BILL & LEWY BODY


April 20, 2007
It took four months in Long term care to get Bill's medications adjusted so he was no longer having the bad hallucinations and outbursts. He was still plugging the sink and running water all over the floor, or sprinkling powder all over the bathroom floor. He continued having hallucinations, and illusions. I would come in and he would tell me he had a job, or he just sold a house for not $1 million but $2 million. He would still see kids or people.
The end of April 2006, he was able to tell me I could go home at 6 or 8 pm and he would be fine. I took him out of LTC May 1st to travel with me on this Lewy Body Demetia Drive Across America
April 5, 2007
I worked the acute care portion of the hospital where Bill was in Long Term Care. I would visit him on my way to work and stop by on my way home from work. I never wore my uniform when I went in to visit him. That was my way of separating" Wife" and "Nurse."
Bill had frequent hallucinations, delusions, illusions, and occasional paranoia. One day he had to go out and fix the roof. I told him it was, too, dark so it wouldn't be a good idea to be out on the roof. So, he said he needed to go fix something in the basement. I discouraged that and he decided to fix something else. After discouraging this third job, he settled and didn't suggest any thing else.
One day when I came to visit, Bill was trying to figure out how to get the million dollars out from under the chair in which one of the other residents was sleeping . I took him for a walk out to the acute care side of the doors. It distracted him so that he forgot about the money under the chair.
Several times he would hear a baby crying and ask why he couldn't hold the baby. I just had to tell him there wasn't a baby. It was his mind playing tricks on him again.
I would come to visit him and we would take walks down the hall and have coffee and tea in the cafeteria when it was open. We would sometimes go outside. It was in the winter so we would have to be careful of the ice. A few time I took him to lunch across the way at the Senior Citizen Center. Sometimes we would just lay on his hospital bed and watch TV.
I, always, took him to church on Sunday, and many times we would go to supper at church on Wednesday evenings. We would drive out to the Ferry dock and just watch the water or the otters if they were out.
March 22, 2007
The young man did not come back to help. He was very frightened by the ordeal. I had a lady, Lou, who came to help.. She was wonderful with Bill. She brought her dog when she came to care for Bill. She came whenever I worked and sat with Bill for the next six or seven weeks. She would talk to Bill, play games with Bill and treated him like a real person.
November 30, 2005, I admitted Bill into the Long Term Care Facility at the Hospital where I was working. I could not afford to pay for a sitter, and I was getting no financial help from any other sources. Medicaid paid for the Long Term Care Facility.
Lou said that she enjoyed staying with Bill so much that she started working at Senior Center and assisted one of the men there who needed care. She later took the CNA course at the Prince William Sound College. Bill and I went to her Graduation at the hospital.B
BILL IN LONG TERM CARE
The second night that Bill was in the LTC, he had a hallucination. The Enemy was out there. He emptied the Alcohol Bottle for hand cleansing all over the floor. He barricaded the door with chairs. He turned the water on in the sink and plugged the drain so that the water ran all over the floor. One of the nurses peeked her head in the door, and he gently closed the door on her head.
The hospital called me at 3:00 AM because of Bill's behavior. When I got there, he let me in without any problem. He asked if that girl was OK. He was exhausted. He told me the Alcohol was to protect him from the enemy, the water was to protect him from the fumes.
The next day he took off, went out the door of the LTC and went to the Senior Citizen Center across the parking lot from the Long Term Center One of the LTC employees followed him to the center. He wanted to eat lunch there. The LTC person wouldn't let him--insisted he come back to the LTC. It created quite a stir.
Bill told me later, "The fat bitch wouldn't let him take his kids to the festival. She blocked the door and wouldn't let them in."
March 2, 2007
Thursday, after I went back to Valdez, and left Bill at Laura's house, Bill took a walk--just left the house and started walking. Laura's husband Joe was at home and followed him, trying to turn him around. Bill went about two miles before Joe was able to get him turned around to get him home.
The next day, Bill called 911 to report that he was being held hostage at his daughter's home. He did not recognize Laura, his daughter when she got home. She was totally devasated that he did not know her. Joe called me to say, "We can't do this. It is, too, much for Laura. You have to come and get Bill."
