Lewy Body – Robin Williams

My husband has what Robin Williams had Lewy Body Dementia & Parkinsonism.

I recently found an article that Robin Williams wife wrote for the “Official Journal of the American Academy of Neurology.”

The Dr.  had diagnosed Parkinson’s while Robin Williams was alive but could never figure out why the hallucinations and dementia type symptoms. Finding the answer only after Robin Williamshis death, when the autopsy was performed.

I am lucky that we found such good doctors right way – my husband was diagnosed properly, we may not be to stop it the Lewy Body Dementia or Parkinson’s, but I knew from the beginning what we were dealing with.

I am posting a portion of the article here and link to the whole article. The following paragraph describes my husband exactly. The whole article will help explain Lewy Body Dementia.

The Terrorist Inside my Husband’s Brain

Susan Schneider Williams, BFA

Robin was growing weary. The parkinsonian mask was ever present and his voice was weakened. His left hand tremor was continuous now and he had a slow, shuffling gait. He hated that he could not find the words he wanted in conversations. He would thrash at night and still had terrible insomnia. At times, he would find himself stuck in a frozen stance, unable to move, and frustrated when he came out of it. He was beginning to have trouble with visual and spatial abilities in the way of judging distance and depth. His loss of basic reasoning just added to his growing confusion.

Full Article

Resources

 

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Communicating with a Loved One who has Dementia

Communicating with someone who has dementia is not easy – I have learned a lot  this last week.

My husband, brother and I went to my social worker last week. I just love Theresa;
she is so knowledgeable and precisely knows how to talk with my husband.

She gave us some tips on communicating with people who have dementia. I have learned a lot from the hand-out she supplied us. . I have watched  my husband’s Dementiafamily when we are around and they act like my husband is not even in the room – so upsetting. Talk about him and around him like he is invisible

People who are suffering from this illness need validation – it is so important that you are listening and understand. It can decrease the intensity of the conflicts and is good for your relationship.

How to validate:

  1. Make eye contact with them, actively listen – nod your head when they talk to you.
  2. State their feelings descriptively without passing judgement “ it looks like your upset” or “you have a sad look on your face”
  3. Respond in a way that takes them seriously – if they want to be alone for a little while say “OK,” walk away and let them calm down, if they are crying, give them a tissue, etc.
  4. Show tolerance and patience: Their behavior makes sense to them given his or her life circumstances, even if you do not approve of the behavior itself.

The next post will be about the six levels of validation. I hope this help you in coping with anyone in your life who does have dementia…

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High School Reunion.

Something as simple as going to my high school reunion is close to impossible…

My life is getting extremely difficult, I am just totally burned out, and this care taker job is not for the faint of heart. To find someone to sit or be with my husband is so hard it’s like pulling teeth.

My 40th high school reunion (boy am I old!) took place last weekend.  I wanted to go but I had to piece together people to take care of my husband and I only was able to go for a few hours.

I was so angry when his brother told me he would take him to church but then pawned it off on his sister who is already telling me she cannot help Reunion Thoughtsbecause she is too old, not feeling good etc.… You think it she said it.

From 4 in the afternoon until 8:30 he was with 3 people – all in his family but who really seem reluctant to help in any way. I feel I forced it on them – I wouldn’t take no for an answer.  You would think that someone would just help take care of him for that many hours.

The actual festivities started on a Friday and ended Sunday afternoon. I was only able to go for the dinner on Saturday afternoon.

The reunion was really fun – I took my brother, and the best part was a tall handsome man came up to me (I didn’t recognize him or remember him) and said you are so pretty Pamela, can I give you a hug.

Of course – I said, and then he proceeded to tell me how he was totally enamored with me in high school and thought I was so pretty. He was too insecure to ask me out. He was my secret admirer. We chatted for a while and then I had to leave.

I couldn’t help but entertain the thought – if he did ask me out my life may have been completely different. I had so many struggles with the choices I made as a teenager, and my life was not easy…

I left the reunion feeling pretty good about myself – but wondering how my life may have been different.

 

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