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REM sleeping disorders or “I am dreaming there is an intruder”

February 24, 2014

This morning began as have several in the past year. Whap! Wow! No, I am not in the midst of a superhero movie!  I am awakened by a sharp slap across my chest this morning.  I immediately shout “Stop hitting me!” My dear hubby says “I am dreaming! There is a bearded intruder on the deck and I saw him out the bedroom window”. Strange that he knows he has been in the midst of a vivid dream. I try and stop him from getting out of bed, but he gets slowly up and shuffles to the large window beside our window seat and pulls up the shade.  The drop from our window to the ground below where our walk out basement is located must be 12 or more feet.  There is no deck access or deck near our bedroom. He knows this, yet he feels obligated due to the life-like quality of the dream to look out the very window “where he saw the intruder”.   These episodes are becoming more frequent.  My sleep is more frequently interrupted and his is as well.  What to do? I don’t want to sleep in another room.  I want to hear him if he needs me…twin beds?…..I suppose a possibility….but the intimacy of a gentle pat or caress are more difficult in twin beds….bedsides then he would have two sides to fall out of!  More clonazepam?  I hate to see him take more of this drug and be more groggy the next day.  We have a sleep study “assessment” scheduled in a few weeks to see if he would be a suitable candidate for the study.  I wonder what it could possibly gain us?  I sleep with him every night.  I can tell you how Mr. Lewy, the dark and sinister hitchhiker visits nearly every night.  He brings with him an absolutely amazing bag of tricks he reserves for the darkest of the night or an early morning wake-up call.  Jerking, kicks, moans, muscle cramps, verbal shouts, slaps, punches and worse yet, sometimes Mr. Lewy even throws dear hubby out of the bed!  Good thing we have made his side of his bed a “safe zone”… nightstand…no sharp corners…..nothing to injure my darling when the hitchhiker makes him “go bump in the night.”

It has been a long, snowy winter.  I need spring to arrive early this year instead of enduring a prolonged winter.  I have been trying to eat healthy, exercise with hubby, enjoy the beauty of the landscape out my house of many windows.  I have listened to more music, counted my blessings, burned more scented candles, played with my grandchildren, concentrated on the good things in my life. I have taken my anti-depressants, shared my sadness with others. I have discussed frankly with hubby, my daughters, my siblings and a support group the course of this disease and it’s effect on him and ultimately on me. I have continued my battle to try and hold off the dark and evil hitchhiker whose hands with long nailed fingers grab onto our train. More often lately despite my resolve, I feel sadness as I recognize the consistency of symptoms our hitchhiker brings in his bag of tricks.  Short time memory issues are beginning to be more prevalent for hubby…following a movie or television show he enjoys has become more difficult. Setting the table is more difficult once again.  He asks me more questions about things he has known in the past.  I am more and more uneasy leaving him alone even for a short period of time.  The hitchhiker may lead me to believe this is going to be a great day which is nearly symptom free only to interject a period of confusion on hubby when I least expect it. The Aricept and Namenda seem to ward off the symptoms less effectively.

I ask those who believe in a higher being of any sort to pray for me and for hubby.  No, don’t pray for healing….please pray that we can continue to keep our shared sadness from invading every corner of life.  Please pray that this bumpy, journey can be traveled with moments of boundless joy by both of us.  Pray that those who do not understand our journey will somehow be enlightened.  Pray that we can travel this journey with grace and thankfulness for our blessings.  Please pray that I take my own advice to heart.  Pray that I continue to choose to be “OK” and that I stop and smell the roses for a moment each day.  Pray that I continue to recognize the special relationships I have been gifted with in my life….my dear hubby and my dear children and their families. Few people are graced with these type of relationship and I am indeed blessed to have them.  Pray that I never let bitterness invade my soul. I believe that bitterness is the ingredient that always leaves an unwanted spot on your soul and a taste you can never rid yourself of.  For above all other things, I truly believe in my heart of hearts that this is my purpose in life…to lovingly and gracefully care for this dear man who is needs me to gently usher and guide him along this journey.  I have the knowledge, I have the desire, I have the love….and I know with God’s help I will have the strength I need to ride along on this unwanted journey with the love of my life.

