No one wants to have LBD or wants it for their loved one. The normal, even healthy, first response to such a diagnosis is denial. It protects the mind and provides some time to adjust. However, when it lasts past this adjustment period, it becomes destructive. Whatever you are denying—in this case, the LBD—is like a terrifying animal that has invaded your home.
You feel compelled to spend all your energy and resources hiding from it and protecting yourself from this unwelcome invasion. But this allows LBD to do just what you fear. It takes over your life, limiting it much more than need be. When denial is effective, it blocks you from doing anything to deal with the problem—there isn’t any problem after all. When it slips—and it always does, you feel the pain of what you perceive as an unbearable truth.
Release the denial and you’ll find that the truth IS bearable—not what you wanted, but definitely bearable. When you accept that Lewy is a part of the family, you release all the energy that had been used to hide from it. Now you can use that energy to tame the frightening, ferocious animal you perceived Lewy to be. No, it will never be the sweet little pet you wanted, but it can be tamed.
The taming starts with rephrasing. It’s not dementia. It’s a disorder. This is true and it sounds less scary. Yes, dementia is part of the disorder, but it is part of many disorders. It is progressive rather than degenerative. Both are true, but progressive reminds you that LBD’s progress is very slow and that your efforts can slow it down even more. It is treatable, rather than incurable. True there is no cure, but there are many ways to treat, or tame it; to slow it down, to make it less difficult. Keep on the lookout for new words to rephrase. Each one helps.
Using humor helps too. Choose laughter instead of embarrassment. When you or your loved one forgets or can’t do something that used to be easy to do, joke about it. Laugh with your loved one, not at them, of course. Like denial, embarrassment is stressful and holds you back. Humor releases tension for both of you and allows you to move on. It may not be easy to laugh or joke about something that feels so frightening and serious at first, but it becomes easier as you make humor a part of your “self-treatment.”
Talk about it. The more openly you can talk about the disorder, the tamer it becomes. When it is simply a fact of life that you can work around, it stops being a scary monster taking up so much of your emotional space. When you share what’s going on with you with others, you will discover that they are more interested than rejecting and more supportive than pitying.
Finally, become a seeker instead of an avoider. Make it your job to learn as much as you can about LBD. Find a support group; use the internet to research; ask questions. Again, the more energy you put into knowing and understanding this disorder that has invaded your family, the more you can tame it and maintain your quality of life.