Sunday, January 29, 2017

Thought: Does it make sense for a LBD patient and the spouse to live together?

Think for a moment.  I have Lewy Body Dementia.  I suffer from "Sundowning" and my evenings are difficult at best.  I try VERY HARD to keep an even keel for my Wife.  She does not understand what I a going through, even though I have tried to expelling things and she has scanned clinical information related to my disease from LBDA.Org.  So, as the sun goes down, we are on a different plain with different expectations.

I understand that she cannot possibly understand how noise, projects, personal demands, budget issues, and many other normal life matters negatively impact me.  She also cannot understand how hard I try to stay calm, and unexcited for HER well being.   Of course, all of this makes my life worse.

So, as I sit here, trying not to get upset by the morons on "Finding Bigfoot", and it cross my mind, maybe it is impossible for two people, one without Dementia and the other without Dementia, to live together.  Also, it may be a very bad idea for a spouse or other close relative to be a Dementia patient's caregiver.  Because the are NOT trained to care for us and they want us to be normal again.  They also want us to live forever, and that is not going to happen either.   But, the Wife, Husband, Child, wants their Husband, Wife, Father, to be normal and there always.   That emotion is normal, but not rational and not comforting to the Dementia patient.  At least, not to me.

And everything in my life has changed!  I am unable to have sex, drive, do simple tasks like math or budgets.  I get exhausted doing things I used to do all day and all night.  Everyday requires a nap.  The things I watched and did for intertwinement and recreation are now either too upsetting or beyond my capabilities.  The things I was interested in, passionate about, are now uninteresting because I KNOW I will never do them again.  All that I was is gone, dead, and I am a captive of LBD.

I am completely overloaded with frustration and anger.  I feel unimportant, not listened too, and ignored.  I also feel like a burden.  Because I have LBD, I do not meet anyone else's expectations.  And, to make me meet their expectations, they beat me with their reality!   Do this, look at this, what is your opinion on this future issue!  The temperature is too hot, now it is too cold!  Truthfully,  I don't care!  Just deal with it.

No, I believe, based on how I feel, that living in a Memory Support Facility would be better for me and also for my Wife.  The shock initially, would be emotional and traumatic.  And, since we just moved to this one bedroom apartment to reduce our cost of living, we have to live here one year before either of us moves to a higher level of care to keep that reduced cost.  So, I will stay in the apartment, trying to keep my emotions in check, and trying to pretend to be as normal as I can.

Remember, I try to write true emotions and to record the actual impact of this disease in this blog.  This is as real as I can get.  Don't hold it against me, just try to understand it.


  1. I get it. and I'm sure you're getting through to many others!

  2. I understand what you are saying and find your thoughts on this subject to be very interesting as the toll on our wife's is enormous you raise some very valid question. I would like to know if you or your readers are suffering from restless leg syndrome it is just starting for me I am also having the feeling in the evening of wanting to run I expierence hallucinations at least three times a week and find that I am staring at things more during the day and feeling exhausted more then usual I know these are symptoms of LBD but mine are getting worse and it is very troubling just wondering how others are dealing with these issues

  3. Yes John; very common. Some folks have more hallucinations and vivid dreams with Aricept (donepezil) but I have the opposite reaction. I have much less hallucinations & vivid dreams with Aricept -- but MORE restless legs. My restless legs are VERY responsive to multiple meds; most make them worse. Are you on FaceBook, John ? -- Tru

    1. No but i have an email at