Re: Jasper/Looking for some answers

[Guest guest]

Hi Jasper,

Welcome, I'm sorry you have to be here, but this is where you will find the

answers to many of your questions.

You will find that you will connect with some that has similar experiences as

you do.

You stated: " We also see him having what we call " gazing spells " where he stares

straight ahead or his eyes look way up to the ceiling and he is unresponsive for

a period of minutes. "

My husband has seizure like behaviors, he stares as you have described, but he

also has where his body jerks and his head falls back and he stares and is

unresponsive. You did not mention seeing  jerking, so I am not sure if you are

having the same experience. I know there are others experiencing the seizure

like behaviors here.

Here is the LBDA Brochure:

http://www.lewybodydementia.org/docs/LBDAbroch_webLGL.pdf

Under  " Other LBD Symptoms " you will find transient/unexplained unresponsiveness 

and that may be what is happening.

If you are receiving the group posts on your individual e-mail address scroll to

the bottom of this page or any person's post page and you will see: Welcome to

LBD Caregivers. To visit your group on the web, go to:

Click on the highlighted website and you will find in the left margin " Links "

" Files " " Photos " etc. Click on the " Links " and " Files " and you will find a lot

of LBD information for caregivers and LOs  " Loved Ones "  Click on Photos and you

will meet some of the families that are in this group.

Some group terminology:

We call it the LBD Roller Coaster, because you will find a lot of ups and downs.

Many LOs will go down and rally back up. You never really know what to expect.

The cognitive fluctuation of LBD is termed,             " Show Time "  here.

WARNING: If you see  " OT " in any subject line, that means " Off Topic " We have a

tendency to drift off of LBD at times and sometimes we get silly or just chat

about other topics. Living LBD 24/7 can almost drive the caregiver into insanity

and it is a stress reliever to drift off sometimes in another direction. So, if

you are only interested in straight LBD talk getting into an " OT " topic may not

be what you want and a waste of time for you to read, but if you are looking for

a stress reliever, it may be where you want to be.

You have your hands full caring for both parents, you may want to get into an

" OT " conversation sometime, just to relieve some stress. We love to laugh here,

it's the best medicine!

Jan

Looking for some answers

I have been taking care of both of my parents for five years.  My mom has

Alzheimer's and my dad has had Parkinson's for about 18 years.  They are both 87

years old now.  Even though the disease has progressed, my dad has been pretty

good all of these years and all of the doctors always say they are amazed with

how well he has done.  Since the first of the year, we noticed random periods of

confusion, sleeping, blood pressure fluctuations, some hallucinations, etc. 

Then about four weeks ago, in one week, he experienced a significant decline

almost over night.  He was leaning significantly to the left, gazing into space

and slept for two days straight.  The doctors had ruled out UTI, drug

interactions and was finally diagnosed with Lewy body dementia.  So I began

reading and researching more about it and have found your website to be such a

tremendous resource and help.  In these last several weeks, he has fluctuated

from being strong and

coherent one day to weak and excessive sleeping the next day.  However, each

week, he sleeps more - sometimes for three and four days. 

I have two questions.  Is this extreme excessive sleep normal with the LBD or is

something else going on that I should be addressing?  The hallucinations have

also become more frequent.  We also see him having what we call " gazing spells "

where he stares straight ahead or his eyes look way up to the ceiling and he is

unresponsive for a period of minutes.  I wondered if he is having some type of

seizures.  Are these typical with the LBD?  He is sleeping so much now and in

the past several days, for the first time in his life, when he did wake up, is

even too tired to get out of bed.  I am thinking that he is probably close to

passing but am wondering if there is anything or any medication that I should be

trying at this late stage. This all changed so fast and he has declined so

rapidly.

I would appreciate any suggestions or information as soon as possible.  Thank

you all for your time and for your caring. 

     

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