When did it all start?

I still look back to try and figure out a timeframe of the progression and why I wasn’t able to see something was wrong sooner.

In November of 2007, Frank got into his first of three car accidents. He pulled out of a parking lot and hit a van, which he swears he never saw. Thankfully, no one was seriously hurt.

Friends came from away to visit. One night, we went to dinner one night, the next day they called me to ask if they could come talk to me. The conversation went like this: “What is wrong with Frank? Did he have a stroke?” I told them “no” — that he is just aging at a pace faster than I ever would have imagined. After thinking about all that was said that day, I decided maybe it was time for him to have a complete physical and scheduled an appointment. The doctor heard a slight heart murmur and sent him for an ultrasound of his heart. He also ran all the usual blood tests, which all came back perfect. So, the doctor gave him a clean bill of health. That was spring of 2008. The year continued, and he became a little slower as the days went by.

In March of 2009, a man ran a stop sign hitting Frank’s truck and flipped it onto its side until it rested on the driver’s door against a snowbank. Frank was tossed around and hit his head hard on the window and a metal tool box hit the other side of his head. Somehow, he was able to get out of the truck on his own. I took him to the hospital where they checked him out, took multiple x-rays, and an ultrasound of his stomach area. Everything came back fine, so they sent us home. Over the next few days, he was in lots of pain, so we were off to see the doctors again. They said he had torn the muscles in his chest area up and sent him to physical therapy. He attended PT for the next five months until our insurance ran out. He was doing okay for the next month and then his movement started getting slower and the shuffling of the feet started. The doctor sent him to a spine specialist who assessed with his motor skills and kept bending his wrist. He told us he had a hitch in the movement in his wrist and that he possibly had the beginning stages of Parkinson’s Disease. After researching it on the internet, I wasn’t able to find anything correlating the wrist hitch to PD. So, we just forgot about it. In December, his blood pressure started climbing and the shuffling was definitely getting worse. So, back to the doctors again… Frank came home with blood pressure meds and an appointment to a neurologist to assess for PD.

In January 2010, we visited the neurologist and the assessment left us with a definitive diagnosis of Parkinson’s Disease. We left with a prescription for levodopa-carbidopa. The new regimen of taking pills was not something Frank wanted to do at all, but he succumbed to do what had to be done. The shuffling eased some and he appeared better for a while. The year once again hit him with yet another diagnosis in the fall: Prostate cancer. Frank elected to have his prostate removed.

His recovery from surgery was slow and the pain killers were causing him to hallucinate, or at least we thought it was the pain killers. His PD meds kept getting increased as they couldn’t keep up with the disease. In April, he had his third car accident. He blacked out coming down a hill, drove down the side of a Toyota Camry ripping the front passenger’s side wheel and hub off my ¾ ton truck, when through an intersection and finally came to a rest a ¼ mile down the road. Then, he woke up not knowing what happened. He called me,and I called our daughter who got to the scene within a couple of minutes. She took him to the hospital while I drove the longest 20-minute drive of my life. We spent the night in the hospital while they observed him, ran a CT scan of his head and ran multiple tests only to say they could find nothing. His primary care physician suggested we take him back to the neurologist, and they still found nothing wrong.

In July, I had to have my neck operated on. Less than a week later, the State took his drivers license away. I had to drive him to and from work. His employer knew something was wrong, and they cut him back to four hours a day. Little did I know those four hours a day would be my four hours of sanity. Frustrated with the neurologist, I spoke with the primary care physician and asked her to refer him to someone who specialized in only PD. Months went by before the appointment finally came in September. He told us Frank had Lewy Body Disorder (omitting the dementia word totally), that his estimation was he was 75% into the disorder, handed me a business card with the lbda.org site written on the back, and his personal phone number should I have any questions. I read the entire site that night and cried the entire next day. 75% into a disease with a 5-7 year life span which leaves a year to year and a half maximum left with my husband.

The next 11 months were a constant challenge with the increase in the hallucinations, the accusations of me having an affair and the disappearance of the man I have loved for the past 25 years. In January 2012, Frank was laid off from work which was a polite way of letting him go. So, we made it into his retirement, started his social security and then he was with me 24/7. The frustration of not being able to do the things he used to do took its toll on him along with the increase in the hallucinations–there was always someone else in the room with us that he talked to (who really wasn’t there). I started taking nightly walks on our road where I could still see our house–named my walks my “sanity walks”. He decided he wanted to move back to our old town where all our friends were, so we put the house up for sale and moved in May into a house someone let us stay in until our house sold.

In July, he had me plan a big BBQ for our family and friends so he could say his goodbyes. Friends of mine are in a band and they came and played for him for free. I love my friends. We planned the party for a three- hour timeframe, in which we knew we could make him the best he could be — planning around his med schedule. He had a nap and excused himself to go to bed when the meds were wearing off. No one really saw how bad he had become. Trips out of the house were only when he was the best he could be.

Eight days after the BBQ Frank was bedridden. He was on a rapid decline. His primary care doctor was fabulous. She called for hospice and they came out to assess him. They were here in a few days only to tell us that he physically qualified for hospice, but we had no insurance so he didn’t qualify. They sent in visiting nurses to assess him three times a week, for which we had to pay. His doctor made house calls for free. She is a true angel. She would email me everyday to check on him knowing that I had her cell phone to contact her anytime I needed. I was never here alone. My friends came and sat with me.

The hallucinations were horrible for the next few weeks. We had giant killer grasshoppers, big rolling donuts that the dogs were chasing, the police invaded the house as he yelled “it’s a hold up.” Then, the one I will never forget: we were on an island with kids and they were getting into bottles of morphine (there was a case of bottled water on the floor that he could see from his bed. I pretended to pick them up as we played along with the hallucinations so as to not upset him.) then he got mad and told a friend that was here that he hoped she was happy she just killed those kids. He had pictures of his parents in the bed with him and would stroke his mother’s face in the picture and talk with he. The traveling he did on his journey was in chronological order going from the present to the day the police knocked on the door when he was little to tell his mother that his father had committed suicide.

On August 10, Frank spoke his last words “I love you Sandra” gently closed his eyes and passed on the 12th. I still hope for the day when I can think of the good times and not just the last few years of his life. I can now talk about him and smile before a tear rolls down my cheek. I have moved on with my life and remarried my best friend of over 40 years. It’s so nice to smile and laugh again, but I am still troubled by all that happened. I hope one day it will find a place in my memory that won’t cause so much pain. I am blessed that my new husband is ok with me talking about Frank…but I don’t want him to slip away because I haven’t yet found the place to put Frank.