Let’s face it. Alzheimer’s is a terrifying disease. None of us wants to be faced with the prospect of losing our memory, our ability to communicate or to function independently—especially when the disease currently has no great treatments or any cure.
So when your loved one receives the A-word diagnosis—particularly if he or she is still cognitively competent enough to understand the implications—it’s only natural to want to avoid the subject.
But if you pretend that everything is normal when it isn’t or avoid serious discussions with your loved one about Alzheimer’s, you can actually do everyone involved a disservice. Why? When you don’t name the truth, you foreclose your loved one’s opportunity to respond and process what’s really happening, as well as state preferences for future care.
You also foreclose both your own and your loved one’s need to be able express feelings about what’s happening, hard as the discussion may be. Even when news is difficult, your loved one has a right to be treated as an adult and included in conversations about his or her care.
Based on our years of experience helping families in this situation, we’ve learned that individuals with Alzheimer’s understand a lot more than they may be able to acknowledge, including conversations in “code” that take place when they are present. Better to discuss the truth, kindly and openly, than to speak above or around the person most directly affected.
Living with Alzheimer’s, as it advances, is deeply upsetting, frustrating, annoying, exhausting—stressful for everyone involved. You all need support. The best way to clarify the reality of the situation is to speak honestly. When sharing a difficult diagnosis, expect your loved one to need to grieve and work through the news, however he or she can. Then you’ll all have a better chance to move forward, together, to ensure the best possible care.
President of Deborah Fins Associates, PC, since 1995, Deborah Liss Fins is a licensed independent clinical social worker and certified Aging Life Care™ manager. Drawing on more than 30 years of professional experience in aging life care management, DFA offers comprehensive assessments and planning, guidance in selecting appropriate care, help identifying resources for financial support and professional consulting. Please contact us to set up a complimentary initial telephone consultation.
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