An excerpt from A Caregiver’s Guide to Lewy Body Dementia, by Helen Buell Whitworth and James Whitworth.
Caregivers of a person with DLB, that is, dementia without movement problems, may believe that because there are fewer mobility issues, they will be able to keep their loved one at home indefinitely. This is not necessarily so. Other issues can make home care impractical or even unsafe.
Early in her illness, Anique begged me to promise I’d never put her in a nursing home. At that time, I had no hesitation making such a promise. She had mental problems, but physically she was fine, and I didn’t see why this wouldn’t continue. Then, in the last months of her illness, Anique became so delusional and combative that I couldn’t keep her at home, even with around the clock help. This decision was very difficult for me and it was even worse because Anique couldn’t understand why I wasn’t keeping my promise to her. But I had no choice. It just wasn’t safe. —Jim
Jim had unknowingly made a common caregiver’s mistake. He made a promise he couldn’t keep, and then Anique felt betrayed. She never forgave him. It is understandable that our loved ones will try to get us to promise to keep them at home. For them, it is bad enough to feel that they are losing control of their lives. To lose one’s home as well must seem intolerable. However, you are doing your loved one—and yourself—no favors if you make this often impossible-to-keep promise.
People are different. Our friend Bill dealt better with the future when he knew what to expect. If your loved one is like this, hopefully you are reading this early in his disease. As soon after the diagnosis as possible, while he is still able to reason, sit down together and discuss the future. Talk about the possibility that the time may come when you will not be able to care for him safely. Discuss alternative plans for care. Have him participate in the choice of a facility, or, if that isn’t possible, discuss what about a care facility is most important to him. For example, is an outside space high on his list of priorities or simply nice? Caregivers report that later, when difficult choices are necessary, their loved ones accept better those decisions they once discussed—even when they no longer remember doing so.
Other people are like Anique. They see discussing the future and the challenges it may hold as an acceptance of the unacceptable. They may ask you to promise to keep them at home, “no matter what.” Do not set them, and yourself, up for future pain. A decision for residential care will be difficult enough, even if it is quite necessary. However, your loved one will be more accepting of the decision if they aren’t holding onto a promise that was impossible to keep, and you will feel less guilty. That sense of guilt harms not only you but your loved one. They can sense it and will then feel even more justified in their anger at you for “betraying them.”
If Anique had had Alzheimer’s disease she would never have remembered that promise. But with LBD, some memories last—and for Anique that promise was one she never forgot. Of course, what didn’t last was her ability to make rational judgments.
Never make a promise you cannot keep. “I’ll keep you at home as long as I safely can” is the most you should promise. No matter what your health or your loved one’s condition is now, either can change quickly and it will not be safe to care for your loved one at home.