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Your situation hasn’t changed or Mr. Lewy has fooled me briefly.

July 20, 2014

I like to think I am not only intelligent, well educated and naturally curious, but that my judgment is good. I have and I continue to read everything I can about Lewy Body Dementia until I feel like a walking encyclopedia. I believe that know all there is to know (ha!) and I have a clinical background which makes me more at ease with the medical community and more of a natural patient advocate.

Late June and early July brought visitors and with that came a sense of thankfulness that we had children, sister and young friends who visit and celebrate with us. I found hubby to be pretty easily stressed, but he dealt with it fairly well. I was feeling well and had been thinking of starting to wean myself off from my anti-depressant, so I took the plunge and began with taking just 1/2 my normal dose for a couple of days and then stopped altogether. What did I find? That the realization of my life in the future overwhelmed me. I cried about things that I would usually let go. Because hubby was under some extra stress, he was uncharacteristically critical and sharp with me. I was devastated. I sobbed and sobbed some more. But I didn’t resume my anti-depressants. The visitors left in stages. I cried uncontrollably when both daughters left….one who was only going on vacation…the other one who left for her home over 6 hours away and I felt like my heart was breaking. OK, I need to get a grip and manage to function without constantly weeping despite an inner sadness that hung over me like a dark fog.

Fast forward a few days. Everyone is gone. The house is empty. It is our 27th anniversary. We awakened and talk about our wedding day and the places we visited on our drive up the coast line of California on our honeymoon. I begin to weep again. I am totally out of control weeping. I cry, I get momentary control and then I sob again. OK, I tell myself. Count your blessings. Stop wallowing in self-pity. I know I am fortunate. I have 3 children who love us both and who will step up and do anything we need within their means. My hubby is still ambulatory and able to do a fair amount of his ADL independently. I have financial security and we have good and compassionate health care. We live in a beautiful home which has been modified to be handicap friendly. I have nothing to weep about.

I have counted my blessing and then despite my best intentions. my mind wanders to what I not longer have. The hot tears flow fast and furiously. Yes, I have the man I have loved with all my heart for the last 27 years, but I have almost no friends. Dementia does not invite people to be friendly and inclusive. Many people choose not to stay in touch and it is harder for me to stay in touch. I no longer have peace of mind, I am afraid every time I leave the house that he will run into a problem. I caution him not to do anything silly while I am gone. Don’t change any light bulbs, don’t climb any ladders, don’t go down to the river. Don’t use any power tools. Don’t worry if you screw up the TV….I will straighten it out when I get home. I no longer have a place in the community volunteering because hubby is not at a point that he needs a formal sitter, but I am uneasy leaving him too long. I no longer have a close-knit church family. Worship is about all we can manage. We are no longer part of social groups or study groups. I no longer have a partner that can share the burdens of life or the joys. He seems to be so much less engaged emotionally. Sometimes he seems present, but absent at the same time. Starring at the TV or at nothing at all, mouth open….where is he? I no longer have my winter home because traveling is too stressful for hubby and I am fearful of being away from our health care providers and my daughter who lives close to us. What would hubby do if I was taken seriously ill? If I am finding this life difficult, what will I do when things deteriorate? Everything seems dark and overcast. Oh, my gosh….I don’t know if I can do this! I hyperventilate,I pray, I read, I sob at the slightest provocation. I am sobbing so much that all three of my children are concerned. They are calling and texting each other. Strangely, hubby doesn’t seem particularly distressed or concerned with my weeping. I think, to be honest, that emotionally his disease consumes so much of his energy that he has difficulty seeing past his own situation. I haven’t confided in him or my children that I stopped my anti-depressant and honestly, I hadn’t connected my crying jags with the change in my medicine regime. Dah! My youngest daughter calls….I sob…for some reason I say, “well I went off my anti-depressants.” My daughter is appalled and asks if I consulted my physician. Of course I hadn’t. “I am strong, I can do this,” I sob. “Mother!” she admonishes me sternly, “What has changed in your life has since last summer? How has your burden lessened?”, she asks. Suddenly I feel like the child and my grown children feel like my parents. They see clearly what I cannot see. I do need to resume my anti-depressant. I probably need to get back into counseling and I need to see my primary care doctor for a check up. We do need to set up at least a few hours of supervised care for hubby in the fall when our son-in-law returns to teaching. Hubby needs to accept a stranger in the house and I need the freedom to go out without constant worry.

