The hidden side of Lewy Body Dementia

The hidden side of Lewy Body Dementia. I am going to try to explain a little bit of what I felt last week when a had a relapse. First of all, I want to thank my sweetheart for helping me through. She was so kind, patient and loving throughout those bad days. What’s interesting is this. Even though I don’t remember much and was confused, inside I was very concerned about Pam and how it was affecting her. It was as though my soul, my personality or the unconscious part of my mind was tuned into the fact that something was not right. I tried to make it easy for her and tried to protect her — but not consciously aware of it. I wouldn’t have been able to verbalize that at the time, but I somehow was able to feel and know this. I am grateful to have experienced this strange phenomena. To all those special and loving caregivers, I think this sends a strong message. Even though you loved one may be demented, confused, out of it, etc., on some level I believe they feel/know something. They just can’t express their love and appreciation the way they used to do with you. They still love you and have special feelings toward you.

June Christensen from the LBDcaregivers group on Yahoo shared the following list on her recent email: “Hospitalization Happens: A Guide to Hospital Visits for Individuals with Memory Loss” I found it to be quite helpful. I saved the pdf file so that Pam can read it. So, take a look at it. Very informative.

Congratulations to Pam in NW PA who was the only person to post the correct answer to the logic puzzle which I blogged on last week. You rock!

Word of the Day for Friday, February 6, 2009

erstwhile \URST-hwahyl\, adjective, adverb; Also used as an adverb, meaning formerly or former. An example would be: “Before I move, I will tell off my erstwhile friends.”

Did you know?   The optimum relative humidity level is generally considered to be between 40% and 50%. Anywhere between 30% and 60% is acceptable, and but a figure below 50% is recommended to help control dust mites which are bad for allergy sufferers.

Blogging to do list:

  • Post on delusions and hallucinations
  • Do book review on “Could it be Dementia
  • Do book review on “Behind the Mask
  • Do book review on “Living with Lewys
  • Reply to Elderly Lady in Training’s comment posted on 1-31-2009
  • Reply to Imogene’s comment posted on 2-5-2009

A great weekend to all!



5 Responses

  1. Good afternoon.

    I have written to you once before to let you know how much I appreciate all that you are doing through this blog. You help me to understand what my father must be going through.

    I found this post to be especially encouraging and I will share it with my mother and sister. Thank you again for sharing your experiences with us, total strangers! You are a brave man and I thank God for you.

    Beth Baldauf

  2. Hello David,

    Wow! Thankyou for the most lovely, extraordinary, wonderful insight to what you felt. So very beautiful…love knows no barriers.

    lots of best wishes

  3. Hello David,

    I hope this info can help. Dad’s case manager who is an Occupational Therapist told me they give all their Parkinsons patients a Kiwi fruit a day to help with constipation. I had a chat with Dad’s dr and he explained how it helps with digestion, to do with the sugars interacting with bacteria. I had never heard of Kiwi fruit helping before but it appears to be helping Dad. When Dad gets bad I’m to give him the Genlac but so far so good.

  4. Dear David,

    You never have to write to me. That was kind of you to make a note to do so, but not to worry. You are a special friend without a single letter.

    The caregiver knows the mate loves them. I have known it all the way through with my husband, even on his bad days.And even when he accusses me of seeing someone else (at 76?) I know that he is scared he’ll loose me. Our love has always been too beautiful for that.

    I still have the quiz right here, and have never gotten back to it. I guess I need to make notes for me. I just seem to be too busy. But, now I have the answers. Hot dog!

    Being severely allergic to Dust Mites, this bit of information has been good to know for many years now. Yet, it is not always easy to control the humidity. Texas is generally dry, except in the Eastern part. Washing the bed clothes in scalding water is very helpful, also. And getting rid of carpeting.

    Be happy, and relaxed, where possible and your love will show through when it’s especially needed at other times.
    Not to worry, Pam knows.

    Love a lot,

  5. David, I’ve seen waht you have described in my mother. Within the past six months, she apologized to me for all that I’ve had to go through. Now, I’ve never complained about anything nor have I ever really spoken to her about the tasks that she can no longer do. It took me back when she apologized. She also continued by adding that it would only get harder. Then, shortly before Christmas, she asked me how she could ever let the care managers know how much she appreciated them. I told her she could just tell them but she just stared at me. I asked if she would like me to help with that and she nodded that she would. I’ve since let all of the care managers know of Mom’s feelings. Last week, after a strong set of tremors in her legs, Mom sighed and leaned toward me to whisper another apology.

    There are times when Mom, upon seeing me, will smile a different smile and reach out to take my face in her hands. That is worth a thousand words and more!

    You are right on with what you write and I am so thankful to read about your first-hand experience. I don’t know if it’s painful for you to go through the process of verbalizing your experiences but please know that it is so helpful to those of us who try to maintain some balance between our fears and our joys.

    Glad you’re feeling better. Best wishes to you and yours.

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