I am preparing for a family conference this weekend, and I came across something I wrote up for a meeting we had not long after Coy was diagnosed. This was to help the kids deal with their dad when they were staying with him. Virtually none of the first section it is applicable now -- Coy does not have delusions, hallucinations, or severely impaired cognition. Reading this I am reminded what it was like in the beginning and how much he has improved. This is what I wrote in July 2003. I'll bet some of you can relate!
Tactics for dealing with Coy’s Dementia Symptoms
Confusion, Hallucinations, Memory Loss
• Unless it is dangerous, humor him. (Being an airplane is not the worst vision he could have.)
• Don’t argue. If he thinks there are bats on the floor, there are bats on the floor.
• If his confusion is causing him minor distress, you can try accepting it but assuring him of a good outcome. For example if he thinks he is in a hospital you might assure him than he can go to bed and rest and he’ll be out of the hospital in the morning.
• If his confusion is making him restless and quite disturbed, you might try pointing out some reassuring evidence, without being argumentative or adversarial. If he thinks he is in a nursing home and that really bothers him, you might try pointing out elements of his own home. “Do you remember when you bought this cedar chest?” “You have had this bedroom carpet for a lot of years, haven’t you?” This approach relies on memory and logic, and may not be effective, but it is worth a few gentle attempts.
• Remember that the purpose of these conversations is to calm and reassure Coy. It is not to correct or teach him. Reality and honesty are not really relevant in these situations.
• If Coy starts off on some conversation he is currently “stuck” on, such as finances, try heading him off in a different direction very early on.
• Especially don’t correct him about something that will be painful. If he says “I hope Fred is coming to this dinner tonight”, a comforting response is, “Yes, you really like your brother, don’t you? What kinds of things did you do together when you were both young men?” There is no point in mentioning that Fred died some years ago.
• The psychiatrist has recommended against movies, shows, or taped books with violent scenes or distressing themes.

This reminds me of when my mom woke at 2:00am and said " I hate to bother you, but I was making a sandwich on that board in the refrigerator (what board in the refrigerator?!), and I lost the refrigerator" and she just looked so distressed, I felt so bad for her! I looked at her and said " Don't worry about it ,mom, we have another one in the kitchen", and that was all it took, she went back to bed just happy as all get-out! We've always just gone along with her hallucinations as so far none of them have been real scary for her. Since we took her off the Zyprexa she rarely has hallucinations now.

Yes, all good suggestions and examples. It's amusing but sad when family members who rarely see Derek come to visit and try so hard to figure out what he is saying [just as I did for so long!] and fretting because it makes no sense. So much easier just to 'go with the flow'. When we were leaving the neuro's office one day Derek remarked about the dog under the boat as he looked intently under a chair and I told him, "It's OK. Dr. M. will take care of it." I will say, though, that when he is in a strong delusional state with a fixation he will not be redirected. Sometimes I give him a writing pad and pencil and ask him to fill out a report so we can give it to the police. He makes a few scribbles and I put the paper in my purse. He needs to believe his concerns are being taken seriously. Often he is 'supposed to be at a meeting' and I tell him it has been postponed until next week.

I remember the day Coy wouldn't let anyone go into our bedroom, because the crime scene had to be preserved for the police, and the body hadn't been removed yet. And he wasn't at all distressed over any of this, except for his responsibility to keep us out!

from the other end….

what an idea….having a reality that isn't….

I wonder how much if any of my current reality isn't….

even wilder….having a foot in both places….

…………….

the desire to stay rooted in reality….or to convince oneself that one is….

this got me thinking back to what my last immediate supervisor wrote….Craig has shown, at times, resistance to instruction and maintenance of a rigid position against attempts to be moved.

I didn't believe that part of what she wrote at that time….this was about a year ago….the last week that I worked….I asked her to write down what she saw...

but after much self analysis…and many replays….that is becoming more and more a true statement that I can agree with…..

I can't handle people arguing with me….

I believe its the self preservation thing really kicking in…

I still have the ability to listen…for awhile to what you have to say….
I don't have any time available to listen to you telling me you don't see it my way……ouch…

my wife couldn't grasp this concept at all….she had to win every dialogue….

so…..this would leave me a total loser at that moment….but…she doesn't win that way either…..(I hope this helps someone)

Thank you, Craig. This is a wonderful message for supervisors everywhere. I'm sure the thought that one of their staff could have dementia scares the living daylights out of them. They don't understand. I don't fully understand, but I'm learning.

Kate