“Should I shower?”

June 28, 2016 § Leave a comment

"The Night Of"Tonight, with my loved one sitting tightly at my side on the sofa, we watched HBO’s “The Night Of” episode one in a series.  I cringe seeing blood even when it’s on television. The actors roles are lonely young people, stoned and drinking Tequila while playing a game with a 5″ chef’s knife.  I am riveted to the screen and when something bad happens, I shrink into the softness and protection of the sofa cushions.  My loved one, says “Should I shower?”

Dementia has stolen the pleasure he used to have watching the screen.  He sees figures talking and moving but cannot figure out what is going on, being said even when I pause the action and try to explain.  Words have no meaning,  no story line, no fantasy, no fiction.   There is only present time without reflection or commentary going on in his head. He is motivated, driven by focusing on what to do next.  A shower cannot be delayed when he has determined that he is no longer content to be with me holding my hand.  Cuddle time always ends suddenly, surprised by his abrupt departure. I’m going to shower he tells me.

Cruising, Day 6, St. John, New Brunswick

June 25, 2016 § Leave a comment

 

Cruising was a wonderful way to celebrate turning a calendar page. It was fun sharing my birthday with 15 friends from the Insight Memory Care Center.  This is where my loved one spends three days/week fully occupied and engaged in social activities and loving balloon volleyball the most. And since everyone knows that he loves dancing, occasionally he is the dance partner to many.

This is the first birthday that my sweet and considerate husband did not give me a card, usually on the dining table long before breakfast. Sad, another ritual, no more. Dementia takes my loved one away when I need him to celebrate.  I think, please, can I have my husband back for a little while?  Who is this rigid, nervous figure beside me, yearning to visit a rest room every 15 minutes? He’s not thinking about anything else when it’s time to go.

How do you like my towel cake? The next morning, when we returned to our cabin after breakfast, the cake was gone. Our steward said that his supervisor would be missing those towels! Glad I took my pictures right away.

 

 

Repositioning – on a recent cruise

June 25, 2016 § Leave a comment

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Back in our cabin, the steward had made a ‘lobster’ towel wearing MY sunglasses. I could not let go of the photo op. I said “quick, put your face next to the sunglasses and I’ll put mine on the other side.” The look of incredulity was worth the effort of trying to explain that you put your belly down first and then your face next to the towel.  Even without dementia, this was pretty off-the-wall!  It looked more than a swim dive onto the bed, struggling not to knock the glasses off of the towel, laughing all the while I had to switch from an iphone to an ipad to take these pictures.  I should have made a video!

coloring together at the local library

June 23, 2016 § Leave a comment

Owl _SA      My sweet husband earned a chocolate chip cookie at the adult coloring monthly event at our local library.  For more than an hour, he toiled over this page looking up only to change colors and to ask where to color next.  His attention was so focused that I was sure it was fun for him. Fun is hard work with lots of effort put forth.

This is his beautiful work.  No longer able to read or write his name (most of the time) he can color!  We used Derwent Inktense Pencils which are water soluble and when wet, colors are intensified but be wary, the page must be wettable without tearing.

Happy Fatters Day

June 22, 2016 § 2 Comments

image      I asked my loving husband to read aloud a fathers day card that had just arrived. He read happy fatters day (in pale text).  “Is it a joke?” he asked.

There are no jokes with dementia, words have lost their meaning and only confusion endures.  I had reminded him that his special day was coming.

My explanation had no meaning so he didn’t remember.   Father’s Day, oh yeah. So sad.

 

 

What is cereal?

June 22, 2016 § Leave a comment

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Over the past few years my husband changed what  he was eating with cereal because grapes required being able to count he thought and eating a whole banana was simpler. I tried to explain that sliced almonds and grapes are better fiber choices with whole grain toast too.

I made a big sign on the kitchen island declaring bananas off-limit for breakfast time and hid the bananas. It threw him for a loop when he looked at the empty bowl, asking what is cereal?

Success came quickly, less than a half hour after breakfast, elimination time!  I wanted to tie a balloon on the light post but of course, he was unimpressed and calmly went about his day.

 

 

 

 

 

 

Love and a caregiver’s journey

June 22, 2016 § 4 Comments

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We are 72 and have been married for ten years.  I have know my husband since 2002, 14 years so far.  I was always fiercely independent and after a brief marriage in my 20s, I never gave marriage much thought while enjoying a wonderful career, 33 years in New York and 22 years in Los Angeles.  He is the love of my life.  And he has dementia.

Slowly my sweet husband is declining into darkness, a place where there is only uncertainty, indecision and confusion. This blog will record my struggle and our adventures, some humorous, to comfort and provide a safe place for my husband to live and simultaneously (the real challenge), express my spirit creatively.

In 2011, my husband finally retired after 37 years of government work.  The daily commute from Virginia into DC was exhausting with little time to rest. He was determined to work past 67, his Dad’s retirement age.  His six month performance reviews were trending downward towards average from exceptional.  The dementia was already in progress, we know this in hindsight.

Diagnosed two years later with moderate stage dementia in 2013 and no ability to do arithmetic or critical thinking. Whoosh, gone. Just like that.

I figure that we are five years into a debilitating decline.  I have hardly done any artwork since the diagnosis.

I am the sole caregiver and I am paying for his care with all the love in my heart.  This is my choice and he could not ask because to inquire one needs rational thinking and he has none.

At the semimonthly caregivers group today I learned the difference between loving someone with dementia or a terminal illness.  The seriously ill can tell you what hurts and when one drug or treatment makes them feel better than another.   They have some days that are better than others.  I ask the same questions when my husband comes home from day care as I did when it was work such as how was your day, what was lunch or snacks, did you like the activities and then I listen closely as he tries to share a few words so I can string them together to form a thought.  I’m not good at this and unlike charades, there is little body language to offer clues. We hug, tells me he loves me and asks what’s to eat.

 

 

 

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