Monday, March 6, 2017

The impacts of LBD; Part Two

I may be selfish and self-centered.  It is hard not to be when you are suffering from any incurable, progressive, life ending, disease like LBD.  Yes, the end can come slowly, but it IS coming.   And sooner than it would have if I did not have LBD; at least in theory.

I also know family and friends have their own lives.  Their jobs, families, hobbies, children, and home maintenance, to name just a few things that keep them from visiting and calling.   My Navy career took up the majority of my life from 1969 to 2010.   I neglected my family, son, parents, other relatives, and friends to do what the Navy needed me to do.  I volunteered for the tough assignments, rode deploying ships,  worked late to make sure my equipment worked, and avoided anything that looked like easy jobs. So, I do understand their position.

Just the same, I feel abandoned and neglected much of the time.  Are these feelings valid on my part?  I guess that depends on which side of the issue you are on.  I do not expect or deserve 24/7/365 care, visitation, and coddling.   But, once in a while would be welcomed.

So, that is the end of my self-centered complaining for the moment.  LBD IS a lonely disease.  And I have written before that I believe living in Assisted Living is better for the spouse of the Dementia patient because she would get the good times with me and I could be alone, in the care of the professionals, when I am being difficult.  But, she has to bee there to share the good ties or my theory is wrong.  I believe she will be.


  1. Don, What is the long term living arrangement for Linda after Assisted Living is no longer needed? Will she be able to stay there or will she have to move? It wasn't something that my husband and I did so I am just curious.

  2. Kathy, thanks for all of your support and encouragement. Linda can sty in Independent Living or move to Assisted Living with me. The new "Memory Support" area will be JUST for the Dementia patients. No spouses. So, she can stay in Independent or what ever level of care she needs. She has "Life Care" also.

  3. Sounds like she too will be cared for too :)
    I sad to know you feel so isolated. I too understand that, of course not from the perspective of the one with LBD but as the spouse. Oh I would have given anything for my husband to have received visitors and not be so lonely. There was only so much I could do and I know he tired of me.

    1. My husband not only has LBD but suffered 2 strokes 4 years ago. He also spent our married life immersed in his professional interests. He didn't even attended our children's graduations. He had no interest in his or my exstended families. He is a kind, living person who just focused on his own interest.

      The interesting thing is that now when family or family friends visit, he just as bored by them as he was when he was well. The many young people he spent his life teaching and mentoring have no time for him. Yes, he wants visitors but just a certain kind and they have moved on.