Personal Stories of Triumph, Pain and Everything In-between…

Lewy Body

I should have been posting articles; it has been a long time since I have. It almost seems that even though I quit my job, I am busier than ever and to walk upstairs to my office is too much. Ridiculous I know. My emotions are like a roller coaster, and sometime I feel like I am bi-polar.

As my husband slips deeper into his illness there are limited things he can do. He is having a very hard time walking so he is immobile. We have a routine; he usually sleeps late and when the CNA comes we wake him up, and I help her take him to the shower. With the help of both of us, we can get him into the shower; I have bought handles, so he can grab on and feel safe when he is stepping in but he is still full of fear that he is going  to fall. It is quite an ordeal to get him to sit in the shower chair – once in a while he will refuse but most of the times we get him to sit.

Once he is showered shaved and cleaned up, he is helped into the front room/ kitchen area eats takes his medicine, and if I am lucky, he will take Bi-polarit without incidence sometimes he starts chewing getting confused about the difference between swallowing and chewing.  I feed him if he just doesn’t seem to want to eat himself. I put on the TV even though I don’t think he can really understand it – sometimes he will talk back to the people on the TV. I also have cards I will give him, and if he is in the mood, he will play with them. When he is not in the mood for that he will want to finish his paperwork for his business, so I give him a red bag, and he will pull out papers and write on them gibberish. But to him – he is being productive.

He stays up around five hours, and then he is tired and wants to lie down. He wants me beside him and many times when I am not in the bedroom with him; he calls for me. He is in his hospital bed, and I will sit by him and hold hands, climb into bed with him or just lay on my bed beside him. We have a enormous TV on our wall that we watch. He will talk and chatter telling me things I cannot make out but I pretend to understand.

He is getting so skinny that it worries me. He is 5’10 when he was healthy he weighed 180 lbs. Now he is down to 140 as skinny as he is you would think that lifting his legs and helping him would be easier, but it isn’t his legs are like dead weight; I have hurt myself numerous times trying to help him. He just cannot move himself even when I help him into bed; I have to situate his body so that he isn’t crooked.

I have knots in my stomach – and I feel lost.  I have never had to be alone like this before.

I want my husband back…

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It is Christmas day, and I must say a really sad one.

I kissed my husband on the cheek and said Merry Christmas – knowing he probably doesn’t even know it is Christmas.

We had a family party at my daughters, and I loved seeing all my grand-kids but as Aziz sat on the recliner with a blank look in his face, it was heart Sad, God, Christmasbreaking; I just couldn’t feel joy.

I am so thankful for my family for being there for me. My brother came over and drove the van to the family party that was 1 ½ away and drove home. It was very emotionally exhausting, and yesterday I didn’t even want any company at all. I slept until I had to get up and get my husband dressed – around 11.

Usually, I get up several hours earlier so I can clean up, get dressed and ready for the day before I get him up. Getting him up has gotten harder and harder because he doesn’t know how to stand up – he pulls back instead of going forward. Usually, I get him up and put him on the seat of the walker, take him to the bathroom, so he can swish, and brush his teeth but sadly. Sometimes he forgets how to swish or brush his teeth.

I feel this is the last Christmas I will have my husband and I cannot help but feel like crying. I think the fact that my sister committed suicide on Christmas Eve doesn’t help even if it was 35 years ago. It never goes away.

I just have to believe there is a reason and leave it in God’s hands – but boy is it hard.

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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

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