In a recent blog, Emily talked about how her husband, Ben, was diagnosed with LBD.
I knew Ben had problems but I wanted them to be something curable so that we could get on with our once comfortable life. I just couldn't believe that the doctor was right. For one thing, there were still days at a time when he was practically normal. I thought that if Ben could be so normal even part of the time, then eventually, he'd get better, wouldn't he? -- Emily
Emily was in denial, which is a normal part of the process of accepting a life changing diagnosis--of moving from old expectations to accepting the changes that an unwelcome diagnosis heralds. Those occasional "good times" that Emily described are due to one of the defining symptoms of LBD: fluctuating cognition. A person can have days, or even weeks of apparent normality which can fuel a person's already present denial. However, the LBD symptoms always reappear. and the general progress of the disease over time is always downward.
It wasn't long though until I realized that Ben was getting worse, not better. Yes, he had his spells of alertness, but over time, I could see that his general condition was degenerating. Like it or not, I knew the doctor was right. -- Emily
Although there may be periods of awareness, the general progress will be downward. Because Emily is living with this daily, the severity of Ben's symptoms made it impossible for her to hide in her denial for long. Sometimes, a care partner can become stuck in their denial, especially when the symptoms are less physical and easier to ignore. This is often the case with dementia with Lewy bodies (DLB), where the thinking errors precede the physical problems. Ben's symptoms were strong enough that once Emily could see that he wasn't really improving over time, her denial gradually changed to acceptance. Denial can also last longer for people who have less physical contact with their loved ones.
Our daughter, Ariel, lives in a different state and flies in for quick visits several times a year. "Dad seems just fine to me," she told me. "He's a little slower, but that's all." And when she was around he really was more alert. -- Emily
When Ariel came to visit, Ben went into Showtime, a totally involuntary form of fluctuating cognition that can appear in the presence of people who aren't around the person much but are still important to them. Showtime makes it easier for visiting relatives like Ariel to maintain their denial of a person's true condition.
Why is denial bad? Well, at first, it can actually be a good thing. It cushions you and gives you time to adjust. But when it goes on too long, it becomes a roadblock that makes life more difficult. It takes energy to maintain a denial, energy that could be used to learn how to adapt to the new realities. In fact, it keeps a person from seeing the need to adapt, and so they stumble along struggling to maintain the status quo when that is no longer a real option. When denial lasts for a long time, it usually takes a something drastic to cause a person to let go of it, a fall, an auto accident, or some other disaster.
In Emily's case, Ben's symptoms were strong enough that she had to let go of her denial before that happened and was able to move on. However, Ariel who only heard of them but didn't see them, kept hers and thus, was unable to give her mother the support she needed.
How can you help a person move out of denial? Sadly, denial is a lot like a delusion. In both cases, the person involved is stuck in their own reality and confrontations only make the situation worse. The difference is that trying to change a dementia-related delusion is futile. To some extent, that is also true with denial, but the difference is that the person in denial still has the ability to think--if you can get past their protective defenses and help them to do so.
As with delusions, you first have to support the person where they are--in their delusional denial. In other words, you must become their friend, not their enemy. If they have to defend their belief, you are lost before you begin. You don't have to believe them, but you do need to show that you accept their view. "Yes, I see where you are coming from. Maybe that's so," you might say.
Then you may be able to gently move them towards reality, "to gather a few more facts," you might suggest. This works best if you are willing to move with them, to make it "something we do together" such as going to the doctor or a support group, or even doing some research on the computer.
There, you can ask the questions that the person may be afraid to ask. Then, by playing devil's advocate and challenging the answers, you can reinforce your connection with them and likely, get some even more detailed answers.
Finally, make a point of accepting these answers with apparent reluctance. Mirroring the same reluctance, the person may be able to to begin letting go of their denial and start the move into acceptance.
If you are the one who is dealing with that unwanted diagnosis, you may be in denial and not know it. A good thing to do in this case is to consciously assume that you are experiencing some denial even though it may not feel that way at the time. (One aspect of denial is that the person truly doesn't recognize it in themselves!)
Give yourself a few days to get used to the idea of the changes to come. Then do a personal review. If you still believe that the diagnosis is wrong, what do you need to support that belief...or to change your mind?
Re-evaluate the events and symptoms that led to the diagnosis using any new information you have gathered. Then imagine that the person involved is someone else...someone you aren't connected to. Would you believe the diagnosis then? If so, what is keeping you from believing it now?
If you can see that it may be your fear of what is to come, then you are likely in protective denial. If you can accept this intellectually, you can probably move on to accept it emotionally.
Once a person lets go of their denial, they can begin the process of finding ways to keep life as normal as possible. One of those is to use the many benefits of support groups.
Next week, the final blog in this series: what to tell a loved one. The week after that will start a new series about 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.