Lewy Sneaks In

I wonder what happens in my home when I’m not here. I’m not referring to the antics of our pooch, for Einstein leaves clues of his misdeeds. I joke with my grandsons that their own dog has a party complete with paper hats and balloons. I know that Einstein is aging just like us and prefers to spend much of his time snoozing away on our family room couch.

In this instance, I was wondering how often Lewy comes to try to rule our roost. While I was talking with my sister on the phone, I could tell that my husband’s eyes were appearing glazed and his body frozen while seated on the couch. Lewy had snuck in while I lost my guarded stance. It had silently crept to my Bob and covered his body in a tight hold. I went to his side and quietly held him in my arms as I whispered encouragements and words of love. There I stood until this finally passed. I had promised to be with Bob to fight this dreaded disease, but I realize that Bob often must do this battle alone.

It scares me. I worry how frequently Lewy takes claim over Bob while I am not home. I worry that my sweetie must most certainly topple on the couch or slouch on his computer while alone. It breaks my heart. Guilt washes over me as I worry that my husband should have more support. How dare Lewy come and clutch Bob’s brain. What can I do to provide a constant team approach?

The new medicine has still tremendously helped Bob. Since starting this medication, the night terrors have been reduced to mere bad dreams when Bob is asleep late in the night. If he falls asleep during the day, those awful dreams still control his body. The hallucinations are reduced meaning animals no longer fill our living room. Despite these great results, our insurance still refuses to pay claiming limited proven success with these pills. We’ll continue to pay out of pocket, but it infuriates me that those in the insurance field make such major medical decisions without the training of our doctors. Oh well. At least, Bob has these pills to help him rid Lewy from his soul.

I wish I knew how to be the best wife for my darling throughout this Lewy Bodies Dementia struggle. I want to block its path into our home, marriage and lives. I still see him frozen today, leaning to the right as his eyes stare into Lewyland. I just want Lewy to leave.

We will fight this together and work to continue to scream that life is good.

God Uses Our Love to Prove that Life is Good

        Even when we are not physically together, our love keeps us bound together.

A Hard Morning with Lewy

Lewy came to church today. Bob didn’t say anything at the time but I know the frozen stare that comes with this strange disease. He glares off in the distance while his muscle tone tightens his frame. It didn’t last very long this time; the duration varies immensely, yet the threat of Lewy’s arrival complicates our actions.

We’ve been home for a bit by now, but I still see his frozen face etched into my mind. I can’t help wondering why God has brought this stage into our lives. Change that last line to why God has allowed Lewy to still reside in Bob’s soul. God has provided good doctors and loving friends but that isn’t enough. I want an exorcism of some kind to remove Lewy totally and completely.

Lewy is always with us. We can pretend to ignore its existence only to have Lewy pounce on our lives. Its threat has me always driving. That’s a small concession yet it is a major change in our routines. Like most families, the male usually takes the keys. I don’t mind the driving, but I shudder when I realize why I’m now in the driver’s seat. I watch him at the stove or when he ventures out with Einstein.

The hallucinations are getting larger and more frequent. The somewhat cute little fuzzies are being replaced with larger creatures with scarier faces. They fit right in the Halloween decorations, but I would pay anything to get them out of his head. It’s difficult to have a nice dinner when a monster struts closer, ready to pounce.

A lot of Lewy is why. I was never one to question God: I always felt a tinge of irreverence when doubting the Lord. A debilitating disease changes that worry. I now beg God to let my Bob come back full time versus periods of lucidity and confusion swirled together. It’s often me that wants to hover over my darling to protect him from the falls and wandering gait. I just don’t know how.

Bob is resting now. I know the doctors forbid daytime naps, but his body is so fatigued after being so tense throughout the morning. He’ll arise soon and place on his mask that things are normal. I’m proud of his efforts but silently sob with his need to be strong. Go away Lewy. Leave us alone! Life is so good, why are you trying to take that from us! Please help us God!

God Uses Our Love to Prove that Life is Good

           Lewy comes to visit, but I stand guard of my husband. He won’t fight this alone.

