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Summer is here…. we wait and hope Lewy takes a vacation!

June 21, 2014

We have finally arrived at the beginning of summer. It has seemed like such a long wait and such a harsh winter. Hard to believe how deep the show was just a few short months ago. My flowers are beautiful, baskets are cascading with bright blooms and my gardens are full of beautiful, fragrant flowers which attract buzzing bees and hummingbirds. I am thankful that we have maintained our sanity, dealt with crises and made every attempt to keep our hitchhiker Mr. Lewy from grabbing too firm a hold on us. My husband continues on his slow decline.Some days it seems as if he is hurdling down an icy slope rather than taking a slow decline. I notice his cognitive skills slipping… more forgetfulness, more difficulty maintaining a conversation and a shorter attention span. I find myself trying to take note of where he puts everything. I am his memory now in many instances. “Your belt is on the hook in the closet, your wallet is in your top right dresser drawer, your Ipad is on the coffee table, your chapstick is on the counter, your coffee is on the vanity in the master bath” that is a very common morning for us.

We live on a beautiful piece of property on a river where kayaking, canoeing and boating is allowed due to the depth and width of the river. We own 3 boats….we never take them out. They are used a bit by our kids and their friends, but neither of us feel comfortable taking them out alone. Sadly, my husband spent every summer of his youth on a lake and we have owned water front property much of our lives, but he is no longer comfortable operating a boat or handling a canoe. He will sit by the river and watch the grandchildren jump off the dock for hours and will sit by the river and just enjoy the wildlife and quiet. But he no longer has any interest in casting a line in, despite the big fish we see jump close to our dock or taking out the boat. He no longer has confidence in his own abilities which makes me sad.

He asks me many questions about my “best guess”. “When will he become immobile? When will he no longer recognize me? When will he no longer be able to communicate”. I try to be as honest as possible while truly not knowing the right answers. I often tell him that I think he is doing well considering the horrible diagnosis he has been given and that we need to concentrate on the here and now. We have done everything we can to assure our home is safe, our finances are in order and powers of attorney, wills, life insurances etc. are signed and appropriate. It seems a strange disease as I see all the cognitive changes that have and continue to occur while still allowing my husband to understand so much of his illness and ask such poignant questions. He is still very capable of deciding many things independently and for that I am grateful. He understands and knows who he can trust and who loves and cares for him.

I think one of the saddest aspects of this disease is that it has taken away our power to plan ahead. We used to travel extensively and owned a winter home. Those things are just too difficult now. Even a day trip is sometimes
simply too much to contemplate. We have several weeks of company booked here this summer. I hope he can tolerate it. Of course, he can escape to the master suite, but he hates to have guests see that he needs to get away from the chaos and the many simultaneous conversations which surround him. Multiple conversations are hard for him to follow and seem to make his cognitive state more unstable. My husband, the perfect host, can no longer fulfill that role. We try to keep company low key and I try to clue guests in on the expectations. We are both planners by nature. We loved to plan together. Now that pleasure is one we no longer enjoy.

Physically, the summer seems to have brought a slower gait, more fatigue and as I have mentioned before increasingly vivid dreams and night terrors. We deal with these things as best we can. We try to stay active, walk, medicate for the night terrors….make changes to allow for a safer environment and wait…..we wait for what is next…we pray for the strength to continue to deal with the changes as they occur…we pray for the grace to approach our life with kindness and charity to others despite our situation….we wait for the unwanted hitchhiker, the dark visitor, the unwanted companion Lewy to sink his claws more deeply in our lives. Some days I wake up and for a moment in the darkened room I think my life is as it was a few years ago…filled with activities, friends, church obligations and plans for the next trip we would take. But I wait a moment and the realization that Mr. Lewy is here to stay floods my consciousness. So today, I find myself hoping that Mr. Lewy will take a short sabbatical….a 3 day vacation….a road trip….anything to just let us allow a few hours of our life before Lewy first visited. Unrealistic, I know. As my hubby so poignantly said being diagnosed with Lewy Body Dementia is like being placed in the “twilight zone”. There is little or no hope for improvement, the course varies and is uncharted and few people know or understand it.

