Compassion and Commitment: A Journey with Lewy Body Dementia

By Kathy Erickson

My husband was diagnosed with early-onset Parkinson’s disease when he was fifty years old. Two years later, his diagnosis was changed to Lewy body dementia with Parkinsonism. I decided to keep track of our journey and the twists and turns people deal with when diagnosed with a debilitating disease. I tried to cover all the basics on a timeline—from being diagnosed, different medications we tried, a constant decline in the activities of daily living, being hospitalized, entering a nursing home or coming home, and having in-home health care. When you have a loved one with a devastating illness, whether it is a spouse or a parent, you want the very best care for them if you can’t care for them yourself.

This book covers our experiences with issues involving health insurance, nursing homes, trying to work full-time, and the reliability of several in-home health care agencies and the unfortunate nightmares you deal with on a regular basis. It also touches on how to deal with the stress you experience when your life doesn’t turn out as you thought. I ended up losing my job because of all the times I missed trying to work trying to care for my aging parents (my mom Alzheimer’s), my spouse, and family and all the duties that go along with owning a home. The brain is such a complex organ, and when it starts to die, it affects every person differently. I hope this book will help others dealing with loved ones suffering from dementia by giving them awareness, insight, and an idea of what to expect as the disease progresses.

• Language: English
• Publisher: Xlibris US
• Release date: Dec 27, 2018
• ISBN: 9781984572257

Book preview

Prologue

M y husband was diagnosed with early-onset Parkinson’s disease in October 2004 when he was 50 years old. I started writing a journal to try and keep track of his symptoms as his disease progressed, what medications we tried and discontinued, and how our daily lives had drastically changed. I also thought it would be like therapy for me, although I never thought I’d still be journaling 14 years later! I tried to write every day but was soon overwhelmed with taking care of him, the house, the bills, and the kids, the yard, my parents, (my mom had Alzheimer’s) all while trying to work full-time. We have three children who are now grown. Our oldest two children are boys, 35 and 32. Our youngest is a girl, 28. The boys both live very close, just down the road, but my daughter lives two hours away. However, I know that I can count on each one of them to help out if I ask for their assistance. I’m so very proud of each one of them as they have all grown up to be respectful, smart, funny, and very compassionate people. I would NOT be able to get by with the care of the house and property without my kids’ help. The boys take care of the outside work, summer, and winter. We have a big house with 40 acres of land. We mow about two acres. My husband and I built our house and moved in back in 1978 after we got married. When we got married, we both took our wedding vows seriously. We knew it would be hard work to have a happy marriage, but we believed it was worth the work. There would be compromising, commitment, and genuine love between us that we could deal with whatever came our way. For better, for worse, for richer or poorer, in sickness and in health, till death do us part.

Here is our story.

Chapter 1

J im was working full-time as a letter carrier with the U. S. Postal Service and walked approximately nine miles every day delivering mail on his route. He was a very intelligent and athletic man. He was the salutatorian of his high school class, and after high school, he continued to play sports, mostly softball and basketball. He coached all three kids in whichever sport they played.

Back in 1999 when Jim was 45, he started having severe pain in his hips. After visiting an orthopedic doctor, we found out that Jim needed hip replacement surgery on both hips. He didn’t want to have the surgery right away because he was afraid he would miss too much work. He lasted until January 2004 when the pain became intolerable from walking nine miles each day. He decided to have the hip that bothered him the most replaced first. Immediately after the hip replacement surgery, I noticed something wasn’t right. While in the hospital room he would sit and stare into space like he was in a trance. He didn’t know where he was or that he just had surgery. He was struggling with memory issues, hallucinations, and confusion. He was also experiencing extreme muscle jerking that he had no control over. The nurses said it was common for some people to have issues after receiving anesthesia and he should get better each day.

After Jim got released from the hospital, he went through the normal rehab program then came home to continue physical therapy. I believed the confusion, hallucinations, and mild cognitive impairment he continued to experience were NOT normal, and he never recovered fully after the surgery. He went back to work at the Post Office after a few months but continued to struggle. We both noticed simple things were becoming more difficult. Jim was having increasingly poor hand coordination when buttoning his shirt and going through the letters he was delivering. His handwriting was becoming smaller and smaller, and his voice was becoming quieter. While driving, he struggled to stay in his lane and his reaction time was very slow. It was a short drive for him to get to work and back home, so that is all he drove, except a block or two delivering the mail. I was extremely hesitant about him driving any distance.

Jim was getting worried that something might be wrong, so he made an appointment with a neurologist. At that time we had no idea that all these symptoms were related. It was October 2004 when Jim went to his first appointment. After the initial examination, the neurologist diagnosed Jim with Parkinson’s disease. The doctor said he wouldn’t be surprised if Jim ended up with a malignant version of Parkinson’s in the form of multiple system atrophy. We didn’t know what that meant, but we were both in shock! The neurologist prescribed Amantadine and Requip and ordered a series of tests like a CT scan, MRI, an EMG, blood work and a urinalysis. Amantadine is a drug commonly prescribed for people with Parkinson’s disease. Its purpose is to help with the sudden uncontrolled movements associated with Parkinson’s disease. Requip is prescribed to improve the ability to move and decrease tremors, stiffness, slowness, and also helps with balance.