I was working the next two days an could not come until Monday evening. I had only been working at Valdez-Providence Medical Center two months. I could not just take off. I drove over Monday evening after a mandatory inservice. I was in a hurry and stressed. I tried not to rush, but was stopped by the Alaska State Patrol, and given a speeding ticket. My first in over 20 years.
After we got home and I went back to work, the first night was OK. The second night, the police called me at work to say that Bill had been out in the rain waiting for the bus to take him to the FFA Convention.
After that, I hired people to stay with Bill while I worked during the night. The first night a young man stayed with him. He played games with Bill in the evening, and then Bill went to bed. About 2:00 Bill got up, told him he wanted to "go home."
The young man called me at work for advice. Bill was quite insistant and would not settle with anything. I told him he could try taking Bill out and walk around the block. He did. Bill took off and walked about a mile to the little Valdez Airport. "John" stayed with him, and talked to me with his cell phone. He couldn't get Bill to turn around.
I told him,he needed to call the police. He didn't want to do that.The police came by on routine patrol. "John" told the police they were OK. Bill said, "I'm tired it would be good to have a ride back."
The police returned "John" and Bill to our house and Bill was still upset. John brought him in to the hospital. I took a break and visited with them. Then Bill was ready to go home and settle down.
One of the things about our Lewy Body Dementia People is their total need for that one, special, person they have lived with, usually the spouse.
February 27, 2007
Story Continued: I woke up at 12:30 and Bill was not in bed with me. I started to get up, and there was a policeman with his head in my door He asked, "Do you know a Bill Hutchinson?"
I said, "Yes, that's my husband! "What's going on?"
Bill was out by the road waiting for the "team" to pick him up. He had packed a plastic bag with a pair of shoes and some jackets, whatever he could find. That was his uniform and basketball shoes.
The police called the EMS to take him to the hospital for possible hypothermia. I'm sure it was to set a precedent that there is a problem.
We left the next morning to go to Anchorage for Bill to start radiation therapy for prostate cancer. Bill was to stay with Laura, our daughter, for the duration of the radiation therapy--5 weeks.
Three days later, the night before I was to go back to Valdez, Bill was awake and up to the bathroom at 1:00 am. I went back to sleep and woke at 2:00 am. Bill was gone, along with his suitcase, my suitcase, and a clothing bag.
I found him around the corner from Laura's house, with the bags, waiting for the bus to take him as far as it would go. The place where he was waiting was a school bus stop, where he had seen the bus pick up children.
February 7, 2007
New Year's 2003, Bill and I got together with all of our girls, Janice, Laura, Karen, Kris, and Nadine. All of them were able to bring their husbands and children. We met at Nadine's house on base at Camp Pendleton, California. We walked the beaches, had fire on the beach and a great time.. At that time Bill seemed just fine. He carried on conversation, we all played games, he had no trouble walking on the beach.
I was working as a Travel Nurse in San Francisco. Bill would come to visit me from home in Elko, Nevada. Usually, came for a few days and was ready to return home because he had to take care of the house in Elko.
Bill came to visit me in March and stayed longer than usual--about 10 days. It seemed unusual to me at the time, but I really didn't think much about it.
He came again in June of 2003 and there was something definitely wrong. He walked like an old man, stiff gait, shuffling, slow. His thinking didn't seem all right. He was still able to do most things. We went out and bought a new pickup while he was in California with me. When he went home to Elko, he drove the new pick-up . I was very concerned that there was a real problem
I finished my contract with Kaiser Hospital in San Francisco, then took a month off work to find out what was going on.
January 24, 2007
July 2005, we loaded our Motor Home with two of our daughters, eight grandchildren and Bill and I. We drove our Motor Home from Fruitland, Idaho up through Canada to Alaska where Barbara took a position as Registered Nurse at the Providence Valdez Medical Center in July. After a bit of attitude adjustment, we all had a great adventure.
We found that we did the best when we would tuck the RV in a 6:00 am, leave the grandkids asleep and drive for two hours. By then, we could take a break, fix breakfast, get the children ready for the day, and give them a chance to play.
Back on the road about 10:00 am and another two hour drive. Coordinate lunch and gas fill. Gas stations were few and far between on the Cassiar Highway in western Canada.