So, I will do what I do every day. I will count my many blessings. First and foremost my dear husband who still wants to make sure that life is good for me. Adult children and dear grandchildren who visit and who volunteer to do whatever they can to make our life easier. The blessing of my own health…my ability to do things I never had to do in my previous life…the blessing of financial resources which make the future less frightening.

I hope if you are reading this, you will count your blessings, make a positive decision to look at the glass as half full, make lemonade with your lemons and generally just stop and appreciate the gift of life whatever your circumstances. I choose to be OK today….but I still foolishly hope that Mr. Lewy will take a short vacation. Until next time, may you be blessed with family and friends who care about you.

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  1. Mary Jane,
    Although it’s now been 9 months since angels escorted my precious husband of almost 50 years into Heaven, I still read and am blessed by your journal entries. I pray you will consider having them published so they can encourage even more people on similar journeys.

    I want to encourage YOU and your husband by reminding you that Lewy Bodies most often effect cognitive processes (executive function/decision making) and short term memory along with slower processing; therefore, unlike Alzheimer’s and some other forms of dementia, your dear husband will most likely ALWAYS fully know YOU AND all other long time family and friends.

    Up until Sam gradually slipped into a comfortable and deep and deeper 6 day sleep, he was fully aware of who I was and was concerned about my comfort and care. He always knew our 2 daughters, son-in-laws and even details of each and every one of our 16 grandchildren’s lives. Although not on a minutes notice, but given time to think, he could recall names and details about people from church and former classmates we hadn’t seen in many years. Literally, his long term memory remained better than mine had ever been. :):) I pray you and yours also experience the JOY of always being known.

    I am also asking Our Heavenly Father to insist Mr. Lewy NOT include himself on your next get-a-way. Peace in the midst of the journey,
    Jan G.
    Denton, TX

  2. Kay permalink

    Sending you both love, hugs and a beautiful summer.

    • Love to you Kay and Greg….hope you are enjoying the Don! That is clearly the perfect place to get away.

  3. We surely all are enjoying the summer days after the long cold awful winter. Hoping you have a peaceful and relaxing whenever possible, summer. Love, MJ, Ed & Miles xoxox

    • Thanks MaryJo. We are getting along as best we can! We got a kitten which has supplied lots of entertainment!

  4. What an incredible strength you are. I spent many years taking care of my father after diabetes and cancer took him from me slowly.. It finally made him bed ridden with only 1 leg on oxygen and his mind began to leave him. I began to put the stories he was telling me to paper. I know what you are going through and wanted to give my support. I know that I am here in Vestal NY, but I feel what you are going through.. You are an incredible women for what you do. You are an incredible support for your husband. Prayers and thoughts to you.. You are an inspiration!!

    ~CJ Scharfenstein

  5. I read your blog for the first time this evening and it seemed as those we were almost cloned! A precursor of weird nocturnal happenings for years. A sense of something is wrong, but nothing could be found – and all the while the anxiety is become greater. It seemed the first person to take notice was our then five year old grandson who asked, “Why does grandpa always look mad?” A first misdiagnosis of Parkinson’s followed up by neuro-psch testing – OMG. The melting clock, it was terrible. Airplane travel – worry worry.

  6. Patti K Miller permalink

    Thank you for this recent blog, MJ. I continue to admire your courage and grace and the fact
    that you also accept your own vulnerability. Kudos to you and yours. Loving regards.

  7. Thank you for sharing your blogs. Mr Lewy Body is a very cruel thing. My Dad also has Lewy Body Dementia, and Parkinsons. I wrote a story in the middle of the night every night for a week. It helped to write it down, however, then looking back it is so sad to see what happens. Love to you and your family.

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