Alzheimer’s disease is the sixth leading cause of death in Illinois, and groups advocating for end-of-life planning say now is the time to start having conversations about your or your loved one’s wishes for care in the event of a diagnosis. The group Compassion and Choices has a “Dementia Values and Priorities” toolkit which lays out a step-by-step process for someone to map out their wishes for different stages of the disease. Amy Sherman, regional campaign and outreach manager for Compassion and Choices Illinois, said it is designed to empower people, so they can effectively communicate and advocate for the treatment they want.
“I think it’s a gift to yourself,” Sherman explained. “But it’s also a gift to your loved one who are going to be responsible for your well-being and for making difficult care decisions as Alzheimer’s disease or dementia progresses.”
She pointed out the instructions generated by the Dementia Values and Priorities toolkit can supplement an Advanced Directive, which names a health-care proxy, or someone who will make decisions for someone else’s care in the event they cannot. Daryl Isenberg is an Illinois resident whose mother went through a difficult end-of-life process with Alzheimer’s, and when her husband was later diagnosed, they documented his wishes for what level of care he would get at certain stages of the illness. Isenberg said he made it clear he did not want to prolong the dying process with dementia, and she added having those conversations took the weight off for both of them.
“That became documented,” Isenberg remarked. “And in his case, he was able to go through several years with minimal amounts of treatment and had a pleasant experience with the last years of his life.”
Kelly Rice oversees an Aging Services Program in Illinois, and said she learned how important it is to have those conversations, especially when her father was diagnosed with Alzheimer’s. She recounted even though they carefully documented his wishes, it was a struggle to make sure they were respected in the health-care setting. But she added knowing what your loved one wants makes a big difference.
“Once you have it kind of set, it also allows you to release that and then just be able to really focus on your relationship with that person and spending time with them, as opposed to kind of feeling anxious or having that unknown piece in the back of your mind,” Rice emphasized.