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

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.