Emotions

Emotions continue to swirl inside me crating an amalgam of emotions expanding more than my waistband. You name an emotion and Bob or I have probably experienced it in every pore of our bodies. That’s really not a statement that tingles my spine with delight.

Both Bob and I have been worried about what the future holds for us. It’s difficult to live in the moment when Lewy Bodies Dementia (LBD) is hovering overhead. What will happen to our finances? How long will this horror last?  What will life be like in another year?

Love continues to also overfill our hearts, gently pouring throughout our bodies and everyday emotions. With an LBD prognosis, we value each day in a manner that I couldn’t previously fathom. I’m so blessed with a good hubby. Life is good.

I’m confused with all of the new medicines and theories and specialists and symptoms and appointments. Everything begins to blur together despite all my efforts and diaries. When does it end? I just want to hide away in my bed sometimes.

I admit my curiosity also has the better of me sometimes. I want to know more about these hallucinations that continue to dwell within my husband. I’m curious about the little animals that scurry around our home. Sometimes they are larger and are the focus of more concern, but usually they just scamper from room to room. This protein in Bob’s brain has created the many colors and textures. How does this all work? The brain has such unique powers that can never be captured by man. I can’t fathom God’s creativity in all of his creations.

We’re tired of the monotonous routine that has been embedded in our calendars. There is always a minimum of three doctor appointments per week. There are medications to order and diaries to keep. I’m so tired of this LBD monster that I want to hide in y bed, snuggled away in the comfort of my sheets. I can hide in my sleep unlike my poor husband.

I’m pleased that we are fighting LBD. The new medications have helped to ward off the horrors. We can laugh in delight that we have temporarily defeated or perhaps just slowed this devil. We want to be together and discover all that the world has to offer. We can look around at our home, family and friends and know that life is good.

I’m anxious. There is so much to learn. I had never even heard of this disease four months ago and now it fills almost every waking hour (and lots of the sleeping ones too). Emails from others who know this journey constantly fill my email. There are constantly new books and new studies. There are so many other people who also need to be attentive of this knowledge. It’s LBD awareness month. What can I do to help spread more knowledge?

I’m grateful for the many people who stand next to me for this voyage. My friends at Prince of Peace have shown such an awesome support and the willingness to provide so much more. My daughter and son-in-law are only a phone call away. The doctors and support staff are amazing at the words of encouragement and willingness to work as a team. God has sent many blessings to us. Life is good.

God Uses Our Love to Prove that Life is Good

        Our love is just one of the many emotions that fill my heart. Let this love be not only for my Bob, but for the Lord as well.

Autumn Colors

The autumn colors have begun to splash against the trees with breathtaking peeks at heaven. Yellows, oranges and reds cover the foliage as you travel the roads with each turn becoming more and more vibrant. Jack Frost has showed his ADHD tendencies, as he must have bounced throughout the forests showering the leaves with all the colors on the palette. Each new day brings new colors on new leaves along my path.

I love the fact that as the trees age and winter days approach, those leaves show off their unique personality. Bright colors beg people to look their way. They will go out with glory before drying up and dropping to the cold ground. Some leaves try to cling onto the branches while others seem to fall before their time, yet God has given each one the spectacular ability to awe the world.

People need to feel that same way. It’s demoralizing to hide away in sterile shelters missing the time to show off in style. The Red Hat Society has the right idea as members gather together in purple and red. There are too few such organizations. My age has allowed me to join such a group, but I haven’t taken advantage of such an opportunity at this time.

Now Bob has Lewy Bodies Dementia. I want to show him off and shout to the world that he is one special guy. Lewy’s weird characteristics shouldn’t override the fabulous features of my beloved. He sees the wonderful possibilities in our grandsons more than the strange creatures part of his hallucinations. His limbs quake but have held me up for many a year through many a hurdle. I guess it is up to me to splash that color on my husband as the future years further deteriorate his frame.

So, that’s what I’ll do. We won’t hide alone in our home, afraid to venture forth just because of some tired limbs or confusion about trivial facts. I’m blessed with a wonderful husband who loves me all the way to the depths of his heart. He’s got lots to show off. With God, I’ll help him continue to do so.

God Uses Our Love to Prove that Life is Good

          It’s so easy to show off my husband just like those autumn leaves. Life is good!