The test results showed that Jim had mild carpal tunnel syndrome, but the brain scans were all normal as well as the blood work and urine test. At each subsequent doctor visit, I explained how restless Jim was all night, and I couldn’t believe that he could have a restful sleep with all the muscle jerking, tugging on his sheets, and screaming all night. It was during his appointment in April 2005 that the doctor prescribed Sinemet and Ambien hoping to help him sleep at night. The neurologist added the Sinemet in hopes that it would aid with Jim’s difficulty moving while helping with shakiness and stiffness. The doctor was also concerned because Jim had been losing weight over the past six months. Jim informed the doctor that he was extremely tired all day, so the doctor ordered a sleep study to see if Jim had a sleep disorder. I was very happy because now someone besides me would see how bad sleeping was for Jim. During the sleep study, Jim was hooked up to all sorts of electrodes from his head to his toes. I was positive those would track all the times he uncontrollably jerked during the night because sometimes the jerks were substantial. He also screamed during the night like he was having nightmares.

I was very disappointed when we went to the doctor’s office to get the results of the sleep study. The results of the sleep study showed that Jim was just really tired and needed to get more sleep. He was able to fall asleep within one minute of closing his eyes. Really? I couldn’t believe they didn’t diagnosis a muscle disorder or find a medical reason for his restless sleep. I thought for sure a problem would be diagnosed with his muscles. I did not expect the doctor to say Jim was just tired. I felt angry and let down because I knew that all the jerking and screaming Jim did every night was not normal. I wondered if I would ever sleep well again.

In November 2005 the neurologist added a medication called Provigil, hoping it would help Jim at work. This medication is prescribed to help in reducing daytime sleepiness, and Jim was extremely tired during the day. Jim didn’t think the Provigil was helping at all, so he stopped taking it.

Chapter 2

I n February 2006, the doctor put Jim on the Exelon Patch. The Exelon Patch is a medicated patch that sticks to your skin and releases medication at an even rate for 24 hours, which would eliminate the wearing off Jim was experiencing while taking Sinemet as the symptoms would return before the next dose was due to be taken.

We went to the neurologist’s office for a checkup in December 2006. The doctor told us that Jim could have a more malignant form of Parkinson’s disease known as Parkinson’s Plus. But after the doctor examined Jim, he thought that what we were dealing with was a disease called Diffuse Lewy Body Disease. I had never heard of Lewy Body before so I tried to look it up on the internet. I couldn’t find very much information about it that was in layman’s terms. Everything I found was in medical terminology for doctors or medical professionals. But I discovered that Lewy Body disease is the second most common form of dementia after Alzheimer’s; however, it is the most misdiagnosed form of dementia. People with this disease are initially diagnosed with Alzheimer’s or Parkinson’s disease because the early symptoms are very similar. Lewy Body dementia became better known to the public after the actor, Robin Williams died. His wife was instrumental in bringing awareness to this little-known disease.

As I mentioned earlier, I was very hesitant to let Jim drive any distance. However, in July 2007 both of our boys were in a wedding, and Jim had to work. He was going to drive into town after work, which was about fifteen miles one-way to meet me at the reception. I worried all afternoon about him driving into town. I made sure he took a snack with him thinking that if he were eating he would be able to stay awake while driving. He ended up being later than expected, and I started to worry. The reception was in a venue where the whole upstairs was a banquet hall. Somehow Jim found his way to the upstairs through an old dark stairway, and he ended up at the back of the stage at one end of the reception hall. Normally you would know a dark stairway isn’t the way a venue would send guests upstairs to a reception hall, but he didn’t seem to think it was odd.

When we left the reception, I told him to follow me home so I could keep my eye on him. Well, wouldn’t you know he fell behind at the first red light! I started going slower and slower waiting for him to catch up. He never did. I ended up turning around to look for him. He had gone through a red light and hit a car broadside. Thank goodness no one was hurt and there wasn’t much damage. After that incident I never let him drive any distance.

Jim started making mistakes while delivering the mail. It would take him longer and longer to finish his route because he would see that he forgot to give someone their mail so he would turn around and go back to make sure it got delivered to the correct house. He was also having issues with his balance and started falling quite often. He had to report each fall to the Postmaster and fill out an incident report. Having to do this bothered him because he had always been a perfectionist and he didn’t want anyone to know how much he was struggling. He knew he was getting worse but continued to try and work the best he could.

He was also struggling at home working in the checkbook. He either fell asleep trying to get it balanced or made several mistakes and couldn’t get it to balance. He even started to forget to pay some bills. The neurologist thought maybe putting Jim on Ritalin would be a better medication for him. Ritalin helps children with ADHD, but it can also be used in adults to help keep them awake and focused during work hours.

In September 2007, the neurologist advised us that Jim should start thinking about retiring on disability due to the steady decline of his condition. It was difficult for Jim to accept because he was the man in the family, the father of three children, and my spouse. He felt the need to be the provider. The doctor explained that Lewy Body Dementia was a multi-system disease. It includes a REM sleep disorder, (which I thought the sleep study would have shown), dyskinesia (involuntary muscle jerking), cognitive impairment, hallucinations, and Parkinsonism, which are symptoms of Parkinson’s disease. The symptoms include lowering of the voice, handwriting becoming smaller and smaller, trouble with small motor skills like buttoning buttons, struggling to handle envelopes in the mail, balance issues, drooling, muscle