My dad has always been a drinker. He was never mean or disorderly, but always had a drink in hand in the evening. After he and my mom divorced, he seemed to spend most of his time alone at home with a drink in hand. He paid his bills and kept his job, but slowly his life started to fall apart.
In summer 2007 I noticed that my dad started repeating the same story to me over and over again. I was really upset at him that he was drinking so much that he couldn't even remember that he had told me a story already. Once he started hallucinating, I knew that something was definitely wrong. One afternoon I was at work and I received a phone call that my father had called the police to say that there was a dead woman in his apartment. The police came over and found no dead woman, but knew that something was medically wrong with my dad. They sent my dad to the hospital to detox from alcohol. I was so relieved that my dad was finally safe and that he was going to be ok. According to the doctors my dad had tried to quit drinking on his own. A week passed and my dad was physically doing better, but he hallucinated regularly, he made up stories, and he wasn't himself. I just couldn't understand why he seemed better before he quit drinking and now he acted like he had gone crazy.
The doctors said that my dad was likely to need a high level of care full time going forward since he had no "safety awareness". They diagnosed my dad with "dementia with psychosis." A doctor told me that my dad had 6 months to live and that he would never have any true quality of life. They suggested that I get in contact with hospice to make him comfortable so that he could die peacefully. I was devastated. I couldn't understand how he had gotten sick so quickly. The doctors told me that he probably had dementia for a long time and no one had noticed because of his drinking.
He was in a variety of care facilities in the US and he continued to hallucinate regularly. Every once in a while my dad was lucid and normal. He could not remember what happened yesterday but could tell me stories about his childhood in perfect clarity. Some days I called and he was so weak that he couldn't even hold the phone. I just couldn't understand how we had "lost" my dad. He was in a wheelchair and was incontinent. He kept telling me that he wanted to continue to live, but he couldn't figure out a way to get himself out of this "mess." He also kept complaining that he had double vision. The fact that he had double vision was my only clue that there was something wrong besides 'organically degenerative dementia'.
I found Carenza Care on the internet by typing in "Korsakoff rehabilitation." I knew that it probably seemed crazy to contact Wales about a patient in the US, but I figured that they might know of other Korsakoff rehabilitation centers in the US. They were very helpful and I was surprised that some of the strange behaviors that my dad was exhibiting were common in other Korsakoff patients (for example crawling on the floor on hands and knees).
After a consultation with my dad, an assessor associated with Carenza felt that it was likely that he did have Korsakoff syndrome. Carenza told me that my dad needed lots of thiamine and they offered to provide materials to his caregivers in the US so that they could understand more about Korsakoff syndrome. The doctors in the US would not prescribe Thiamine because it was not in their normal guidelines for treatment of dementia and the caregivers offered to read Carenza's materials, but did not change the way that they cared for my dad.
My dad was miserable. He knew that living in a care facility was not how he wanted to live. He kept telling me that most of his problems were "psychological rather than physiological" and that he was "meloncholy" about his life. My dad regularly used sophisticated vocabulary. It was like he was trying to tell everyone "HEY - I am still here!! Don't give up on me." After three months in care, he had gotten worse rather than better. He was depressed. Carenza Care asked if I would ever consider bringing my dad to stay in their residential rehabilitation center for 3 to 6 months. Carenza told me that he would get better and it was just too difficult to believe. I thought that maybe other patients with Korsakoff would get better, but my dad was especially bad. I spoke to my dad about going to Carenza in Wales and he became anxious and agitated because he was ready to leave the care facility that he was in and start his own rehabilitation. He kept asking when he would get to go away to "school in Norway" (school was his term for Carenza and he kept calling Wales, Norway!) I was worried in the back of my mind because all sorts of web sites stated that Korsakoff was untreatable, but my family and I decided that it was worth a shot.
The day we arrived at Carenza was in a wheelchair. I remember very clearly that the Carenza staff told my dad that if he worked with them he would regain his independence and I remember a very incredulous look in my dad's eyes. He responded that he hoped that she was right, but we would all have to wait and see.
The next 6 months flew past. The difference at Carenza was that they understand Korsakoff and they treated my dad like the intelligent man that he is. They made my dad do for himself instead of pampering him. Within a week, he was walking. Within a month, he was doing house chores. Within three months, he started to walk to the store alone to get his newpaper. He started to read and write again. Every time I talked to him he sounded more like my dad. He still told tall tales (confabulation) but at least he was able to enjoy life again. Every day Carenza did cognitive therapy with my dad (crossword puzzles and word and memory games). Slowly even the confabulation began to disappear. When I went to pick my dad up from Carenza, he was a different person. Though he really had not spent much unsupervised time over the last 6 months - he was ready to be independent again.
I learned from the staff at Carenza that the way that my dad learns is different now and that routine and structure are particularly important in his life. He is now living in an apartment near my brother. He has a structured route and family around him regularly. He wakes up every morning, eats breakfast, takes his thiamine, and takes a walk. He found a karate class down the street and walks to it three times a week on his own. He pays his bills every month and walks to the store to get groceries. He even does his own house chores. Overall he enjoys his life and he enjoys spending time with his grandkids. Its hard to believe that 8 months ago my dad was completely dependent on caregivers and now he lives a normal, productive life. My dad realises that he was one of the lucky ones and he knows that drinking is not an option for him anymore. It is difficult to understand how such a simple treatment program is not "normal" procedure for treating Korsakoff patients, but I am grateful that Carenza and its staff were available for my dad when he literally did not have any other options.
