new year.
I know that the year will only bring with it more sadness, frustration and more confusion. Harder times, physically and mentally. I know that the new year holds no hope in it for Hubby.

I decided to do a comparison/review of Lewy at the end of our 3rd year of battle

2yr Ago:  None; able to do all Activities of Daily Living (ADL) independently
1yr Ago: Can function with supervision and some assistance
Today: Hubby is able to cooperate some and has a little mobility, but needs constant assistance 

2 yr ago: Varying levels of intelligibility and clarity
1 yr Ago: Gets lost in thought frequently, forgets what he was going to say or incorporates something non relevant he heard or saw into his conversation
Today: Gets lost in thought most of the time. Difficult to make sense of his communications

2 yr ago: Completely independent
1 Yr Ago:  Needs minor assistance food cut up more finger foods and things easily swallowed through a straw. His shaking is so bad that trying to keep things on a spoon or fork is terribly frustrating to him. He eats a lot of hamburgers (hand held) and Malt o Meal (through a wide straw)
Today:  Has a few swallowing issues. Unable to feed self once but still attempts to be independent with finger foods, items cut up and thinned cereals he can drink through a straw. No more Hamburgers but biscuits and gravy were a staple here for a while. He eats less meals though due to difficult eating issues I believe.

2 yrs Ago: Knows self, others, time, location although time and space
have no meaning
1 Yr Ago: Has regular lapses of knowing self, others, time location He knows
Me as caregiver. He does not remember what my relationship is to him though :(
He does not recognize our home as his but he has one just like this one somewhere else.
More and more of us are leaving his memory. Makes me think of that digital camera commercial where the pics are all huddled together and someone has to be deleted to make room for a new one.
Today:  Not much change in what, just in who. An old friend stopped in to relay sad news about the passing of another. Hubby had no idea who he was or who he was talking about that passed away.
Time of day is completely gone, morning could be night and vice versa even if the sun is shining or it is pitch dark.

2 Yr Ago: Periods of depressio & infrequent periods of fear/anxiety
1 Yr Ago: Regular periods of depression and anxiety. Resents not being able to drive anymore.
Thinks it's my fault.
Today: After a period of angry outbursts, Hubby now has periods of grief about perceived losses

2 Yr Ago: REM sleep disorder most nights.
1yr Ago: Same. Thrashes and hits.
Today: Same Poor bed table and lamp #1

 How much HELP do I think I need to provide adequate care for my spouse?
2 Yr Ago: As of today we are holding our own
1 Yr Ago:  He needs 24 hr care as he is a fall risk and too confused to be left alone.
Today: He needs 24 hr care and supervision due to falling issues and confusion

How many days each week are you the SOLE CAREGIVER?
2 Yr ago: All of them
1 yr Ago: I have home health that comes 2 hrs a day Mon-Fri so I can run to town and his aide gives him a bath.
Today: I have a health aide that comes 10 hrs a week. The rest of the time I am sole caregiver.

How often do you feel that you do not have the help you need?
2 yr Ago:  never
1 yr Ago: regularly
Today: regularly

 Are there others I can call upon when I need more help?
2 yrs ago: yes---easily available
1 Yr Ago: yes, but difficult to get anymore
Today: same

Quality of my sleep
2 Yr Ago: Frequent interruptions.
1 yr ago: frequent interruptions that I am used to. I have found that I delay going to bed for as long as possible and getting up early. I'm not sure why I started doing that.
Today: frequent interruptions I am used to but not well rested even though I try to nap

 Do I get enough exercise for health and stress control?
2 yr ago: yes, always
1 yr ago: NO I do not take the time to exercise for my health and stress. I had to
quit my gym so I just stopped doing anything and it's telling on me.
Today: I don't even think about it and I don't want to talk about it.

 How much emotional stamina do you have?
2 Yr ago: a lot
1 yr Ago: seems like I have a lot, but easily rattled by the unexpected my emotions can sit right behind my eyeballs.
Today: Not enough I fear, You can ask how I am and my answer will be fine, but please don't ask how I really am.

 What are my main worries?
2 yr ago: Actually difficult to answer because I'm a one day at a timer
1 yr ago: One day at a time hasn't changed but I have added a concern about personal health, if I get ill who will care for my loved one. Health of my spouse; Heaven forbid he get sick and run a fever!
Effect of illness on the well-being of children, other family members.
Today: Same concerns with the addition of Hubby's loneliness.

What do I do to comfort self, for restoration?
2 yrs Ago:I joined a fitness club and attend 5 days a week
1 yr Ago: I had to quit the club because Hubby could not be left alone any longer and the time constraints were killing me. I became a facebook junkie and have actually had more contact with my far away family and my church family because of it.
Once a month we hosted our Church Youth Group for food and fellowship. I really enjoyed that.
Today: I had to cancel our Youth Group gatherings due to Hubby's unpredictable behaviors.
I seem to have lost much interest in anything.

 What percentage of my life is organized around your spouse's health?

How much of your life is lived with LITTLE consideration of LBD?


  1. Thank you for posting this post, it helps put perspective around the decline caused by LBD.

    My mom is similar to Hubby. She is about a year behind. I do not look forward to the new year for similar reasons that you outlined.

    God help us. I pray for us to have strength, we absolutely need it. I hope we can both exercise again, it seems to help with stress better than anything. However, it's stressful thinking about starting and HOW we will commit to ourselves... I will pray.

  2. I pray for strength also Sue:)

    On the exercise part I SO agree with you that even thinking about starting is stressful but I've started a hundred times. It just takes me a few weeks to recover from the first day then I can start again ;-)

  3. Hi Kathy. I just found your blog. My father has LBD. It's very interesting reading. My thoughts are with you. x


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