We took 2-3 hour lunch breaks, then load up and drive until 5:00 PM - 6:00 PM. Suppertime and play time. We would at this time set up for the night. The kids would play until almost midnight. Driving through Canada in early July it was warm and daylight till midnight.
It was August 30, 2005,after we got to Alaska, that I took Bill to the Neurologist who diagnosed Parkinson's with Lewy Bodies. I was not told prognosis, or planning down the road. There was no change in his medications. At this time he was on Mirapex for the Parkinson's symptoms.
Ten days later we were going back to Anchorage for Bill to have his Prostate Cancer taken care of. He was going to stay with our daughter in Anchorage and have radiation therapy for five weeks, and then have brachytherapy (radioactive seeding).
The night before we left, I had gone to bed at 10:00 pm. I woke up later about 12:30 am and Bill wasn't in bed with me. I started getting out of bed, and there was a police with his head in the door. He asked, "Do you know a Bill Hutchinson?"
I told him, "Yes, that's my husband!! What is going on??"
BILL AND LEWY BODY DEMENTIA
Bill became symptomatic in 2003. He had difficulty walking and was not responding appropriately. He tired, extremely, easily. He would work for 10-15 minutes, and be so tired he could hardly stand up. He would take a break for an 1-1 1/2 hours. Mentally he just was not thinking right.
I took him to doctors in California where I was working as a Travel RN in hospitals there. He was diagnosed with Parkinson's Disease. I read everything I could find about Parkinson's and found that after medication Parkinson's people were able to function at occupations or hobbies they had participated in.
Bill could not function. It was difficult for him to do anything that he had done before. He had trouble figuring out how to do the simplest thing, like using a screwdriver. he had lost his sense of direction. He was still able to take care of himself and cook a little bit. I could leave him at home while I worked at the hospital.
Bill would have hallucinations. One night he was up pacing most of the night. He got dressed about 4:00 am. He was sitting on the davenport with a stick in his hands. I asked him, "What is going on?"
He said, "I'm going to get the first bastard that walks through that door!"
I told him, "Your mind is playing tricks on you There is no one out there. Why don't you come back to bed". He did.
He was frequently asking, "Where is Karen?" (our daughter), or "Where is Nadine?" (another daughter). He would ask, "Where is Don sleeping tonight?" (Don is his brother.)
I would tell him, "Karen is at home in Florida." or "Nadine is at home in Japan." or "Don is at home in Idaho."
He would get out of the car and say, "OK everybody out!" or if we were going someplace, he would ask, "Is anyone else going?"
I would tell him, "There's no one else, Its just you and I."
I would mention to the neurologist that he was having hallucinations, and she would check out his Parkinson symptoms and say he's doing fine. Bill would, also, tell her he was fine. The hallucinations were not addressed.
It is very difficult to watch someone who used to be able to do almost anything--a person with a purpose--become a person who had no sense of planning; and no sense of future.
Early on, Bill was able to help guide me when I was parking the Motor Home in an RV Park. Later, he would get out and try to guide me, but I would have to be sure he was out of my way, and I could see him while I backed the Motor Home into the parking space.
We went to Tucson in January 2005. He played Bingo, and simple card games with the Crazy Horse RV Campground Park resident. They all helped him and took care of him while I was at work as an RN at the hospital in Tucson. I worked in Tucson three months and we went back to California.
The first night I went back to work in California, I told Bill not to wander. Wander was the last word he heard, ;and he did. He walked to Walgreens, a block away, bought something and then just went walking. He was able to show me his route the next day.
He walked about two miles and came to Polly's Cafe. He had supper and then had no idea how to get home. He called the police, but didn't know which RV Park we were in. The police took him to the back entrance to the park we were in. He didn't recognize it so had no idea where to go.
The police called the hospital where I was working and they told them I didn't work there. They called our daughter, Kris, in Sacramento, and she didn't know where I was working or who I was working for.
Kris called Nadine, in Japan, who was able to tell them who my Travel Agency was. My Travel Agency was called, and was able to tell them where I was working. The police called me at work and I was able to tell them where we lived. Bill was able to recognize our Motor Home.