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Mr. Lewy Visits like a Whirlwind!

October 16, 2014

I have noticed in the past weeks that there have been subtle changes occurring with hubby. Word finding continues to be an issue and night terrors and REM sleep disturbances are more pronounced. One of the more troubling symptoms of Lewy Body Dementia is changes in consciousness. My hubby had never actually lost consciousness, although he has been troubled with light headedness from time to time and it is clear that his cognition varies from day to day for no apparent reason and based on stress. This past weekend we had a lovely time. Our daughter and her husband who live near by drove us to meet our youngest daughter and husband in Lacrosse. We stayed in a nice suite, visited some great restaurants and vineyards and just generally had a wonderful time enjoying the fall colors and the company of our daughters and their husbands. We got home in the early afternoon Sunday with time to rest and enjoy the remainder of the day and slept well Sunday night.

Monday morning seemed like every other Monday. I got up early as our 3 year old granddaughter comes on Monday and goes from our house to preschool. Hubby got up a bit later and seemed cheerful and pretty asymptomatic in terms of unusual symptoms. Of course he was a little confused and had some word finding issues, but nothing unusual. Hubby and I had breakfast and I was cleaning up the kitchen when I heard the chimes on the backdoor signal that he had gone into the garage. I assumed he had gone to place the paper in the recycling bin. A moment or two later I hear a thud. Hmmmm….did he drop something? I wait a moment to see if I hear anything else and then go to the door and open it. Yikes! He is lying “face planted” on the concrete floor of the garage at the bottom of three steps with his head surround by a pool of blood. His breathing is labored and sounds like a gurgle. I run to check on him and he is clearly not conscious. I think he is dying. I turn his head to the side so he isn’t inhaling blood and run for my phone calling 911. I also call one of our good young friends who is a school principal at a school a couple blocks away and he is there before EMS. Hubby begins to gain consciousness, but he has a hugely swollen eye and good size laceration above his eye.

EMS takes him off to the hospital and our friend takes me and also contacts my daughter and tells her to meet us there. Hubby’s consciousness and orientation seemed good when we got to the ER. A CAT scan of the head and neck show no “head injury” but numerous fractures of the orbit, sinus etc. The ER Doctor wants to keep him, but hubby wants to come home and I think we can manage. He is sutured, given pain meds and antibiotics and off we go. Our son-in-law makes us homemade chicken noodle soup. Things seem pretty smooth. The next two days are difficult, however. Cognition is markedly changed. Hubby is not doing well following any directions. He is in pain, restless, confused. I know that Lewy Body is exacerbated by trauma, infection and stress and we see that first hand. Text book perfect! I fear that he won’t “snap” out of it. That he has passed a threshold that there is no way back across. Miraculously he wakes up Wednesday morning and is quite cognizant of what is going on. He has regained some strength, walks better, seems in less pain. We visit the facial surgeon who confirms “too many cracks and breaks to count including the sinus” but suggests conservative treatment with follow-up. A list of “don’t” and “do” and off we go with a follow-up in 4 weeks. Hubby has a good evening and sleeps well.

This morning he has another episode of syncopy. He does not fall, but feels very faint and must hold on to the dresser and lay his head on the dresser to keep from falling. Strangely he then becomes much more confused. He tries to help set the table, but cannot follow any directions. He looks restless, more tremors than usual, can’t seem to tell me if anything hurts. I take him to the couch and he sits while I turn on the golf channel. Always a favorite. He seems to improve a bit, but he asks me if it is Saturday (it is Thursday). We talk about what is going on and his cognition seems to improve. I talk with him about not going outside when I am gone or without telling me. I am putting a sign on the doors. Our doors chime when opened so if I am at home, I will hear them if he opens a door. I have a locked gate on the basement steps which reminds him not to go downstairs without me. For the first time, I realize that the need for help may be just around the corner. It is probably not safe to leave him alone at all….but it is apparently not safe when I am here!

Mr. Lewy, the dark and sinister hitchhiker seems to have decided to visit with greater vengeance. He may have a stopped just taking brief outings with us and he may have settled in for the duration. Is this the marked change I have been dreading? Lord give me the wisdom to do what is right for both of us and for my family. Keep me strong, help me make rationale decisions, continue to help me find joy in the small things in life. Help me be cheerful and loving to the man who has given me the best years of my life and gave me our brilliant and beautiful youngest daughter. Help me travel this journey with grace. Remind me to accept help when it is offered, to continue to take care of myself and to take time to enjoy those people in my life that mean so much to me.

For the readers of this blog, once again I implore you to take a moment and enjoy the small pleasures of life. The smell of coffee or good wine, the scent of a candle, the beauty of the earth, the hand of a child in yours. The touch of your spouse, your friend, your child or your parent. If you are a believer, pray…if not meditate. Calm your mind, so that you can think clearly. I once again say with conviction that I choose to be OK….but now I qualify that to include that I will be OK with the help of God and my family and friends. This journey will be challenging and rocky, to be sure.

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  1. Nancy Thurow permalink

    My prayers continue for both of you. Please take care of yourself! Most of all I pray for the happy moments you can steal from mr lb and the solace of your wonderful times together.

  2. Cookie Watson permalink

    So sorry for his fall and decline. My husband had his first fall this week also, but, thank God, no damage, just sore. I do stay with him 24/7, and it is very difficult. I had a major meltdown this week, but, now, back in the saddle, so to speak.

    My prayers are with you and your husband. I hope the healing process goes well on his face. I know it was a rude awakening for you. We can not hold their hand every minute–just do the very best we can to be vigilant and caring.

    I, too, have noticed considerable changes in my husband–speech, actions, just a general slow down of all processes, including urinating and bowel movements. If this is what fall brings, then, I do not like fall and certainly do not look forward to the dark, dreary days of winter and being shut in.

    The small things in life and the blessings we each still have, will continue to give our days meaning.

    Take care. Hang in there!

  3. Hi Cookie….we have had a few falls but no fractures and no loss of real consciousness before. He has deteriorated significantly lately. It breaks my heart. I may need to bring in help at night….first episode of urinary incontinence last night. So confused, embarrassed, sad. My heart feels so heavy. I feel that darkness of the disease closing in although I try to keep both of us focused on the good things in our life and the small joys,

  4. Sonja and Dave Wilson permalink

    I just finished reading the last paragraph you wrote out loud to Dave. It is so hard to really take that in. I admire your attitude and strength. Please know that we appreciate all your updates and keep you in our thoughts and prayers.
    Sonja and Dave Wilson

    • Thanks for your kind words and for your prayers. It is an extremely difficult road we are traveling. My heart breaks for Gary every day. It is hard for me but it is so much worse for him. He knows that he is deteriorating and it’s impact on our lives. Poor sweetheart.

  5. My thoughts are with you and your family. My Dad also has falls, a bad one last March. It is such a terrible illness for everybody. He is also getting worse, awful to see. Our pleasure in life is our 1 year old Grandson. He brings a smile to everyones face.
    Be strong xx

    • I am being as strong as I can! So frightening to see someone you love and have devoted your life to being so helpless and ill…..but in the end things will be OK. I am convinced.

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