Living with Lewy Body Dementia

Take Heart if you are a Caregiver of Lewy Body Dementia. Help is in this Book.

If you recently found yourself caring for someone diagnosed with Lewy Body Dementia or any Parkinson related disease, and you are overwhelmed by the prospect of the serious complications physically and mentally, take heart. This book is for you. Here you will find not only hundreds of workable ideas on how to maintain and improve the quality of life of your spouse or friend, but also a vast resource of information on what to expect of this unusual disease as it takes its course.

You are not alone. In 2009, at least 65 million people were providing caregiving services on some level in the United States. Of that, 10% were providing extensive care at level 5, which is the most demanding level of care. Of the 4 million people diagnosed with Alzheimer’s disease and another million with Parkinson disease, approximately 25% or over 1 million actually have a disease called Lewy Body Dementia.

It is not possible from the data to determine if that million+ people with Lewy Body Dementia are those people listed in the level 5 skill level category. If they aren’t, they should be. I was one of the 65 million and I understand the emotional, physical, and financial demands of caring for a husband with cognitive declines and movement dysfunctions 24 hours a day.

What exactly is in this Book?

When the professionals caring for my husband, Dean, saw how mentally sharp he continued to be and how motivated he was to stay on his feet, several suggested that we write a book about our experience. The purpose of the book is to provide answers to questions that might affect any aspect of caregiving or home life 24 hours a day, 7 days a week from suspected symptoms to the more advanced stages of the disease.

This book can be considered a medical reference book. The reader will understand all of the symptoms of Lewy Body Dementia, and how it is similar and different from Parkinson’s disease and Alzheimer’s disease. This is essential information when initially dealing with quizzical health problems. It is important to get the diagnosis right. Lewy Body Dementia has recommended treatments that are much different from Parkinson’s or Alzheimer’s.

It can be considered an educational caregiving manual. Each chapter is filled with a treasure trove of helpful hints, “meat and potatoes” suggestions on every aspect of caregiving. Little suggestions that work can have a significant impact on the stress level of both the caregiver and the patient. Taking off the glass shower doors and putting up a curtain allowed Dean to remain independent in the shower. The simple act of placing red duct tape on the floor helped him transfer more easily from the wheelchair to the leisure chair, when he had progressed to a stage where he needed help with his balance.

This book is a success story. My husband and I chose to face all the ongoing symptoms with a positive attitude and win-win strategies. It is personal and flavored with as much humor as I could fit within the pages, because it was the humor that made this adventure memorable. Some people with a devastating neurological disease just go to bed and stay there. We chose to make the most of every day.

After Dean came home from a hospital stay for a reaction to a new drug, he was reduced to invalid status. He couldn’t walk, was hallucinating about aliens, and was so weak that he slept for almost three days. Little by little we worked to reclaim his strength and stamina. Some times he was so exhausted after a short walk in front of our house that he would collapse in a chair by the front door, drenched with sweat. The option to quit was not part of who my husband was. The results were impressive. In six weeks, he was able to board a plane to Spain for a cruise of the Mediterranean with four friends.

We as a couple were in a unique position to share this LBD adventure. I, as a physical therapist, knew what to do with exercise and ambulation training to keep Dean as functional as he could possibly be at every stage of symptoms. Dean was a

life-long athlete. He loved any sport with a ball. When he was diagnosed with LBD, he had no other age related maladies to complicate the LBD picture of symptoms.

I have shared all of our successes and our failures. How else can I convince you that we took this adventure to the mountain tops, but occasionally landed in the valleys. In five years, we took three cruises, and traveled by car and air all over the country.

An entire chapter is directed at purposefully scheduling in the fun times, big and small.

The book is inspirational. Any disease that destroys mental, physical, and emotional wellbeing will create despair for everyone involved: family, friends, relatives and co-workers. How does a family move from happiness, memorable vacations, and retirement dreams to life with a monster disease that eats away at a loved family member one day at a time? No one is immune. Pessimism is easy, optimism takes work. It may sound trite to recommend staying positive when one finds himself hurled into a fiercely raging storm, but it's absolutely true. Lewy Body Dementia can be a nasty disease. With positive thinking, there is a greater chance that the inevitable anger, rage, and frustrations will be manageable. Manageable means better care — less pain and discomfort. With less pain and discomfort, the patient should be able to continue doing more things independently. The more he can do, the less the caregiver must do. It is a win-win situation.

Last but not least, the book is a faith-based self help book. I expected God to show up every day and thankfully, He did. We were blessed with many mini and mighty miracles that punctuated this adventure. I believed that we needed to work as if everything depended on our effort, but have faith that everything depended on God. He did not disappoint.

I have shared my emotional roller coaster and how I relied on Godly intervention to do what I had to do each day. My most effective technique was writing letters to God. There is tremendous power when communicating through writing.

The book is informal. The format is friendly and personal. I have been where you caregivers are. Even though I am a trained professional, I had to learn by trial and error. I wished that I had this information when I was waging war on this disease. I have tried to write each section as if I was sitting in your living room sharing options, telling funny stories, or assuring you that I understand. It is written from the viewpoint of a wife caring for a husband, but could be equally as informative for a husband caring for a wife. I have directed the material to LBD, but all the suggestions will be as helpful for caregiving with any disease that shuts down physical, mental, and emotional capabilities.

The Table of Contents is followed directly with an A-B-C- Index for the reader’s convenience. Entire chapters are directed at strategies to overcome specific symptoms: loss of balance, difficulties with daily care, loss of problem solving, as examples. The A-B-C index lists topics that might be of interest at any specific stage of the disease progression: ambulation, vision, drugs as examples.

If the suggestions help other caregivers anywhere, our story will have a larger ripple effect of caring compassion. Help is certainly needed.