In a recent support group the question about what to tell a loved one after they've been diagnosed?
What should I say? Should I tell them at all? Jerry doesn't remember from one minute to the next. Does it do any good to tell him anyway? -- Linda
The group consensus was that yes, Linda should tell Jerry, but only as much as he needed to know at the moment. "You have a brain disease," they suggested saying. Don't go into detail; that will simply confuse them. "Personify the disease," another said, "Call it Lewy, and then when they have problems, like when they stumble, or can't do something that they used to be able to do, blame "Lewy." They know that something is wrong and they need something to blame instead of themselves.
When Ken was diagnosed, Ken took it better than I did! He hadn't felt "right" for a while and now he had an answer to why. He made him feel better about himself. It wasn't him, it was the disease.
My dad loves to joke. He always has. He'll say things like, "What did you say your name was? I can't remember." Then he'll laugh, because he actually does remember--this time.
My mother-in-law has Alzheimer's. She will repeat questions and then when she sees that my husband is getting impatient, she shrugs and says, "I have de-men-she-ia, you know."
When Brian flies off the handle and accuses me of awful things, he sometimes remembers later and feels really bad about it. I tell him it's OK. I know it was Lewy talking, not him.
Danny's hallucinations about bugs feel very real and scary to him. When I tell him that it's Lewy making trouble again, it calms him down. He still understands that the bugs aren't real, but I know that won't last. Even now, it helps to physically sweep all those nasty bugs out the door.
Our experience is that people in general tend to lean one of two ways. The above group are among those who want to know more about an unwanted diagnosis, or are at least willing to accept it. The next group are among those who tend to avoid the difficulties in their lives such as an unwanted diagnosis:
My mom won't accept that there is anything wrong with her. When I tell her that it's Lewy making her angry, she gets madder. "It isn't Lewy, it's you," she tells me. She's fine. I'm the one with the problem.
My wife was a professional cook. When she started making mistakes, she hid them from me but I figured out that something was wrong when I kept getting burn offerings for meals. Then I found a burned skillet in the garbage and I knew we had to go for help.
Carl still thinks he can drive. "I'm fine, he tells me. I've never had an accident. I don't know why you think I might now." I thought things would change because his driver's license was up for renewal. In our state, that means that at his age, he has to take a driving test and I was sure he'd fail. I've ridden with him. He really isn't safe! But that old Showtime kicked in and he did fine!
An almost universal dementia symptom helps this last group maintain their denial. Dementia gradually takes away a person's ability to judge how much they've changed. If a person is denial-prone, they likely won't see those first changes, the ones they could have recognized if their denial hadn't prevented it. But then, as the dementia increases, they can't see the changes. Thus, these people don't have the need for Lewy as their fall-guy. They are fine, thank you. You are the one with the problem!
To deal with a loved one's denial, use the same techniques you use to deal with other delusions: patience, empathy, acceptance and redirection. But no one said this was easy.
Take advantage of time-outs when you are frustrated. A few minutes out of their sight will give you a chance to regroup--and when you come back, they will probably have forgotten the whole episode.
Sometimes, you don't have the freedom to take your time. In situations like Carl's dangerous driving, look for someone else besides you to be the "bad guy." You have to live with your loved one; their doctor or a married child, for example, doesn't. (See these 3/24/17 and 3/27/17 for more about this.
Next week will finally start that series on support groups.
For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.