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  1. Hannah Baldwin permalink

    This shared sadness is a strange bond. But one that thickens the ties and strengthens the knots. I pray for you both continuously. That joy will outshine Mr. Lewy’s attempts. On the hard days, sleepless nights, and rude awakenings, I pray for God’s comfort to guide you and for you to always know He is with you. I love you both dearly!

    • Thank you sweetheart. Shared sadness is a strange bond….I know you pray for us and I appreciate it more than you know. Love…..

  2. Debbie permalink

    Praying for you and Gary. Our situation has pretty much stayed the same. Dad has a lot of nights that he wakes up, and keeps “the man” up too, as this is what he calls his son now, because he can’t remember his name. I usually am called “Mam”. I was able to spend a few days and observe his decline. This certainly isn’t what we would choose, but under the circumstances it is the only right choice. Just like you have to make the choice to smell the roses, so am I…but I’m waiting to smell those spring violets…lol. I think that the dementia is worse for me to observe, than seeing the physical decline that is taking place. It definitely is hard watching this happen to someone you love. All we can do is stand beside them, and go forward. You are helping so many people by sharing your story. Thank-You.

  3. Susan Mazique permalink

    Pray for you both each day. Spring will show soon one of these days, flowers, leaves, river flowing by SUNSHINE!!

    • You know your prayers mean the world to us. The advent of sustained sun and no snow just seems so incredibly far off……and I am so tired…..

  4. Laura Ferrizz permalink

    It is with understanding, prayers and love that I enter a comment in your blog. I am a resident of Allegria and a friend of Marilou M . She shared this blog with me about a month ago and I have read it from the beginning. I too am living a journey with a man I have loved since we were 16&17. We are 64&63 . Bob has been fighting an unwanted visitor we call “The Alien” Although his road with cancer is somewhat different than yourhusbands, the outlook is similar. I read your words and I know I too travel down a very different road then the one I couldn’t have imagined in my wildest dreams and I have.been doing this for eight years. There is really much I can share, but at this moment I feel compelled to say, in spite of very trying times, and watching your beloved morph into a different version of the man you have loved for so long, there are still beautiful moments, and yes, a deeper understanding of each other than you have already known. Yes I too pray. And I pray not for a cure, (although I would love it) but for courage to follow this road with my Bob wherever it is still taking us. Weep when you need to, love and treasure family and friends, strive for a deeper faith each day, and please know there is joy as the “trip” continues. You will do things you never thought yourself capable of and think about life and God more than you ever did. And you your great big heart will go on. Just a few words, deeply felt , from a friend you never got to meet here in Alegria,

    Laura Ferrizz

    • So sorry we didn’t meet in Alegria I am doing things I never thought I would be doing ,but I am so blessed with assistance from our girls and their spouses that the burden is not too great. I think the most difficult thing is the “unknown”. We know what life expectancy with this disease is but how long he will be immobile and nonverbal we do not know. That is what tortures him, I think. In the meantime, I believe this care is my calling and I was meant to be his because I can do this with the help of the Great I Am.

  5. cath copeland permalink

    my daughter sent me this link and i just want to thank you. your words are my life at the moment and you expressed my sentiments so beautifully. my lovely man of almost 50 years was diagnosed with possible alzheimer’s almost four years ago and it seems more and more that it is turning out to be lewy bodies. your article really helped to put into words my fears and hopes. i really pray that you can maintain your faith and confidence in the difficult times to come. God bless

  6. So glad that your daughter share this with you Cathy. As I told someone else, I truly think this place in the world and my caregiving has been what God intended for me. I am thankful for the opportunity to help my husband travel this road, although sometimes the fear of the unknown is daunting. Thank you for reading and responding.

  7. Praying daily for your strength both physical and mental.

    One thing I used to do was sleep with 2 pillows when REM sleep took over. I used one as a body protector or head cover. Nothing worse than having a rude awakening and realizing, now is not the time to retaliate.

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