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We took Mr. Lewy on vacation…..because he wouldn’t stay home alone!

April 8, 2014

Despite some fears and mental reservations, we decided to go on vacation for a week in Florida. We found that we were longing for  warm temperatures and sunshine after such a cold, dreary, snowy winter.  Knowing we couldn’t travel a long distance alone, we enlisted the help of our daughter, Sarah and her husband Michael and with them their three little ones ages 8 down to almost 3.  Flying first class nonstop made the flight painless, having our son-in-law driving the rental van and our daughter navigating kept that stress to a minimum.  The three grandchildren kept the mood pretty cheerful and excited.  We had hoped going to a very familiar resort in a familiar locale would keep our stress at a minimum and we hoped Mr. Lewy would miss his flight!  After all, this was a low stress trip….maybe he would stay sleeping in Wisconsin until we returned.

The resort (The Don CeSar) on the sugar white beaches of the Gulf of Mexico makes spoiling their guests a priority.  Whether ambling on the beach or lying by the pool or sitting in a lounge, the staff are constantly there to make your stay pleasant. So how did hubby do?  Were we able to sneak off and leave Mr. Lewy home?  Nope.  He was very much present during the entire vacation.  He maintained his hold on hubby’s balance… fact hubby stumbled and stubbed his toe (actually toes, plural) and they are presently a lovely shade of lavender. He also showed himself during moments of stress…like ordering dinner.  Suddenly the word finding problems would be so evident….hubby couldn’t get a word out!  We had a toilet overflow emergency where the bathroom suddenly had about 3 inches of standing water on the floor and it was flowing into our room and the hall due to Mr. Lewy.  But the staff of the hotel took it all in stride coming up at 9:30  PM and doing clean-up with a cheerful attitude.  I could tell that even with every need my hubby had being fulfilled by someone else, the difference in routine gave Mr. Lewy just the opening he needed to latch on tightly and dig his long nails in tightly.

All that being said, we had a wonderful time in a great resort with the perfect amount of time alone and time with the grandchildren and their parents.  Yes, hubby was more disoriented for a day or so after we got home.  He had some problems remembering how we had gotten to the airport to begin our trip.  But the warmth of the sun and watching our little grandchildren play in the pool and ocean made it worth the expense and hassle, according to hubby. 

Will we go again?  I can’t say.  We saw our movement neurologist and our neuro-psychiatrist today.  They confirmed that hubby needed to try increasing his Namenda dosage as we have not seen the cognitive improvement we had hoped for. Both physicians are anxious to see the results of hubby’s sleep study in May due to the multitude of REM sleep disorders that hubby is having.  But did they think going on a low stress vacation was a good idea? Absolutely!  No traveling alone, they reminded us.  We can not risk having hubby in a strange environment away from family should I become ill or otherwise incapacitated.  Will we go on vacation again?  I can not say either yes or no with authority.  It depends on how hubby feels physically and how he is doing cognitively.  This may well have been our last vacation. If it was our final vacation, we are grateful that we were able to take it with each other and with our daughter and her family. It we decide to try another trip, we know that either one daughter or the other and their husbands would be happy to accompany us.  If we believe another vacation would be detrimental to hubby we will not go, but we will enjoy wonderful memories of this trip.  

If I am honest with myself, I knew Mr. Lewy would be with us.  He is ever present in our lives, but he does not totally control us.  We still enjoy friends, family and each other.  Mr. Lewy does limit our activities when he is on a rampage, but even then we can find the joy in life.  Because whether life is beginning or ending, there is joy to be found.  We find joy in the smell of flowers, the touch of a child, a hug or kind touch, a special note from someone who cares, the feeling of sun and the breeze on our face and the knowledge that a greater power guides and protects us.  Our faith in God and our love for each other sustains us.  We choose to find joy in this life no matter what it may bring and we continue to make lemonade with the lemons (and lives) we have been given.  Wishing each of you the joy of a life well lived….from beginning to end.


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  1. Wendy Pesce permalink


    • Thank you, Wendy. I appreciate you taking the time to read and comment.

      • Wendy Pesce permalink

        My mom was just diagnosed a few months ago. It is such a hard/scary thing to accept and deal with. It helps to hear others stories and know you aren’t alone. Thank you for sharing.

  2. It is frightening….I agree. Seeing our entire retirement change has been very difficult.

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