I have resumed my anti-depressant and feel both foolish and much better. Appointments are made to see my doctor and discuss resuming my counselor. Mr. Lewy Body, the dark and sinister hitchhiker on our train of life, had fooled me. I can hear Mr. Lewy’s low chuckle of glee. He had managed to lull me into a false sense of complacency. He tried to convince me that this isn’t so bad….I can do it all myself. I believed him for a moment. Long enough to go off my medication. But now I see it was just his way of knocking me over and reminding me that he has more control over our lives than I had ever thought. Despite my efforts he is with us for the long haul. I am a woman who believed she could do anything she set her mind to and I have been put in my place. Mr. Lewy torments hubby with vivid and frightening dreams, with an inability to do tasks that are multi-step and with the need for a once proud and brilliant man to ask for help putting on his pajamas. Torment if you must, Mr. Lewy Body! I acknowledge that am not strong enough to defeat you, but with help I am strong enough to manage you. I will continue to make choices in life which bring me opportunities for joy. I will choose to do what I can and accept help where I need it. I close with a grateful heart. I am thankful for my faith in God and his awesome love of all of us, whether we are strong or weak. Thankful that I have raised children who care about us and are now at times wiser than I. Such good and kind hearts they have and what strong and devoted husbands my daughters have married! It is a consolation beyond measure that I know they are here for us. I am thankful that dear hubby loves me truly and with his whole heart. Thankful that young friends like Hannah and Andrew, Amy and Andy and Josh and Lindsey keep us in their prayers and do not hesitate to say “we pray for you”. So once again, I bear my heart and soul for you. I hope that reading this somehow changes your day. That you either find strength you needed or compassion
you sought and that above all, you take time to spend with those you love. For life is brief and a simple moment in the sands of time. Love one another,for the fruit of the spirit is love, joy and peace. Peace to you all.

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  1. Wendy Pesce permalink

    You are so inspiring. I read each post, shaking my head in agreement, crying, smiling, empathizing. Although it is my mother and not a spouse, I feel your pain and know your struggles. I appreciate you sharing with others and vocalizing how we all feel and are affected by this disease.
    Thank you for heart felt and sincere .words

    • Yes, this is not an easy journey for any of matter what our relationship to our loved one. Glad you enjoy reading my posts. Thank you for your support.

  2. Cheryl Parker permalink

    MJ, once again you have moved me to tears – tears of empathy, tears of sadness, tears of gratitude for how you so eloquently put into words the experiences we all face with Lewy.
    The Lewy journey is different for each of us, yet so similar. My heart goes out to you today and you are always in my prayers, as are all of our brothers and sisters living the Lewy life. Thank you and may you find blessings in this day. xxx

  3. Thank you for following and for taking time to comment. It is a long and difficult journey. I am surprised sometimes. I foolishly thought I was invincible. Not so. Hugs….

  4. Susan Mazique permalink

    Thanks goodness for Kate. So glad she asked the question.. Stay on the meds, see the Dr., get some help;. This is a long struggle and you need of the help you can get. We are all here for you but use those helpers too!!. DO I need to start making nursing rounds on you!!!

    • I know sis. No, you don’t need to make nursing rounds. I will be OK….I am better today than yesterday. There is really nothing you can do at this point but be available to listen. Day at a time. It will be a long haul.

  5. Hannah permalink

    Oh MJ! I love you more than I can say. With or without antidepressants, you are one of the strongest and most beautiful souls I know. Wishing I could just come over and give you a big hug. We do pray for you often. That you are blessed with unexpected joys during this season. For moments of clarity for G that wash over you like a precious gift. For those amazing daughters of yours.

    You are blessed, but you are also allowed to grieve all you have lost. I greive for you some days! Strength is not defined by happiness. It is that inner ability to know that through it all, God never leaves or forsakes us. You are amazing. On the days you walk confidently, and on the days when you are barely putting one foot in front of the other. You are beautiful and you are loved.

  6. Hannah, sweetheart, if I could choose another daughter it would be you. Your prayers mean more than I can possibly express. You change my life by your encouragement. Thank you for always saying the right thing.

  7. Constantia permalink

    It sure is a bumpy road with Lewy. It must be hard for you that your friends didn’t find a way to cope with the situation.
    Our friends are still around. A former college of my husband took him for a ride one day. They went viseting old clients. That was nice for al parties. It was nice to have the house to myself for a few hours. In oktober 6 of our friends take us out for a long weekend in a cottage. I look forward to it.

    For me it is hard that my hubby doesn’t always know who I am. He sees me as “me” and as the “other” I never know who is in the house. We can spend a whole day together and when we get home he asks “Did it rain here today”? Looking at picteres taking that day he is really surprised to see me on one of them. Where you there aswell? Yes, I am always with you.
    My husband doens’t have the dreams. He sleeps very wel and so do I. Don’t use medicins, yet;-).

    In the Netherlands there is daycare health for people with dementia. Is that the same in America?
    Starting oktober I think my hubby wil go there for two days a week. At home, beside the walking and cycling on the electric bike, it is hard for him. He is alone most of the afternoons. We hope the daycare can help.

    Thank you for your writing. It helps me.
    Good luck with everything.

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